August is SMA awareness month, so I wanted to blog a little about a very special little boy in my life.
My nephew Declan, is thought to have a form of Spinal Muscular Atrophy (SMA) or SMARD (SMA with respiratory distress), though they still don't have a definitive diagnosis for him. SMA is a motor neuron disease, and every child who has SMA is affected a little differently. SMA is a degenerative disease that affects the ability to walk, talk, eat, swallow, and breathe. To learn more about this disorder you can visit Families of SMA or my sister-in-law Megan's blog, where she writes about their journey, here.
Megan posted a beautiful letter written by a mother with a child who has SMA that really spoke to me. This letter was published in the Fall 2010 V17 Issue 11 of Directions in the Family Letters section.
Why it's Okay to Have Hope By: Lisa W. Kay
On several occasions, I have gotten the impression that someone (often a medical professional) was trying to remind me of the grim prognosis that SMA Type I carries. I have heard of other, often more frustrating, stories from other parents. Some individuals seem to be concerned that the parents might have "false hope."
What I would really like to know is, how can hope ever be false? Is hope "false" just because that for which we hope is unlikely? Having hope would be easy if we always hoped for the likely outcome, wouldn't it? I think I will hope that Ohio State has a winning season in football. Maybe I will hope that Oprah make lots of money this year. Then I would have "true" hope, right?
Is there a cut-off of some sort-- a point at which hope becomes false? If the event in question only has a 5% chance of happening, then is hope false? Maybe a 2% cut-off would be appropriate. That's ludicrous, isn't it?
Why is it that some folks feel it is their responsibility to bring us down to earth and give us a reality check? I can tell you from experience that parents who have children with special needs live with reality smacking them in the face daily. There is no way to escape the demands that Julia's condition has placed upon me; there is no running away from the latest update telling me that yet another child with SMA has died. Having hope doesn't mean letting go of reality; it means living with joy, dignity and determination in spite of it.
That last sentence really stands out to me - living with joy, dignity and determination in spite of reality. That's exactly what hope is to me.
The lack of certain diagnosis has been very frustrating for those who love Declan, because it's impossible to know what to expect. I think in such a circumstance hope is the only bearable outlook. I admire my brother-in-law and sister-in-law so much, and love seeing how instead of dwelling on statistics they instead celebrate and cheer for each new milestone. They truly live with joy. This little boy is incredible, and continues to grow and develop. Jeff loves to hear about the physical therapy that Declan does - which he started at 2 weeks old! He is now 18 months old, and is now learning to master his first wheelchair! He loves to feel different textures, make noises, and adores his family.
We went home a few weekends ago for another sister-in-law's wedding, and I was amazed to see how much Declan had changed in the six months since I had last seen him. While SMA is degenerative physically, the mind is not affected. Declan has a bright little personality and I have so much hope and love for him.
Megan takes fantastic pictures of Declan all the time - which is great news for aunts who live on the other side of country! :) Most of the following photos were taken by her, and a few by me.
Loves lights and sounds!
Sitting up on his own!
Figuring out the wheelchair!
Lighting a candle for SMA awareness at the wedding.
Jeff and I with Declan at the wedding. Such a cute little guy!
Sadly, there is no treatment, and there is no cure. SMA is the #1 genetic killer of children under 2. However, SMA was selected by NIH (National Institutes of Health) as the disease closest to treatment out of more than 600 neurological disorders. I'd encourage you all to donate to help find a treatment to SMA if you are able.
Labels: Oh Brother - The Family Files