MEET A CHILD WITH SMA
is a lovely night tonight. Not too cold for a January evening.
Mommy is sitting on the front porch. A gentle breeze is blowing.
The wind chime is making the most beautiful sound. It reminds me of
you. It reminds me of the days this past summer when we enjoyed the
sunshine and the birds singing together. Oh, how you loved to be
outside. I loved it too.
Today, I am sitting here with you, only you aren't on Mommy’s lap,
you are in Heaven. The devastating disease called Spinal Muscular
Atrophy took you away from our family.
Our sweet baby girl was a happy girl who smiled a lot. She loved to
play peek-a-boo, pat a cake, and we would sing the "Elmo" song. She
loved to watch Sponge Bob too. She was a typical one-year-old
child. With the exception of all the machinery that was needed to
help keep her alive and healthy. In our home we had cough assist
and suctioning devises, I.V. lines, BI-Pap machine and many other
things that we used on a daily basis. She was involved with
physical and aquatic therapy and we spent many, many days in and out
of Cincinnati Children's Hospital.
Through it all, Madison remained happy. She taught our family so
much in her 390 days of life, things we hadn't realized in 40
years. We miss her tremendously, I am sure she is watching down on
us each and every day.