It's a phenomenon that most people probably don't fully understand. But, I've heard it from lots of other parents. I've heard it from spouses. I've heard it from people themselves. So, I know that lots of people experience it.
Doctor crushes.
Now, let me start by saying, a doctor crush is in no way shape or form of a sexual nature. If you are truly attracted to a doctor, that's not what I'm talking about here. This is a whole different form of crushing.
It can be a male or female. Old. Young. Attractive. Or someone you find not so attractive. But, whatever happened with that doctor led you to get fluttery feelings every time you see them, talk about them, or think about them.
I have a few of them. Doctors who have gone above and beyond. The fellow who literally made the life saving call to check Shilo's thyroid numbers when she got very sick at a few weeks old. The developmental pediatrician who looked into issues with Abigail when she was really young and figured multiple things out. The doctor who delivered Asher. The list goes on and on for me.
And, a friend who's husband broke his neck felt this way about one of the doctors who cared for him. A friend who had a mass removed from her abdomen, talks about feeling this way. A parent who had a doctor step in and step up to prevent unnecessary interventions. A parent who stepped up and stepped in to make certain a child got a surgery that some doctors thought wasn't needed.
I find myself thinking about these doctors. Looking forward to the next appointment with them. Wanting to bring them gifts, and invite them over for dinner. I replay our conversations, and can't help but smile when I think of how they treated me, and my children.
For a while, I thought it was just me. And, that it was a little weird. Until I admitted it. Then, time after time, in conversation, someone else would describe something similar.
So here's a public declaration for those of you who didn't know this was a thing. And, here's a thank you to the doctors who are so great, that a phrase needed to be developed to describe the feelings they invoke. You make the world of navigating medical stuff a little more enjoyable.
Showing posts with label mastocytosis. Show all posts
Showing posts with label mastocytosis. Show all posts
Friday, March 25, 2016
Tuesday, July 9, 2013
busting out of boxes.
it's unbelievable. less than two months.
this little girl. the one learning to ride her bike.
she will turn five.
and start kindergarten.
i can't believe how amazing she is. riding her bike. tying her shoes. reading. writing. counting. playing with her sister. being a good friend. loving green beans, broccoli, brussel sprouts, kale, spinach, and asparagus. taking mint and basil leaves from my garden to eat.
she's not your typical five year old. and with each new skill, i am reminded, that labels don't tell any sort of story about a person. boxes can be busted out of. and littles can grow into more than we could ever imagine.
Friday, May 10, 2013
the big.
a lot of my post lately have been about shilo. she's in a stage of life where things are happening quickly, she's changing, and meeting new milestones. she's also has a lot more going on medically right now than abigail does. so to balance it, this post is dedicated to my big, and all her fabulousness.
we'll start with a few of my favorite recent anecdotes from her:
abigail holding two pieces of spinach:
'hey spinach.
hey what?
you have dip on your head.'
(laughter)
(talking about the civil war-and the pictures of abraham lincoln at connor prarie).
'do you know what a slave is?'
'no.'
'a slave is a person that someone else tries to own. they make them do things, whether they want to or not. and if they don't do it, they are mean to them.'
'you mean like when you tell me what to do?'
'that morning laura woke up. it was hot outside. it was cold outside. laura went outside and it was warm.'
(abigail 'reading on the banks of plum creek to herself)
'chickens don't have wings.'
'they do.'
'no they don't. i saw it on the computer.'
'i'm getting some special drinks for my retreat on friday. i'm going to spend the night with some of my friends from church.'
'why you going on a retreat?'
'sometimes mama's need to take a break. it will help me be a better mama.'
'you already take a break. you stay home everyday.'
'mama can you do this for me?'
'do what?'
'will you do this?'
'i'm not sure what you are wanting me to do.'
'me neither. (skips away).'
at 10:30 i hear a loud bang from the girl's bedroom. i go up to check, thinking abigail had fallen out of bed.
'abigail, why are you still awake? and what was the bang?'
'that was me climbing back in bed. i was looking out the window. i was trying to see the moon so i could know if it was big or little. it's going around the earth right now.'
stranger to shilo: 'hi (unintelligible baby talk).'
abigail: 'she can't hear you. she's deaf.'
'mama, could you move that knife off of the table, so i don't just climb right up, and play with it and cut my finger off?'
...or you could just choose not to touch it....
'pigs are made our of bacon.'
and i'll share a few of our favorite captured moments of abigail's.
that's life with our big. she makes us laugh a lot. she is full of energy and loves life.
we'll start with a few of my favorite recent anecdotes from her:
abigail holding two pieces of spinach:
'hey spinach.
hey what?
you have dip on your head.'
(laughter)
(talking about the civil war-and the pictures of abraham lincoln at connor prarie).
'do you know what a slave is?'
'no.'
'a slave is a person that someone else tries to own. they make them do things, whether they want to or not. and if they don't do it, they are mean to them.'
'you mean like when you tell me what to do?'
'that morning laura woke up. it was hot outside. it was cold outside. laura went outside and it was warm.'
(abigail 'reading on the banks of plum creek to herself)
'chickens don't have wings.'
'they do.'
'no they don't. i saw it on the computer.'
'i'm getting some special drinks for my retreat on friday. i'm going to spend the night with some of my friends from church.'
'why you going on a retreat?'
'sometimes mama's need to take a break. it will help me be a better mama.'
'you already take a break. you stay home everyday.'
'mama can you do this for me?'
'do what?'
'will you do this?'
'i'm not sure what you are wanting me to do.'
'me neither. (skips away).'
at 10:30 i hear a loud bang from the girl's bedroom. i go up to check, thinking abigail had fallen out of bed.
'abigail, why are you still awake? and what was the bang?'
'that was me climbing back in bed. i was looking out the window. i was trying to see the moon so i could know if it was big or little. it's going around the earth right now.'
stranger to shilo: 'hi (unintelligible baby talk).'
abigail: 'she can't hear you. she's deaf.'
'mama, could you move that knife off of the table, so i don't just climb right up, and play with it and cut my finger off?'
...or you could just choose not to touch it....
'pigs are made our of bacon.'
and i'll share a few of our favorite captured moments of abigail's.
 |
| showing off some moves. |
 |
| puddle jumping. |
 |
| after an evening storm. |
 |
| she brought me flowers. the one by itself is my favorite. |
 |
| trying rhubarb from our garden. |
 |
| we went to conner prarie. she is obsessed with her subonnet like ingalls girls wore. |
 |
| a spoonful of chocolate. a silly face. |
 |
| we swapped vest...and made our sassy face. |
 |
| have i ever mentioned how jealous i am of this hair? |
that's life with our big. she makes us laugh a lot. she is full of energy and loves life.
Friday, March 29, 2013
at the risk of sounding dramatic.
my big has a genetic disorder that is highly variable. it is also considered progressive. so i would like to start this post by saying, at this point, she is extremely mild. matter of fact, overall, she's a pretty typical 4-1/2 year old. nothing about her would stand out to the common onlooker.
we are thankful for this. we know quite a few others who are dealing with much bigger. much scarier. and who's variable has landed them on the more severe end of the spectrum. i do not take lightly that we are dealing with very little as far as nf goes.
that being said, i thought i would share our mri results. it's taken me a few days to process all of this, and really wrap my head around what i'm feeling.
big had her mri on tuesday. she rocked it. no really. she was so great the whole time. completely unphased by all going on, despite the fact that she does not remember the last one that took place two years ago. she woke up asking for french fries. when one has to be put to sleep, run through a machine, and has a picture taken of their brain, they get french fries. judge all you want.
and like always, despite the being told that results would come in two to three days, i called the next morning to hear them as soon as possible. great news. no brain tumors. not as great news, her mri was abnormal. she's fine. nothing huge. nothings scary. just an abnormality that is common in nf.
so here's where i may start to sound a little dramatic. forgive me. i'm just trying to learn to deal with a disorder that can be quite mean. two years ago in april, our big had her last mri. we had hoped to not have to do any again, ever. more realistically though, at least five years. some people do them annually even if their kids have nothing going on. we aren't into that. especially since her masto puts her at a much higher risk for an anaphylactic reaction to sedation. anyway, her last mri, clean. beautiful. everything inside looked as it should.
this mri. she had what are known as ubo's (unidentified bright objects) on her brain. they are mostly harmless. they have been linked to lower i.q.'s, learning disabilities, and behavioral issues common with nf (adhd). somewhere around 70% of people with nf have them. our daughter has them now. and this means, her nf is progressing.
it's a progressive disorder. it's unpredictable, and what she has going on now means nothing about what she will have going on in a year. but, i have to assume that most parents feels this way a little bit, we had hoped abigail's wouldn't progress.
i know. that sounds ridiculous. so now we are sitting here trying to calm ourselves back down and remember to be thankful for the day today. today, we do not think she has any tumors. and that's where we need to live. but those stupid ubo's. they're there. and they are another reminder that she has this stupid disorder, and that is gets worse over time. and whether big things, or small things, it will affect our daughter.
and so, i guess i will continue to sound dramatic for the time being, as i accept that we are going to continue to see things come up as a result of nf.
we are thankful for this. we know quite a few others who are dealing with much bigger. much scarier. and who's variable has landed them on the more severe end of the spectrum. i do not take lightly that we are dealing with very little as far as nf goes.
that being said, i thought i would share our mri results. it's taken me a few days to process all of this, and really wrap my head around what i'm feeling.
big had her mri on tuesday. she rocked it. no really. she was so great the whole time. completely unphased by all going on, despite the fact that she does not remember the last one that took place two years ago. she woke up asking for french fries. when one has to be put to sleep, run through a machine, and has a picture taken of their brain, they get french fries. judge all you want.
and like always, despite the being told that results would come in two to three days, i called the next morning to hear them as soon as possible. great news. no brain tumors. not as great news, her mri was abnormal. she's fine. nothing huge. nothings scary. just an abnormality that is common in nf.
so here's where i may start to sound a little dramatic. forgive me. i'm just trying to learn to deal with a disorder that can be quite mean. two years ago in april, our big had her last mri. we had hoped to not have to do any again, ever. more realistically though, at least five years. some people do them annually even if their kids have nothing going on. we aren't into that. especially since her masto puts her at a much higher risk for an anaphylactic reaction to sedation. anyway, her last mri, clean. beautiful. everything inside looked as it should.
this mri. she had what are known as ubo's (unidentified bright objects) on her brain. they are mostly harmless. they have been linked to lower i.q.'s, learning disabilities, and behavioral issues common with nf (adhd). somewhere around 70% of people with nf have them. our daughter has them now. and this means, her nf is progressing.
it's a progressive disorder. it's unpredictable, and what she has going on now means nothing about what she will have going on in a year. but, i have to assume that most parents feels this way a little bit, we had hoped abigail's wouldn't progress.
i know. that sounds ridiculous. so now we are sitting here trying to calm ourselves back down and remember to be thankful for the day today. today, we do not think she has any tumors. and that's where we need to live. but those stupid ubo's. they're there. and they are another reminder that she has this stupid disorder, and that is gets worse over time. and whether big things, or small things, it will affect our daughter.
and so, i guess i will continue to sound dramatic for the time being, as i accept that we are going to continue to see things come up as a result of nf.
Saturday, October 29, 2011
Cleveland news, and then on to something else.
So the news from Cleveland Clinic was that her tyrptaste level was normal (4.something ,with above 11 being abnormal, and above 20 being systemic masto-I think). She also did not have the c-kit mutation. This means, no bone marrow biopsy (woo hoo), she will likely outgrow it (woo hoo), and we still can't be sure if belly stuff is masto related or not. The doctor was still waiting on the slides from her tumor that was removed in April, and will call us back after he gets those and is able to put some more puzzle pieces together. We mostly are just elated for some good news.
Moving on....
Saturdays, in our house, usually consist of someone getting up with Abigail to take her potty, and then all three of us hanging out in our bed to be silly for a while. This morning was no different. Abigail steam rolled us, she tried to steal Papa's pillow, she gave me a couple accidental elbows to the kidneys. She also went and got a book to read to me. It's an old book, and a very simple one called 'My Red Umbrella.' The premise of the book is that a little girl has an umbrella, it begins to rain, all the animals come under it with her. It stops raining and they all leave. Boring really. So Abigail reads it to me today. She started with 'Once upon a time,' which is funny since we haven't read fairy tales, we don't do Disney movies, and I am unsure of where it came from. None the less I was giggling while she layed there reading it to me very seriously. The conversation that ensued afterwards though, was the icing on the cake.
Abigail-'Mama dere's a owl in dis book. Hew, I find it and show it to you. You hab to be caweful of owls.'
Me-'You have to be careful of owls? Why do you have to be careful of them?'
A-'Well a owl came and took my eye off. He took my umbwella too.'
M-'Oh my. What did you do?'
A-'I asked him nicewy to gib it back. He did. I put my eye back on, and him gabe me my umbwella too.'
I really love my daughter and her imagination. I am looking forward to all the upcoming stories that are forming in that little brain of hers.
Be careful of owls,
Moving on....
Saturdays, in our house, usually consist of someone getting up with Abigail to take her potty, and then all three of us hanging out in our bed to be silly for a while. This morning was no different. Abigail steam rolled us, she tried to steal Papa's pillow, she gave me a couple accidental elbows to the kidneys. She also went and got a book to read to me. It's an old book, and a very simple one called 'My Red Umbrella.' The premise of the book is that a little girl has an umbrella, it begins to rain, all the animals come under it with her. It stops raining and they all leave. Boring really. So Abigail reads it to me today. She started with 'Once upon a time,' which is funny since we haven't read fairy tales, we don't do Disney movies, and I am unsure of where it came from. None the less I was giggling while she layed there reading it to me very seriously. The conversation that ensued afterwards though, was the icing on the cake.
Abigail-'Mama dere's a owl in dis book. Hew, I find it and show it to you. You hab to be caweful of owls.'
Me-'You have to be careful of owls? Why do you have to be careful of them?'
A-'Well a owl came and took my eye off. He took my umbwella too.'
M-'Oh my. What did you do?'
A-'I asked him nicewy to gib it back. He did. I put my eye back on, and him gabe me my umbwella too.'
I really love my daughter and her imagination. I am looking forward to all the upcoming stories that are forming in that little brain of hers.
Friday, October 28, 2011
...and today she danced.
This week has been filled with the craziness that often accompanies Abigail being sick. Things started out looking like a stomach bug, she added in some photophobia (light sensitivity) and then continue to have intermittent vomiting even after she was 'better.'
The hard thing about the disorders that Abigail has, is not so much in the having them. It's in the not knowing when to write things off. Stomach virus, normal. Check. Second day lethargic,normal. Check. Photophobia, not normal, call the the opthalmologist. Reassurance, check. Vomiting once a day Wednesday and Thursday, despite being back to herself, not normal. Trip to the doctor, check.
I really have no idea what to think. I know I've said this close to 6 million times, but we have an amazing family doctor. She is so reassuring when I come in, and never seems annoyed. She agrees that there are some things we can't just 'write off' like you might with a typical child, because it's too high risk. So the thought is that the stomach virus Monday, caused a headache with photophobia (and it got better by Thursday some I'm guessing this is true). It also caused some inflammation and flare up in her belly from her GERD and masto belly issues, causing her to have the intermittent vomiting. If it's not better by Mondayish she will start an oral steroid to help calm down the inflammation. If things still aren't improving we will see a G.I. doctor. I REALLY don't want her scoped. So we are just continuing to pray it gets better.
She didn't get sick at all today, although it's not a fair assessment because she took benadryl this morning to prevent car sickness. And benadryl also helps tame mast cells. She also went all of Tuesday without getting sick.
However, this evening, she danced. She put on a dress up dress, and spent quite some time swaying and spinning. 'Watch Mama. Watch Papa.' 'Clap.' She seemed to be herself tonight.
I also have to end this post with some mad props to my husband. I woke up in the middle of the night with Abigail's stomach virus that I had caught. She was supposed to have a pulmanologist appointment today at Riley. It's an easy appointment, just a following up every few months to make certain asthma meds work. Jason got up this morning, went into work for about an hour, came home and took Abigail to Riley, brought her back and put her down for a nap, went back to work, came home and fixed her dinner, settled her in with some play-doh, and then went back to finish up everything at work. I am so thankful to have a wonderful, loving, and compassionate husband. I spent the whole morning on the couch watching netflix and drinking ginger ale. I took a nap. I am already feeling much better!! All because I was able to get the rest I needed to recover quickly.
I have some test results from Cleveland Clinic, and plan on doing a post on it tomorrow.
The hard thing about the disorders that Abigail has, is not so much in the having them. It's in the not knowing when to write things off. Stomach virus, normal. Check. Second day lethargic,normal. Check. Photophobia, not normal, call the the opthalmologist. Reassurance, check. Vomiting once a day Wednesday and Thursday, despite being back to herself, not normal. Trip to the doctor, check.
I really have no idea what to think. I know I've said this close to 6 million times, but we have an amazing family doctor. She is so reassuring when I come in, and never seems annoyed. She agrees that there are some things we can't just 'write off' like you might with a typical child, because it's too high risk. So the thought is that the stomach virus Monday, caused a headache with photophobia (and it got better by Thursday some I'm guessing this is true). It also caused some inflammation and flare up in her belly from her GERD and masto belly issues, causing her to have the intermittent vomiting. If it's not better by Mondayish she will start an oral steroid to help calm down the inflammation. If things still aren't improving we will see a G.I. doctor. I REALLY don't want her scoped. So we are just continuing to pray it gets better.
She didn't get sick at all today, although it's not a fair assessment because she took benadryl this morning to prevent car sickness. And benadryl also helps tame mast cells. She also went all of Tuesday without getting sick.
However, this evening, she danced. She put on a dress up dress, and spent quite some time swaying and spinning. 'Watch Mama. Watch Papa.' 'Clap.' She seemed to be herself tonight.
I also have to end this post with some mad props to my husband. I woke up in the middle of the night with Abigail's stomach virus that I had caught. She was supposed to have a pulmanologist appointment today at Riley. It's an easy appointment, just a following up every few months to make certain asthma meds work. Jason got up this morning, went into work for about an hour, came home and took Abigail to Riley, brought her back and put her down for a nap, went back to work, came home and fixed her dinner, settled her in with some play-doh, and then went back to finish up everything at work. I am so thankful to have a wonderful, loving, and compassionate husband. I spent the whole morning on the couch watching netflix and drinking ginger ale. I took a nap. I am already feeling much better!! All because I was able to get the rest I needed to recover quickly.
I have some test results from Cleveland Clinic, and plan on doing a post on it tomorrow.
Tuesday, October 11, 2011
The run down...
So after some chaos, stress, and an extra night in Cleveland we got to talk to an expert in the area of Mastocytosis. I'll give you the run down of what the last few days looked like and where we are with all of it.
We drove to Cleveland Sunday night and stayed in a hotel. Monday morning we got a phone call that the doctor we are scheduled to see had hit a deer on the way to work and needed to reschedule. We kindly explained that we were already in Cleveland and needed to see someone. However, our big dilemma is that the doctor we were supposed to see had masto listed as a specialty and none of the other doctors. The lady I talked to continually reassured me that all of the doctors are capable of handling the same things. So I relented and we made an appointment with someone else.
So we ate breakfast at the hotel, and headed over to this awesome park called Preston's Hope. We spent lots of time playing, and left with plenty of time to get to the clinic and eat lunch before the appointment. Well, accept that all of the roads in Cleveland Y into three roads, turn into a different road, and we ended up taking much longer to get there.
We pulled in the parking garage and drove in circles going up and up and up. We parked at which point Abigail let us know she was going to get (car) sick. So by the time we got inside she had puked, we only had enough time to get to the appointment, and we were all grumpy and hungry. Deep breaths. Deep breaths.
We do all the check-in stuff and the doctor comes in. He is an amazing doctor. He was kind, knowledgeable, and extremely helpful. He knew very little about masto, and actually shared the other doctor we had an appointment with wasn't really an expert either. So two hours later we leave his office to go eat something. At this point we are waiting to hear if yet another doctor will see us today, and if we can stay at the Ronald McDonald house for the night.
So after lunch we find out that we were on our own for a place to stay, and that if we stayed we still weren't guaranteed an appointment today. We contacted a friend's parents and decided to stay with them in hopes of meeting with another doctor who could answer questions and point us in the right direction.
After a much better night of sleep, and people familiar with the area who could explain how to get where we were going (plus a personal phone call with the original doctor we were scheduled to see yesterday) we got to see an expert in mastocytosis today.
It was SO worth the extra night. He answered tons of questions, explained things very thoroughly, and gave us a plan of action as to where to go from here. Our biggest questions at this point are whether Abigail's masto is cutaneous (only on her skin and she will likely outgrow it) or if some of her belly issues are from systemic masto. I knew there were a couple of blood test that some people have done to check a tryptaste level, and to see if there is a mutation in the c-kit in the mast cells. (You don't need to understand that, just helpful for people who are familiar with masto already). So he said that we would check these two things and that would help us decide if further testing needed done. He is also going to look at the sample slides from her tumor she had removed from her leg. So in essence we understand a little more, but still don't know anything definitive about Abigail.
However, we are extremely grateful that after two crazy long days we are on our way to getting some more answers. Abigail is in bed, and we are resting, as well as looking forward to a night in our own bed. I will do another post after we get more test results back. At this point there is no talk of seeing a gastro doctor, no bone marrow biopsy scheduled (her results we are waiting on will determine if she needs one or not), and no need to limit any foods!
You learn a lot when dealing with unpredictable disorders. The biggest lesson I have learned thus far is definitely that you enjoy the here and now. So we are celebrating not seeing a gastro doctor, no biopsy needed right now, and not limiting her food. If things change we will roll with them as they come, but for now, we are thankful.
We drove to Cleveland Sunday night and stayed in a hotel. Monday morning we got a phone call that the doctor we are scheduled to see had hit a deer on the way to work and needed to reschedule. We kindly explained that we were already in Cleveland and needed to see someone. However, our big dilemma is that the doctor we were supposed to see had masto listed as a specialty and none of the other doctors. The lady I talked to continually reassured me that all of the doctors are capable of handling the same things. So I relented and we made an appointment with someone else.
So we ate breakfast at the hotel, and headed over to this awesome park called Preston's Hope. We spent lots of time playing, and left with plenty of time to get to the clinic and eat lunch before the appointment. Well, accept that all of the roads in Cleveland Y into three roads, turn into a different road, and we ended up taking much longer to get there.
We pulled in the parking garage and drove in circles going up and up and up. We parked at which point Abigail let us know she was going to get (car) sick. So by the time we got inside she had puked, we only had enough time to get to the appointment, and we were all grumpy and hungry. Deep breaths. Deep breaths.
We do all the check-in stuff and the doctor comes in. He is an amazing doctor. He was kind, knowledgeable, and extremely helpful. He knew very little about masto, and actually shared the other doctor we had an appointment with wasn't really an expert either. So two hours later we leave his office to go eat something. At this point we are waiting to hear if yet another doctor will see us today, and if we can stay at the Ronald McDonald house for the night.
So after lunch we find out that we were on our own for a place to stay, and that if we stayed we still weren't guaranteed an appointment today. We contacted a friend's parents and decided to stay with them in hopes of meeting with another doctor who could answer questions and point us in the right direction.
After a much better night of sleep, and people familiar with the area who could explain how to get where we were going (plus a personal phone call with the original doctor we were scheduled to see yesterday) we got to see an expert in mastocytosis today.
It was SO worth the extra night. He answered tons of questions, explained things very thoroughly, and gave us a plan of action as to where to go from here. Our biggest questions at this point are whether Abigail's masto is cutaneous (only on her skin and she will likely outgrow it) or if some of her belly issues are from systemic masto. I knew there were a couple of blood test that some people have done to check a tryptaste level, and to see if there is a mutation in the c-kit in the mast cells. (You don't need to understand that, just helpful for people who are familiar with masto already). So he said that we would check these two things and that would help us decide if further testing needed done. He is also going to look at the sample slides from her tumor she had removed from her leg. So in essence we understand a little more, but still don't know anything definitive about Abigail.
However, we are extremely grateful that after two crazy long days we are on our way to getting some more answers. Abigail is in bed, and we are resting, as well as looking forward to a night in our own bed. I will do another post after we get more test results back. At this point there is no talk of seeing a gastro doctor, no bone marrow biopsy scheduled (her results we are waiting on will determine if she needs one or not), and no need to limit any foods!
You learn a lot when dealing with unpredictable disorders. The biggest lesson I have learned thus far is definitely that you enjoy the here and now. So we are celebrating not seeing a gastro doctor, no biopsy needed right now, and not limiting her food. If things change we will roll with them as they come, but for now, we are thankful.
Wednesday, October 5, 2011
Masto appointment.
I mentioned a few post back that we would be having an appointment with a masto specialist. It is rapidly approaching (this coming Monday-the 10th). I thought I would try to fill you in a little bit on thoughts on it and some ways you can be praying.
Mastocytosis is an extremely rare disorder. Less than 200,000 in the United States have it. So there isn't tons of information available. Thus far, for Abigail, we know that she has it dermatologically, and that she has had a mastocytoma tumor from it. We suspect that her GERD (gastro reflux) is from it, as well as some other belly issues she has, but have never had this 100% nailed down.
So the doctor we will be seeing is a pediatric oncologist and hematologist. I don't know what all to expect from the appointment. I am suspecting that we may end up with a referral to a gastro doctor. I had wanted to avoid this because it will likely mean being put under again to be scoped. However, I also know if Abigail is have mast cell issues in her belly we probably need to know and react accordingly.
My second thing that I am a little uneasy about, is that sometimes they do bone marrow biopsies on masto patients. I am not going to allow myself to be bogged down with all the reasons they do this, and I'm not certain that they will or will not do this for Abigail. But none the less, the thought of a bone marrow biopsy in and of itself is a little overwhelming.
My third 'fear' is dieting restrictions. Abigail has a nut allergy (peanuts and tree nuts) but we have been able to manage this. Some people with mast cell disorders have issues triggered by foods with high histamine levels. (seriously if you didn't go look at this list of high histamine foods, you should.) I think pretty much every one of Abigail's favorite foods is on there. Although we definitely indulge sometimes, we eat, overall, really healthy. We eat very little meat, and do lots of whole foods as well as organic stuff. The idea of having to limit lots of things from a little girl who loves brussel sprouts, eats tomatoes straight out of the garden, and thinks fruit is dessert is disheartening to me. I would absolutely be willing to do it to keep her healthy. It's just a hard thing to think about.
Overall I am just ready to do this appointment and figure stuff out. But like with so many other medical things, it's hard to suppress some of those 'what if's' that like to swirl around in my brain. I have taken it to God over and over again, not allowing the fears to swallow my joy. It's a battle though. Mastocytosis has so many unknowns and is completely unpredictable (not much unlike NF really). So in reality I have no idea what to think or expect. With NF I can say, Abigail will likely get tumors. Where and when isn't known, but we know what we are up against. Masto ranges from the dermal kind that can be outgrown, some that causes anaphylaxis over and over with no triggers (I can't say that I haven't lied in bed before wondering what would happen if she went into anaphylaxis in the middle of the night and we didn't know) all the way to mast cell leukemia. I am truly hoping to hear that hers is still only dermal and there is some possibility that she could outgrow it. However, I want to be prepared to hear what I need to hear to take care of my daughter.
So if you all would once again join us in prayer as we get ready to learn more about our daughter's masto I would be extremely grateful. I will update sometime after the appointment. It is out of state, and Jason will be making the trip with me. We have also found a really fun (free) park nearby that we are looking forward to checking out with Abigail. Mostly though I want my days before the appointment to be filled with joy and not fear, and I want to call on Christ when I start to feel scared or overwhelmed.
'The Spirit you received does not make you slaves, so that you live in fear again; rather, the Spirit you received brought about your adoption to sonship. And by him we cry, “Abba, Father.”'
Crying out to my Abba, Father,
Mastocytosis is an extremely rare disorder. Less than 200,000 in the United States have it. So there isn't tons of information available. Thus far, for Abigail, we know that she has it dermatologically, and that she has had a mastocytoma tumor from it. We suspect that her GERD (gastro reflux) is from it, as well as some other belly issues she has, but have never had this 100% nailed down.
So the doctor we will be seeing is a pediatric oncologist and hematologist. I don't know what all to expect from the appointment. I am suspecting that we may end up with a referral to a gastro doctor. I had wanted to avoid this because it will likely mean being put under again to be scoped. However, I also know if Abigail is have mast cell issues in her belly we probably need to know and react accordingly.
My second thing that I am a little uneasy about, is that sometimes they do bone marrow biopsies on masto patients. I am not going to allow myself to be bogged down with all the reasons they do this, and I'm not certain that they will or will not do this for Abigail. But none the less, the thought of a bone marrow biopsy in and of itself is a little overwhelming.
My third 'fear' is dieting restrictions. Abigail has a nut allergy (peanuts and tree nuts) but we have been able to manage this. Some people with mast cell disorders have issues triggered by foods with high histamine levels. (seriously if you didn't go look at this list of high histamine foods, you should.) I think pretty much every one of Abigail's favorite foods is on there. Although we definitely indulge sometimes, we eat, overall, really healthy. We eat very little meat, and do lots of whole foods as well as organic stuff. The idea of having to limit lots of things from a little girl who loves brussel sprouts, eats tomatoes straight out of the garden, and thinks fruit is dessert is disheartening to me. I would absolutely be willing to do it to keep her healthy. It's just a hard thing to think about.
Overall I am just ready to do this appointment and figure stuff out. But like with so many other medical things, it's hard to suppress some of those 'what if's' that like to swirl around in my brain. I have taken it to God over and over again, not allowing the fears to swallow my joy. It's a battle though. Mastocytosis has so many unknowns and is completely unpredictable (not much unlike NF really). So in reality I have no idea what to think or expect. With NF I can say, Abigail will likely get tumors. Where and when isn't known, but we know what we are up against. Masto ranges from the dermal kind that can be outgrown, some that causes anaphylaxis over and over with no triggers (I can't say that I haven't lied in bed before wondering what would happen if she went into anaphylaxis in the middle of the night and we didn't know) all the way to mast cell leukemia. I am truly hoping to hear that hers is still only dermal and there is some possibility that she could outgrow it. However, I want to be prepared to hear what I need to hear to take care of my daughter.
So if you all would once again join us in prayer as we get ready to learn more about our daughter's masto I would be extremely grateful. I will update sometime after the appointment. It is out of state, and Jason will be making the trip with me. We have also found a really fun (free) park nearby that we are looking forward to checking out with Abigail. Mostly though I want my days before the appointment to be filled with joy and not fear, and I want to call on Christ when I start to feel scared or overwhelmed.
'The Spirit you received does not make you slaves, so that you live in fear again; rather, the Spirit you received brought about your adoption to sonship. And by him we cry, “Abba, Father.”'
Crying out to my Abba, Father,
Thursday, September 1, 2011
the end....
See this little girl playing the violin?
Or making the basket like she learned in ballet?
Do you notice her climbing that ladder all by herself?
And celebrating her third birthday with some friends?
Do you see her beautiful smile?
Yeah, this beautiful little girl right here. She is no longer eligible for special needs services. You can reread that if you want. She officially aged out of early intervention today (the day before her third birthday). Today was her last therapy session. She was assessed by the school system and found to be on target for where she needs to be at her age! Sounds to me like we will just continue to play instruments, make baskets and do ballet, climb at the park, and play in the bubbles. Because we don't have to do anything else we need to be doing!!
Celebrating the end,
Wednesday, August 24, 2011
How do I say thank you?
Around this time last year I took Abigail potty one day and noticed a dark area on her right leg. I immediately asked Jason if he had ever noticed it before and he said he wasn't sure. So I filed it away under 'things to keep an eye on.' And keep an eye I did. When a small mass turned up underneath the area I felt like I knew what we were dealing with. And when we started seeing pain and itching, I knew before we ever even made that drive to have an MRI done that there was a tumor in my daughter's leg. This is the nature of NF.
And this year, well, things are different. Do I still worry from time to time that she has a tumor somewhere? Absolutely. I sometimes feel like I am just holding my breath and waiting for the world to be rocked again. But I also feel grateful.
I have tried over and over and over again to write a beautiful heartfelt thank you to everyone who donated money, posted our badge on their blog, and posted and re-posted the fundraiser for Abigail's surgery on facebook. But I can't ever quite find the right words to portray how I feel. I doubt that this blog post will even really come close to giving you a glimpse of how thankful I am. But I am going to try.
In a week and a half my little girl will turn three. Imagine, if you will, gearing up for your child's birthday. It is a time filled with joy, excitement, remembering and recounting the past. Then imagine knowing that inside of that same child you are celebrating is something small, that is growing, and has the possibility of robbing your child of walking, running, dancing, climbing, and even life under some circumstances. Despite the festivities, and even the smile you put on your face, there is a shadow of fear that covers over the celebration. This was where we were last year. We had not yet had the MRI confirm the tumor, but we knew.
One year later, our daughter's body has a beautiful scar to remind me of the second chance she was given. Sometimes I wonder if she will grow to think the scar is ugly or unattractive. To me though, it speaks loudly of other people's generosity and love that they poured out. It tells of a God who cares so much for His children that He would move the hearts of people all over the world to make certain a little girl is given a chance to enjoy being a child. It tells the story of how our daughter, doomed to 'wait and see' if her tumor grows larger and an unknown outcome, given the gift of a surgery, paid for completely by friends, acquaintances, and more so, strangers.
So thank you. Your gifts mean more to me than I can put into words here. I will leave you with a video of Abigail dancing at church on Sunday. I'm not certain that there is a Sunday that passes where her being able to dance escapes my mind as nothing less than the beautiful miracle it is.
The other little girl you see a lot of is Abigail's best friend 'Ednie.' Yes, the aisles at church are pretty much filled with little kids dancing every week, and yes, my daughter raises her hands to worship a few times in the video. :)
Thanks so much to all of you who posted about her surgery, donated, prayed, and walked through all of this with us.
And this year, well, things are different. Do I still worry from time to time that she has a tumor somewhere? Absolutely. I sometimes feel like I am just holding my breath and waiting for the world to be rocked again. But I also feel grateful.
I have tried over and over and over again to write a beautiful heartfelt thank you to everyone who donated money, posted our badge on their blog, and posted and re-posted the fundraiser for Abigail's surgery on facebook. But I can't ever quite find the right words to portray how I feel. I doubt that this blog post will even really come close to giving you a glimpse of how thankful I am. But I am going to try.
In a week and a half my little girl will turn three. Imagine, if you will, gearing up for your child's birthday. It is a time filled with joy, excitement, remembering and recounting the past. Then imagine knowing that inside of that same child you are celebrating is something small, that is growing, and has the possibility of robbing your child of walking, running, dancing, climbing, and even life under some circumstances. Despite the festivities, and even the smile you put on your face, there is a shadow of fear that covers over the celebration. This was where we were last year. We had not yet had the MRI confirm the tumor, but we knew.
One year later, our daughter's body has a beautiful scar to remind me of the second chance she was given. Sometimes I wonder if she will grow to think the scar is ugly or unattractive. To me though, it speaks loudly of other people's generosity and love that they poured out. It tells of a God who cares so much for His children that He would move the hearts of people all over the world to make certain a little girl is given a chance to enjoy being a child. It tells the story of how our daughter, doomed to 'wait and see' if her tumor grows larger and an unknown outcome, given the gift of a surgery, paid for completely by friends, acquaintances, and more so, strangers.
So thank you. Your gifts mean more to me than I can put into words here. I will leave you with a video of Abigail dancing at church on Sunday. I'm not certain that there is a Sunday that passes where her being able to dance escapes my mind as nothing less than the beautiful miracle it is.
The other little girl you see a lot of is Abigail's best friend 'Ednie.' Yes, the aisles at church are pretty much filled with little kids dancing every week, and yes, my daughter raises her hands to worship a few times in the video. :)
Thanks so much to all of you who posted about her surgery, donated, prayed, and walked through all of this with us.
Tuesday, August 2, 2011
That moment.
I have come a long way since that first time we heard about NF. My fears rarely overtake me anymore. I can get through the day without NF being a thought in my head most days. And even on the days I think about it, it is much less overwhelming.
Every now and then I have a moment where it all smacks me in the face at once. The feeling doesn't generally linger long, but just enough to make me feel like shuttering a little. The other morning as I was getting Abigail dressed I noticed a new cal spot on her and some more freckling. In the grand scheme of thing, these mean nothing more than 'she has this disorder.'
But for some reason that morning I was sitting in a doctor's office at Riley again watching the resident counting her cals. I was listening to him tell us this big word over and over again, and talk about tumors. I was hearing him try to reassure us that she would be fine, but feeling like I just needed to get the hell out of there. The moment passed quickly, but took me a few days to completely shake that feeling of dread and terror that comes over me when I remember hearing neurofibromatosis for the first time.
In all of those moments though I keep coming back to knowing that God has something specific planned both for Abigail, and for us being Abigail's parents. Her coming to be our daughter just lined up so perfectly that there can be no other explanation. And we had sat and discussed, read, and researched numerous special needs before Abigail was born. We talked about HIV, Down's syndrome, cerebral palsy, and drug and alcohol exposure. We discussed autism and on down the list of things I have dealt with as I have worked with numerous people with special needs. Never once did NF come up. Neither of us had ever even heard of it.
So while I wasn't surprised that we somehow managed to end up with a kiddos with lots of special medical needs. I had this nagging feeling that the having a child with NF was something that God lined up for some unknown reason. I wasn't sure if we would ever even find out here on earth.
Last night I sat next a little girl on the couch at the home of a family from our church. This is a large family (I think they have 9 kiddos at home) who had just had a baby. I had brought a meal and was holding their new sweet little one. I asked the little girl about the band-aid on her arm. She replied very nonchalantly she had an MRI that day. When I asked why she told me she had a bump on her head, and then proceeded to pull up her shirt to show me the 'brown spots' that she also had.
I nearly fell off the couch (and had to quickly remind myself I was holding a baby). I didn't know what to ask next because I wasn't sure how much the family new. The mom proceeded to tell me that the dad has been diagnosed with something called neurofibromatosis a few months ago.
I knew immediately in my heart of hearts that we were chosen for Abigail to walk through NF hand and hand with this family.
In a church of around 100 people, there are two families who are dealing with a disorder that is statistically 1 in every 2500-3000 people. Unbelievable. I thought again about sitting in that doctor's office a little over two years ago. This time it didn't bring that sense of dread and doom though. This time it brought that feeling of seeing God's hand at work in the lives of every last person, lining things up perfectly to bring himself the glory!
Enjoying seeing things from a different view,
Saturday, May 21, 2011
Mastocytosis
I was waiting to post this past week because we were supposed to be getting some biopsy results from some skin taken from one of Abigail's mysterious blistery bumps. But alas, they didn't come in on time, so we wait.
It's been a weird week emotionally and I'm trying to come to grips with a few things. I have been trying to do a bit more research on mastocytosis. Late last summer we heard the word for the first time. I researched a bit. We saw a specialist (she sucked) and she said she didn't think she had it. We decided not to pursue anything more unless we saw more issues.
Fast forward just a tiny bit, and Abigail is diagnosed with GERD, something that could be caused by her low tone, mastocytosis, or just something that some people have. Never think twice about it.
Then after the removal of the tumor in April we hear that mast cells are the issue again. We aren't certain what that even means, soooooo....we make an appointment with a new specialist. And warm weather hits.
We are back where we were last summer. Abigail has lots of little bumps, some big bumps, they all itch, and unlike the usual 'allergy' things people get they all have blisters on them. She has no runny nose. No itchy eyes. No sneezing. Just itchy blisters all over her little belly, back, arms, and legs (and one on her face).
So I begin to research again. I read about masto. I talk to some other people with it. And I fight the words I keep hearing. Mastocytoma=mast cell disorder even if we don't see any other signs. And the spots all over her, look like a mast cell flare up. And the fact that they came just weeks after we had to increase her medicine because her GERD was causing problems, looks like a mast cell flare up.
So Thursday I began the descent into a fit of rage. I keep telling myself that it's perhaps a coincidence. Maybe the biopsy will come back as something other than mast cells. Maybe I'll be surprised. Then I'm interrupted by the need to give my daughter more benedryl to keep her from scratching until she bleeds.
I remember this emotion (all though much more intense it seemed) when we first learned about NF. It's the 'denial' aspect of trying to work through something new. It wells up from somewhere deep inside, and I believe that if I can just concentrate hard enough that I can will this to not be true. I can pretend away the facts and go on living.
But reality has a small grip on me during these thoughts, and I know for the sake of my daughter I must move forward and get answers.
And when wakes up from nap, I turn on some Nichole Nordeman on Pandora, and we dance until all I can do is enjoy myself. We dance until we are both laughing and I am full of joy. We dance until I realize, that even if she has another stupid label coming, that for now all is right in the world.
It's been a weird week emotionally and I'm trying to come to grips with a few things. I have been trying to do a bit more research on mastocytosis. Late last summer we heard the word for the first time. I researched a bit. We saw a specialist (she sucked) and she said she didn't think she had it. We decided not to pursue anything more unless we saw more issues.
Fast forward just a tiny bit, and Abigail is diagnosed with GERD, something that could be caused by her low tone, mastocytosis, or just something that some people have. Never think twice about it.
Then after the removal of the tumor in April we hear that mast cells are the issue again. We aren't certain what that even means, soooooo....we make an appointment with a new specialist. And warm weather hits.
We are back where we were last summer. Abigail has lots of little bumps, some big bumps, they all itch, and unlike the usual 'allergy' things people get they all have blisters on them. She has no runny nose. No itchy eyes. No sneezing. Just itchy blisters all over her little belly, back, arms, and legs (and one on her face).
So I begin to research again. I read about masto. I talk to some other people with it. And I fight the words I keep hearing. Mastocytoma=mast cell disorder even if we don't see any other signs. And the spots all over her, look like a mast cell flare up. And the fact that they came just weeks after we had to increase her medicine because her GERD was causing problems, looks like a mast cell flare up.
So Thursday I began the descent into a fit of rage. I keep telling myself that it's perhaps a coincidence. Maybe the biopsy will come back as something other than mast cells. Maybe I'll be surprised. Then I'm interrupted by the need to give my daughter more benedryl to keep her from scratching until she bleeds.
I remember this emotion (all though much more intense it seemed) when we first learned about NF. It's the 'denial' aspect of trying to work through something new. It wells up from somewhere deep inside, and I believe that if I can just concentrate hard enough that I can will this to not be true. I can pretend away the facts and go on living.
But reality has a small grip on me during these thoughts, and I know for the sake of my daughter I must move forward and get answers.
And when wakes up from nap, I turn on some Nichole Nordeman on Pandora, and we dance until all I can do is enjoy myself. We dance until we are both laughing and I am full of joy. We dance until I realize, that even if she has another stupid label coming, that for now all is right in the world.
Tuesday, November 23, 2010
What do you ask for?
As I sat reading in Psalms this afternoon I could feel my heart stirring. I love the way David writes so truthfully; how his emotions are so much like mine floating up and down with each new twist and turn of events. I also relate because I express my thoughts and emotions much better by writing them down.
After I layed the Bible down I sat there thinking and trying to pray. I say trying because with each fleeting thought all I could come back to was 'I don't know what to pray.' I don't know what to ask for on behalf of my sweet girl going into tomorrow. Peace, comfort, and mercy are almost always at the front of it. But beyond that what else do I ask for.
I can pray that they don't find anything, but in reality they might. I can pray that if they find something God is able to be glorified by our response as well as Abigail's response throughout her lifetime. I can pray for answers.
I then sat and thought about what do I ask for my friend's children with special needs? I generally pray whatever it is they ask for; healing, comfort, peace, and so on. But what if I ask for the wrong thing for my baby. What if I should be asking only for the strength to walk through, but I am asking for answers. And certainly there are no "wrong" prayers. God wants us to ask for things.
As I sat there thinking though, the sweet little prayers that Abigail prays flowed through my mind. They are often something like this, "Jeyah, Guy, boo-boo, help. Sarah, boo, ahhh! Mamal atar, cupcake. Noo noo ding ding. Amen."
I doubt very much of that made sense to any of you. But as her parent, I know what she is trying to say. I know what she is asking for, and I love that she just tells Jesus things. Sometimes her prayers are even more simple than that. I was then reminded of yesterday morning. We woke up to rain. Abigail loves to go outside when it's raining. By the time we ran our errand yesterday morning it had stopped. She asked me if I could make it rain and thunder. I responded by telling her that mama couldn't do it, but she could ask Jesus. She stopped as we were walking into the store and said, "Jeyah, rain, thunder. Amen." Last night as I was sitting on the couch and it began raining Jason looked at me and said, "Is that thunder?" I couldn't help but find the beauty in it. My sweet little girl asked Jesus to make it rain and thunder during a time of year where we are often seeing snow. And it did just that.
So after thinking all of this through I decided to try to pray more like my daughter. My prayer going into tomorrow is simply this, "Jesus, Abigail. Amen."
What do you pray for you children?
After I layed the Bible down I sat there thinking and trying to pray. I say trying because with each fleeting thought all I could come back to was 'I don't know what to pray.' I don't know what to ask for on behalf of my sweet girl going into tomorrow. Peace, comfort, and mercy are almost always at the front of it. But beyond that what else do I ask for.
I can pray that they don't find anything, but in reality they might. I can pray that if they find something God is able to be glorified by our response as well as Abigail's response throughout her lifetime. I can pray for answers.
I then sat and thought about what do I ask for my friend's children with special needs? I generally pray whatever it is they ask for; healing, comfort, peace, and so on. But what if I ask for the wrong thing for my baby. What if I should be asking only for the strength to walk through, but I am asking for answers. And certainly there are no "wrong" prayers. God wants us to ask for things.
As I sat there thinking though, the sweet little prayers that Abigail prays flowed through my mind. They are often something like this, "Jeyah, Guy, boo-boo, help. Sarah, boo, ahhh! Mamal atar, cupcake. Noo noo ding ding. Amen."
I doubt very much of that made sense to any of you. But as her parent, I know what she is trying to say. I know what she is asking for, and I love that she just tells Jesus things. Sometimes her prayers are even more simple than that. I was then reminded of yesterday morning. We woke up to rain. Abigail loves to go outside when it's raining. By the time we ran our errand yesterday morning it had stopped. She asked me if I could make it rain and thunder. I responded by telling her that mama couldn't do it, but she could ask Jesus. She stopped as we were walking into the store and said, "Jeyah, rain, thunder. Amen." Last night as I was sitting on the couch and it began raining Jason looked at me and said, "Is that thunder?" I couldn't help but find the beauty in it. My sweet little girl asked Jesus to make it rain and thunder during a time of year where we are often seeing snow. And it did just that.
So after thinking all of this through I decided to try to pray more like my daughter. My prayer going into tomorrow is simply this, "Jesus, Abigail. Amen."
What do you pray for you children?
Monday, November 22, 2010
As the day draws near...
I've been trying to write a post all day. But all my thoughts just keep getting jumbled together and not making sense. So I erase it all and start over, only to find myself not being able to say what I'm trying to say. So here's the fifth try today.
I am starting to feel the "just before MRI" nerves kick in. They make me want to call and cancel the MRI. They also make me want to demand that they give me the results that day. I got "the" phone call today where they go over the list of Abigail's diagnoses and special needs, arrival time, and when she can no longer have food and drink beforehand.
It feels MUCH scarier this time. Because before we didn't know about the possibility of mastocytosis; and she may not have had it then. And now, the whole time she is having the MRI I'm going to be wondering if she is having a reaction, going into anaphylaxis, and if we will end up in the hospital for Thanksgiving.
I think I asked the lady three times if they were doing things differently because of it. She assured me that she was the first appointment of the day so they could do something (I can't remember what it's called) to take the extra precautions. But really is that supposed to make me feel better. So you guys are ready should she go into anaphylaxis, but can't we just avoid that.
But Wednesday I will get up and drive to Riley, do the procedure, and we will go to McDonald's afterward. She will be her almost normal self by the afternoon. I will feel relieved it's over, and anxious to get the results. And of course I will most likely have to wait until Friday because of Thanksgiving.
And from there I don't know where we will go. Because I've never had anything but good results. And I don't know what to expect this time. I don't know how to react if they find something. I think I know where we will go from there based on my countless time spent researching, but in reality how do you decide between a risky surgery, chemo, or "wait and see" for your child; knowing that all three hold huge risk. And if she doesn't have one, how do you rejoice when your other NF friends are dealing with optic gliomas, plexis, and migraines in their children.
It's pretty incredible how sitting in the doctor's office on May 6 of 2009 totally changed my life. I have amazing friends I would never have known. Thank you Tara, Cindy, Bridget and Vicki. I have learned so much. During Abigail's re-evaluation the other day I answered a question they asked and the woman looked up at me and told me I sounded like a doctor. Yes, I am becoming a wealth of knowledge about many things medical.
And some days a small part of me wishes we weren't here. It wishes that when Abigail is pretending she wasn't so good with her doctor kit. It wishes that our money and time could be spent on driving to Indy for fun things like the Children's Museum, and Connor Prairie.
But then Abigail wouldn't be Abigail; and that thought makes me sad. I wouldn't have met the woman I mentioned above; and that thought makes me sad. Yes it is both the beauty and pain of living in Holland that I am feeling right now.
You can of course feel free to pray that I sleep well the next few nights, that the doctors extra precautions are the correct ones for keeping Abigail from having any sort of reaction, that results come quickly, and that we continue to find peace that surpasses all understanding.
Taking deep breaths,
I am starting to feel the "just before MRI" nerves kick in. They make me want to call and cancel the MRI. They also make me want to demand that they give me the results that day. I got "the" phone call today where they go over the list of Abigail's diagnoses and special needs, arrival time, and when she can no longer have food and drink beforehand.
It feels MUCH scarier this time. Because before we didn't know about the possibility of mastocytosis; and she may not have had it then. And now, the whole time she is having the MRI I'm going to be wondering if she is having a reaction, going into anaphylaxis, and if we will end up in the hospital for Thanksgiving.
I think I asked the lady three times if they were doing things differently because of it. She assured me that she was the first appointment of the day so they could do something (I can't remember what it's called) to take the extra precautions. But really is that supposed to make me feel better. So you guys are ready should she go into anaphylaxis, but can't we just avoid that.
But Wednesday I will get up and drive to Riley, do the procedure, and we will go to McDonald's afterward. She will be her almost normal self by the afternoon. I will feel relieved it's over, and anxious to get the results. And of course I will most likely have to wait until Friday because of Thanksgiving.
And from there I don't know where we will go. Because I've never had anything but good results. And I don't know what to expect this time. I don't know how to react if they find something. I think I know where we will go from there based on my countless time spent researching, but in reality how do you decide between a risky surgery, chemo, or "wait and see" for your child; knowing that all three hold huge risk. And if she doesn't have one, how do you rejoice when your other NF friends are dealing with optic gliomas, plexis, and migraines in their children.
It's pretty incredible how sitting in the doctor's office on May 6 of 2009 totally changed my life. I have amazing friends I would never have known. Thank you Tara, Cindy, Bridget and Vicki. I have learned so much. During Abigail's re-evaluation the other day I answered a question they asked and the woman looked up at me and told me I sounded like a doctor. Yes, I am becoming a wealth of knowledge about many things medical.
And some days a small part of me wishes we weren't here. It wishes that when Abigail is pretending she wasn't so good with her doctor kit. It wishes that our money and time could be spent on driving to Indy for fun things like the Children's Museum, and Connor Prairie.
But then Abigail wouldn't be Abigail; and that thought makes me sad. I wouldn't have met the woman I mentioned above; and that thought makes me sad. Yes it is both the beauty and pain of living in Holland that I am feeling right now.
You can of course feel free to pray that I sleep well the next few nights, that the doctors extra precautions are the correct ones for keeping Abigail from having any sort of reaction, that results come quickly, and that we continue to find peace that surpasses all understanding.
Taking deep breaths,
Tuesday, November 16, 2010
A lot of things jumbled in one post.
It's been a week filled with middle of the night nebulizer treatments, phone calls to figure out appointments, and the dreaded re-evaluation by early intervention (called first steps in Indiana). It's also been a week where I have spent much time thinking, thinking, thinking....because that's what I do.
Why is her asthma so bad? Is there something going on we can't see? Why is it only at night time? Am I ever going to sleep through the night again? And the inevitable call to the pulmanologist I have waited too long to make only because I don't want to have to increase her medicine, or make another Riley trip since we have three in the next three weeks. But after the emergency room trip earlier this week for it, and the lying awake for an hour after her treatment last night...waiting for another attack, I decided for both of our sakes I should call.
I also tried to be "smart" and make same day appointments a few months ago. Turns out that despite the fact that I checked (TWICE) the dermatologist appointment is not at the same facility as the follow-up with the speech and language pathologist; and of course there isn't enough time to drive from one place to the next...so two trips it is.
And lastly our re-evaluation. It's such a bittersweet things. I'm not certain if all states are like this right now, but ours is really cutting back on services for children with special needs. We know that Abigail's diagnoses qualify her for services automatically. That doesn't mean that first steps will willingly give them to us. By the standards of the state Abigail has never technically qualified. If the standard says children should walk by x age, and the child is walking by dragging one foot behind them, they still are considered as walking. Yeap. Pretty ridiculous, but that's the way they roll. So the two incredibly kind ladies who have evaluated her before, came and did so today. And for the first time ever: she qualified, based on her lackings in areas. It's great that I didn't have to call doctors to get orders written so that she would get what she needs. It sucks that her lacking is becoming more evident. I do have to counter my "damn the man" speech here with the fact that the providers (her therapist) are not the issue. They are phenomenal. The bureaucracy part is where it gets messy.
So this afternoon I sit. Waiting. Waiting on doctors to return phone calls. Waiting for Abigail to wake up from nap. Waiting for her MRI next week. Waiting for results. Waiting to find out if she has mastocytosis. Waiting for my head to stop spinning so I can send out e-mails to her providers. Waiting to hear when we get to add occupational therapy to our mix. Waiting on life to return to normal...and by normal I mean?
Taking some me time,
Why is her asthma so bad? Is there something going on we can't see? Why is it only at night time? Am I ever going to sleep through the night again? And the inevitable call to the pulmanologist I have waited too long to make only because I don't want to have to increase her medicine, or make another Riley trip since we have three in the next three weeks. But after the emergency room trip earlier this week for it, and the lying awake for an hour after her treatment last night...waiting for another attack, I decided for both of our sakes I should call.
I also tried to be "smart" and make same day appointments a few months ago. Turns out that despite the fact that I checked (TWICE) the dermatologist appointment is not at the same facility as the follow-up with the speech and language pathologist; and of course there isn't enough time to drive from one place to the next...so two trips it is.
And lastly our re-evaluation. It's such a bittersweet things. I'm not certain if all states are like this right now, but ours is really cutting back on services for children with special needs. We know that Abigail's diagnoses qualify her for services automatically. That doesn't mean that first steps will willingly give them to us. By the standards of the state Abigail has never technically qualified. If the standard says children should walk by x age, and the child is walking by dragging one foot behind them, they still are considered as walking. Yeap. Pretty ridiculous, but that's the way they roll. So the two incredibly kind ladies who have evaluated her before, came and did so today. And for the first time ever: she qualified, based on her lackings in areas. It's great that I didn't have to call doctors to get orders written so that she would get what she needs. It sucks that her lacking is becoming more evident. I do have to counter my "damn the man" speech here with the fact that the providers (her therapist) are not the issue. They are phenomenal. The bureaucracy part is where it gets messy.
So this afternoon I sit. Waiting. Waiting on doctors to return phone calls. Waiting for Abigail to wake up from nap. Waiting for her MRI next week. Waiting for results. Waiting to find out if she has mastocytosis. Waiting for my head to stop spinning so I can send out e-mails to her providers. Waiting to hear when we get to add occupational therapy to our mix. Waiting on life to return to normal...and by normal I mean?
Taking some me time,
Monday, November 15, 2010
Earthquakes
Imagine if you will what it would be like to be in an earthquake. The whole world moving, things falling and crumbling around you. There is fear, confusion, uncertainty. Even after the earthquake stops, you don't feel safe or secure. You know about the aftershocks. You know that earthquakes set off things like volcanoes and tsunamis. The whole world has just shifted, and all you can do is wait for what will come next. Now imagine if you will that you are the only person feeling this earthquake. Nobody else even knows it's happening. You try telling them, but they just don't seem to understand. A few people might be able to look and see that you are in one, but they still don't feel the effects like you do.
It sounds like some weird sci-fi movie. But it's reality for me, and a lot of other parents out there. It's what it felt like to hear a label for the first time. Those aftershocks are every little thing along the way after those words are first spoken; all of the "your child will probably never", and "will have trouble with..." Yes I feel like I live in a world of earthquakes. And like people who live near fault lines sometimes I find peace. Every now and then there is enough of a break between the quaking for me to think things are okay, but then my world gets rocked a little bit.
After a while you learn how to stand, walk, and even thrive while the ground is moving beneath you. You have days that you forget what life was like when things stood still. You aren't even certain how you would survive in that world anymore.
And there are days when you try to explain to everyone else that you are shaking because of world around you moving. But they just shake their heads and walk away. They can't see it moving, they don't want to see it moving. Because if your ground can shake, then that might mean there's could too. So instead they ignore you. They look away and pretend not to notice.
And then there are times when you look up and notice that other woman who also is shaking like you are. You see her immediately at a playground, doctors office, or grocery store. And from the depths of your spirit you cry out to her. You smile at each other and talk about this earthquake world. You walk away knowing that someone else out there understands you.
Some days you curse the quaking wishing it would have never come. You cry and you scream knowing that it won't change anything. And then you pick yourself up and move on. Because although there are lots of really horrible things about not being able to get great footing, there are also lots of really great things about how it has changed your perspective on life.
Hoping the aftershocks are small,
It sounds like some weird sci-fi movie. But it's reality for me, and a lot of other parents out there. It's what it felt like to hear a label for the first time. Those aftershocks are every little thing along the way after those words are first spoken; all of the "your child will probably never", and "will have trouble with..." Yes I feel like I live in a world of earthquakes. And like people who live near fault lines sometimes I find peace. Every now and then there is enough of a break between the quaking for me to think things are okay, but then my world gets rocked a little bit.
After a while you learn how to stand, walk, and even thrive while the ground is moving beneath you. You have days that you forget what life was like when things stood still. You aren't even certain how you would survive in that world anymore.
And there are days when you try to explain to everyone else that you are shaking because of world around you moving. But they just shake their heads and walk away. They can't see it moving, they don't want to see it moving. Because if your ground can shake, then that might mean there's could too. So instead they ignore you. They look away and pretend not to notice.
And then there are times when you look up and notice that other woman who also is shaking like you are. You see her immediately at a playground, doctors office, or grocery store. And from the depths of your spirit you cry out to her. You smile at each other and talk about this earthquake world. You walk away knowing that someone else out there understands you.
Some days you curse the quaking wishing it would have never come. You cry and you scream knowing that it won't change anything. And then you pick yourself up and move on. Because although there are lots of really horrible things about not being able to get great footing, there are also lots of really great things about how it has changed your perspective on life.
Hoping the aftershocks are small,
Sunday, November 7, 2010
The valley of the shadow...
I think everyone knows the verses from Psalms that my title refers to. They are read at funerals. They were even referenced in a nineties rap song. Jason and I both cringe when they are read at funerals. Neither of us want them read at ours. However they are some interesting verses. And in reality they don't only refer to dying, or being on the brink of death. There is a lot in those six verses.
"The Lord is my shepherd, I shall not be in want. He makes me lie down in green pastures, he leads me besides quiet waters, he restores my soul. He guides me in paths of righteousness for his name's sake. Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me. You prepare a table before me in the presence of my enemies. You anoint my head with oil; my cup overflows. Surely goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord forever." Psalm 23
Despite the reputation for being a funeral passage I actually feel like it describes our lives pretty well. My personal journey with Christ began my senior year of high school, and Jason's his junior year of college. And for many years it felt like we lived in green pastures beside quiet waters. God spent numerous years building us up with great things. It's not that there weren't any bad things in those years. They just didn't really make us question anything we believed in.
And although the wait for a baby was hard, it was not a valley of the shadow of death. I know people who live in that valley; but for us we are just in close proximity.
For the first nine months or so after Abigail's diagnoses, that's where it felt like I lived; in almost constant fear that my baby would be taken from me. And as I move further away from the diagnoses the thing I have been able to look back and see is that God never changed. I did. A whole bunch. I will continue to change. Through the times I wondered what He was doing, and why; He gently comforted me with His rod and His staff. He also prepared a table for me before my enemy; the enemy who enjoys telling me all the things that could happen, and why this might be happening to my baby. As I sit at that table and supp, none of those things from the enemy can even be heard above my heart crying out in praise.
I really do feel anointed in this situation. I feel the grace and mercy of the Lord washing over me, and I see it pouring over my daughter. I watch my little girl and know that my cup runeth over. As I hold her, play with her, sing, dance, laugh, and cry I could not contain another ounce or moment of the greatness the Lord has brought to me. I know that His goodness and love will follow me forever, and some day my husband, daughter, and I will dwell in the house of the Lord forever.
I don't want this to sound cliche. It's not something I'm supposed to say because I'm a Christian. When we first found out about Abigail's NF I felt like someone had rocked my whole world. I imagine that if I could see things the way God did during that time there was a large shadow over me.
The thing about all of it is that I really can look backward, at now, and forward, and see that God didn't change, isn't changing, and will not change. His world was not rocked by my daughter's diagnoses. He knew when He knit her together in her mother's womb that there was a chromosomal mutation. He knew when and where she would get tumors. He knew that Jason and I would be her parents. He knows the number of her days, the time of her last breath, and the way to cure anything she may ever face.
Over the last few weeks as I have begun to try to prepare myself for another MRI and what may come of it, I have been shocked at how peaceful I feel. I have even been able to look at pictures of what might lie ahead for Abigail if she does have a tumor on her leg, and have been fine. It's not that I'm not saddened by the possibility. It's that it doesn't actually change who Abigail is, who I am, or who God is.
Knowing who I am in Christ, who my daughter is, and who Christ is means that even when things look and feel shaky, I will not be moved. My life, my hope, my joy, my peace, my everything comes from a foundation that is solid. Had I not walked into this with that foundation, the months of grieving I encountered would have taken me to the pit of despair and left me there. But as I stand, I can face tomorrow knowing that my God is good. And that is all I need to get me through anything that NF can bring our way.
Enjoying the green pastures and quiet waters,
"The Lord is my shepherd, I shall not be in want. He makes me lie down in green pastures, he leads me besides quiet waters, he restores my soul. He guides me in paths of righteousness for his name's sake. Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me. You prepare a table before me in the presence of my enemies. You anoint my head with oil; my cup overflows. Surely goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord forever." Psalm 23
Despite the reputation for being a funeral passage I actually feel like it describes our lives pretty well. My personal journey with Christ began my senior year of high school, and Jason's his junior year of college. And for many years it felt like we lived in green pastures beside quiet waters. God spent numerous years building us up with great things. It's not that there weren't any bad things in those years. They just didn't really make us question anything we believed in.
And although the wait for a baby was hard, it was not a valley of the shadow of death. I know people who live in that valley; but for us we are just in close proximity.
For the first nine months or so after Abigail's diagnoses, that's where it felt like I lived; in almost constant fear that my baby would be taken from me. And as I move further away from the diagnoses the thing I have been able to look back and see is that God never changed. I did. A whole bunch. I will continue to change. Through the times I wondered what He was doing, and why; He gently comforted me with His rod and His staff. He also prepared a table for me before my enemy; the enemy who enjoys telling me all the things that could happen, and why this might be happening to my baby. As I sit at that table and supp, none of those things from the enemy can even be heard above my heart crying out in praise.
I really do feel anointed in this situation. I feel the grace and mercy of the Lord washing over me, and I see it pouring over my daughter. I watch my little girl and know that my cup runeth over. As I hold her, play with her, sing, dance, laugh, and cry I could not contain another ounce or moment of the greatness the Lord has brought to me. I know that His goodness and love will follow me forever, and some day my husband, daughter, and I will dwell in the house of the Lord forever.
I don't want this to sound cliche. It's not something I'm supposed to say because I'm a Christian. When we first found out about Abigail's NF I felt like someone had rocked my whole world. I imagine that if I could see things the way God did during that time there was a large shadow over me.
The thing about all of it is that I really can look backward, at now, and forward, and see that God didn't change, isn't changing, and will not change. His world was not rocked by my daughter's diagnoses. He knew when He knit her together in her mother's womb that there was a chromosomal mutation. He knew when and where she would get tumors. He knew that Jason and I would be her parents. He knows the number of her days, the time of her last breath, and the way to cure anything she may ever face.
Over the last few weeks as I have begun to try to prepare myself for another MRI and what may come of it, I have been shocked at how peaceful I feel. I have even been able to look at pictures of what might lie ahead for Abigail if she does have a tumor on her leg, and have been fine. It's not that I'm not saddened by the possibility. It's that it doesn't actually change who Abigail is, who I am, or who God is.
Knowing who I am in Christ, who my daughter is, and who Christ is means that even when things look and feel shaky, I will not be moved. My life, my hope, my joy, my peace, my everything comes from a foundation that is solid. Had I not walked into this with that foundation, the months of grieving I encountered would have taken me to the pit of despair and left me there. But as I stand, I can face tomorrow knowing that my God is good. And that is all I need to get me through anything that NF can bring our way.
Enjoying the green pastures and quiet waters,
Wednesday, October 27, 2010
Ten things not to say.
I am the mother of a child with special needs. I talk to other parents of children with special needs. There seems to be an epidemic of sorts. A worldwide issue of things being said to parents about their special needs children; and not just general things. Things that should not be asked or said; especially in the presence of their child.
I will start with a few small lessons. When you meet a family, and they have a special needs child, assume the child can understand everything you are saying. Address the child if you want to know how they are. Think about what you are saying about them, and in front of them. Chances are, even if you think a child appears to have a profound disability and can't understand you, that they can.
Secondly do not refer to them as retarded. Never ever. Don't joke about someone being retarded, something being retarded and so forth. The word is hurtful, especially when it has, or will be used as a word to make fun of the child. And with that remember from this post that it is best received to use people first language. They are a person with a disability; not a disabled person.
With all of that layed out there this list below was a collaboration of my friend over at The MacDonald Family and I. They have a beautiful little girl with a disorder called Rett syndrome. I have enjoyed reading about her perspective, seeing her incredible faith, and the kind and encouraging words she has spoken to a mama who still feels a bit like a rookie wading through some of the special needs stuff.
Ten things NOT to say to a parent of a special needs child.
1."What is her life expectancy? Is she going to die from it? What is the prognosis?"
This question is one that is hurtful. Even parents who have a child with a fatal disorder aren't usually up for discussing their child's looming death with complete strangers. It also takes away the joy that we work each day to find in our lives.
2. "What's wrong with her?"
Perhaps this is more semantics, but I can think of about one hundred other things you could say that would feel kinder. Whether a child has something obvious like down syndrome, or just some devices that you've never seen before and are curious about, find another way to phrase your question. What does that device help with? What is his diagnoses? Can I ask about your child's special needs? Because, as a mama I don't feel like anything is "wrong" with my daughter. She is a normal child who just deals with things that aren't typical.
3. "If you had known would you have had an abortion/adopted her?"
I feel like this one is painfully obvious. But is has been asked of me (I wrote about it here in my what not to say to adopted parents post). And yes, my friends with biological children with special needs have been asked if they would have aborted. Don't say this. It's rude, unkind, and unthoughtful. It doesn't matter what the choice would have been, because our child is here with us now and we believe their life has value.
4. "I knew someone else who had that, and they were severely disfigured/died from it."
I have NO idea why our society is obsessed with horror stories. Someone is about to get married, have a baby, adopt a baby, buy a car, whatever; so people surround them with stories of the worst things that could ever happen. It's NOT HELPFUL. As a mother, I have gone through every worst case scenario there is. So if you want to tell me an encouraging story about it, or say something kind and uplifting, by all means. I don't need help worrying about my child's future.
5. "God only gives those children to special people."
This goes against what I feel like is the character of God (i.e. He did not want my child to have a genetic disorder). It's also untrue. In the child welfare system in the united states 30-60% of children have been estimated to have chronic health conditions. When you add in behavioral, emotional, and developmental issues, the number increases to 80%. The estimation for the general population of children with special needs is 12.8%. (Source.) Some of this is because dealing with special needs can be financially, physically, and emotionally draining. It could easily cause people to lash out at their children, especially those who are higher need. However it does also show that not all parents who have children with special needs are great at it.
6. "Whispering, Staring, Shushing, and quickly moving away."
These things are hurtful. Although I am writing a list of things I don't want you to say, I am okay with questions. Especially from children. That's how they learn. When you shush them or move them away you teach them to be uncomfortable with people who are different than they are. And when you do these things, you show me that you are uncomfortable with my child. My child is like yours in lots of ways. She is not scary. Treat her the same way you would a typical child.
7. "Those kids are always so...(happy, fun, compassionate)."
Maybe living a life surrounded by therapist, doctors appointments, and procedures makes children with special needs more compassionate. But not every child with down syndrome is always happy. Not every childhood cancer survivor grows up being empathetic. My child's diagnoses does not define personality. It's similar to believing all men, all women, or all of a specific ethnic, religious group, and so on, are the same. They aren't. My child's personality is unique. So are all of the other people who I have met with NF.
8. "I know all about ____ and here is what I know."
When my nephew was diagnosed with cerebral palsy a woman I worked with told me that if I had children they could have it too. When I politely stated it wasn't genetic, she argued with me. I walked away knowing that cerebral palsy is brain damage that can result from numerous different things. It is not genetic. It's nice to meet people who know about the disorder your child has; especially if it is something rare. However, don't ever argue with a parent about their child's disorder. I guarantee you they have spent weeks of their lives researching, reading, talking to doctors, and sharing with other parents. They know more about it than you do. And even if you are right, it's okay to give that parent a break from all of the know-it-alls in the world.
9. "You know what you should do..."
I can not count the number of people who have boldly stated the way to cure my child. Natural this that and the other, surgery, drinking so much water every day. Really, because of the eight specialist we see, none of them seem to know the cure. But average Joe out on the street has the cure that the doctors have yet to discover.
I will agree that there are often natural things that can help situations; foods to avoid, foods to eat, vitamins, and other things. I have a feeling though that if I did what everyone told me, I could end up losing custody of my child for neglecting her health needs.
10. "She looks normal. You can't even really tell there's anything wrong with her."
This one makes me want to respond with, "And you seem intelligent." I don't know if people are trying to make me feel better. Of course my child looks normal. Of course my child is beautiful. You don't have to convince me of that. But you telling me that you can't look at her and tell anything feels sort of like a trite answer of "Well at least you have that going for you. She can pass as normal." That doesn't help me to feel better, even if it makes you feel better.
This is the list for you. There are other things more specific to each child that people say as well. So please try to think before you speak. Think about how you would feel if that was your child. Think about whether you are close enough to the person for that to be an appropriate question. There are a few things on this list that our closest friends have asked, and know the answers to. They also know when all of our appointments are, how we are doing emotionally, and not to say things in front of our daughter.
And lastly, I have never begged for more readership before. But PLEASE share this. Post it on facebook, send it by e-mail. Post a link from your blog. Contribute your questions you don't like asked in the comments. Just do whatever you can so that as many people as possible can read this and become better informed.
Excited to see what you have to say,
I will start with a few small lessons. When you meet a family, and they have a special needs child, assume the child can understand everything you are saying. Address the child if you want to know how they are. Think about what you are saying about them, and in front of them. Chances are, even if you think a child appears to have a profound disability and can't understand you, that they can.
Secondly do not refer to them as retarded. Never ever. Don't joke about someone being retarded, something being retarded and so forth. The word is hurtful, especially when it has, or will be used as a word to make fun of the child. And with that remember from this post that it is best received to use people first language. They are a person with a disability; not a disabled person.
With all of that layed out there this list below was a collaboration of my friend over at The MacDonald Family and I. They have a beautiful little girl with a disorder called Rett syndrome. I have enjoyed reading about her perspective, seeing her incredible faith, and the kind and encouraging words she has spoken to a mama who still feels a bit like a rookie wading through some of the special needs stuff.
1."What is her life expectancy? Is she going to die from it? What is the prognosis?"
This question is one that is hurtful. Even parents who have a child with a fatal disorder aren't usually up for discussing their child's looming death with complete strangers. It also takes away the joy that we work each day to find in our lives.
2. "What's wrong with her?"
Perhaps this is more semantics, but I can think of about one hundred other things you could say that would feel kinder. Whether a child has something obvious like down syndrome, or just some devices that you've never seen before and are curious about, find another way to phrase your question. What does that device help with? What is his diagnoses? Can I ask about your child's special needs? Because, as a mama I don't feel like anything is "wrong" with my daughter. She is a normal child who just deals with things that aren't typical.
3. "If you had known would you have had an abortion/adopted her?"
I feel like this one is painfully obvious. But is has been asked of me (I wrote about it here in my what not to say to adopted parents post). And yes, my friends with biological children with special needs have been asked if they would have aborted. Don't say this. It's rude, unkind, and unthoughtful. It doesn't matter what the choice would have been, because our child is here with us now and we believe their life has value.
4. "I knew someone else who had that, and they were severely disfigured/died from it."
I have NO idea why our society is obsessed with horror stories. Someone is about to get married, have a baby, adopt a baby, buy a car, whatever; so people surround them with stories of the worst things that could ever happen. It's NOT HELPFUL. As a mother, I have gone through every worst case scenario there is. So if you want to tell me an encouraging story about it, or say something kind and uplifting, by all means. I don't need help worrying about my child's future.
5. "God only gives those children to special people."
This goes against what I feel like is the character of God (i.e. He did not want my child to have a genetic disorder). It's also untrue. In the child welfare system in the united states 30-60% of children have been estimated to have chronic health conditions. When you add in behavioral, emotional, and developmental issues, the number increases to 80%. The estimation for the general population of children with special needs is 12.8%. (Source.) Some of this is because dealing with special needs can be financially, physically, and emotionally draining. It could easily cause people to lash out at their children, especially those who are higher need. However it does also show that not all parents who have children with special needs are great at it.
6. "Whispering, Staring, Shushing, and quickly moving away."
These things are hurtful. Although I am writing a list of things I don't want you to say, I am okay with questions. Especially from children. That's how they learn. When you shush them or move them away you teach them to be uncomfortable with people who are different than they are. And when you do these things, you show me that you are uncomfortable with my child. My child is like yours in lots of ways. She is not scary. Treat her the same way you would a typical child.
7. "Those kids are always so...(happy, fun, compassionate)."
Maybe living a life surrounded by therapist, doctors appointments, and procedures makes children with special needs more compassionate. But not every child with down syndrome is always happy. Not every childhood cancer survivor grows up being empathetic. My child's diagnoses does not define personality. It's similar to believing all men, all women, or all of a specific ethnic, religious group, and so on, are the same. They aren't. My child's personality is unique. So are all of the other people who I have met with NF.
8. "I know all about ____ and here is what I know."
When my nephew was diagnosed with cerebral palsy a woman I worked with told me that if I had children they could have it too. When I politely stated it wasn't genetic, she argued with me. I walked away knowing that cerebral palsy is brain damage that can result from numerous different things. It is not genetic. It's nice to meet people who know about the disorder your child has; especially if it is something rare. However, don't ever argue with a parent about their child's disorder. I guarantee you they have spent weeks of their lives researching, reading, talking to doctors, and sharing with other parents. They know more about it than you do. And even if you are right, it's okay to give that parent a break from all of the know-it-alls in the world.
9. "You know what you should do..."
I can not count the number of people who have boldly stated the way to cure my child. Natural this that and the other, surgery, drinking so much water every day. Really, because of the eight specialist we see, none of them seem to know the cure. But average Joe out on the street has the cure that the doctors have yet to discover.
I will agree that there are often natural things that can help situations; foods to avoid, foods to eat, vitamins, and other things. I have a feeling though that if I did what everyone told me, I could end up losing custody of my child for neglecting her health needs.
10. "She looks normal. You can't even really tell there's anything wrong with her."
This one makes me want to respond with, "And you seem intelligent." I don't know if people are trying to make me feel better. Of course my child looks normal. Of course my child is beautiful. You don't have to convince me of that. But you telling me that you can't look at her and tell anything feels sort of like a trite answer of "Well at least you have that going for you. She can pass as normal." That doesn't help me to feel better, even if it makes you feel better.
This is the list for you. There are other things more specific to each child that people say as well. So please try to think before you speak. Think about how you would feel if that was your child. Think about whether you are close enough to the person for that to be an appropriate question. There are a few things on this list that our closest friends have asked, and know the answers to. They also know when all of our appointments are, how we are doing emotionally, and not to say things in front of our daughter.
And lastly, I have never begged for more readership before. But PLEASE share this. Post it on facebook, send it by e-mail. Post a link from your blog. Contribute your questions you don't like asked in the comments. Just do whatever you can so that as many people as possible can read this and become better informed.
Excited to see what you have to say,
Thursday, October 21, 2010
I might be a superhero
I have never considered myself smart. I get by just fine. I'm not dumb. But when it comes to things like math, and correct grammar and the like I don't always know the answers, and definitely care even less. My husband is very intelligent. Did honors everything his whole life. He gets frustrated at the two things that I do well and he can't (play the piano and read very quickly). I like having a few wins.
I have realised, not just from what we are going through, but from talking with so many other parents out there that have children with special needs, that I know more big words than any other American out there. Okay that's an exaggeration, but I will explain.
Up until May of 2009 I knew enough about the basics of child rearing to be able to say things like, "I think she has an ear infection." I knew signs and symptoms for run of the mill childhood illnesses. I knew a little about cerebral palsy because of my nephew and a little about downs syndrome because for some reason I thought we would have a child with it.
However in the past seventeen months since I was first introduced to the huge word "neurofibromatosis" my vocabulary, as well as my understanding of genetics and anatomy, have increased exponentially.
Someone asked me what NF was one time. I explained that it was a chromosomal mutation on the 17th chromosome that could ....I looked up to a distorted face. Oh yeah, he probably just wants to know the basics, not everything I have ever learned. But the definition is hard and it took me months to understand the basics. But now I know the difference between cutaneous, subcutaneous, and plexiform neurofibromas. I know what a glioma is, a pheocromocytoma, sphenoid dysplasia, and tibial dysplasia. I know what a cafe au lait spot is and what lisch nodules are. I know about avisol, photodynamic therapy, gleevec, and tumor debulking, as well as who the best doctors are, and where the drug trials are taking place for each.
I also have learned a secret language full of letters. I know about things like p.t., o.t., and s.t. I know what an IFSP is as well as an IEP. And more specifically I know whether appointments we are going to are at the ROC. I know the difference between an EEG, EKG, MRI, CAT, PET, and x-ray. I even know things that are more common with NF like JMML and JXG.
I have learned enough that sometimes I doubt my choice to not be part of the medical field. All joking aside, I am at a place where not only do I learn everything I can about NF, it spills over into helping me understand other disorders. And I never thought I would be thankful for this sort of knowledge, but I am.
Sometimes it just feels like I'm part of a secret club of moms with superpowers that have to do with hiring and firing a large entourage of people to care for their children. But most of the time it makes me feel like my daughter will get the best care. I will know everything I can so that I can be proactive, and most of the other parents I know are the same way.
So to all of you other mothers and fathers out there taking care of your kiddos with special needs, what is your secret language? Does it ever make you feel alone when you have to explain all the letters, and words to friends, family, therapist, and sometimes uninformed doctors? Do you wear a cape under your clothes to hide the fact that you have to be a superhero for your child; you are the only one who can fill that job description? Tell me your thoughts!
Hiding my cape,
P.S. When I hit spellcheck every word that had to do with NF and every letter combination was highlighted. Not even the computer can decipher my superhuman code.
I have realised, not just from what we are going through, but from talking with so many other parents out there that have children with special needs, that I know more big words than any other American out there. Okay that's an exaggeration, but I will explain.
Up until May of 2009 I knew enough about the basics of child rearing to be able to say things like, "I think she has an ear infection." I knew signs and symptoms for run of the mill childhood illnesses. I knew a little about cerebral palsy because of my nephew and a little about downs syndrome because for some reason I thought we would have a child with it.
However in the past seventeen months since I was first introduced to the huge word "neurofibromatosis" my vocabulary, as well as my understanding of genetics and anatomy, have increased exponentially.
Someone asked me what NF was one time. I explained that it was a chromosomal mutation on the 17th chromosome that could ....I looked up to a distorted face. Oh yeah, he probably just wants to know the basics, not everything I have ever learned. But the definition is hard and it took me months to understand the basics. But now I know the difference between cutaneous, subcutaneous, and plexiform neurofibromas. I know what a glioma is, a pheocromocytoma, sphenoid dysplasia, and tibial dysplasia. I know what a cafe au lait spot is and what lisch nodules are. I know about avisol, photodynamic therapy, gleevec, and tumor debulking, as well as who the best doctors are, and where the drug trials are taking place for each.
I also have learned a secret language full of letters. I know about things like p.t., o.t., and s.t. I know what an IFSP is as well as an IEP. And more specifically I know whether appointments we are going to are at the ROC. I know the difference between an EEG, EKG, MRI, CAT, PET, and x-ray. I even know things that are more common with NF like JMML and JXG.
I have learned enough that sometimes I doubt my choice to not be part of the medical field. All joking aside, I am at a place where not only do I learn everything I can about NF, it spills over into helping me understand other disorders. And I never thought I would be thankful for this sort of knowledge, but I am.
Sometimes it just feels like I'm part of a secret club of moms with superpowers that have to do with hiring and firing a large entourage of people to care for their children. But most of the time it makes me feel like my daughter will get the best care. I will know everything I can so that I can be proactive, and most of the other parents I know are the same way.
So to all of you other mothers and fathers out there taking care of your kiddos with special needs, what is your secret language? Does it ever make you feel alone when you have to explain all the letters, and words to friends, family, therapist, and sometimes uninformed doctors? Do you wear a cape under your clothes to hide the fact that you have to be a superhero for your child; you are the only one who can fill that job description? Tell me your thoughts!
Hiding my cape,
P.S. When I hit spellcheck every word that had to do with NF and every letter combination was highlighted. Not even the computer can decipher my superhuman code.
Friday, October 15, 2010
Emotional Friday
It's been an emotional day. It always takes some processing after appointments to know how exactly I feel, and that was true of today with a bonus added in at the end.
So I'll start with Abigail's swallow study. The study itself went great. Abigail was cooperative and enjoyed the barium powder added to each thing so much that she was licking it off. That's our goofy girl.
The results were that she had deep penetration of liquids in her bronchial tube 20% of the time. In more general English that means that she didn't aspirate during the study but is most likely aspirating some of the time.
We then spent the next hour with the speech therapist going over the swallow study as well as watching her eat other things, and discussing her oral motor skills. It was a bit disheartening. I wasn't that surprised by the swallow study, it was more of the other things that took me off guard a bit.
Her eating technique/skills were assessed at 10-12 months. I did not see that coming at all. So from here we are doing a few different exercises to help her eat better, stuff her mouth less, take bites, and so on. We will also be thickening all of her liquids.
The liquid thing was a bit overwhelming, but also sad. Our daughter is a champion water drinker, and we are supposed to add apple sauce to her water. So really she will be getting a more juice flavored drink than plain water. And tonight I added some rice cereal to her milk. She took one sip, sat up, and said all done as the tears rolled down her cheeks. Oh how I wished I could just give her the "nu" she wanted and make it all better. Instead she went to bed without the milk that she loves so much. I hope it gets easier as we try a few other things that we can add to her milk. She does tend to adapt well to change.
However, it has also added to my head that we keep racking up things that are going to make people not want to babysit because it's too much stuff. She could have an asthma attack, and here is what you would need to do. (With the new possibility of mastocytosis) We now have to let anyone know that it's possible she could go into anaphylaxis at any time for no apparent reason, and then give them a lesson on an epi-pen. So today we added that she can't drink anything you might be having because it has to be thickened with this or this, and here is the amount to add to each thing.
But to top the day off Jason had some blood work done earlier this week. He is having a sleep study done for possible sleep apnea, and they wanted to check on a few other things. We have sort of assumed, due to some symptoms, that Jason had some low hormone levels and that was the reason we couldn't get pregnant. And so we had expected that to come back and to have to decide from there what we wanted to do.
So today when we got the phone call that everything was normal I was excited, but also at a loss. I doubt we will do any more investigation into why we aren't getting pregnant. It was just that for the first time in years, I had a small hope that we could decide if we wanted to try for a biological child or choose to continue to adopt. And that small hope was quickly squelched. So as we have officially passed the five year mark of not getting pregnant, it feels even more final.
As I sit here writing this I truly do just feel like I am being given a little too much all at the same time. I know we have more upcoming appointments and test so I won't be able to spend much time dwelling on the here and now before I have to pick my self up and move forward again.
This post feels depressing so I will end it by bragging again about how smart Abigail is.
Abigail is extremely inquisitive wanting to know what signs are, what a letter or number is and so on. I posted a small blurp before, but she knows all of her shapes and colors, a stop sign, a Do Not Enter sign, a railroad crossing sign, at least the letters A,B,E,H,and M, and can identify at least 3,5,8,10 (the letters and numbers have been what she has pointed out and told so she may know more?) and can count from 1-10. She blows my mind with how quickly she picks up on new things.
We also watched as she walked up four steps without holding on, and has made two, two-word phrase on her own. These feel like huge wins since they are areas that she is behind in!
Feel free to pray for all of the chaos, but please also take time to rejoice with us at how great life is as well!
Ready for tomorrow,
So I'll start with Abigail's swallow study. The study itself went great. Abigail was cooperative and enjoyed the barium powder added to each thing so much that she was licking it off. That's our goofy girl.
The results were that she had deep penetration of liquids in her bronchial tube 20% of the time. In more general English that means that she didn't aspirate during the study but is most likely aspirating some of the time.
We then spent the next hour with the speech therapist going over the swallow study as well as watching her eat other things, and discussing her oral motor skills. It was a bit disheartening. I wasn't that surprised by the swallow study, it was more of the other things that took me off guard a bit.
Her eating technique/skills were assessed at 10-12 months. I did not see that coming at all. So from here we are doing a few different exercises to help her eat better, stuff her mouth less, take bites, and so on. We will also be thickening all of her liquids.
The liquid thing was a bit overwhelming, but also sad. Our daughter is a champion water drinker, and we are supposed to add apple sauce to her water. So really she will be getting a more juice flavored drink than plain water. And tonight I added some rice cereal to her milk. She took one sip, sat up, and said all done as the tears rolled down her cheeks. Oh how I wished I could just give her the "nu" she wanted and make it all better. Instead she went to bed without the milk that she loves so much. I hope it gets easier as we try a few other things that we can add to her milk. She does tend to adapt well to change.
However, it has also added to my head that we keep racking up things that are going to make people not want to babysit because it's too much stuff. She could have an asthma attack, and here is what you would need to do. (With the new possibility of mastocytosis) We now have to let anyone know that it's possible she could go into anaphylaxis at any time for no apparent reason, and then give them a lesson on an epi-pen. So today we added that she can't drink anything you might be having because it has to be thickened with this or this, and here is the amount to add to each thing.
But to top the day off Jason had some blood work done earlier this week. He is having a sleep study done for possible sleep apnea, and they wanted to check on a few other things. We have sort of assumed, due to some symptoms, that Jason had some low hormone levels and that was the reason we couldn't get pregnant. And so we had expected that to come back and to have to decide from there what we wanted to do.
So today when we got the phone call that everything was normal I was excited, but also at a loss. I doubt we will do any more investigation into why we aren't getting pregnant. It was just that for the first time in years, I had a small hope that we could decide if we wanted to try for a biological child or choose to continue to adopt. And that small hope was quickly squelched. So as we have officially passed the five year mark of not getting pregnant, it feels even more final.
As I sit here writing this I truly do just feel like I am being given a little too much all at the same time. I know we have more upcoming appointments and test so I won't be able to spend much time dwelling on the here and now before I have to pick my self up and move forward again.
This post feels depressing so I will end it by bragging again about how smart Abigail is.
Abigail is extremely inquisitive wanting to know what signs are, what a letter or number is and so on. I posted a small blurp before, but she knows all of her shapes and colors, a stop sign, a Do Not Enter sign, a railroad crossing sign, at least the letters A,B,E,H,and M, and can identify at least 3,5,8,10 (the letters and numbers have been what she has pointed out and told so she may know more?) and can count from 1-10. She blows my mind with how quickly she picks up on new things.
We also watched as she walked up four steps without holding on, and has made two, two-word phrase on her own. These feel like huge wins since they are areas that she is behind in!
Feel free to pray for all of the chaos, but please also take time to rejoice with us at how great life is as well!
Ready for tomorrow,
Subscribe to:
Posts (Atom)