Sunday, October 28, 2012


For those who may not know, my oldest daughter Kira can't bear children. Once she realized it would be a long shot for to have a child, her and her wonderful husband Justin put their name in to adopt a child. Much sooner than any of us thought, they were the proud parents of a beautiful little boy. 

Evan has been a source of great joy in our lives. When Evan was about a year old it became obvious that something was wrong. He had developed just like any other child but not long after he started crawling his development slowed and before long he was regressing. Kira was understandably alarmed and took him to get checked out. They ran poor Evan through a battery of tests and finally there was only one test left. Evan tested positive for spinal muscular atrophy (SMA). This was a devastating diagnosis. 

To explain SMA in very simple terms, Evan is missing the genes that code the SMN protein that is necessary to keep the myelin layer protecting the nerves in our bodies healthy. The myelin is somewhat similar to the insulation protecting the electrical wires on the electrical cords for our numerous appliances. Without the missing genes he has no SMN proteins and without those proteins the healthy myelin that he was born with breaks down and without the myelin the nerve eventually dies. As the nerves die then his brain is no longer able to properly activate the muscles in his body. For this reason SMA children are born healthy and normal but gradually get weaker and weaker until they can no longer support their bodies. They eventually develop scoliosis which prevents the lungs from operating properly and most people with SMA eventually die from pneumonia.

Not all SMA kids are the same however. Most of us actually have some back up genes in our DNA that can also express the SMN protein. If a child with SMA has lots of these back up genes they will grow normally and learn to walk and then as a young child or even a teenager they begin to lose strength and the ability to walk. This is called type III SMA and they can often live to their 50's. I don't think any of us knew it at the type but Uncle Nick probably had type III SMA. If you are unlucky and have little or no back up genes then you probably won't live to see your first birthday. That is called type I SMA. Evan has a dozen or so back up genes and has type II SMA. Type II SMA children typically live to their twenties but with modern techniques and some pretty cool new drugs they may live to their fifties. 

Kira and Justin have been amazing with Evan. He receives the best care and treatment available and Kira is at the front of the line with every new treatment that is announced. She also spends hours a day giving him the proper physical therapy that will keep him strong and flexible as long as possible. Evan is now five years old and in all that time I have never even once heard either of them complain about their sons disability. They are just grateful to have him in their lives. 

Kira and Justin were then blessed with another little boy through adoption. Landon (Landon Arlen by the way after me and my dad) is about the most rambunctious boy out there. That kid is an animal and very full of life. It won't be long before Landon is lifting Evan and giving Kira a much needed break. 

Recently Kira and Justin submitted their names again for adoption and as before we didn't really expect a response any time soon but a couple of weeks ago they got a call. It was a joyous call for Kira but a very difficult one for me and I suspect a difficult one for Justin as well but I hesitate to put words in his mouth. It turns out that a very young couple had just delivered a little boy with Downs Syndrome. They had planned to keep the child but at the last minute they decided that they just wouldn't be able to give the little boy every thing he needed to have the life he deserved. They went through the list  of prospective parents and selected Kira and Justin as their first choice of parents for their little boy.

I won't go through the long list of miracles that led Kira and Justin to say yes but let me say that for Kira there was no decision, she wanted that little boy the moment she learned of him. For Justin it took a day or two of fervent prayer before he was satisfied that this little child should be his son. For me (although no one was asking) this was a very difficult time. Easily my greatest fear of all fears was that I would be asked to raise a mentally handicapped child. I am so grateful that I was never called to bear that burden and to me it seemed so unfair that my daughter who already had so much extra work in her life with Evan would now be asked to bear an additional burden with her third son. It seemed miraculous to me that for her it wasn't a burden but a joyous occasion and even a blessing. I still don't understand it but that is how she see's it and in my eyes my Kira is no less than an Angel. I have no doubt in my mind that her mansion in Heaven has been built and is just waiting for her and her husband to come and take their rightful place. 
Even though I don't understand how my sweet Kira could accept this huge responsibility so easily I am fully convinced that it is what they should do and that little Cameron will bring them a lot of joy. I am proud to call him my grandson, I love him with all my heart and I know he will bring joy into my life as well. Kira, you amaze me.

When at rest one third of the energy produced by our bodies 
is used to keep our cells from exploding.


Lynn said...

The Lord understands. Completely and utterly. ; )

I will continue to keep you all in my thoughts and prayers. I continue to think of my Aunt Lisa for days now. I am just so excited for Kira. I looked at her {watched her on the screen in the chapel the whole time she sang in the dedication choir --noted her tears that she was desperately trying to keep under control -- that sure brought the flood gates open for me! } and then thought of my sister Donna.... The immediate acceptance of her own handicapped child. The Lord truly does KNOW each of us. He perfectly knows which one is to go to which home. HE knows each of our hearts. HE knows which mother is capable. Kira is known by name. ; )

I trust that both Kira and Justin will continue to be awesome parents to all 3 of their children.

Congratulations again Grandpa! ; )

Kira said...

Ok, you just made me cry! Love you dad!