Please welcome Sarah from Fontenot Four. I have asked her to come and share her story with us because it hits close to home for me. *************************************************************************************************************************
On May 16, 2006, our family welcomed our second daughter, Peyton, into our lives. She came a few weeks early, but that was because I am a high risk pregnancy and the doctor said I'd done my job and didn't need to go any farther and risk my health. I'd been watched like a hawk during this pregnancy. The only thing "off" the whole time was that the week before she was born, during an ultrasound, the tech noticed that the space between the back of her brain and her skull was measuring on the high end of the normal range. She thought that could be a positional thing, so just to be safe, they'd do an ultrasound on her head after she was born. We were slightly concerned, but not terrified. Maybe we should have been.
Once Peyton was born and they did that ultrasound, we discovered that this measurement was not an error. It necessitated a consult with a pediatric neurologist, a CT scan and MRI within that first week of her little life. She wound up in the NICU because she was jaundiced, but she was in a good place to be seen by every specialist she needed to see. In addition to requiring that ultrasound, we discovered Peyton had been born with cataracts - enter the pediatric ophthalmologist. She had hip displaysia {essentially dislocatable hips} - enter the pediatric occupational therapist and orthopedic specialist. She had a heart murmur - enter the pediatric cardiologist. Then she failed her hearing screenings - twice - enter the pediatric audiologist. And just because there was so much going on - enter the geneticists.
To this day, we have no diagnosis for Peyton. Everyone has suggested that this is a syndrome of some sort, but because she's not tested positive for anything yet, it's likely a variant of a syndrome...or a new syndrome. In fact, she was once tested for this syndrome where, if she'd tested positive, she'd have been the 5th person EVER in the WORLD to have been diagnosed with it. She wasn't.
Since she was born, Peyton's needs have increased. While the heart murmur did actually clear up before she left the NICU, it did return - actually within the past year. It's actually fairly significant. She has a mitral valve proplapse. She also developed severe glaucoma after a few months. She later developed severe central sleep apnea - not obstructive, which is the kind where you might have a structural abnormality {i.e. enlarged tonils} - but central, where her brain actually forgets to tell her to breathe while she's sleeping. She still has hip displaysia, but in the past year, all of her joints have become "dislocatable". Her shoulders are dislocated more than they are in place. She has zero muscle tone, so they just pop in and out all the time.
In addition to all of these problems {and more}, she has become "medically fragile". She has poor respiratory health. She suffers from pneumonias and other infections with a great deal of regularity. She has been hospitalized for these more times than I can count. She's had 20 surgeries in her lifetime, beginning at 2 weeks of age, for a wide variety of things.
I spent a long time grieving the loss of a normal healthy child early on. I blamed myself. I was angry with God. It took a long time, but I no longer blame myself. I've accepted it. I don't particularly like the situation all the time, but she's my daughter and I've never not loved her because of who she is. She's just different. She's still one of the most precious things in the world to me!
Peyton will be 6 next month. She's almost as big as her 8 year old sister! But she's very much like an infant. Peyton is non-verbal. I will never hear her say "Mama" or "I love you." and that breaks my heart. I've never been hugged by her. I feel her love though and that is so special to me. She doesn't sit, stand, crawl, walk, or speak. When I fill in those development grids - you know, the sheet of paper with all the boxes for various age ranges where you check off all the things your child can do - I never make it past the 8 to 12 month range. Even at that, there are so many things that she cannot do between the ages of birth through 12 months. Most boxes remain unchecked.
In the past year, Peyton's health declined a lot. She was hospitalized repeatedly with respiratory illnesses. She would never full recover and she'd wind up back in again...and again...and again. Can you imagine how hard this is on a family? Can you imagine the toll it took on her big sister, who was just 6 or 7 at the time? Can you imagine getting to a point in your child's health where you have a case worker in the hospital who is a palliative care specialist who the doctors contact every time she winds up back in the hospital? Can you imagine having the "end of life" discussion with doctors because things are looking pretty grim? Can you imagine discussing DNR orders? Can you imagine on recent visits to the hospital which are a year since those dark days having doctors confirm your DNR orders before they get into things with you regarding that current hospital visit?
Can you imagine how incredibly isolating having a special needs and medically fragile child is?
I can.
Our family's "normal" is so far removed from what society considers "normal", it's not even funny. We have some friends, but we're very isolated. We don't get much "couple time". Date nights are a very rare treat. Forget a weekend away. Forget traveling anywhere as a family. Our last "family" trip was in July 2010 - a 20 hour road trip to get home as fast as we could before my mom passed away. Peyton was as well as we could have hoped {and needed} for her to be during the two weeks we were gone. That was during the worst year of her health. We haven't traveled since.
I get assistance through home nursing that is provided for Peyton. But our hours have been cut back time and again and the hours we get {which we are grateful for} are less than half what they used to be. I cannot work outside the home because of the unpredictable nature of Peyton and our nursing care!
Life is so different for us. It's very hard. All the time. There are no "breaks". But this is normal for us. And it is what God has given to us. For whatever reason, God chose us to raise this precious little girl. We are very acutely aware that she will likely not be with us beyond her 10th year, if not before then. But God chose us. In the difficult times, I try to remember this. He could have placed her in any home - but he chose us. What an honor it is! Peyton is not a burden. She is a gift from God. She requires so much from us, but God gives us more than we could ask or imagine to just get by. He has placed people in our lives to help us through this time. He has given us immeasurably more strength than I could ever dream of having. I don't look at life as burdensome because God did not "do this to us" to burden us. He chose us to raise His precious child until such time as He decides to call her home. She is a precious gift on loan to us.
Salena had asked me about doing a guest post a long time ago and here it is. For some reason, this has just been a difficult one to write. But here it is. I don't share this with you to make you feel sorry for me or pity us or anything like that. It's simply my story that I am sharing with you. Perhaps you can relate. Perhaps not. I find, more often than not, that people can't and so they back off. We become more isolated. But if there is anything to be gained by writing this, perhaps it is understanding. Understanding for families with a special needs child. Each family is unique - special needs or not. But special needs families are "real" families too - families who desire friendships and compassion as much as the next family. Perhaps this post might give you a little insight so that the next time you see that special needs family you always see around your community or at church or wherever - you might look at their "normal" a little differently and maybe extend a hand. Not that we're looking for handouts. We just want to be loved like any other family, yet we're so isolated because we're so "unique".
Thank you, Salena, for having me here!
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Thank you for sharing your heart with us Sarah. I appreciate you taking the time out to write this out. It must have taken you some time to do it and I'm sure it took time away from Peyton. I feel your message is something that needs to be shared with others. I had no idea the extent of your challenges so I'm glad you took this opportunity to get it out.
Please show her some love and support by commenting blow or contacting her directly here.
xoxo, Salena
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