Lately I've posted several times about Big C's progress. He's talking more. He's trying new things.
Other kids are on a different journey. Some children with special needs will not walk. Ever. They will not talk. Ever.
And their families treasure smiles in a way most of us don't because, for these families, a degenerative disease is months, weeks, days away from taking away their child's ability to smile.
This is true for our little friend JM who has Krabbe disease. He just celebrated his 2nd birthday. The experts say he won't celebrate his 3rd.
JM's mom recently wrote in September:
We have not seen a smile for JM since March. We are fortunate to have a very weak cry from him, I will miss the day I don't get to hear him cry.I will always do a happy dance when Big C masters another skill! But I'm ok with my heart feeling heavy, too, while I cheer.
I don't want to forget to pray and care for them...and that's exactly what a heavy heart reminds me to do.
We couldn't attend JM's bday party, so we mailed him a gift that the kids picked out from his amazon registry (I love amazon registries!). JM's mom texted me a pic so we could see how excited he was about it! ;)
JM is regressing.
Rejoicing and mourning mingle.