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Mom Confessions Mom Confessions

Special Needs *edit in red*

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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

by on Feb. 20, 2013 at 8:53 AM
Replies (11-20):
ScarletRose4488
by on Feb. 20, 2013 at 10:33 AM

She is beautiful!   Don't worry about other people's stupidity.   You know that old saying about God only gives what you can handle?   Well, God must think you are very strong.  (Or those other moms are weak ;) )   Either way don't let it get to you.   None of them matter.  

Jen
~ I speak from the heart because the truth is always the best - even if you don't know it yet. ~
Cassidysmom611
by Gold Member on Feb. 20, 2013 at 10:34 AM
You and your daughter are both amazing,.seriously. My daughter is autistic but your strength is.awesome. There needs to be more people like you in this world
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Anonymous
by Anonymous 2 on Feb. 20, 2013 at 10:34 AM
You rock and I think this should be posted on every site on google! I don’t have a special needs child, I do have Multiple Sclerosis myself and have been immobile for 8 weeks during at flare up and I had foot drop for a year. The looks are unexplainable. I can only imagine being the mom and Mama Bear coming out. I can handle all that is thrown at me, but I think it would be so much harder for it to be my child that was special needs. BUMP for everyone to read.
OceanGoddess
by on Feb. 20, 2013 at 10:35 AM
She is beautiful!!!

I agree ppl are rude it happens all the time when talking about my son. People always make it about them and tell me that their "normal" child is a challenge too.. They don't realize that I have to teach my child things that you don't have to teach a typical child... An the list goes on..
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Cymbeline
by Platinum Member on Feb. 20, 2013 at 10:37 AM


Quoting Anonymous:

You rock and I think this should be posted on every site on google! I don’t have a special needs child, I do have Multiple Sclerosis myself and have been immobile for 8 weeks during at flare up and I had foot drop for a year. The looks are unexplainable. I can only imagine being the mom and Mama Bear coming out. I can handle all that is thrown at me, but I think it would be so much harder for it to be my child that was special needs. BUMP for everyone to read.

I know that MS can be an incredible struggle. It takes a great deal of strength. My ex MIL has it, and I know what it has taken from her already, and she's recently diagnosed.

I hope that you're able to avoid many flare ups, and I wish you good health.

"What is a man, if chief good, and market of his time be but to sleep and feed? A beast, no more."  Hamlet

divinedimension
by Not Miss Cleo on Feb. 20, 2013 at 10:38 AM
Thank you for posting this
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Cymbeline
by Platinum Member on Feb. 20, 2013 at 10:38 AM
1 mom liked this


Quoting OceanGoddess:

She is beautiful!!!

I agree ppl are rude it happens all the time when talking about my son. People always make it about them and tell me that their "normal" child is a challenge too.. They don't realize that I have to teach my child things that you don't have to teach a typical child... An the list goes on..

That's rather frusturating, isn't it?

I think so many people just take the basic things for granted, and don't realize how much more difficult things could be.

"What is a man, if chief good, and market of his time be but to sleep and feed? A beast, no more."  Hamlet

britmichele
by on Feb. 20, 2013 at 10:38 AM
6 moms liked this

Your daughter is beautiful. Thanks for the post. Made me tear up a little.... Here's my sweetie's smile :)
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RLT2
by on Feb. 20, 2013 at 10:39 AM
4 moms liked this

 I don't have a special needs child. Your words have reminded me to be grateful for my children's health, and to remember my compassion when children aren't as lucky in that department. Thank you for sharing your daughter's story with us, she's beautiful.

Cymbeline
by Platinum Member on Feb. 20, 2013 at 10:40 AM
2 moms liked this

Your little one is absolutely adorable. His smile made me smile.


Quoting britmichele:

Your daughter is beautiful. Thanks for the post. Made me tear up a little.... Here's my sweetie's smile :)


"What is a man, if chief good, and market of his time be but to sleep and feed? A beast, no more."  Hamlet

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