Thursday, October 11, 2012

"Acceptance"

Recently a website posted this question. "would you abort your baby if you knew it had Down syndrome?" Some of the ignorant replies were just plain maddening! "Yes, I could't handle having a disabled child", "their life wouldn't even be worth anything." It was bad. For me, its not the question of pro choice or pro life. Its these people not wanting to be bothered by a child with special needs, not realizing your child can become special needs at any time!
So here's my question to these people...what would you do if your healthy baby was born with the cord wrapped around its neck twice? She/he came out blue, and had to be resuscitated, and you didn't know until the baby was older that she/he has cerebral palsy? Would you put a gun to that baby's head and pull the trigger, because they were no longer "normal"?
What if your 7 year old was hit by a car on their bike? They ended up paralyzed from the neck down? They need a ventilator to breathe for them because their chest muscles no longer work. Would you then put a gun to that childs head?

When Jaxson was born and we found out he had Down syndrome, we embraced it. There were no tears, no mourning the loss of a healthy baby. I know that is not the norm, and I'm not really sure why neither of us had those feelings.
But I know what its like to have a child, and then suddenly have them nearly taken away, left severely disabled. It sounds strange, since he had a disability, and multiple medical problems at birth. Jax suffered his brain injury at 6 months old. He had already been in the hospital for two months, and was in for another two months after the brain injury before going home. It took us a while to see how debilitating the injury was. After all, he had been intubated and sedated for 4 months, so he was going to be quite behind where he should have been.
There are some children with Down syndrome that can't walk at 6, but I don't know of any that are like a 2 month old baby.


Sometimes it can by hard!
Yesterday his bath was an utter disaster. He made his GJ tube bleed, because his hands go right for it when its uncovered, and I don't have 12 hands to hold and wash. Because of his blood thinners it bled like crazy! I didn't really want to bath him in bloody water, so I let the water out, and tried using a cup, dumping fresh water on him. My back was screaming at me as I tried to hold his head up out of the water and wash his hair. To top it off, I nearly dropped my total dead weight 6 year old's slippery little body getting him out!
People were so kind, they were asking if I had a bath chair, or nursing for Jax. My mom said she wished she was closer so she could help. The thing is, no amount of help is going to make his bath easier. I could have ten people standing in that bathroom, it doesn't change the fact that having a child with severe delays just plain sucks sometimes! The bath chair is a great idea, but it sits down in the bathtub, so I still have to lift him up and out, and I still have to break my back bending over the tub.
Ideally, I would have the money to build a house all Jaxson friendly. I would put oxygen and suction into the walls, and he would have a custom bathroom, with a bathtub up off the ground at my standing level. But we all know that it will never happen, so we just do the best we can with what we have.


On the flipside, when Jax accomplishes something new, the victory is much, much sweeter! You know if you have a child with a disiblity it makes all their accomplishments more exciting? Well, times that by ten! That's what its like with a child that's severely disabled!
A couple years ago, right around the time we brought Arina home, Jax started grabbing his oxygen tubing. This was huge, as he had never held, or reached for anything with his hands. Now he will grab any tubing within his reach. He reaches down by his side, because he knows that's where the tubes sit. It very repetitive  he grabs the tube, pulls it up and lets go. Over and over again.
Last night Ray found a toy that I had been looking for ever since we moved. Jax best buddy Gavin sent it to him. I had been wanting to try this toy with him again, because its long and easy to grab. Its super soft plastic, so if he drops it on his head it won't hurt. I haven't been able to find it anywhere, so I was excited when Ray found it.
I gave this toy to Jax, and watched. He grabbed it when I put it down by his side where he normally grabs tubes. But when it ended up over his head, he reached for it!!!!!!!!
He knew that toy was above his head, he looked for it, and he reached for it!!!!!!


Sorry, its hard to see the pictures because the blanket is so colorful, but you can clearly see him reaching and grabbing.
You don't even know how huge this is! It shows that he likes this toy, that he prefers it, and wants to play with it!


Even turning his head to find it!


Jax is like a 2 month old baby. He is almost 7 years old. He can't sit up, he can't even really hold his head up. Carrying him is like carrying a big, floppy doll. Jax doesn't play with toys, he can't talk or sign.
Showing us that he likes this toy by grabbing it over and over is huge!
I'm so proud of my warrior boy, and I just wish that people would understand that yea it sucks sometimes! It can be so hard, but its oh so rewarding!
More rewarding than any job, car, or other material thing that seems to be so important to people. If only they could experience true joy, maybe, just maybe they would understand!
Understand that you don't focus on the hard, you focus on the happy. I would much rather sit all day and kiss his tiny piggy toes, than go to any corporate, high power job!
If these people could have been in my house last night, while we were all jumping and dancing, watching Jax play with this toy, I guarantee there wouldn't be a dry eye in the house!!
We'll teach them, we will. One person at a time!



19 comments:

Warrior Mom said...

Lacey - While I knew that Jax had sustained a brain injury, I had not realized the degree of his delays (ie/ 2 months). I am so excited that he found a toy that he clearly enjoys!! That is HUGE!! I wish there was an easy way to get your house modified for Sweet Jax and make life just a tiny bit easier. He is a Warrior indeed!!

Wilde Family said...

I loved this post. Jaxon looks so involved with that toy and I can feel your happiness in this post. He is a blessed boy to have parents that love him so.

I hope you can find some solutions with the bath. I remember when my little son had oxygen and and NG tube, even though he was only five months old, I really didn't want to go through all the trouble of bathing him because he'd pull out the NG tube every. single. time. But he needed a bath and I needed to do that sweet baby routine with him after all the medical craziness, so we did it anyways.

Reagan Leigh said...

I can TOTALLY relate!! Reagan is very similar to Jaxson

Reagan Leigh said...

OK...I pressed publish too soon! Reagan is very similar to Jaxson developmentally. Her head control is a little better, but that's about it! I'm right there with you as far as the comments from people about raising a disabled child, it's difficult but you do what you have to do for your child, no matter their intellectual or physical abilities! Definitely know all too well about the screaming back and slippery 40lb child (and we have a bath chair)!!! I do know there are bath chairs that fit on platforms, so you can either use them in wheelchair accessible showers or in the tub with the shower. Never tried it, but we have to start thinking along those lines soon, because it's really not working for any of us!!! Hang in there!!! And so happy for the little things that keep us going!!

Anonymous said...

Yay Jaxson!!!!

Alice Fraggle said...

I've been sort of lurking around your blog for a little while and I have a personal question to ask. I won't be offended if you don't want to or can't answer - I'm just nosy! :)
I'm reading your post about Jaxson's story and I was wondering if you sued the hospital for letting his glucose drop to 0 (which I believe is what caused his brain injury). I found that especially horrible - were they not paying attention?!
As I said, I understand if it's not something you want to talk about. (Or if you think I'm being nosy - I am, but I don't mean to offend!)Either way I think Jaxoson (and Arina!) are AMAZING little kids, and they are both BEAUTIFUL!

Anonymous said...

Wonderful news! So proud of you Jax! Looking forward to more amazing accomplishments from you!

Tam said...

Woohoo! Way to go Jax!!!

Junior said...

way to go Jax, thats awesome

Becca said...

You are super-brave to have read the comments on that article. I avoid them like the plague.

You are seriously SUPER Mom. I know you're saying that any one of us would do the same for our child, and that's *totally* true. But seeing you actually do it, seeing all that LOVE, is just so inspirational. Pure HAPPINESS seeing those photos of Jax playing with that toy!! That is so amazing. Love him, love you. <3

Alison said...

Well done Jaxson!

So true that people don't realise anything could happen at any time leaving them or their child with a disability.

The VW's said...

Glad you were able to find the toy again! It makes me happy knowing that his favorite toy is from Gavin! I REALLY wish we lived by you! Gavin and Jax are so similiar, and their stories so much the same....they need to be in the same room someday! I love the pics of Jax, and I am teary eyed with pride for your sweet boy! Way to go Jax! You are such an inspiration! Hugs from me and Gavin!

Unknown said...

Go Jaxson!

Kristin said...

Go Jaxson! Sorry - wasn't signed in - that last anon post was me ;)

Heather said...

I love you little guy. He holds such a special place in my heart. He always will. I think he embodies perfection.

You know I understand where you are coming from. I know that Zoey can do more then Jax but I also know what it means to have a child come with far more then the extra chromosome. I know what it feels like to be part of a community that you love but don't feel exactly a part of because while others your childs age are talking about colors and letters and reading and writing and having friends, i have nothing real to offer. Not many DS moms come by my blog.I think because I am different. We are outsiders. Maybe just the chip on my shoulder, but the way I feel often.

I love you Lacey. And your boy and we do what we do because we love our children unconditionally. Zoey will most likely never walk or eat by herself and she will never dress herself or bath her self and she sure as heck won;t be writing her name, but you know what, I would not change a thing. I love her just as she is. I hate that she has to struggle. I hate that Jax and some of our other little DS buddies got hit with more then their fair share. But I do know that things could be worse. We could not have them at all. Now that would be true grief.

Well, that is my novel my friend. Kiss the warrior buddy from me please. Whisper in his ear how perfect I think he is and how proud of him I am I.

Love to you all.

Chromosomally Enhanced said...

I have asked those same questions...its not a pro life question it is a human question...jax is perfect and you are amazing! Think about you all often! Huge smiles n hugs

Tia said...

We had one of these www.bealift.co.uk for a long time - the long red handle lifts the seat up level with the bath edge or lowers it into the bathtub. I wonder if it's available where you are? Made a big difference to my screaming back.

Now I have a shower stretcher which folds down over the bathtub at my waist height, and flips back up out of the way for the rest of us.

I know that wasn't the point of this post, but just thought I'd mention them. Sometimes it's just plain hard isn't it?

Mumto2boys said...

One person at a time for sure. Happy down Syndrome Awarness month 2012 from Australia xx

Astrin Ymris said...

I was researching accessible design and I remembered your bathing woes, and started Googling. I wonder if a roll-in shower and bathchair would work if you also installed a heatlamp to keep Jax from getting chilled while bathing? My mom is using a heated fan, but the movement of air on wet skin seems to reduce the value of the fact the air is heated, even in a small enclosed stall.

Also, would it be possible to cover him with a towel, moving it to uncover the part of him you're bathing at the moment, so that he's always partially covered?

If there's any sense in the insurance industry, you should be able to get such a remodel partially covered, if only to keep them from paying for expensive rehab for YOU if your back goes out from the strain! ;-D