Friday, April 30, 2010

Stealing joy


Abigail giving us an almost smile at two weeks old.

Abigail means father's joy. We knew while we were waiting on a child that God had promised us a daughter, and that we were to name her Abigail. We both loved the meaning. So while praying one night God told me that Abigail would be our joy, but her name was because she was "His joy."
And true to her name, Abigail is joy. She immediately filled our hearts, home, and life with joy beyond measure. She was an incredibly easy baby who smiled early, laughed early, and was just calm and peaceful. You could sense the joy from the beginning.
As she's gotten older and her personality has come out more, the word that best describes her still...joy. She is silly as well as full of smiles and laughter. It's always amazing to me that wherever we go people tell us how cute she is. She generally looks at them and gives a cute wave to seal the oohs and aahs over her.
So last weekend I was at a woman's Bible study and was sharing that Jason and I have been talking a bit about the Bible verses on asking God for things and getting them, being healed, and how that all applies to us. A fear I have is that if we continue to pray for God to heal her, and she grows up seeing that He didn't that she will become bitter at Him. Every woman there immediately chimed in that they could not ever see Abigail getting bitter. She is joy.
I think that was the first time I realized where her beauty came from. When I look at her and see her chocolaty skin, big brown eyes, and eyelashes that reach the heavens I can't help but think she's beautiful. However the thing that stands out most is how full of joy she always is. It makes her so beautiful that people can't help but comment on her.
As Jason and I lied in bed last night talking, I shared with him how much I fear our journey stealing my little girls joy; how it seems hard to imagine my little girl being poked, pumped full of stuff, and possibly operated on, and coming out with joy. But then this morning as I played with her, it's hard for me to imagine anything ever taking that joy away.
Abigail has taken to grabbing both of my hands and saying "pray." A lot. When Jason is home she asks him to pray. Yesterday she even asked our dog to hold her hands and pray. She asks me to pray while she's sitting on the potty, eating, and playing on her slide. It has reminded me that God told me that she was His joy. The joy of the Lord can't be stolen from my little girl.


We will walk in the joy of the Lord,

Wednesday, April 28, 2010

Nothing for granted


Abigail laying on the pillow some kind stranger gave us after they read her story in the paper.

I need to pick up toys, load the dishwasher, and read a chapter for tonight's book study. However I also need to write, because I have a few things in my head and heart that need to come out before I can think clearly again.
I HATE having to call offices, insurance people, and anything to due with Abigail really. Most of the time I have had positive experiences, but the bad ones have been big enough that calling often makes me feel a bit anxious. Yesterday morning I had to call the doctors office to ask a question. I wasn't sure whether or not they needed to see Abigail. When I called I got the woman who apparently thought I was an idiot and curtly told me "we can't just diagnose her over the phone." I stayed calm and told her I didn't want a diagnoses I wanted to know if the doctor thought she needed to come in or not.
Abigail is also on a state run insurance program for children with special needs. Everyone I have ever talked to there has been beyond kind. I feel like if I'm having a hard day I could probably just call and someone there would listen and cry with me (I have never done this). So yesterday when I had to call with a question about paperwork I was a little taken back out how rude and unkind the woman was. I told her I had a question and before I could ask she started telling me about due dates and how it was my responsibility to make sure things got in on time. They aren't even late. I don't know why she found the need to give me a lecture. I really wanted to tell her what the past week has been like for me and ask her if she thought she could muster up some kindness for a few minutes. I didn't though.
So this morning I took the paperwork to the department of family services to fax it. I had just left a business giving a donation for the upcoming fundraiser we are doing. I was feeling pretty good really. After all the papers got faxed we were walking out and an older woman stopped us. She wanted to tell me her story, and I felt impatient because Abigail had a dentist appointment. I smiled politely as she kissed Abigail's hand and told me her daughter had lazy eye and had gotten glasses at six months old. She then went on to tell me that her daughter had passed away at fourteen. The tears were streaming down her cheeks as she told me that it had been hell losing her, and the anniversary was coming up. She then went on to talk about no matter how much they whine, cry through teething, and act up that I should enjoy it all. She looked at me for a few seconds, and I told her that we don't take any minute we have with her for granted. We think she is wonderful, and know that we aren't always promised a future. I thought she was going to follow me to the car.
After I buckled Abigail in I sat there for a few seconds attempting to not cry before we moved on to our next appointment. The past week I have been constantly reminded of how uncertain our future is. I hope that I am never on the side that this wonderful woman is, but I hope even more that no matter where life leads us I will remember that God has gifted us with each day and to be thankful for it.



To end a little lighter our dentist appointment went wonderful. I'm sure I've mentioned it before, but we go to a pediatric dentist and we LOVE him. Dr. Jeff is funny, great with kiddos, and just always has something encouraging to say. Abigail usually cries through her teeth getting cleaned, but as soon as it's over she sits up and waves at everyone smiling really big. Then one of the hygienist takes her hand and allows her to pick out 20 toys and all of the other hygienist tell her how cute she is as she walks by. Today though Dr. Jeff told us that her teeth were very healthy and that he wished some of his other patients did as well taking care of their teeth as we do. I wanted to grab the man and hug him. I didn't expect anything horrible from a dentist appointment, but our last few visits to doctors have wielded bad news. This felt like a win, and even if it's a small win, we'll take it!





Rejoicing in the day the Lord has made,

Sunday, April 25, 2010

After the article and apointment.


Abigail dancing and spinning.

Oh my goodness this is my 100th post. I feel the pressure to make it awesome. Okay really I am going to write whatever I want because it's my blog. This blog will have a couple of streams of thought in it. Hopefully I can make it all make sense. The thoughts all stem from the article on the front page of the paper on last Monday, as well as finding out that Abigail most likely has a tumor on Tuesday. Here we go.


First off, we have had an awesome response to the article. I have had tons of people contact me. We are trying to figure out how to do a support group. Everyone who has contacted us has offered prayers for our daughter and our family. And truly I covet those more than anything else anyone can offer. We are getting recognized when we are out (I am certain being an interracial family, as well as having a one year old in glasses makes us stick out anyway). I can not believe how much God has used this story to connect us and touch people's lives. Even some of our friends who knew about Abigail having NF didn't realize the extremes of the disorder and felt better informed after they read the article. So we are feeling thankful.
Another thought has to do with how easy it is to get caught up in the minors of life. We often start to focus on things that feel significant, but in the grand scheme of things they probably aren't. One of the things that really stuck out to me was how we had been attempting to stop heating Abigail's milk before nap and bed. Silly thing to think about huh. She doesn't take a bottle, but we still give her milk in a cup that's just been warmed for about 20 seconds before each sleep for her. I had been trying to stop warming it just to drop a step. She wasn't drinking very much of it. After Tuesday I thought, why the heck am I not warming it. She likes it. It's not harmful to her, and it doesn't take that much time or energy for me to put it in the microwave for 20 seconds.
It's been one of those weeks where I stand back and try to reevaluate what's important. I am remembering that we aren't promised tomorrow, or even later this afternoon. So yes I need to wash laundry, and load the dishwasher, but I also need to read books, dance, and giggle even more. Because my beautiful little girl has no idea what's going on, but I do. And if in a month we are starting chemo, and she is sick, I want to know that the month leading up to it was filled with fun and laughter for her. I want her to remember a childhood full of mama and papa being on the floor with her, and laughter, and being told how beautiful she is. Because whether she lives to be 5 or 100, life is truly too short and precious to not live each day.
I guess the other thoughts I've been having is how truly surreal it feels to be researching chemotherapy and drug trials for my daughter. I am reading as much as I can because basically there isn't anything past the trial stage that is effective for treating plexi's. I think Thursday was when it all finally hit me. It was the first day I had sat down and decided I was going to spend all of nap reading and researching. I did most of nap. At some point though I was reading through how often they take blood for a specific chemo, and for the first time since we found out I sobbed. Like fifteen minutes of the gross sounds, face covered in wetness sobbing. It actually felt good. I cried for my little girl and thinking about what life hold for her. I cried at the thought of her being poked and prodded over and over. I cried at having to hold her while someone does something that hurts her. I cried at the fact that she is too young to understand or explain this too if she has to have chemo. There were a million other things in my thoughts as I sat there crying. It's this back and forth between knowing that NOTHING has been found completely effective for this type of tumor. If we choose surgery it would most likely have to happen multiple times. Chemo has a ridiculous amount of side effects, and none of the ones they are using are effective in all plexi's. In all honesty when I look at what everything points to if she has this type of tumor, it all seems hopeless. But through it all God just continues to remind me that my hope is not in a foundation, a doctor, or a clinical trial. My hope is not in my daughter's body. My hope is in the Lord, and in Him all things can be done!





Everything is riding on hope now,

Friday, April 23, 2010

Peace

"And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus." Philippians 4:7

This is what we feel. Truly and deeply. We are doing great. We have both had moments of sorrow. However I am shocked at how peaceful I feel. I know that this peace is from the Lord, and it is as if we can literally feel those around us holding us up with their prayers. It is beyond words at how well we are doing with what the future may hold. Our hearts and minds are being guarded from the enemy telling us to be fearful, worrisome, and anxious. So with all of our hearts thank you for bringing our family before The Father, and please continue to do so.

We have talked a little over the last few days about our options. We don't know anything as of yet, obviously. Sometimes in the beginning of finding out about plexiforms, doctors take a wait and see what happens mode. However most plexis grow at some point, and because of the location of where Abigail's is (if there is one there) I know that we are probably looking at options to hinder growth, shrink, or remove part of it. So Jason and I have been talking about the type of chemo they use, the world renown doctor who is known for removing plexis (and the fact that he is in Chicago, which is within driving distance), and what all of our options are. There are goods and bads to each one. However in talking all of these things over, and having conversations with friends here as well, I realize some of you may not know what a plexiform neurofibroma is. If you google it you will come up with a million things, some scary, some not, and a lot of medical jargon that may not make much sense. So I thought I would try to give you more information without the overload.
Plexiform neurofibromas are tumors of the peripheral nerve sheaths (also know as peripheral nerve sheath tumors or pnt). A peripheral nerve sheath is the insulating material around the nerves. They form around nerve trunks and multiple branches of nerves. They run a (slight) risk of malignancy (numbers differ from study to study). They are hard to remove because they often encompass so many nerves. Even if they are removed or partially removed regrowth is often seen at the same sight. They can penetrate neighboring organs and invade into bone.
There are quite a few studies that are going on with different drugs/chemo/treatments to find something that will stop growth and possibly shrink tumors. Riley (where Abigail goes for treatment) has participated in some of these studies.
So if she has a plexi it is a "big deal." However the timing of our fundraiser (which is May 14th) seems to be perfect. While we are waiting to find out more through her MRI I am in the process of trying to get donations to fund research for NF. It makes me feel like we don't just have to sit back and take whatever this disorder throws at us. We can do things to "fight back."
I may have plugged these before, but at the right hand side are two sights where you can go to donate. The one is a friend who is running to raise money for NF. The other is for the tea party we are hosting to raise funds in honor of Abigail. If you are interested in helping to fund research feel free to choose one of those two (it all goes to the same foundation).

Thanks for all of your love, prayers, and support,

Wednesday, April 21, 2010

Weeping may last for the evening,

It's amazing what morning does to bring us joy. This morning I decided I wouldn't clean, pick stuff up, or straighten up at all. I was just going to hang with my little girl. We spent so much time just giggling together, dancing, reading books, and she "did" my hair for the first time (until I had to end the pain).
She has no idea what is going on in her little body. And there is truly something about her giggle, twirling, and smile that make it feel like everything just might be okay...even if it's just for today.
This is a video of her dancing this morning. It's a little long, but watch it if you feel like it.:)

video

Thankful that joy and hope come with the morning,

Tuesday, April 20, 2010

What we found out at the neurologist.

There are a few words people don't want in the same sentence with their small children. Things like cancer, tumor, chemo, and death come to mind. Our wonderful little beings should not have to experience any of these things. I as a mother don't want to experience these things.
But since Abigail's body is programmed to grow tumors, I know that our little bug's name will be linked to the the possibility of these things. I have written and spoke sentences with them all in there.
So today was Abigail's neurologist appointment. We had a wonderful lunch with a friend who works at Riley. We played in the atrium and looked at all the stuffed animals. We waved bye bye to the water over and over because it still wasn't there today. She then played in the waiting room in the neurology area.
I never felt the sense of doom I did last time. I wasn't anxious or scatter brained. I felt like I had it together and was ready to ask questions and hear what he had to say. And even now I think I did a pretty good job with all of it.
As I mentioned a few post back when I told you about Abigail's pain, she has a suspicious spot on her back. I haven't played with it much because frankly, I didn't want to know. I didn't want to spend two months freaking out over nothing. And even if it was something spending two months worrying isn't helpful either.
So it was one of the first things I brought up today. The response was not unexpected, but still made me want to run from the room. He played with her back a little, tickled her and then said he thought there was a plexiform neurofibroma there. He did some more in the exam and talked about a few other things.
However when he explained the tumor (he did it treating me like I knew about things already, which I did) he mentioned chemo. I was pretty much okay until then. The idea of my little girl's body being pumped full of those chemicals was a little too much.
Abigail fell asleep quickly once we headed home. I cried off and on the whole way home. I know all the statistics. I also know in reality that we don't actually know for sure she has anything, and we won't until after her MRI in May. I watched her in the rear view mirror hugging her monkey and sucking her thumby and wondering what lies ahead for her.
I know some of you are probably wondering why we didn't call you, but frankly having to tell Jason, and calling family was as much as I could do. Feel free to pray for us a whole bunch, and we will update you in midMay when we find out for sure.

Leaning on the everlasting arms,

Monday, April 19, 2010

We're in the paper!

Here is the link to our article. It was on the front page center...with 6 pictures of out beautiful little girl. :)

Becoming famous,

Sunday, April 18, 2010

Grace and acceptance


Papa and Abigail in the blanket fort they made...I couldn't get a good picture because she was on the move in there! Lots of giggles. :)

I love to read. I especially love to read parenting books. I love to sift my way through figuring out what I believe lines up with the Bible, and our thoughts on parenting. I like new ideas, and a fresh perspective.
The two favorite books I have read so far have both talked about how parenting and discipline is to be aimed at changing a heart. Changing a child's behavior is on the outside, but dealing with the heart (selfishness, anger, etc.) is what is going to help a child have lifelong success. And we attempt to be heart oriented. I won't claim perfection by any means. However our goal in correcting our daughter is to both correct what was wrong through simple explanation, redirection, or spanking, and to teach what is right. If I only tell her what she is doing wrong it will be hard for her to replace that with a right behavior.
One of the other things that has stuck out in a lot of the books is the unconditional acceptance of quirky things that might be seen as "annoying" but aren't actually harmful. Things like making noises, taking shoes off on long car rides, being clumsy, etc. Abigail has one of these, although it does not bother me at all. She LOVES the way big stores echo. As soon as we walk in the door she begins yelling. It is not a fit type yell but just a "ahh" "daa" type thing. I often get stares. I refuse to "correct" her because she is doing nothing wrong. She likes the noise, is being obedient, and is enjoying herself. Have at it I say. But those looks from strangers can sometimes tempt me to shush her.
Right now I'm reading a book called "Grace Based Parenting" by Dr. Tim Kimmel. A friend let me borrow it. I love it already. The idea mentioned above was brought up in this book (which has to be about the fourth time I've read about it) and talked about how our children need our unconditional acceptance of these sort of things. This will help them to grow up feeling secure in our love.
It brought up a few thoughts and helped me to understand why these two things have been so heavy for me. First of all I know I mentioned it before, but at one point a doctor who I had been seeing found out about Abigail's NF and asked me, "Don't you wish it was like a puppy you could give back?" I let him know that I did not want to give her back. It didn't change anything about the way we felt about Abigail.
The second thing is the story of the little boy sent back to Russia. I have not watched or read much about it. It breaks my heart, and is more than I can handle. However it sort of helps counter the thoughts I'm trying to portray.
You see I love Abigail. I don't just love her because she's mine, I love her because she is a joy. She is silly, a little shy around new people, determined, and sometimes a bit ornery. She is caring, nurturing, and snugly. I love her for who she is. I don't love her when she obeys. I don't not love her when she disobeys. I just love her. That is what God does for us. That is what I am called to do as a mama.
I don't want to give her back. I don't want to change her yelling in the store. I don't want her to be more outgoing, or less silly. I want her to know she is loved exactly how she is, and for who she is. We will not be "giving her back" because she has a disorder. We will not be making statements about how we wonder why we ever adopted her if she rebels as a teenager.
We will only do our best to love her the way we are loved by our Heavenly Father. Completely, and gracefully.





Enjoying parenting,

Saturday, April 17, 2010

Updating again...

Riley called me back yesterday afternoon (at 3:45) to see how Abigail was doing. The nurse also asked me a few more questions...which lead to her telling me I should take Abigail into the pediatrician immediately. Four a clock on a Friday. Yeah.
Somehow we managed to get in. I think it's because we have an awesome doctor, who happened to be on call for the group this weekend, so she worked us in. So we went in last night. They are doing a check of her urine because of some other things going on with that, that may or may not be related to the pain she had.
However in reality we know nothing new at this point. She said the place on her back did have hair and discoloration but was not swollen. This doesn't rule out, or in what the spot is. So we are still waiting until Tuesday, at which point I'm guessing they will schedule a MRI, so we can wait some more!
Although I'm still not freaking out yet, I am starting to be a little exasperated again. I knew April was a month with lots of appointments, but because Abigail also ended up with a raging yeast infection, we ended up at our doctors office for a blood draw Monday, check of her infection and prescription Tuesday, walk-in Friday, and back for a re bagging to attempt to catch urine this morning. I have probably mentioned before that I LOVE our doctor, and her nurses. They all adore Abigail as well. However I would like to not go to their office four times in a week.
So I'll update you again when (and if) we find out more. For now though I'm going to watch Scrubs and laugh with my husband! It always makes us feel better. :)

Escaping for a while,

Thursday, April 15, 2010

Pain


What Abigail and Mama did a lot today...thankful for that thumby. :)

We had another "first" today with our little girl concerning NF (I think). As I've mentioned around 8 million times NF can encompass a thousand different things and manifest infinite different ways. One of the things reported by lots of people with NF is pain. Sometimes the pain is due to a tumor, sometimes there seems to be no explainable cause.
This morning Abigail woke up about an hour and a half earlier than normal, and she was crying. She always wakes up happy and babbling. So I thought I would give her a few minutes to see if she either went back to sleep, or began talking to herself. Neither happened. Her crying got worse, and more persistent. So I went in. She immediately signed "hurt" and grabbed her back. I asked her if her back hurt and she signed hurt again. I picked her up thinking she may have needed a diaper change, and she immediately began crying harder and arching her back. Again not a typical Abigail behavior. She was signing hurt over and over and grabbing her legs and back. I have to give her a breathing treatment first thing so I just rocked her while she took the treatment and prayed for her.
We went downstairs and she continued to tell me her legs hurt although she was no longer crying. She spend the morning snuggling a lot, playing a little and falling more than normal. She does have days where she falls more so it may have been related to the pain, or it may have been coincidence.
I did call her neurologist even though I was fairly confident he would tell me that coming in today wouldn't be any different than coming in Tuesday. I was right.
There are two possibilities in my head for the pain. First of all lots of people with NF report having pain that the doctors can't find a cause for. Things like migraines, and just pain in general are not uncommon with NF. However one of the things on our list to bring up is a suspicious spot on Abigail's back. It has been there for a while, and because there isn't a lot they do for NF tumors unless they are causing issues, it wasn't worth making a big fuss over. We just assumed we would go Tuesday and possibly do another MRI from there.
As far as how she is doing, and how we are doing; well she woke up from nap her happy bubbly self. She did tell us during dinner her leg hurt, but she wasn't fussing about it at all. We are okay. It was a little harder for me since I was here for it. I don't like my baby to be in pain, it's hard when she can't tell me what's going on, and it has increased my thoughts on the suspicious spot on her back. I spent the morning snuggling, singing over, and praying over my baby. I just keep asking God, even now, to be merciful with her. She is too little to even understand pain, and this is one that I can't just put orajel on, or give her ibuprofen for.
So you all can be praying for the same thing. And you can be praying that if she has more pain we have the patience to endure, whether it be in the middle of the night, or holding her all day.



Praying for mercy for our baby bug,

Wednesday, April 14, 2010

True Life: I have NF

A few of the pictures our friend took. Abigail LOVES the camera...and she is just so beautiful!

I thought I would mention that MTV did a show on NF. It was their show True Life, and the one Monday night featured the genetic disorder Abigail has.
We don't have cable, so if I wanted to watch the show it would be me looking it up online, and choosing to watch it. I watched about 5 minutes...maybe a little more. I decided I was done. Jason watched it while I was gone last night. He is a very level headed man. He keeps me grounded often when I become fearful about the future. When I came home he said "you shouldn't watch it."
However he also talked about a few things that hit him. I told him why I quit watching it. There were three kids featured. They were all three teenagers, and for the sake of making the show interesting I'm sure, they were all on the severe side of the disorder. Two had NF1, and one had NF2. They didn't feature the third type of NF (Schwannamatosis).
Jason said it was hard for him to hear that both of the two with NF1 (who both had a noticeable disfigurement from a plexiform tumor) didn't start having noticeable things until 7 or a little older. He (and if I'm honest I) somehow still believe that since Abigail doesn't have anything yet, that we might just escape with the minimum. But in reality, we just don't know.
The hard part for this female and mama. Watching, and hearing the kids talk about the emotional aspect of it. Feeling ugly, getting made fun of, being frustrated with the pain and limitations the tumors had caused them. My baby will likely walk through some of these same issues. I couldn't bare to think about it. It's too much.
Watching the camera.

So there's my take on the show I guess. I'm glad they did it to get the word out about NF. I'm thankful they didn't give false information (although they did refer to it as a disease, which it is not). But it's not the best thing for the parent of a little one with NF.
I have to say that although the show left me in tears, and the last few days I have started to feel that sort of sorrow of it all settling on me, I still am not anxious or worried. I am not freaking out about our appointment, even though there are a few things that have come up. I have accepted that worrying about them will steal the joy of the next week. The appointment will come, it will pass, and we will know. But for now we are going to have dance parties, play outside, and spend as much time as we can trying to smile and giggle together. You should go play, laugh, and love with people who are important to you too. :)

Papa and Abigail being silly. Papa is laughing really hard if you can't tell.




The joy of the Lord is my strength,

Tuesday, April 13, 2010

New family photos!

We have an awesome friend who takes pictures. She did some of us the other day, and when I get them I will try to post some more. However she posted some to her blog so you can check them out. They turned out BEAUTIFUL!

http://maryjanesanddaisychains.wordpress.com

Enjoy,
Andrea

Sunday, April 11, 2010

My thoughts because of a freckle.


Our sweet lovely little bug.

One stupid little freckle. That's all it is. Oh and a few more spots on her belly. Yeap, Abigail has what I'm pretty sure is her first armpit freckle. She has a few in her groin area, and I have watched her armpits, but tonight I saw what I think is the first one. It's not a huge deal. She gets new cafe au lait spots quite often. And the freckles don't do anything or mean anything we don't already know. But something about that stupid freckle still makes me feel a little sad.
Some of it is probably because I know that "most children with NF" don't get the freckling until they are older. The reason I quoted that is because as I have reiterated over and over, there really is no pattern, predictability, or rules that go along with NF. There is just a "most cases" which from what I can tell is a pretty ambiguous idea.
Perhaps the other reason it caught me off guard a little is because it reminded me of the upcoming neurologist appointment. I don't know if it's because Abigail is older and mobile so I have less time (and energy), or if I'm learning to walk through this with the peace of God, but I haven't really been worried about this appointment. I haven't forgotten about it. I also haven't sat and cried, lost sleep, or felt sick over the day ahead.
I would like to believe it's that I'm learning to trust God with this. This morning I was thinking about how when we prayed for a child we prayed for whatever would bring glory to God. We didn't want it to be a nice pretty outline of what we wanted our child to be. We wanted it to be something that pointed at God and how wonderful He is. And it definitely did.
As I was thinking about it though, I kept thinking that I want the same thing now. I want God to get glory from our lives. I want to feel and know the peace of God so that when people look at me and ask how I'm doing I can say "I'm fine, only because of Him." I want what He wants for us. I think that God doesn't waist suffering, pain, and the like. I think He will use our daughter's medical stuff to show people who He is. I don't think it has to be through healing. I think doctors, nurses, and so many other people are changed everyday as a result of seeing a family walking through something hard, and watching them remain faithful to God.
I still worry sometimes. I still have lots of unanswered question. However the peace I feel as we get ready to do this appointment is greater than me. It can only be described as a peace that surpasses all of my understanding. It is a peace that is guarding my heart and mind as we get ready to do something that still seems daunting to me.
Peacefully yours,

Friday, April 9, 2010

Getting the word out about NF

I started this blog last summer for a few reasons. One was just to keep friends and family informed without making 20 phone calls to relay things over and over. Another was because this is what I wanted when I found out Abigail had NF. I wanted to read someones personal account of not just what could happen, but how they were dealing with things emotionally. Although I don't write only about NF, I have tried hard to be honest...sometimes to the point I think other people aren't sure if I'm okay or not. I am fine.
Today we took another big step in getting the word out about NF. We did an interview with our local newspaper. There will be a story about our little bug and the unknowns that lie ahead of us. I pray that the words are transformed into being what I was actually trying to say, instead of what I did say. When they publish the story I will do my best to figure out how to link to it on here. I think I may have figured it out...but I'm not sure.
I'll leave you with some pictures of the beautiful little girl who came quietly tiptoeing into our lives, and stole our hearts with her big brown eyes, heart shaped nose, and smile that lights up the world.


Abigail hunting eggs with her playgroup. This is one of the only eggs she actually picked up. Even after I showed her they had cool stuff inside, she was more interested in chewing on a stick. That's my girl!


Abigail partaking of her first banana split.


I was trying to get a picture of how beautiful Abigail is with her big brown eyes and her hair in an afro! I don't know if this picture even comes close to real life. She takes my breath away sometimes!

Mama of a sweet little girl,

Tuesday, April 6, 2010

Still learning

I have prayed numerous times that God would bring me whatever it takes for me to fall at His feet and worship Him. True to that prayer He has done this over and over. I feel like the running theme in my life is learning how to hope. No matter what. The verse that I held onto while waiting on our baby girl was "Hope deferred makes the heartsick, but a longing fulfilled is a tree of life." Proverbs 13:12.
It is so very true. When you are hoping for something and it is put off for a time, or does not turn out how you expect there is often a pain in the heart of sorrow and longing for things to go differently.
Abigail is our tree of life. Our fulfilled longing. After we got her I felt like I really knew what it meant to hope in the Lord. I had her middle name (Tohelet) tattooed on my foot to remind me to walk in hope. Even if our baby has a genetic disorder, asthma, and numerous other "small" things going on...I need to hope.
As I have wrestled through my exasperation, lack of trust, and worry over everything with Abigail I have fluctuated between walking out my prayer of whatever it takes, and trying to do things on my own.
All these thoughts lead up to my day today. We had a pulmanologist appointment at Riley. We see this doctor every three or four months to follow her asthma. I knew today would be pretty routine. We were hopeful that they would decrease her inhaled steroid despite the fact that she had a few rough patches over the winter.
Well I didn't get what I hoped for. They increased her nebulizer to twice a day. It's not that big of a deal. She doesn't fight, cry, or scream when we do treatments. They only take about five minutes total. Nothing really. But since I was hoping for something else I felt that sucker punch feeling.
On top of it he asked me about her asthma attacks. She had two fairly prominent attacks after eating peanut butter on two separate occasions. We had decided to not give her anything with peanuts (no brainer) and try again around two...the age lots of children outgrow food allergies. However after hearing this he said that even though what I described isn't your typical nut allergy reaction, he thought we should see an allergist. Just in case.
So we came home with a doubled prescription for pulmicort, as well as one for an epi pen in case she has a reaction again before we find out for sure if she is allergic or not.
My head knows that none of these things are a big deal. However I am disappointed. This is supposed to be my easy appointment. It was supposed to be in and out with the added fun of seeing the stuffed animals in the atrium and having "bock bock" with french fries. We did those things. It's just that the rest of the day was one of those times where I felt heartsick because my hope was deferred.
On the way home the song East to West by Casting Crowns came on. It is about the battle between our flesh feeling like we will never be good enough and God will just leave us how we are, and how God tells us how He cast our sins as far as the East is from the West. It was how I had felt the whole way home. Why do I still have such a hard time being okay and trusting God. Why do I continue to worry. As I was singing along I raised my hands to worship. I looked back in the rear view mirror to see my nineteen month old with her hand held up to the heavens. What a beautiful reminder. Because although I am still sitting here crying a little over the disappointment of the day, my baby saw me worshipping in the midst of it, and chose to do the same thing I was. I am glad that when I don't feel like I can hold on anymore, He is still holding onto me.


The little girl who is helping me to learn to walk in hope.

Monday, April 5, 2010

Skipping along and getting hit by a bus.

Yeah, I have been skipping along lately. My deep thoughts have had little to do with fears and more to do with a fundraiser I am trying to put together. I have been making phone calls, and attempting to get interviews.
We have also been spending lots of time outside. Sliding, swinging, hanging diapers on the line, and playing with sidewalk chalk have been filling my days. I feel like we have snapped out of the hellish winter full of sickness, doctors visits, and test to a beautiful spring morning with the birds chirping, and some nice light music playing.
And then I got hit by the bus. It was while we were on a walk. We are making the rounds in our neighborhood, smiling, waving, and stopping to say hello. Our friends who live up the street were getting out of their car. They are around the age of Abigail's grandparents, and always like to talk to her. So we stopped. They jokingly asked when we would be in the paper again. I told them that the paper was going to do a story on Abigail.
As the conversation continued the woman asked what Abigail had. I told her what it was and she said "my nephew has that." I almost fell over because I never meet people who know what it even is. If she had stopped with that statement I probably would've gone on in my world of happiness, skipping, and singing birds. She didn't though.
She looked up and (paraphrased) said, she looks normal. You can't even tell she has anything wrong with her. My nephew is really disfigured, and isn't very smart. At least she is smart.
Ugh. And thank you for running over me with your huge bus. First of all, I don't know why everyone seem to think that people with special needs all look a certain way. Like God put some sort of stamp on their face so you can just look at them and know they are "special." Every time I am somewhere and I mention that she has a disorder the response is always about how she looks normal.
Secondly, IF your nephew has NF, and you know anything about it, you should know that it's considered progressive. Just because she doesn't have any telltale signs DOES NOT mean that she won't. And the smart comment...well yes Abigail is very intelligent. However, that has nothing to do with whether or not she may have a learning disability. Only time will let us if she learns differently, or struggles in a specific area.
The woman was not being rude. I didn't think she was being rude. Sometimes though, I like living a happy life, feeling "normal," and getting through a day, or week, not thinking about how we have no idea what life will be like down the road. I want to just be able to skip. I'm tired of these stupid buses.

Saturday, April 3, 2010

Learning to accept things.


My perfect little girl smooching her mama.


Today we got family pictures taken. I am excited to see how they turn out. There were some posed, but lots of them were of Abigail dancing, us wrestling, and just having fun as the camera flashed away.
As you know I have had this struggle in my head with Abigail having to wear tennis shoes all the time. No sweet little dress shoes. No cute summer sandals. I have been feeling much better about it, and have pretty much accepted it and been fine. However, I have thought a lot about what to do for our family pictures. We had them taken with her Easter dress. I just didn't know if I wanted her mary janes. I finally decided to do some with her braces and tennis shoes on, and the rest were all barefoot.
Our daughter is perfect the way she is. She may not be perfect in the eyes of a geneticist, neurologist, and many other doctors. They may be able to look at her and tell you what's wrong. Some days I think this way too. She has millions of wonderful things that are right. And her glasses and orthotics are part of her perfect self. So we did the pictures in them. They aren't what will stand out in the pictures anyway. The things that will stand out are her beautiful brown eyes, her face that lights up with that same smile as her tummy mommy, and her sweet little nose.

The pictures below are from our evening spent at the park with her sister. She is adopted as well and we get to hang out with her sometimes. It's great.


Abigail playing with the stick after here sister put it down.



Abigail trying to skip like Sarah




Learning to see things from a different perspective,

Thursday, April 1, 2010

That's what it's all about....

I thought I would take a brief moment to share some funny new things from our daughter. These are the kind of stories grandparents laugh at (as well as us) but since I share a lot of our pain and grief I feel like it's good for people to know we spend lots of time laughing, and are truly a little on the goofy side.
We have had cous cous a couple of times now. Abigail LOVES it. She has started saying "tus tus" and has asked for it for breakfast now. I sort of joke, and wonder at the same time...perhaps her African roots run deep.
The other day we were doing the "where is your?" and then a body part. She knew all of them and I was pretty impressed. Then I asked her where her back was to which to she stood up and began walking backwards saying "back back back." Appearantly I have asked her to back up a few times. :) However once I started laughing she just backed all over the house.
It also has been really nice out this past week so we have been spending time outside. Abigail loves our car. I don't know why, but she does. So she walked over to it and touched it then did her sign for cold. I told her I thought it might be hot, but not cold. So she spent some time blowing on it to cool it off, like she does her food.
One of her other fascinations right now is doing the hokey poky. She used to only do it during the song, but now any song can be used with the motions for the hokey poky. If she's doing it, and can see you, get ready to be asked to join. Last night as we were putting her to bed, grandma and grandpa were here, and we decided to sing the hokey poky for her bedtime song. She cracked up as she watched the four adults doing the motions in her bedroom...we might have an idea where she gets some of her silliness from. :) The video is of Abigail doing the dance, but of course she didn't ham it up as much while I was taping it.
video