Hearing your baby girl laugh is always amazing. Hearing your baby girl laugh when you weren’t sure IF she would ever laugh is even better. Little Baby B loves raspberries on her tummy. I mean, she LOVES them. Nothing makes her laugh like those. Baby A laughs, too, of course. She’ll laugh when you make silly noises on her tummy or tickle her. They both love to look at each other and smile.
So — yay! Little B is progressing! She’s growing, slowly. Her kidney function is about the same, and the nephrologist thinks that we won’t have to worry about a kidney transplant until she’s older. She’s doing well with therapy. She sat up with her physical therapist for about 2 minutes yesterday, and her occupational therapist worked with her today and said that she is pleased with how her tone is decreasing (the cerebral palsy makes her muscle tone very tight).
But she also cried most of the way to therapy and most of the way back. I’m always wondering what the next thing will be. What’s the next obstacle? What’s the next issue? She’s doing really well right now, but she’s having trouble eating solid food. A swallow study is coming up soon, just to make sure she’s not aspirating food. I don’t think she is, but swallowing is still tough for her. So while I watch her sister grabbing toys, rolling around, starting to move and bounce and sit — I watch and wait for Baby B to make those same moves. I don’t know if she’ll ever move as freely and easily as Baby A. The effortlessness of a baby’s grasp is only effortless if the baby’s fists aren’t tightly clenched most of the time. For her, everything requires effort. She has to be stretched so she can use her hands. The calculation required for her to get her tiny thumb in her mouth is so evident; it’s cute and almost comical, but if I think too hard about it, I get sad.
The tangle of emotions is constant. I’m so happy to hear her laugh and watch her finally get her thumb in her mouth, but what simple task will she struggle with next? She doesn’t really roll. Who knows when she will be able to do that, or crawl, really sit on her own, stand, walk, talk? While Baby A says “Ma-ma-ma-ma-ma” and “Da-da-da-da-da,” and we get some great coos and “goooo”s from Baby B — when will she call for me? How hard will she have to work to make those sounds that come so naturally to other babies? She’s beautiful and sweet and snuggly, but I feel like with her, I’m always waiting for the next thing that will be a struggle. I celebrate the little victories like the belly laughs, but then I immediately cross that off the list and look out for the next challenge.
It’s a struggle for me to live in the moment. I just want to be excited and not be filled with worry. I need a good meditation to help focus on the good things that are happening. I have two beautiful baby girls and a handsome little boy who deserve a mommy who lives in the present and doesn’t waste time worrying about the future.
So, I need to remind myself that every day is a victory. She has amazed us. When she was born, we didn’t know if she would ever be able to do anything, and she can and does do all kinds of things, and she will do even more. Wondering what’s next isn’t productive. It makes me sad, and a sad mommy is a shitty mommy. I love all of my kids. I want to enjoy each of them and all of their accomplishments without that anxious voice reminding me that the future is uncertain. The future is always uncertain. It’s time to just move past that and BE. My kids are and will be amazing.
Your kids ARE amazing & I miss them oh so much! Please give them a hug & kiss from me today. If I could just”swing by” your house today, I would. Praying for you & your sweet family!
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