There were so many times during the past couple of months before we got our diagnosis that I feared losing Hannah within a matter of months. NPC scared the hell out of me. Not only would that disease take her away from me quickly, but it would do so in such a horrific and debilitating way. Gaucher’s Disease, even with it’s challenges, gives us much more time.
I was so afraid of the day that she may lose her smile, her ability to know “mommy,” and the excitement she displays when she sees me or hears me come into the room. I spent so much quiet time focusing on the little things between us like the way that she caresses my arm and face when she is tired, the way she just looks into my eyes when she is lying next to me cuddled up against me, the innocent giggle she makes when I slightly tickle her, and the feel and smell of her skin.
These things created such a beautiful feeling inside me, something that cannot be truly photographed or even caught on video. It is so cliche, but we really do need to cherish our children’s daily moments, regardless of their age. They will never be that young, innocent, and unconditionally loving towards us as parents again.
You’re so right. All of my daughters can be gentle and touchy feeling, but the two youngest ones still run the little hands across my arm when they’re near me or take pleasure in sneaking a feel of my legs. Sometimes I just smile and other times I caress their little cheeks. Those types of moments are priceless.
Reading your blog has got me thinking about what we went through in the beginning just after Connor’s diagnosis. I’m going to blog about the first few weeks of coming to terms with Connor’s prognosis, and I think I’ll blog about them. I’ll link back to your post.
~Jess
Reading your blog has got me thinking about what we went through in the beginning just after Connor’s diagnosis. I’m going to blog about the first few weeks of coming to terms with Connor’s prognosis, and I think I’ll blog about them. I’ll link back to your post.
~Jess