Nice "view" of having a special needs baby ;o)

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Nice "view" of having a special needs baby ;o)

Postby SaLT » Thu May 29, 2008 12:58 pm

You have all these *plans* for a perfect baby, but what is it like when it doesn't turn out as planned? This is a nice poem/story that puts into perspective what parents go through when they're faced with a less than "perfect" baby. I found it on a website that the University of Maine's ACC research program referred me to for Disorders of the Corpus Callosum--my baby has complete Agenesis of the Corpus Callosum--a completely missing part of the brain that are the communication fibers/nerves between the left & right brain. ;o)

PS--I'm originally from Maine about a 1/2 hour away from where this University is that does research on THE PARTICULAR thing wrong with my baby! Bizarre!!!

Source: http://www.nodcc.org/first_steps_for_newly_diagnosed.php#1

WELCOME TO HOLLAND
By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared the unique experience to understand it, to imagine how it would feel. It’s like this:

When you are going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. Michelangelo’s “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 flight attendant comes and says, “Welcome to Holland.” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plans. 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 guidebooks. 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 awhile and you catch your breath, you look around and you begin to notice that Holland has windmills, 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 go away, because the loss of that dream is a 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.


Something else I found in the "Special Needs Babies" forum on TWW is an article about Ambiguous Loss. You don't actually lose the baby, so nobody really allows you to grieve (afterall, you *have* a baby, you *should* be happy), but you either have a pre-term birth or a baby born with disabilities & you "lose" all those things that parents with a baby that's born on-time & healthy get to experience. Sad, but a neat article! http://www.prematurity.org/baby/ambiguous.html ;o)
Me, 29 & DH, 31
DD, 5 & 3
DD, :angel: June 5 '08
DS, June 5th '09
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Postby dixiechicken » Fri May 30, 2008 4:43 pm

Something else I found in the "Special Needs Babies" forum on TWW is an article about Ambiguous Loss. You don't actually lose the baby, so nobody really allows you to grieve (afterall, you *have* a baby, you *should* be happy), but you either have a pre-term birth or a baby born with disabilities & you "lose" all those things that parents with a baby that's born on-time & healthy get to experience. Sad, but a neat article! http://www.prematurity.org/baby/ambiguous.html ;o)



I have to say, this is one of the hardest things I've had to deal with. Wade doesn't "look" like he has special needs, so everyone assumes everything is fine. It's been a year and 8 days, and it's still hard, but it has gotten easier. I've definitely been in a cloud this past year, however, within the past couple of weeks, it has been lifting. (Wade's damage was caused at birth, so we had no time to "prepare" or "get used to" the situation.) Thank you for bringing this up. It is definitely a struggle.

I teach special ed, so I was very familiar with "Welcome to Holland". However, I never thought it would apply to me. Funny how things happen. :? As difficult as all of this has been, I wouldn't change a thing. My life tuned upside down in just a couple of minutes, but I am forever changed--in a good way--because of it. Wade and his disability has made me a stronger, better person. And I know God has special plans for him!!!
Jennifer(35) Curtis(34) Wade--5/22/07
"officially" diagnosed with CP 4/22/08
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Postby PixieB » Fri May 30, 2008 11:18 pm

I posted the ambiguous loss article because I really liked how it articulated the mess of emotions you struggle with when you suddenly don't have a "normal" baby. Articulating that others just can't comprehend it, that you're so relieved to have a living baby and cherishing all the special things about them, but you're also grieving that loss of what you'd hoped for.

I just hope it's been helpful for others too. Hmm, going to have to make a nice collection of stickies for this forum on the various troubles parents have faced, places with good data, good advice for coping with NICU etc. Actually I wrote out some stuff myself for being helpful with NICU.


And I think Holland is spiffier than Italy in many ways, though that may be because I've actually been there and have Dutch relatives who are fabulous :wink:
Talia Grace: born Friday 13th of July, 2007, at 27w4d gestation, 700g/1.5lbs. Nursed for 4 years
and Violet Joy: born Thursday 19th, VBAC waterbirth, 39w2d, 3.35kg/7lbs 6oz, still a booby monster, just shared it with her big sister for 18 months.
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Postby Katers » Tue Jun 03, 2008 2:19 pm

I've only posted in these forums a few times, even though I "lurked" here the entire time I was pregnant.

My son was born in November 2007. I posted a few times in "high risk pregnancy" and I'm sure I scared everyone off the boards!

I LOVE this story. I am 31 (was 30 when I had my son). I'm perfectly healthy. So is my husband. I did everything "right" when I was pregnant... probably TOO right... not a sip of alcohol, not a drop of caffeine, no lunch meat, no hot dogs, NOTHING...

I had the 20 week ultrasound when I was supposed to. I was religious about my prenatal vitamins (even started taking them 3 months before I started trying to get pregnant). I went to all of my prenatal appointments, had every test I was supposed to have.

Everything looked fine with the baby. The ultrasound came back normal; it showed no problems. It wasn't until I was about 35 weeks along - I was diagnosed with polyhydramnios (high fluid levels). I went online and scared myself half to death about the possibilities.. things that could be wrong. I thought I would NEVER be able to survive if my baby was born with "defects" or problems.

My son was born ... with problems. He has MULTIPLE health problems, and like one of the prevous posters, you would NEVER know from looking at him that he isn't/wasn't PERFECTLY FINE. I will lose you with the medical jargon - but I will briefly say that his esophagus was in two parts, his esophagus was connected to his trachea where it shouldn't have been (both conditions required surgery), he has one kidney, severe reflux (required surgery), he had a branch of his aorta compressing his trachea to the point that he couldn't breathe (required surgery), and he has a hole in his heart.

He had three surgeries. He's been under anesthesia seven times since he was born. He's had 3 blood transfusions. He's had so many IVs that he has no more veins left when they need to take blood from him. He has a feeding tube (but he eats everything by mouth now). he is at a much higher risk for choking than other children are. He has a hard time moving mucus so we have to try not to let him get a cold.

But guess what? WE LIVE IN HOLLAND AND IT IS THE MOST WONDERFUL PLACE IN THE WORLD!

I try to say this in some posts and I think it only comes across as scaring people. But whenever I post I am trying to basically say (just like the Holland story says) that YOU DEAL WITH WHATEVER COMES YOUR WAY. And you NEVER EVER would trade your life or your child for ANYTHING. It doesn't matter.

My son is almost 7 months old now. With clothes on, you can't see his scars and his feeding tube, and you would NEVER HAVE ANY IDEA about all that he went through.

He is the MOST amazing child... the strongest child... the MOST CHARMING little boy. He smiles and laughs ALL DAY LONG! I am not exaggerating, he cries for 5 minutes a day, if that. Every time he sees me or my husband his eyes transform into hearts. He has the most huge most beautiful blue eyes, and the most perfect little face I have ever seen. He is such a pleasure, and believe it or not, I'd consider him an "easy" baby. He's my first child and he has captured my heart to the point that I feel like another baby could never even compare to his level of perfection.

I love him just like all parents love their children. From what he's been through I think he has a special place in the hearts of those who know him.. but he's also a regular kid... and it is wonderful.

Holland is wonderful. When you're pregnant and you are afraid of going there, it seems like it would be the biggest nightmare, but once your life goes in that direction, you will eventually learn that things are just as they should be.

I always get pangs when my friends have "normal" babies...but I wouldn't trade my situation for anyone's. It has its own specialness.

I just can't stress enough.. I know this won't help anyone probably, because NOTHING helps when you are pregnant and freaking out, but I can honestly say that once that baby is born, if it has problems, YOU WILL BE FINE. Mommy-ness kicks in full force and that's all there is to it. It is TRULY a gift to be blessed with a special child.

I just hold my son tight every single day and appreciate every single solitary moment with him. I am not exaggerating when I say that I never even lose patience with him, how could I when we came so close to losing him, and now that I see what a perfect prince he is? He is my prize, he is my gem... and I wouldn't have it any other way.
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Special needs babies.

Postby Meg-Andher2chickies » Tue Jun 03, 2008 5:01 pm

I have read that poem before, but never before as a parent with a kiddo that has her challenges.
I am a special needs teacher. 10 years teaching children with moderate MR and now along side general ed. teachers in Kind. and first grades. It poem made me cry as a teacher, but has a WHOLE new meaning now.

I now have a baby with sensory dysfunction, food allergies out the wazoo, and reflux. Looking at the possiblility of Eosinophilic esophagitis. She is a daily challenge, but one I wouldn't change for the world. It makes her strong and it makes me graceful...graceful...a word I strive to be. :)
Keely Elizabeth 4.5yrs and Audrey Marie 13months
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Postby dixiechicken » Tue Jun 03, 2008 6:33 pm

Very beautiful stories Katers and Meg!

Meg--I just read your feeding issues in the feeding forum. 8O What a struggle you have. It's funny though. As I was reading everything you wrote, I just couldn't imagine dealing with that. I actually had the thoughts running through my head that I could NEVER be as strong as you!!! I have to laugh out loud, because I'm sure some people say the same thing about my life. All the doctor's appointments and tests and therapy. A one year old who can't sit up, can't crawl or walk, can't really play with toys, can't eat solids--only pureed foods. But I guess if we thought about what we really have to do for our kiddos, it would overwhelm us. But, this is my life. I too :hb: Holland!! Others would be so blessed to be able to live in such a place!

Holland is wonderful. When you're pregnant and you are afraid of going there, it seems like it would be the biggest nightmare, but once your life goes in that direction, you will eventually learn that things are just as they should be.


AMEN!! :wink:
Jennifer(35) Curtis(34) Wade--5/22/07
"officially" diagnosed with CP 4/22/08
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Postby Meg-Andher2chickies » Wed Jun 04, 2008 3:05 am

Jennifer...IT IS amazing what you can do when challenged huh? God gives us the strength to rise to the occasion. I NEVER thought I would ever be the woman getting second and third dr. opinions and traveling far to get them. My first child is the poster child for Italy. I WASN"T prepared for Holland, BUT I've learned the language aweful fast :)!!! I have a strong belief that surrounding yourself with others from Holland makes a world of difference. The learning curve is cut in half! :)

I have to say one more thing that came to mind last night, cause I really couldn't get this poem out...it was stuck! :) When I taught in a low incidence classroom I taught children with CP, Spina bifida, Downs, brain injury, seizures, autism, you name it. Do you know what made or broke each one of those kids development. Their parents. Those that were loved at the spot they were, moved forward from that spot. Those who had not come to grips with a dx or "needed" desparately for their teacher to cure them had a very hard time and so did their child. A huge part of my job was working with parents at the level they were. It could be very hard.

Jennifer...are you getting all you need from therapy? Does he get EI or therapy privately. Have you seen the abilitations catalog? I have gotten some good sensory stuff from there.
Keely Elizabeth 4.5yrs and Audrey Marie 13months
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Postby dixiechicken » Thu Jun 05, 2008 6:15 pm

When I taught in a low incidence classroom I taught children with CP, Spina bifida, Downs, brain injury, seizures, autism, you name it. Do you know what made or broke each one of those kids development. Their parents. Those that were loved at the spot they were, moved forward from that spot. Those who had not come to grips with a dx or "needed" desparately for their teacher to cure them had a very hard time and so did their child. A huge part of my job was working with parents at the level they were. It could be very hard.


I TOTALLY agree with you. I teach the above mentioned kiddos, and I see the same thing. It is very hard to come to terms with your child's disability, but I think you do them, as well as yourself, a huge disservice.

Jennifer...are you getting all you need from therapy? Does he get EI or therapy privately. Have you seen the abilitations catalog? I have gotten some good sensory stuff from there.


Short answer....NO! :evil: I'm VERY frustrated with EI. Wade has received PT since about a month and a half, and started OT last month. I am very disappointed with PT. Up until a couple months ago, she was only coming 1x a month! :? It was like twisting her arm to get her to start coming 3x a month. However, haven't seen her since the beginning of April because she was out for surgery. Then, the week before last we called to confirm and she said we had called and cancelled! She'll be her next week though. OT is amazing and she comes 4x a month. We just switched pediatricians, and his new doctor is AMAZING!!! He's referring us to Cook Children's for therapy because he knows we want something more intensive. The problem is insurance. I don't want to max out my lifetime benefits so early, plus I'm not even sure they'll cover it. My diagnostician at school gave me some stuff last week to look into. Now that school is out, I'll have more time to figure some stuff out. The nurse practitioner at the last doctor wanted to refer him to Scottish Rite in Dallas, but the doctor said he didn't "qualify". Um, why don't you refer him and let them decide? So, when we go back to doctor next week, I'm going to see if the new pedi will refer him. That would be a HUGE financial help! The OT told us yesterday he needs some leg splints from the PT. When we called PT, she said she couldn't get those!!!!! :mad: I just don't understand!

Sorry my "short" answer turned long. Just needed to get that out! :wink: I had forgotten about the abilitations catalog, but OT mentioned it to us yesterday. She told us to see if we could find something we thought might work for bathing. I'm still bathing in kitchen sink. :oops: It is a deep sink, just getting kinda small! He can't sit up, so bathtub doesn't work. When I lay him down or kinda prop him, he screams bloody murder! Tried putting a swimming tube in bath for him to sit in, but I don't think he likes that free floating feeling. Anyway, thanks for asking!
Jennifer(35) Curtis(34) Wade--5/22/07
"officially" diagnosed with CP 4/22/08
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