Tuesday, June 21, 2011
Welcome to Italy
I'm feeling a bit fragile this week, what with Charlotte's birthday coming up. It's making me act like a jerk. Not wanting to see a friend's new baby because he will be small and cute and soft like Lily was last I saw her. Not checking blogs of close friends from our special needs world because I feel left out or something similar. Feeling resentful that old therapists and nurses and docs from our past don't just call up to say "Hey" and exclaim what incredible kids were Boof and Lily. Like everyone is moving along without us. Ridiculous, I know. Here I suddenly find myself in Glamorous Italy and I'm really missing Holland. Special Needs is a family, and it's a good one. It's close and strong and there to hold one another up. Once you are in, you are never out, even after they come to pick up the oxygen concentrator. My feeling left out is all my doing. Truth is, I just don't like the grieving. The sudden kicked in the gut feeling. The quiet. The look Non-Special Needs Family people get when they find out I've buried half my children. And the fact that I tell my story so matter-of-factly, because it's just my reality. Lot's of people's worst nightmare, my every day.
I miss my snuggly girls. Charlotte was a supreme cuddler. When I woke up terrified in the night thinking I hadn't turned on her oximeter alarm, I could go in and lay with her and hold her little chubby hands and bury my face her in thick coarse hair, smell her sweaty head. Lily slept between us the last few nights of her life, which was difficult with the feeding tube and pump and oxygen, but so worth it. I could lay my hand on chest or squeeze her foot. Hear her breath.
Lately after I finish reading to Ella at night, she immediately announces "I want to sleep in mommy's bed." Zar tends to not come to bed until very, very late, or very early, depending on how you look at it, so I let her. I love having her there, listening to her suck her thumb and sigh, being woken up suddenly by a grubby foot to the nose, but she will not have the snuggles. "NO!" She squawks. "MY PILLOW! NOT YOURS!"
After she falls asleep, sometimes I can lay my finger in her tiny curled hand, fingernails pink and chipped and slightly sticky. Usually she lets it be. Then I sigh and think on the difference between my girls. Two gave their whole selves to me to care and cuddle for, and the two who, already, are running away from me at the park, climbing out of their high chairs and only accepting hugs when they have scraped knees or bonked heads. Or are asleep.
There is a sweetness and sacredness to the absolute dependency I once knew. I miss it.