This
is a long overdue post. Sometimes the hardest things to write or to say do not
get posted. Or even talked about. But it is important for us to share this with
you all.
As you
all know, SMA affects Leo’s muscles. Without the protein from the SMN1 gene
these muscles weaken and atrophy. These muscles include the facial muscles that
give us the ability to make different expressions, to smile. You may have
noticed that Leo’s smile has changed a great deal in one year. I hate SMA so
much for this. It hurts so much. SMA has taken so much from him, but this, this
is really hard. His big cheesy smile is not the same. He works so hard with his
therapy and his z-vibe, but nothing can stop SMA.
His
smile is still there, and it is as beautiful as ever. Sometimes it is with his eyes, but he still
smiles. It is just different. He is happy, and he is having a great time. Just
because he can’t physically express the smile he once had, does not mean he
isn’t filled with joy.
He has
had an amazing past week. He went to Edventure, and he loved it! There is so
much he can do there! We also decided to go down to Beaufort for a few days. We
all had such a great time. We went on the dock, walked around downtown and even
went out to dinner. It was a much needed family get away. Leo did great
traveling, and he made everything as easy on me as he possibly could. Wyatt was
very well behaved, and spent the whole ride as close to Leo as he could get. We
returned home for a fun weekend with boat rides, sunsets and a trip to the zoo.
He is smiling in most of these pictures. It is easy for us to see, but wanted
to make sure you all could see it too.
Thank
you so much for all your prayers and support for our sweet boy.
Also,
1 week left to get your tshirts!!!
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