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Do you have a 'very Special Child'?
Then you might be interested in my TAILS!!
I created TAILS on Suzy's SHIRTS.
It works for us ~ maybe it will work for you, too.
Remember when your kids were babies?
And they all wore ONESIES?
I loved onesies for all 3 of my babies -
the shirts stayed tucked into the pants,
their tummies stayed covered, and warm, and protected,
the onesie kept the shirt from "bunching all up in the back" when the baby was in a stroller or carseat,
there wasnt' a bunch of material gathered around their boobies when they were rolling on the floor,
they just looked neater.
Suzy is pretty much still like a baby - AT AGE 5 - and STiLL NEEDS ONESIES.
So, I created a way to make EVERY SHIRT SHE WEARS A ONESIE by sewing on a TAIL!!
I have done this for 2 years, to every shirt she has, and it's very easy!!!
For every shirt, you need one baby onesie. Cut the bottom 1/3 off the onesie, cut off the sides, and sew it onto the bottom of the shirt.
Click here for DETAILS and PICTURES.
http://www.babyjellybeans.com/web/do/site/photo?ID=723096
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Suzy and I just returned from a week in New Jersey doing Medek Physical Therapy with Azriel Novogroder. Suzy did a good job and worked hard. She got a little stronger, maintained a little more balance, and she had lots of fun.
She adores this man and this therapy. She giggles thru each session. While working on sitting or standing she will laugh so hard that she falls over - it's music to this Mama's ears!
While in NJ we have to find a way to spend the hours in between our morning and afternoon sessions. So - we go shopping! There just happens to be a Mega Mall right outside our door! Luckily for me (but not so great for Daddy) Suzy likes to shop. My secret - I hook her DVD player onto her wheelchair tray and keep popping M&M's into her mouth.
While shopping this week I made an observation - Nobody really 'stares' at Suzy. I would expect them to. I was warned that I would get tired of all the stares that a 'handicapped kid' gets. I am surprised that they don't; after all, she is a big girl being pushed in a wheelchair -and she happens to be really gorgeous 
We get lots of sweet smiles, and lots of 'awwws'. But they don't stare. If they did, I wouldn't mind. I have mentioned before that I welcome people asking about my precious girl.
I HAVE learned that people are inherently good and kind. People who see a child in a wheelchair are probably thinking:
"I wonder what's wrong with him/her ?"
"How sad."
"I wonder if he/she is happy?"
"Can he/she walk, see, eat, etc.?"
"That's a cool chair."
Those used to be MY thoughts when I saw a kid in a chair.
Now, when I see a kid in a chair I think:
"I wonder what's wrong with him/her?"
"How sad."
"I wonder if he/she is happy?"
"Can he/she walk, see, eat, etc.?"
"That's a cool chair."
We're all the same - -we are compassionate and concerned; but most adults try to avoid staring.
However....this observation pertains ONLY to adults.
Kids are an ENTIRELY DIFFERENT STORY!!!
When we are out and about children LOVE to check out Suzy - and I love it !!! They will turn their necks 360 degrees in order to look a little longer. They are CURIOUS. And that's how they learn! (My years of being a 1st grade teacher are showing thru.) I have heard MANY kids ask their mom, "What's wrong with her?" Most moms just walk quickly away. I know they are afraid of offending me, or feel embarrassed by their child's curiosity. But I would like to introduce the child to Suzy.
I want children to get to know her.
And children are SO INNOCENT.
This brings me to my story of Jamaal. -
On Wednesday we were in the Gap.
I was looking at a pile of t-shirts and Suzy was watching her cartoons.
A small boy with a fluffy afro and a beautiful smile wondered over to us.
The boy said to Suzy, "Hi. You're watching Dora! I love Dora."
"Oh, that's great," I said.
"What's your name?" he asked Suzy.
"This is Suzy. What's your name?" I asked the boy.
"I'm Jamaal, and I'm 4 years old." he said proudly.
"Hi Jamaal," I said.
"How old are you?" he asked Suzy.
"Well, she's 4 years old, but she can't talk," I told Jamaal.
Jamaal said, "When I was a baby I couldn't talk - but now I can. She will talk when she grows up."
I said, "You're right. Maybe she will."
"Why is she in a stroller?" asked Jamaal.
I said, "She can't walk."
Jamaal said, "Maybe she could learn to walk."
I said, "She's trying very hard."
"She's really lucky. She gets to ride around in that neat chair and watch Dora."
I said, "Yes, she IS really lucky."
(This whole conversation has Suzy crackin' up! She's lovin' the attention from Jamaal.)
Sweet Jamaal says, "WOW! She REALLY likes me!!!"
Yes, she does Jamaal, and so do I. And his mom? She stood quietly by, listening to our exchange, waiting to see if she needed to intercede. Jamaal did JUST FINE ALL BY HIMSELF. His mom should be very proud. He sure made our day.
I'll post a video later this week.
Medek Therapy + Azriel Novogroder = Highly Recommend
"Pimp My Ride" & a "Stander-Upper" to boot !!!!
We spent the afternoon at the wheelchair clinic - and we left with 2 very new, and very cool pieces of equipment for the princess. (let me take a moment here to thank our insurance company!!!)
First off - we got Suzy her very first REAL (by definition) WHEELCHAIR (a Zippie Iris, for those of you interested) ; and let me just warn you now that it's PINK - - VERY VERY VERY pink.
And, yes, I did it. I had her sweet name engraved into the seat (in pink, of course).
I must admit - I used to think it was kind of pathetic when I saw a child's wheelchair with their name sewn on it. It looked so pitiful --- like the parents were trying to make something cute out of crap.
But-now I realize that it really IS making something CUTE OUT OF CRAP!! And that's O.K. - because the alternative stinks even more. It's the greatest lesson in life - making lemonaid out of sour lemons.
The wheelchair fits Suzy well, and she sits up real fine in it!
The problem? - getting it into my car. I have a full size yukon. There's plenty of cargo room for it, but it's a very high lift for a very heavy chair. Not sure what to do.
I really need an adapted Smokin' Hot black VAN, where I can just push a button and a cool ramp comes sliding out the back, and I can just push my sweet baby in her Pimped Up Pink wheelchair right on in!!!!!!! oh, sorry, I just drifted into a dream.
Second - we got a new and REALLY cool stander (the Bantam Easy Sit to Stand). Suzy is placed into a chair-like contraption, and buckled in with 200 buckles and straps, and then - a peddle is pressed in the back and she is raised up to STANDING!!! It truly is a pretty neat machine. And I would highly recommend it. If you're looking for a new stander I would check it out. (if you live in Va. Beach you can come over and try mine out if you want.)
It's a HUGE MONSTROUS VERY HEAVY thing..... but I don't have to lift it - just roll it from the dining room into the kitchen.
Suzy can SIT in it - and eat/play/decompress/ OR she can easily STAND UP in it. And since she would rather stand up than sleep - it works very well for her. It comes with a big-ass black heavy tray; but it works very well.
Yep - I've got dozens of pictures. You can check her out in both pieces of equipment under: PHOTOS-Pimped Ride & Stander Upper.
I'm happy to answer any questions you might have.
So, it's Mother's Day - and I love every minute of it!
(even though my littlest munchkin, Suzy, was up for MANY hours the past 2 nights, miserable, and diagnosed with Strep throat yesterday. It's been really hard to make her smile....even Elmo hasn't been able to get through to her...)(and by the way, how come our family has never had a case of strep throat; but when we do, it has to be the kid with enough problems? why Suzy?)
(sidenote: at dinner tonight my brother had her crackin' up - thanks bro')!
Anyway, I love love being a mom.,
It's all I ever wanted to do!
I spent many years dreaming about becoming a mother.
Honestly, though, my dreams never included raising a severely handicapped child. Being a mom didn't mean pushing a wheelchair, or spending afternoons at therapy, or trying to figure out what my non-verbal 4 year old was trying to tell me....... or so I thought.
However, I have come to figure out that being a mom means ALL of that stuff.
I won't lie, and get all "holier than thou", and pretend that it's just glorious having a child with a brain injury.
Because, actually, I WOULD change her in a heartbeat if I could. I WOULD take away all of her disabilities and turn her back into the 'normal, healthy child' I gave birth to. It would be easier for HER and it would be easier for ME!
But I now know that being a mom doesn't mean 'easy', 'simply' 'normal' and 'trouble-free'. (because, face it, ALL children come with their own share of problems) -
Being a mom means loving IN SPITE of imperfections and seeing THROUGH the challenges and helping ALL OF our children reach their full potential.
My 3 daughters, Gracie, Maggie and Suzy are perfectly PERFECT!!
And they define me as a person. And I won't apologize for that. They are my soul food. They make me who I am - and that is certainly a better person than who I was before they came into my life. thanks, girls.
Whit
"God doesn't give children with disabilities to strong people;
He gives them to ordinary, everyday people,
then He helps the parents to grow stronger through the journey.
Raising a child with special needs doesn't TAKE a special family;
it MAKES a special family."
I read this quote on someone else's website - and I stole it ('cause I love it); and it makes me think of my family, and it makes me so very very very appreciative of my awesome girls - Gracie and Maggie - who didn't ask to be on this journey - but they have EMBRACED their sister and love her unconditionally.
They don't see all of her disabilities;
they never even mention all that she CAN'T do.
They truly think she is just an amazingly cute little sister.
How cool is that?
Pics included under - PHOTOS- Awesome Sisters
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