Comparing Your Child

Comparing Your Child

When my daughter was a tiny infant, you couldn’t tell there was anything different about her. By looking at her you can’t tell that part of her brain is missing and some parts of her brain are too small and some parts too large. You can’t tell the dramatic effects those brain abnormalities have had on many other parts of her body. You wouldn’t know she cuddled so calmly because she has trouble controlling her weak muscles. You would think she is just a typical baby until you saw me pull up her onesie and feed her through a tube implanted into her stomach. You’d think I was a typical mother when I obsessively checked if she was breathing. You wouldn’t know I checked compulsively because I’ve done CPR on her three times to start her breathing again. You wouldn’t know just how hard life had been since that beautiful little girl entered the world and turned everything upside down.

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Yet as she passed her first birthday, and then a year and a half, I thought had finally reached some acceptance with it all. Then I went back to “Baby Time” at the library. I used to bring her to baby time almost every week. I deliberately avoided scheduling therapy Wednesday afternoons so my daughter and I could go sit with other parents and babies and just be normal for a while. We would sing songs and bounce. The babies would stare blankly around the room and cry and coo and gnaw on things. The parents would discuss such fascinating topics as the best baby slings, tummy time and spit up. It felt great! There no one talked about therapy or harassed me to complete paperwork to apply for yet another state program. They didn’t ask me to repeat my daughter’s medical history like everyone else I saw on a daily basis – doctors, nurses and therapists. These parents didn’t flinch at beeping noises that sounded like the alarms on the machines in the Neonatal Intensive Care Unit that measured pulse-oxygen levels. These moms didn’t suck in breath when they heard an ambulance siren.

And in these mundane motherly conversations, I could relate to a lot of it. Football hold. To breastfeed or supplement. Clipping tiny fingernails. Poop. But some of the conversations stung. It hurt knowing I couldn’t breastfeed or bottle feed because my daughter had a faulty suck reflex and couldn’t swallow properly and if she tried to eat by mouth, she’d choke. The mothers would laugh about how hard the first few months were without sleep. I never really experienced that. In the first few weeks, I couldn’t stay overnight with her in the NICU, so nurses changed my baby girl in the wee hours and patted her back to sleep. And honestly, it was kind of nice to turn on a machine that pumped milk into her stomach at a continuous rate so she’d sleep 6 hours straight. When the mommies would wish their bald babies would grow hair, I could feel a little smug about my little girl with the lush curls she has had since birth. It only felt a little tainted knowing part of her hair was shorter because her skull had been shaved in the NICU when they couldn’t manage to get an IV in the already pin-pricked veins on her tiny legs and arms.

So for about 10 months, we thoroughly enjoyed our library baby time visits. No one there knew my secrets. My secrets were that I didn’t know if my baby would ever walk or talk, sit up by herself, read or write, play sports or ride a bike. I don’t think it ever occurred to most if not all of the library mothers that their babies wouldn’t do something that “normal” children do. It felt isolating. But I could pretend I fit in, and I did for those first months. Slowly, the other babies started leaving my daughter behind in terms of abilities. They could crawl to the toys. She couldn’t. They could babble. She couldn’t. Some of them could stand up. She couldn’t. They could balance themselves sitting without mama holding them up. She couldn’t. Every time I noticed another “couldn’t”, it got harder. So I started drifting away from baby time, going less and less frequently. I would say hello to the baby-time librarian when we’d be there to pick up books and promise her we’d try to come next week or the week after, but somehow, we never made it. And when therapy picked up I really didn’t have much time to go anyway, so it became a good excuse.

So you might be thinking, what’s the big deal? Just don’t go if you don’t want to go. The big deal is that my daughter likes baby time. She doesn’t really play with the other kids, but she loves to look at them. She likes the songs and the bouncing. She loves hearing a whole group of people clapping. Her eyes light up and she smiles! And it’s pretty much the only time she is around other babies. I know it’s important for her to be around other children and I think it might even help her if she sees that other babies crawl and walk. Well, I hope that maybe it would help, and my life is all about “hope” and “maybe”.

So not going is really about me and my fear. I’m afraid to sit in that circle with other parents and know that my baby is different, that she is being left behind. I’m afraid someone will ask me what’s “wrong” with her, or tell me she doesn’t walk because I hold her too much. I’m afraid there will be “looks” like the looks I’ve gotten when I have fed her via tummy tube in public. I’m afraid if I have to listen to the proud father who likes to brag how his baby walked at 10 months bragging again, I’ll punch him square in the forehead. Well, I’m not really afraid of that. I’d kind of enjoy it. But I am afraid of the assault charges that would follow. I’m afraid I will get to baby time and just cry, because my secret will be out – my baby isn’t like theirs and she never will be. I won’t be able to pretend anymore, to them or myself.

So I faced my fears and went back. And I ended up next to bragging dad and he puffed and paraded the whole time. I was kind of happy to see that his baby is still bald. So I chatted with the mom next to me, but felt sad when her tiny baby scooted past the big girl on my lap to play with another baby next to the blocks. My daughter was the biggest one there - too old for baby time really. She has aged out into toddler time. I felt the looks whether they were real or imagined. The other parents talked about crawling and walking and starting table foods. I smiled and said "Not yet!" when they asked if she is walking. I was proud of myself that I didn’t cry. At the end, I asked the librarian to step aside with me and asked her if there were any special needs kids clubs my daughter and I could attend. Then I burst into tears.

So I sniffled my way home and vowed never to return. Yet this nagging voice in my head keeps asking if I’m denying my daughter a chance to grow, a chance to see and learn and experience. That little voice is persistent. Its telling me that part of my job as her mom is to give her every opportunity she can have. It’s facing my fears and pain and anger, and getting past them so she won’t be limited by my limitations. It’s learning not to compare her, so someday I can try and teach her not to compare herself. And in wanting to be the best mom I can and do the best for my sweet baby, I find that I fit in with the other moms. In fact, we have a lot in common. So I think we’re going to try baby time again. This time, I’m going to bring my constant companions, Hope and Maybe, and a perhaps a pocket of tissues.

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