Just curious

I have a healthy nearly 8 year old daughter, and a five and a half year old son with severe multiple impairments; namely Cerebral Palsy, vision/hearing impaired, seizures, microcephaly, mild autism (mainly social) and global developmental delays. He has inspired me to pursue my dreams of law school after nearly ten years out of college...

Trust me, kiss your healthy babies and love them for all the milestones they hit so easily. It is amazing how much you simply take for granted from day to day with an uneventful pregnancy and a healthy child. I don't know how long my son has on this earth, but I intend to make each day a happy and love filled one for him.

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NW20; Light Blonde Hair, Blue/Gray Eyes
“Find your own way, have an open spirit and believe in your own beauty.”— François Nars

I have so much respect for you. My aunt runs homes for the mentally disabled and I'm amazed by the adults (she doesn't have children in her homes) families because they just leave them there. Obviously they're getting the care they need, but to just leave a family member without a care baffles me completely.

While I do not have any children, I do work with severely disabled children at a school. Honestly, I can't even imagine all that the parents have to deal with & what their child's care entails everyday. I will say that I love working with these children more than I could ever imagine. I have grown so attached to them. There is so much that they bring to my life & my problems just look so minute in comparison.

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People don't care how much you know, until they know how much you care.
- Anonymous

you guys are sweet. I truly appreciate what your aunt (tash), and yourself (macattak) do on a daily basis for these special people. I have all the respect in the world for those who so easily love such adults and children who have such daily life challenges!! I have come a long way, out of sadness/anger and despair, to simply loving him for the angel he is. He has transformed me into the strong person I am today. I have to share a picture of him!! His name is Gavin.

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NW20; Light Blonde Hair, Blue/Gray Eyes
“Find your own way, have an open spirit and believe in your own beauty.”— François Nars

awwww, he is just adorable.

thanks Tash... he is a handsome dude, truly... my son does appear "normal" in a lot of respects as far as looks go, aside from a small head size (hard to tell in a picture) which makes it hard at times while shopping for example--when he starts to yell/grunt (he has no speech) or flail his arms/legs... some people are rude and assume he's just a normal kid having a temper tantrum and I am a crappy parent who has no idea how to handle it. Whatever. LOL

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NW20; Light Blonde Hair, Blue/Gray Eyes
“Find your own way, have an open spirit and believe in your own beauty.”— François Nars

He really is adorable. He is so lucky to have such a caring, sweet mom. Some of the children I work with are not so lucky & live in group homes (which may be better than living with their natural parents). I am just so glad I can be a part of their lives & love working with them

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People don't care how much you know, until they know how much you care.
- Anonymous

I agree. Like I said before, so many disabled adults get tossed into homes and their family never comes to visit them. But they get AMAZING care and it seems like they are much better off where they are then they would be at home. Makes me very sad though.

Was your son a full term baby or a preemie? My son was born at 27 weeks. He was 2lbs and 1 oz. He is now 3. He doesn't walk or take anything by mouth. He is in special ed pre school.

Karen, first of all,

No, my son was full term; we never had any clue about any possible problem(s) and were kept in the dark about the severity of his diagnoses as they came in (the first three years of his life were absolute hell).
When my son was one to three years old, I went through a lot of difficulty and anger coming to terms with the fact that I did nothing wrong before, during or after my pregnancy that "caused" his problems. The people he spends his time with in Special Educaiton and therapies are some of the most awesome human beings I have ever come across. They are angels on this earth, right alongside our little guys... you know what I mean?

Now? Everything is good. I have come out of this such a stronger, more determined person; I am sure you and your family have too.
He has made improvements; he has learned to walk with only AFO's... he cannot talk but nonverbal communication is effective and awesome to see him attempt to communicate and be social with others. Some days are harder than others... yes, but we are happier and better for it.
I don't know your son's diagnosis or his prognosis, but I hope that as your baby grows, each little milestone he hits, however minute, will be on his own timetable... and it will be a precious gift that he and your family have worked so hard to achieve. When Gavin learned to walk ("drunkenly" but he was doing it!!!), we had a huge party for him.... because he was pushing three years old.
Have you ever read that poem about Holland? I thought I'd throw it in, just by chance you haven't yet...

"Welcome to Holland"

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this:
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

- Emily Pearl Kingsley

I am here for you if you ever need to talk, vent or whatever to someone who has "been there" too!!

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NW20; Light Blonde Hair, Blue/Gray Eyes
“Find your own way, have an open spirit and believe in your own beauty.”— François Nars

That just made my day

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He's beautiful...and yes,he is an angel...
...and I think that "Welcome to Holland" story is one of the most beautiful, special things I have ever read...

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"Don't think you can....know you can."

Morpheus - The Matrix

thanks guys..
truly that poem always brings tears to my eyes, it hits so close to home. Any mommy going through a tough time benefits from reading this poem... I will never forget the first time I read it.

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NW20; Light Blonde Hair, Blue/Gray Eyes
“Find your own way, have an open spirit and believe in your own beauty.”— François Nars

Your son is such a handsome boy!!!

My little man Arii Jerious Holland just turn 4 years old this year. He was born full term and weigh 7 pounds 2 ounces and 19 inches. He was born with only one had. His right hand. Till this very day my doctors still don't know why he was born that way. Other than that, He's a smart, active and very healthy little big boy. Here's a cute but very old picture of him at 1 years old.

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