What's it like having a Severely Disabled Child?
For me it was like a near-death experience. It taught me what's really important and what isn't. I live every day with the knowledge that this day could be Emma's last. A seizure can take a CP child's life in a heart beat. I am so aware of how precious and fragile life is. Changing a diaper is no longer a chore. It's a privilege. Having a child who can only receive and who cannot give has taught me a lot about love. I know what my calling is now and it gives me direction and purpose like nothing else. I feel like I have won the lottery of life.
A ruptured uterus is a catastrophic but rare event, associated with death and injury for both mother and baby.
It happened to us twice.
Emma and Hope
Cerebral Palsy & Blindness
How Difficult is it?
The daily routine of caring for a special needs child varies tremendously. For some, like Emma who is quadriplegic, it's actually easier than caring for a typical child. It's just tedious. For others, like Hope, with behavioral disorders, it can be a nightmare. One thing we all seem to have in common is lack of sleep and that makes everything more difficult.
The Down Side
From the moment I get up to the moment I go to bed at night (and often during the night), my life is not my own. I am also on my own. People offer to pray for Emma but rare is the person who offers to babysit for a few hours so I can get away from a world where the closest I come to adult conversation is watching preschool TV programs. It's tedious and never ending, 24/7, 365 days a year. I never get to sleep in, never get a day off, and an uninterrupted night of sleep is nothing but a memory. By far, the biggest problem is an issue called exclusion but more on that in the next section.
The Fun Side
Having a severely disabled child brings with it a sense of celebrity. Because of her wheelchair and her nystagmus, Emma gets looks and attention from strangers. Feeding time, which is every 3 hours, also brings attention because of Emma's feeding tube. I even have some fun with this when children are watching. I might tell them that Emma eats through her belly button or that she has 2 belly buttons. My favorite is to tell them (then show them) how Emma farts through her belly button (the feeding tube acts like a trumpet. It's quite loud). Most people think the feeding tube is something negative but it's actually the opposite. For Emma, it changed her from an unhappy, cranky child, into a delightful, happy one virtually overnight.
The Emotional Tole
This can be enormous. Feelings of being overwhelmed and depressed are common. In our case there's also the knowledge that had it not been for mistakes made by others, Emma would not be the way she is. In the beginning this was a big issue and I went throught the stages of anger, depression, resentment, etc. before I came to the point where I realized that, although Emma is the greatest tragedy of my life, she is also the greatest blessing.
Transportation
This is a big issue for us, obviously because of the wheelchair but also because I am not able to drive due to my own disabilities. Transportation involves a lot more preparation and time because of all the stuff that has to go with us. A related issue associated with transportation is caring for Emma while she's away from home. Changing a diaper was easy when she was an infant but it's much more of a big deal now. A big frustration is disabled parking violators. When you have a wheelchair that parking space is not a convenience, it's a necessity.
A typical day in Emma's life, fun at school
Do you think Emma loves music?
More joy from another family with a disabled child
