We read so many books and took the necessary classes during pregnancy. Most of which did not prepare us for the road ahead. Life was not going to include all of the typical experiences of motherhood. Instead I became the Mom of a special needs child. As I watched my daughter struggle I didn't know whether to be angry at God, cry hysterically, or just crash. It took me a long while to rebuild my faith and get a grip on this type of parenting.
I find it difficult to share my story. There are so many things I keep to myself for one reason or another. Mainly, I don't want my daughter to ever feel she burdened me. It's not like that. I always wanted to be a stay-at-home Mom, which worked out to be so important for this level of care. Also, this may be difficult to understand to Moms of healthy children, but....I no longer wish that she had been born healthy. It is a funny thing that expecting parents say that they "don't care if it's a girl or boy so long as it's healthy". Well when your child isn't healthy then what??? I have learned my daughter wouldn't be the strong feisty character she is had she not endured this battle. She was sent here just as she is to be loved and cared for by my husband and myself. I don't believe it was because we exhibit some special type of superhuman ability to deal with sleep deprivation better than other parents. (I'm referring to that dreadful line about God knowing what parents to give special children to.) She was a gift to us and not the other way around, and I certainly don't deserve any award for just maintaining her health needs. I do believe that God is showing me new reasons to share both the good and bad of it all, and that I can serve him in that way and be of some greater use.
So here's 3 things I never shared on Facebook:
1. The extent of the sleep deprivation.
Amelia had horrendous crying spells her first year. I remember one in particular lasted 4 hours that I held her, walked with her, laid with her, sang to her, rocked her, Baby Bjorned her, etc. and still could not calm her. Now I can say without a doubt that it wasn't cholic and it wasn't kidney pain but it was her itching. Her itching, also known as pruritus, is internal and is similar to feeling like you have mosquito bites all over your body. She takes multiple medications to try to maintain this. For the first 11 months however, most nights I was fortunate if I could get more than 2 hours of sleep-and that is not an exaggeration. I also had nights I sat in the floor by the IV pole that held her feeding pump. It didn't always work right and the tiniest air bubble could beep a loud alarm every minute and a half and need resetting. When Amelia managed to sleep better (which meant only getting up 5x instead of 20) I battled insomnia for over a year. It's better now, but still similar to caring for any young infant in the night. It's still common to have to get out of bed and coax her back to sleep multiple times in the night. I've lost the ability to sympathize with someone who has a few bad nights or even weeks of sleepless nights. I know it shouldn't be a contest. But the zombie in me says, Oh Yeah???
2. I don't know if I'll ever get date night again.
This one is difficult for most people to understand. My daughter has multiple medications and is fed by feeding tube. It would take weeks to teach someone how to do it, and without medical training there are still other risk factors. One of those is the possibility that Amelia could yank her feeding tube out. It is called a Mic-Key button and is a small device in her abdomen. She has and can pull it out. When she does, she needs to go to the emergency room and have it replaced in a small window of time or it can close up and require surgery.
Anyways, I don't know what it is to "get away". I pretend a nice bath is a personal vacation when the hubby is able to watch Amelia for me. I welcome most any adult conversation because I am never without my toddler, unless it is that occasional uninterrupted bath time. I've had many people tell us how important "me time" or date nights are-but that's easier said than done.
3. All.the.appointments.
Most special needs children see multiple specialists. Our Amelia has the following doctors: a gastroenterologist, a cardiologist, an endocrinologist, a urologist, an ENT, a surgeon (for anything related to feeding tube), and a genetics doctor in addition to her nutritionist, a pediatrician and a pediatric dentist. She had also been to a nephrologist and continues to maintain appointments with Audiology. She has had over 20 different ultrasounds, radiology scans/procedures, and x-rays. She has also received feeding therapy, physical therapy, and developmental therapy which are all maintained with an Early Intervention case manager. All of the above require appointments obviously. Many of those had required an hour drive one-way. It was common to make the drive twice in one week. Therapy appointments were in-home weekly or twice weekly, but have since become more manageable. I don't talk about all of the appointments, because it sounds so dramatic. People expect some definite result and most of the time there isn't a lot of information to relay. It's just a slow ongoing process. Thus we tend to not bring it up. Also, we try not to draw attention to her medical needs. We hope that you'll notice her smile instead of her jaundice. We hope you'll let her participate because she really is able. We hope you'll want to love her just the way she is because we sure do.
