I see the bickering and whining over trivial matters, and raise an eyebrow. I see the incessant derision directed at parents of special needs children, and I wonder why. Of course, the answer to the latter question is that people simply do not understand.
I have discussed my daughter's condition in order to raise awareness, in the hopes that, perhaps, at least one family struggling to find a diagnosis may find their answer. I have not, until this point, mentioned it to make a point.
It is so easy to target parents who struggle in ways you can never imagine. Some might say, "Yeah, well, raising a healthy child isn't easy!".
Well, no it's not. I know what that's like as well. However, it cannot compare to the difficulties and heartbreak of raising a child with special needs. While it can be incredibly rewarding, and it teaches us a lot, it is something entirely different. Most of us don't want sympathy, or to "compare scars", but rather some understanding.
I gave birth to my daughter in May of 2003. She appeared to be a perfectly healthy, adorable baby girl. I watched her grow, smile, play peek-a-boo with her bib, learn to sit, to feed herself, and to even say several words.
Then, things started to change. I watched my daughter slowly lose every skill she had. By four, she was having seizures, was unable to feed herself, hold her cup, or even pick up a toy. She could not walk, and every precious word she once said with clarity, was gone.
Now, at 9, my little girl needs full care in every aspect of life. She relies completely on a wheelchair or lifting to move from place to place. She needs to be spoon fed pureed foods, and a cup must be held in her mouth for a drink. I change her diapers, give her medications, monitor her seizures, and spend most nights sleeping next to her in fear of aspiration.
We see a neurologist, cardiologist, GI, feeding team, and a list of other doctors.
She is very susceptible to pneumonia, and because of a recent bout, we just spent 11 days in a hospital several hours away.
Through all of this, her eyes are so intense, and she maintains her smile, despite being trapped in her own body. Only when her brain cooperates, can she use an eye gaze communication device. Through that, we know she can read, and we know some of her feelings and needs. I will never again hear my daughter's voice, and must rely on a computer to help her talk to us.
I must also live with the fact that, barring some sort of illness or accident happening to me, I will one day lose my child. They tell us our girls can live until their 40s, which is still too early, but countless girls in the Rett community were lost as small children and in their early 20s. I can count at least 9 on my Facebook friends list alone since October.
Even before I encountered this life personally, I had great compassion for parents of children with Autism, Cerebral Palsy, Angelman Syndrome, Down Syndrome, Spina Bifida, and the list goes on. Their lives don't need the extra stress added by dealing with the petty and the ignorant.
I don't want pity, I don't want money, and I don't want attention. What I do want, as parent of a child with special needs, is a bit of patience, understanding, and, most of all, I want other parents of children with special needs to be treated a bit better.
Having a child with very involved special needs has taught me not to worry about trivial things. I spend a lot less time judging, and a lot more time living and appreciating what I do have.
And for an extra cuteness factor, some pictures of my daughter. (I can't resist... I'm a mom)
DD at her birthday party a few years ago
Her royal cuteness just a few weeks ago at Sunday school. Yes, we did temporarily use the back of her chair as a coat rack. It's just one perk of having a wheelchair or stroller
Edit: Since many people are asking about my daughter's condition, I'll explain it a bit here. She has Rett Syndrome, which is caused by a mutation in the MeCP2 in the X chromosome. It predominantly affects females, both because it is an X related disorder, and because most of the mutations take place in sperm.The mutation is rare, and any one in the population has roughly the same chance of having a girl with RS. My ex DH and I both have normal X chromosomes.
Girls with RS develop normal for the first 6-18 months of life, then regress. Many develop seizures and scoliosis. The hallmark of RS is the repetitive hand movements. Some girls wring their hands, and others appear to clap, like my daughter. Many of the girls have their own, unique, hand movements.
It causes digestive issues, heart issues, neurological problems, breathing irregularity, and more.
If anyone wants to know a bit more, I made this video to explain it.
"What is a man, if chief good, and market of his time be but to sleep and feed? A beast, no more." Hamlet