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,

Tuesday, October 26, 2010

Blessings abound.

Very recently someone asked Jason and I how we were doing. Not just a hey how's it going, but an actual I want to know how you two are. We both had to laugh. It had not even been twenty four hours since we had an intense conversation where we talked about what all was going on with Abigail, how we were doing, and what our thoughts were on all of it. We don't grieve the same. We don't think the same. We don't deal the same. Sometimes it causes tension, but slowly we are learning to be accepting of each other's way of dealing with things.
Really we both had to say we are doing well. This may be the first time that, even with lots of craziness and things in the air, I truly feel emotionally fine. I am overwhelmed by a lot of it. It takes it's toll on me. But I'm not crying all the time (crying is fine) or losing sleep over all of it. I have learned that it's okay for me to take a few days to process things instead of trying really hard to be fine.
Beyond that though I think it has gotten to a point where, although the ache for my daughter to not have all of these health things in her life is there, it is masked some by the feelings of how truly blessed we are. I watch her laugh, dance, jump, paint, color, sing, and read. And for that I am thankful. She snuggles in against me and sucks her thumb asking to "wock" and I do because there is no greater joy for me than to hold my baby and feel the weight of the blessing in my arms.
Abigail tells me the color of everything, the shape, she points out letters, and counts things. And for her incredible intelligence I am thankful. This is something specifically that I feel like God has showed me His mercy with. I have wondered what (if any) issues we would be facing down the road, and tried to prepare myself. It could be physical, but it also could be intelligence. And I planned to be proactive. But then my plan to teach her a color or shape every week until the new year went out the window when she learned them all in a week. My goal to work on numbers for the first few months of 2011 has been surpassed, and if she continues at the rate she's going she will know all of her letters by the new year. It feels as if God has exuberantly showed me that He is holding all things in His hands. Because in reality, she has three strikes against her as far as being at high risk for low i.q. or learning disabilities. But God doesn't care about statistics.
We have a home, that despite it's flaws, and mice, is home. It's warm. It's safe. It's cozy to be in. We love the hardwood floors, and space that abounds. We love that the mortgage payment is less than our rent for our 400 square foot apartment we used to live in (and it includes taxes and insurance). We feel blessed to have enough land outside to plant a garden, draw with sidewalk chalk, and let Abigail swing and slide. For all of these things we are thankful.
We feel beyond worthy of the amount of money people have shared with us, and how much it has helped with gas, meals, and parking prices for our trips to Riley. We feel blessed that my full time job is caring for Abigail, figuring out appointments, therapies, and traveling with her when I need to. I can't think of any job that would have been flexible enough to work with all of the appointments we have been to in the past 17 months. We are thankful that Jason's job is close enough he can walk so we only need one car. We are thankful that his hours are somewhat flexible, and that his boss loves Jesus, and is understanding of all that our lives hold. We are thankful that even if we don't make much, and some might affix the word "poor" to our livelihood, that we always are able to pay our bills, and buy food.
We are also thankful for the way God provides so abundantly for our physical needs. Since Abigail's water must now be thickened with applesauce I had been trying to find someone with apple or pear trees so I could make some. Meijer had apples on sale so a friend picked some up for us and I made some apple sauce. Pears were on sale as well so I made just a little bit of pear sauce. And then Sunday some friend's parent's showed up at church with two bags full of pears. I took them all. I spent last night making pear sauce. I don't know if we have enough to make it all the way through the six months of thickening, but we will have to buy much less at the very least. It was wonderful for me to see how God heard my want (maybe it was a need?) and orchestrated parents from a few hours away coming to visit and bringing more pears than any one person could eat. For this we are thankful. I had also hoped to not have to buy any more straw cups. We had a few and only needed a couple more to be able to get us through this time. And a friend had two extra she let us have. Abigail thinks they are pretty special too...every time she drinks from them she tells me "Gus."
As you can see, I'm sure, it's hard to stay focused on the bad when there is so much to be thankful for. Our lives are full of wonderful things to celebrate. So we will take time to grieve, be sad, and even angry when we need too. But we won't stay there because we have too many blessings to stay focused on the bad.

Thankful,

P.S. We are looking for a cheap (and by cheap I mean free) place to try to get away for a weekend. Just Jason and I. If you know of anywhere in the Indianapolis area (or not too far driving distance) let us know be e-mailing the address on the side. We love people, but don't want to hang out with anyone. We want a weekend with just the two of us. :)

Sunday, October 24, 2010

Happy adoption day!


This is our sweet baby bug exactly two years ago today. She was seven weeks old, and the sweetest thing we had ever met!


Mama, Papa, Abigail, and Judge Feick after everything was made official. She was now our Abigail Tohelet. The judge also shared that enjoyed doing adoptions because he deals with so much bad stuff that the adoptions help balance it some. We sent him a thank you and copy of this picture. I hope when we adopt again he does the next one.
Celebrating adoption day a year ago with her monkey we got her. Crazy to think she wasn't walking yet!

Reading "Family Ever After" the adoption story book we made for Abigail on picaboo. Would highly recommend the sight, and making a book if you have an adopted one.
Abigail wearing her backpack and slippers she got for adoption day today.
Happy adoption day to a little girl who has blessed our lives, brought us unspeakable joy, showed us grace, and taught us how to laugh more than we ever have before. We are thankful for you in ways we could never put into words. Never stop being who you are and showing us that happy face of yours. We love you baby bug!
Thankful for adoption,

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.

Wednesday, October 20, 2010

#4 on it's way

The chaos of life seems to just be trading one thing for another right now. Once something seems to be on the upswing we have a new thing to deal with making me have to laugh at the ridiculous amount of crazy we have going on. I might just be laughing to keep from crying, but I'm laughing none the less.
We are still working on getting Abigail to enjoy her thickened liquids. Since her water has applesauce in it we call it juice. And although she has been drinking it, she still ask for water about ten times a day. And the milk transition has been horrible. We are on a new attempt after backing up and thickening a little at a time instead of all at once. Nap time got a few swallows and no tears so we are hoping this time it will work.
Beyond that she has had two darkened areas on her leg we have been keeping an eye on. One of them recently started to feel like it had a little knot under it so I called the neurologist. They suggested I take her to our family doctor to make sure it wasn't anything else. I put it off because even if it is a tumor, there isn't a whole lot they can do, and I didn't want to do another MRI yet. So yesterday Abigail told me she had a boo boo. I asked her where and she pointed to the spot with the knot under it and said hurt. So I decided to take her to the doctor. And now we have another MRI at the end of November. *Sigh*
Other than that our world has been filled with smaller ups and downs like a broken furnace that is now fixed and a friend who has struggled with addictions, and been clean for a while, was missing for a few days, but has called and all is fine. Our lives are never boring if nothing else.
On a much happier end of things we had a routine dentist visit today. Abigail has cried through her others, but has always still let them do what they needed to (just with big sad tears running down her cheeks). Today my two year old was a rock star. She got her pouty lip out a few times, but not one tear. I would have been proud of her even if she had cried, but the dentist and hygienist were very impressed at what a big girl she was. And to tell you the truth I was too.
There are times in my life where my biggest lessons have come from the tiny one God has entrusted to me. The days I feel overwhelmed with all of the appointments, poking, prodding, and driving; I can look down and see a toddler overjoyed to be playing with different toys, seeing the nesquick bunny when we drive by the factory, or getting to watch the television on the ceiling at the dentist office. I mean if the sweet little one who is receiving all of the pokes and prods from strangers can take it I should probably act a little more like my two year old. She makes our lives of chaos seem like a walk in the park.
The pictures below are from the night Jason decided he would swaddle Abigail to be silly. We haven't done this since she was about two or three months old. Now she ask to be swaddled and rocked at least once every evening. And who am I to say no to a request that allows me to hold on to my toddler being a baby for just a little longer. :)

Living the life,

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,

Tuesday, October 12, 2010

I don't know how to be still.

I can't begin to describe how overwhelmed I feel. I have had a few really hard days over the past couple of weeks. My two hardest days have been accompanied by a phone call from a friend to let me know she had been thinking of me and praying. My second one was met by an e-mail saying the same. And although both made me feel a little better, I still felt like it is all just too much.
So this afternoon I layed Abigail down for a nap and started cleaning, picking up, and just doing everything I could to not let myself think too much about all of the upcoming things. I turned on some pandora and refused to be still.
And then "Come and Listen" by David Crowder came on and I could hear the whisper of God telling me to come and listen. I tried to ignore it. I didn't want to listen, I didn't want to think, I wanted to keep moving.
But I gave in. I sat down and picked up the Bible and opened to Psalms. I find myself doing this a lot lately. I don't care which one I read, just something to speak to me. And this is what I read:
"God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging." Psalm 46 1-3
And I immediately thought how parenting a child with the medical possibilities Abigail has feels like the earth is giving way, and the mountains are falling into the heart of the sea. It feels like everything around you is getting ready to fall apart. Things are not following their natural order and all hell could break lose at any moment. And sometimes it does.
However that is not the end of the verse. I continued reading and the end of it was what I needed reminded of.
"Be still and know that I am God; I will be exalted among the nations, I will be exalted in the earth." Psalm 46:10
When I read this there was the reminder of realizing that I need to keep in mind that I don't know what God is doing. And whatever is happening, and will happen with Abigail He will be able to use to be exalted. So instead of letting the turmoil overtake me I need to be still. I need to sit and listen because the whispers of the Lord are always full of sweet things that I need to hear.
So I prayed and told God I had no idea how to be still in this. I don't know how to even let go of the fear, pain, and ache in my heart that have come with all of the unknowns. And I felt that relief of just being honest. I felt the whisper of how aching for my daughter is okay, and normal. And the questions, and things I don't understand are things I need to wrestle with, and be honest about. So I thought I would share a few things that I have trouble understanding.
*Why does the Bible say by His wounds we ARE healed. Not that we will be someday, but that we already are?
*Why are we told that whatever we ask for in His name we will be given?
*Why are we told to call on the elders and have them pray and the prayers of the righteous will bring healing?
I don't know that I even need answers, just to wrestle through what each thing means to me; to figure out what to do with the things in the word that don't always make sense to me.
I'm thankful I serve a God who allows me to wrestle through these sort of things because I know in the end it will draw me closer to Him, and that His love for me does not change when I am full of questions without answers.

Still learning,

Friday, October 8, 2010

About that word hope again.

It was almost a year ago that we sat in a neurologist office with Abigail for the first time to find out she unofficially met the diagnostic criteria for NF. It was also a year ago she was diagnosed with asthma. I had recently started to feel like I was closer to the side of sanity again. I had stopped fearing every new doctor's appointment as the next horrible thing that would happen. I wasn't freaking out about every new bump or spot on Abigail, certain it was her first tumor. I was starting to feel almost like the NF was just a part of our lives.
And just like the first time we heard about NF, I took Abigail to the doctor for something completely unrelated, and got sucker punched with something new. So now I am in the waiting mode to see if she has mastocytosis. At this point if she has it I am certain it is mild. The thing is though, it's definition is like that of NF...most cases are mild, some are not. We don't have any way of predicting what will happen.
I feel like I'm caught in some sort of weird parent nightmare. Because it seems unlikely to have a child with a disorder (NF is not technically rare) that nobody has heard of, and then to also most likely have a second rare disorder. I mean does that really happen? And if it does it doesn't happen to us...right?
I am overwhelmed with it all right now. I want to know something now (our appointment for the masto is at the end of November). I want to find someone to blame. I want to fix this all. It feels so surreal to be in the same spot emotionally a year later with something different.
As I write about all of this I also feel torn. I feel SO fortunate with Abigail because of things we have already bypassed with the NF. I feel fortunate that although both of these disorders leave her at higher risk for being on the autism spectrum, we see no signs of that. I feel fortunate that I watch Abigail learn new things, say new words, walk, talk, laugh, eat, play, and everything else a typical two year old does. I am very aware of how easy we have it, even with all of the medical stuff.
But honestly, the craziest part of all of this to me is the word that God has whispered since before Abigail came....hope...I need to learn to hope. And not just hope that everything turns out okay, or that she outgrows the masto and never has the bad stuff from NF, but hoping in the one who can save her; the one who knows the cure to all things.
While we waited on a baby God told us to hope in Him and what He could do. And the story he spun into motion with our little girl could not be more beautiful. The things He is still writing and doing, have spurred me on to hoping for more than just a little girl for us, but hoping for the lives of her birth family to be changed by her presence in the world. And then learning about the NF all we could do was hope in Him. There isn't a doctor out there with the answers for this disorder. Nobody can tell you what the future holds. So I slowly remembered what it was like to live in hope; how it feels to be held up by the one who hung the stars and moon. And for whatever reason God gently nudged me over the summer to hang the word hope over all of the windows in our house. To remember to look at the world outside with hope in my eyes; because I know the one who can do all things.
And here I am again, losing hope. Feeling like I'm unable to swallow this, and trying hard to read what I can, talk to people, do whatever is in my power to figure out what the future holds. I don't believe that God has caused any of this suffering. I do believe that He refuses to waste it. And so with each new thing that comes into our lives it seems to all point back to that one word. The one thing that can lift me up and keep me moving forward when all I really feel like doing is laying down and waiving my white flag. But I can't give up. I can't back down after getting a taste of the things God does when we put our hope in Him.

"And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ will himself restore, confirm, strengthen, and establish you." 1Peter 5:10

Ready to be restored, confirmed, strengthened, and established by Christ,

Wednesday, October 6, 2010

Does it really matter.

There has been lots of talk of the issue of bullying lately. Ellen talked about it, and I have read this blog post as well as this one. Since I have heard about the four teens who have taken their lives as a result of bullying it has made me think about a lot of things.
First it brings back floods of memories of being bullied. I hated my life in junior high and most of high school. I'm not certain if I have gained my self confidence back or not. I am also not even sure I'm ready to write all of the things that took place. But I was definitely a target for a small amount of time in my life.
Secondly it makes me think about my baby. I would do nearly anything to protect her from this sort of taunting. I read other people's stories on the forum about being teased because of their spots, tumors, and on top of that Abigail has spots (that are most likely the mastocytosis), is adopted, and is a different race than us. She has lots of easy targets for bullies. And it causes me to fear for her future.
And as a mother I hope that I can instill in her that she is an amazing, beautiful, and worthwhile person. I hope she feels safe coming to me and that I never dismiss her pain as "kids being kids." And I hope that she does know that life gets easier (in this aspect) as we get older. Nobody around me makes fun of my clothes, my hair, or my social awkwardness. They don't care because they too much going on in their lives to care about something so trivial.
But then today I had a woman say this to me and it's all I can do to not try to find her daughter. While in the library a woman turned around and told Abigail, "Oh my goodness you are adorable." She then looked up at me and changing her voice to a more tisk tisk type voice she said, "She is adorable. I have a daughter who used to be adorable too. Now she's twenty one and is getting tattoos all over her back."
I stood there completely dumbfounded that ANYONE could say something so horrible about their child. Part of me wanted to scream are you f***ing kidding me that the tattoos matter that much to you. Another part wanted to share that I have a tattoo and nose ring and am married to a man with dreadlocks...we are apparently very ugly. And then part of me wanted to tell her that people like her don't deserve children.
Those were all initial reactions and thoughts. I have no idea what type of parent she is, what her daughter is like, so on and so forth. But I will tell you this. Jason and I have discussed numerous times the myriad of decisions that our daughter could make for the future. Our conclusion: does it really matter?
Some of it does. But what it all comes down to for me, if my daughter grows up and works at McDonald's, has 15 kids, and smokes like a chimney, I will be sad about some of the choices she made. I will love her, think she is beautiful and come with my 15 grand kids while she's working her shift at McDonald's to get them food.
If she gets a tattoo on her face that is ugly and hideous, I will love her and think she is beautiful. I can think of nothing she could do that would change that. If she winds up in prison I will go visit her, pray for her, and love her.
None of these things are things I would be excited about. But in life and in parenting you choose your battles. Tattoos, piercings, and not going to college are not worth the battles where you end up not liking your child. They don't affect your child's heart; and that is what makes her beautiful.
I would like to find this girl with tattoos on her back and tell her "you are beautiful and you are loved. Your tattoos don't define you. What others say about you doesn't define you, and what your mother thinks of you doesn't define you." Because my brief encounter with her mother made me believe that this young girl could join the ranks of people believing that they matter so little, or that their problems are so huge, that their lives are no longer worth anything.
And young people, old people, and in betweens: Your life is worth it. What the kids at school say about you, and even what some of your parents say about you is not based on truth. They obviously don't see what I see in all of you, because I see beauty, worth, and awaiting awesomeness.

Tuesday, October 5, 2010

You are good

When the sun starts to rise
and I open my eyes you are good, so good
In the heat of the day
with each stone that I lay
you are good, so good,
With every breath I take in
I'll tell you I'm grateful again,
When the moon climbs high
before each kiss goodnight
you are good
With the road starts to turn
around each bend I've learned
you are good, so good
And when some body's hand
holds me up helps me stand
You are so good
With every breath I take in
I'll tell you I'm grateful again,
'Cause it's more than enough
just to know I am loved
and you are good
So how can I thank you
what can I bring
What can these poor hands
lay at the feet of the King
I'll bring you a love song
that's all that I have to tell you I'm grateful
for holding *her* life in your hands
When it's dark and it's cold
and I can't feel my soul
you are good, so good
when the world is gone gray
and the rains here to stay
you are still good
So with every breath I take in
I'll tell you I'm grateful again
And the storm may swell
even then it is well and you are good
"You are good" Nichole Nordeman
I changed the lyric of holding my life to holding her life. The first time I heard this song I had checked out a c.d. from the library, put it in on the drive home, and it was right after we found out about Abigail's NF. I was in a drive thru for something and was sobbing uncontrollably. The woman at the window had no idea what to do. I didn't care. It's truly how I feel in the midst of the chaos of our diagnoses and appointments. All I can do is thank God for the beautiful gift He has bestowed upon us, and sing my praises at how good He is for holding our little bug. I am grateful that He is holding her life in His hands. Enjoy her dancing to the song (it's sort of long).


video

Why are you downcast, O my soul? Why so disturbed within me? Put your hope in God, for I will yet praise him, my Savior and my God.

Psalm 42:11

Monday, October 4, 2010

Our new things

I find myself in this vicious cycle of living, feeling okay, and then getting smacked with something new. Something new to think about, something new to worry about. And I'm tired of it all. I don't know if I always recognize the signs that I'm stressed physically, but when I look around my house and see the dishes in the sink, the beds not made, and the piles of stuff lying around it's obvious. When I'm stressed and my life feels chaotic it shows up in my house.
We are still waiting to move forward with more appointments. I feel like I say that about every two months. I shared that we had seen the developmental pediatrician, but not what she had told us. She called on Friday to share the rest of her thoughts (that's right she called, not her nurse, not a scheduler, the doctor) and what she had come up with after talking with Abigail's neurologist. So I'll share the list with you of what lies ahead.
First of all we have a swallow study on the 15th. This will be to see if Abigail is microasperating. The symptoms of intermittent vomiting, unexplained fevers, and asthma flare ups every few weeks could all be easily explained by this. And because of her low muscle tone it would make sense. So we will find out in a little under two weeks if this is the case. I am not extremely worried about this. I think it's a very real possibility, but I don't know what they do for it, so I'm waiting patiently.
Next we have the issue of profusely sweating at times that nobody else is even hot. So we will have a urine test done to check for a pheocromocytoma (a tumor on the adrenal gland...not uncommon in NF patients). I am not worried about this one at all...mostly because she doesn't have any of the other symptoms, and the doctors are doing it to be proactive.
We will have a video eeg done as well. This is due to the leg tremors, as well as the fact that Abigail hasn't slept through the night in the past couple of months. I'm not very worried about this one either. Once again trying to be proactive, and cover all the bases of what could be going on.
And lastly, the thing that has my head spinning. Abigail has had these reactive bug bites for a little while now. We had thought that she had eczema as well as possibly some other childhood skin ailment. And although those are both possible we are now beginning to think that's not what has been going on. Her bug bite reactions have left her with blisters and these brown patches that look like bruises in quite a few places. It is bizarre because she is still getting them, and Jason and I are not getting bit. She had a blister on her arm last week when we went and immediately Dr. Keck asked me what it was. When I explained the bug bite theory she kindly said she didn't think that's what it was, and told us to look into mastocytosis. I linked to a page that explains it. Over all it is mostly likely only dermal, but there are some things that go along with it...like the possibility of anaphylaxis with no warning or cause, that is a little overwhelming to a mama. It's apparently an extremely rare disorder, and although none of the NF literature says so, there seems to be a possible link between it and NF. We are waiting on our phone call from the dermatologist at Riley to figure out where to go from here. However in reading it's a little overwhelming to come across words like leukemia...as well as reading about the possibility of needing to be on a low-histamine diet. I became extremely overwhelmed after reading through the list of things she couldn't have, especially since her favorites are on there. So we are waiting some more to find out where to go from here.
I had once again gotten excited that Thursday would be our last trip to Riley of the year, for our routine pulmanologist appointment. But we have already added another, and it is appearing as if there are more to come. So as always feel free to pray for us, Abigail, and what the future holds. With each new step we take on this adventure I'm learning that God really is the same yesterday, today, and tomorrow. That as life holds ups and downs for us, and I start to get overwhelmed with it all, that the consistency He brings is all I need.

Trying to rest in the one who holds her future in His hands,