I have been busy. Busy with caring for Littlest. Busy with schooling Oldest and Quietest on the work they got behind in during the Crazy Fall of Hospital Living. Busy with trying to plug into “real-life” people and situations that challenge and convict me.
I’m part of a Spina Bifida forum, where many expectant moms come and ask about Spina Bifida, because they just got the news that their lives are dramatically shifting and changing, and they’re scared. They’re wondering if they should bring this child into the world. They’re questioning whether this is a “good” thing at all. My heart, when a mom comes asking those tough questions, is to contact her privately and share my heart. Share the beauty. Share the heartbreak. Share that it is so.very.worth it.
Littlest is one of those “rare” cases of SB that is so severe, the experts look at him and shrug their shoulders a little, because he *will* be having some rare complicated diagnosis this time around. It’s just a matter of which one, and which part of his little body the nerve damage is manifesting in now.
He is also one of those beautiful cases. The child who is smiling despite the pain. The child who wows people with his old-soul acceptance of the difficult procedures, the scary MRI machines (he falls asleep, lol), the pokes and prods and complications. I’m sure as he ages and understands more, questions more, that my life in the hospital will be more difficult. I will be trying to explain why the pain is necessary for healing. Calming the tears that come with the anxiety. Comforting the child who is in bed and wanting desperately to get out of the confines of the hospital room.
But that’s in the future. Right now, Littlest is doing well. He’s thriving. He’s growing, developing, charging past the limitations his body has placed on him. He’s found his feet (and subsequently chewed a hole in his toe during a long car ride. Yikes.), he’s learned to combat crawl. He can sit on his own, despite “not having the muscles” to sit. He has learned the push-pull of swinging himself. He has figured out his limitations and decided they’re not that bad; he can get where he wants, how he wants.
It’s wonderful. It’s heartbreaking.
It’s beautiful.
