I just wanted to kinda get the ball rolling on some general issues. This isn't a rant kind of thing, I am not complaining, I just wanted to put this out there and invite the other special needs parents, spouses, whatever, to share what is going on. Sometimes it's just nice to have people who know what is going on.
One of my seven year old twins, Andy, was born with spina bifida (his spinal cord was open at birth), hydrocephalus (also known as water on the brain), chiari malformation (his brain stem is pulled down into his neck), and clubbed feet. Miraculously, he walks and runs, even though his lesion is at the L5 level, but he has no neural connections between his spine and his bowels and bladder, so he leaks continuously and has no control over his bodily fucntions. BUT, that is pretty small potatoes considering how incredibly functional he is. He has some learning disabilities, but nothing too bad, really just annoying, like short term memory problems which makes it hard for him to grasp basic concepts. Sometimes I really worry about him, because he is in public school with diapers (and probably always will be), but God has worked everything out so far.
I'd love to hear more about Jon's son, and if anyone else has anything they would like to share that would be great. I'd also love to hear great things in this thread, the triumphs we special needs parents have are incredible.
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thanks fo rthe invite to share about being a special needs parent. to be sure there is lots to share so i'll have to push it back to tomorrow morning when i have more time to devote to sharing in full.
thanks for the info on your special guy. you had dropped a few hints but it was nice to get the full picture.
not that i'm bragging or anything, but special needs' parents are about the coolest people in the world. ;-)
I would love to learn more so I can know better how to pray. But I will say as an aside that my oldest dearest friend has a special needs son, and I was with her through it the first several years. I just want to interject that I have some idea of how hard it is and what it takes to give your kids every chance...I don't think my friend slept for like 4 years...and as a parent I know you just do what you need to do, but still, I applaud you for all it takes.
Hmm... I applaud you, too. I don't have any kids. But my uncle had muscular dystrophy. He lived to 17. I was 2, but I remember him a little. He used to let me crawl on his wheelchair. My grandmother used to carry him around on her back with her. This was in the 50s and 60s. Hmm... I miss him.
I also have a friend who is 52, I think, and has cerebral palsy. He has never been able to walk except with a walker, and then just barely. Has exclusively used a wheelchair for some time now. But he has been living on his own - no roommates, even - since 1982, so that's what, 26 years... and he does fine, writes music and poems and choreographs modern dance. And is a bit of a wise-ass. :-) Tools around town in his motorized wheelchair and hmm... has been a good friend.
Tyler, it's very cool that your son is in public school. Kids can be as accepting as they can be cruel. And if they don't have something obvious to be cruel about, at times, they will find something - it's the nature of group-think, whether you are a child or an adult. I bet he does fine, though.
Peace and Strength and Wisdom to you and Jon, both as you raise you children.
Jon, I think that Gov Palin said it very well, that special needs children inspire a very special love. I can't say that I love Andy more than Matt, but it just is different. Loving Matt hasn't changed me as much as loving Andy has. I can't wait to hear more about your son.
I remember when we got the AFP bloodtests back, November 7, 2000. Stephanie (their birthmom) called sobbing, afraid that we might back out of the adoption (not a chance). We had to wait ten more days for the results of the 3D ultrasound. I remember the whole brouhaha about the election and how it seemed to surreal that people were fighting over power when my baby could be anencephalic. How we had waited through all of those miscarried pregnancies, then to be given this incredible gift on my husband's birthday by getting matched not with one baby but with two, and then a month later having this diagnosis smash our lives to pieces.
Once we found out we were dealing with spina bifida and hydrocephalus (you can see it clearly even at 4 months on even a 2D ultrasound) I bought every book on spina bifida and that is how I spent the shock phase of my grief. I knew everything a "civilian" could know about it.
Then when the boys were born four and a half months later, Andy was twice as bad as we had thought he would be. His feet were badly clubbed, he had a 1 lb sac of skin and amniotic fluid attached to his back, and the lesion (the opening in the spine) was twice as big as we had thought, and worst of all, it was three vertebrae higher (the higher it goes, it is exponentially worse) than we had thought.
One common denominator about many special needs parents is that we do not have the time to go through the healthy stages of grief. The first time I ever actually grieved was the summer of 2007. Mark took the boys to California for three weeks so i could get some renovations done and one day I just sat down and started sobbing. I had never really cried before, not after the initial diagnosis came in. There wasn't time, there was too much to do. Physical therapy, the fact that Andy had a bloody rear end for a month after birth, and all of those partial shunt failures for the first 8 months where the tube that drains off his brain would clog and I would drive three hours to salt lake city. Plus the birthfather, a sexual predator, was contesting the adoption from jail, which took almost a year and over $100,000 before it was done. there was no time to process my disappointment and my fears. Really, I still haven't, I haven't dared do it. Adoptive parents aren't allowed to do it. We have to be thankful. We have to look stronger and be "saintly" because otherwise, the "real" parents will either look down on us (which they do anyway) or put us up on some sort of stupid pedestal and treat us like we are some sort of selfless charity. But it is bullshit, to be in that trap. I am a MOTHER, no different from anyone else. I didn't become Andy's mom out of charity, I became his mom because from the moment Stephanie called, I would have died for him.
Anyway, I am hoping to be able to honestly process through this here, I get the feeling like I really need to face this and i pray that no one will use the term "real mother." It really hurts us adoptive parents. I still cringe and it makes my heart ache.
I'm not a saint, but I am their real mother.
Sorry, that became longer than I had intended. All of a sudden I started crying. I rarely do that.
Hi Erin, no applause necessary. It isn't even warranted. We do what we do because we love our kids, same way that you love yours.
Katherine thanks for sharing that, I could not imagine losing a child, especially slowly like that. I cannot even imagine what that kind of grief would feel like for him parents.
And from my experience, most people of special needs are, to one extent or another, wise-asses. You almost have to be, it disarms people right away. It is part of the charm, and it is also an effective defense mechanism.
Tyler - I get that, but I still applaud you and Jon and everyone else who deals with these kinds of things. Because it's HARD.
thanks for sharing, tyler. every special needs kid and their parents have an incredible story. and i know that what you have shared here is only the tip of the iceberg.
i have written about my relationship with zaavan in a few places before now, but i don't think i've shared about his birth and what happened in those early days fully. i think i shall, but it would require more time than i have now.
as well as the challenges we face in the present and the decisions that must be made for his future.
firstly, there is a blog that i helped my wife start where she sould talk about zaavan(ZAY-ven) and give people updates on him, but it has never really been a regular thing. there are many, many pictures for your perusal there.
here is a few others:
"lil' buddy time"
"servanthood"
"milestones"
"i made my wife cry the other night"
"alarm bells are ringing, willy"
"characters vol.1"
"characters vol.2"
"charcters vol.3"
that should be enough to keep you busy for a short spell. not to fear, though. my posts were not nearly as long winded then as they are now. should take you more than a few minutes to get through all of them.
thanks for giving space to talk about these things again, tyler. i've already cried about 4 times just in putting this together. and it feels good.
Jon, that last one just killed me, I'm bawling like crazy. I can't wait to hear more about Zaavan. I will comment more in a bit, I have wet grout downstairs.
Thank you, Jon and Tyler Dawn, for sharing your most incredible journeys, with your special needs kids!! I am really touched by each of your stories. And yet, to you, you probably think it's just your life. (and it is; but I'm still allowed to be touched by it)
I have always believed, and you may or may not feel this way, that He gives special grace to parents of special needs children. It seems you would need it.
Tyler Dawn, I'm so touched by the sheer fact that you chose not to walk away from the enormous challenge, when I'm sure many would have, upon considering the adoption. That alone says a great deal about you.
Apparently Papa had already prepared your heart, and given you what you'd need to answer the question/opportunity with love. Jon, I believe the same is true of you.
Papa has amazing ways of showing us Him, and both of your stories are amazing, for that alone.
I appreciate what I learn from you both.
Though our stories are so different, it's still the same good Daddy behind it all.
Thanks for sharing guys. Tyler, what you said about adoptive parents having to be thankful all the time etc - wow, yeah, no wonder it's so hard to process the grief even if you've got time - there's all these outside forces inhibiting you also.
I just lauged at this:
"I will comment more in a bit, I have wet grout downstairs."
Dunno, just tickled my funny bone :)
You guys are real true life heroes and nobody can ever convince me otherwise. We have a very good friend whose son has CP. They are the strongest people I know and there little boy is the most loving person I have ever seen.
One day, he sat in my lap during potluck and we got to feed each other chicken nuggets and make jokes about his dad...it was the most wonderful day!!
Tyler, I am totally with you about the "real parent" thing. It drives me nuts but I am quick to correct someone about who the real parents are!!
Oh, Tyler, wow.
I love how you explain your love as a mother. I know what it is to be a mother and have this love burn inside you.
I'm glad to know more...and I'm glad that sharing is a release for you and pray it will continue to be.
What you said- "Loving Matt hasn't changed me as much as loving Andy has"- says a great deal. I could tell you were big-hearted before learning all these things about you : )
Prayers and love, and thanks for welcoming me here at Rahab's, lovely place.
Jon, look forward to reading/learning more about your story and your family's... : )
Free Spirit, thanks. You wouldn't believe how many people at our IC asked if we were still going through with it. I remember once, sobbing as someone asked. I was so shocked, it was the first time the possibility had even occurred to me, and I said, "If he was in my womb, would you ask me if I was going to abort?"
"No. That's different."
"No, it isn't, he is my child. I've been his mamma for a month and a half now, I can't just write him off, I love him. It would be obscene to turn him away."
Anyway, I forgot to share the wonderful thing that happened the day we got the diagnosis! Stephanie called, sobbing, and we told her it was okay, that we would get through it and that we loved them even more now that we knew what was going on (brought out the mamma bear in me, don't mess with my cub, Satan!).
So we got off the phone and then my brain clicked into gear while on amazon ordering books and I called her back.
"So hey, I thought of something important, could you see whether they were boys or girls or what?"
Immediately it became obvious to her that we really meant to go ahead with it and her tone of voice lifted. "Oh, the baby with spina bifida is a boy. The other one we don't know, he was being shy."
And we shared happiness over the gift of a son and went to bed happier. I got off the phone and in my heart, I named him Andy. That was it, he had a name and he was a person.
And the shy one now parades through the house naked whenever he can get away with it /rolleyes.
Sue, lol I am installing a new backsplash in my kitchen. I will post a pic when I am done.
it did sound a bit naughty, must admit ;)
Mike, that is a button that does not die. I beg God to take it away from me. At least now i do not get into people's face about it. This was my response once when the mother of four, with one on the way, patronised me:
"Excuse me, but I lost four babies before going through a contested adoption because their "real father" /rapist wanted to force our wonderful birthmother to raise them alone on welfare so he could have sexual access to her on the weekends. We lost all of our investments, we have no retirement money now from keeping these kids out of his hands and giving Stephanie a chance at a life. I have sat in NICU almost nonstop for a week while the majority of the biological parents could barely be bothered to visit their kids for a half hour. I have done physical therapy, driven three hours in snowstorms to get my child to the nearest spina bifida clinic, I clean up barf in the middle of the night and have dealt with diapers you cannot imagine. All for you to tell me that spreading your legs makes you a real mother? Sister, if I'm not a real mother, then you certainly don't qualify."
Note: I don't do this anymore, i simply sigh and say, "I am their real mother. If their birthmother were here, she would be the first to tell you that. She did not sacrifice her heart in order for them not to have a real mother."
Thanks Manuela, you are such a welcome addition here, it is a blessing to be getting to know you.
It's Jon's fault though, that I cried all afternoon yesterday. I'll have to share what happened later, it was one of those discouraging days. Nothing like being in the middle of the city and having a diaper explosion on a seven year old only to find out you left the bag at home, have no wipes and only Little Mermaid swim diapers....
Oh Jon, I was thinking about what you said about Special Needs parents being cool. Probably what I like best is that when a special needs parent sees a child, we look them directly in the eye and talk to them. So often people will feel awkward and treat them like they aren't there. i can tell everyone that as a parent, we appreciate when people do not avoid our children! I think they are afraid of saying something dumb, but really that rarely happens. Special needs kids are pretty cool about dealing with the occasional silly comment.
LOL You know that wet grout downstairs comment - I didn't even laugh at it because of that double entendre that I didn't even see until just then, but it just sounded funny inserted in that part of your dialogue :)
But heh :) NOw it's even funnier :)
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