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View Full Version : I have SB - It does not have me!


Sugar62108
10-06-2007, 07:11 AM
Hi everyone! My name is Emily. I'm a 25 year old with SB L5 myelomeningocele. I've also had Hydrocephalus since I was about a week old. I walk independently, though by the end of the day, I'm leaning on someone's arm! I catheterize, wear "protective underwear" - I hate to call them diapers, I am not a baby!

I'm working as a Respite Care Provider through a wonderful company called Bay Respite Care located in Vallejo, CA. I travel all over my county, taking care of developmentally challenged children in their own homes.

I am getting married In several months, on June 21 to the most wonderful man on the face of the planet - hands down! His name is Terence, we have been together for a little over 2 years, and I could not be any happier! He also has Hydrocephalus, and he's got 2 shunts, whereas I only have one. But even though he was a preemie and not expected to survive, he is now 28 and very much independent. He's been at the same job for 7.5 years, helps his mom, who's single, with bills and whatever, and is the most kind, generous, supportive, funloving, loveable and loving person I know. And he loves me just as I am! I am so stinking spoiled and happy!

We met at work in January 2005. We worked at Walmart - he was a sales associate, Iwas on the remodel crew. Yes! I helped dismantled and rebuild display, move merchandise, the whole 9 yards. Not work I could've seen myself doing or that I ever want to do again, but I did meet Terence there, so it wasn't all bad! He is a real blessing in my life, the kind of person only God could've paired me with. We are the proverbial "perfect match!"

I hate to use the word "disabled," because it means "not able." We are able, it's just that we have to adapt and do some things differently! ;) It's all about figuring out how you can - because YOU CAN!
Love and Blessings to you all!
Emily

Barb
10-06-2007, 09:56 PM
Hi Emily!

I absolutely love your story!!! I can see you smiling as you are typing. You will definetly be a ray of sunshine here!

Holly
10-07-2007, 10:37 AM
Welcome! I must agree with Barb there!

printemps
10-07-2007, 11:58 PM
Congrats on the upcoming nuptuals -- I've been with the same woman for 9 yrs- Funny you should mention walmart - we met at Sams club we were doing the demos lol . Luckily we are not doing that anymore. She's a Piano teacher at a HS and I work in the financial field. I totally agree with you we are not disabled - just do some things a bit differently.

XoBLoNDiE85
03-09-2008, 08:46 PM
You have made me feel a lot better my unborn baby has myelo as well. I have 2 other daughters ages 4 and 18months. I am VERY scared of the outcome....since i didn't know anything about this until this past monday it is VERY new to me so kinda scares me. i hope and pray for an outcome like yours. I pray for my baby Hannah everyday...and i try to stay upbeat about it all. I would love to talk to you some more.

angel
03-09-2008, 10:47 PM
Outcomes like hers are very very attainable. Spina Bifida is a small detail in a large picture.

canadian mom
05-01-2009, 03:57 AM
Hi Emily,

Your title caught my eye right away! "I have SB, but SB does not have me!" I LOVE that saying and I pray that my 5 and a half year old daughter will be able to say the same thing!

I should properly introduce myself. Sorry! My name is Marsha and I have 2 daughters. Jenna has SB and hydrocephalus, and uses a wheelchair. My other daughter is 2 and she is a typical 2 year old.

I would love to talk to you about how to help my daughter become more independent and not rely on her dad and I so much, and many other things as well!

Thank you for encouraging my by what you wrote!

Marsha

Gymp
05-01-2009, 01:04 PM
Hi Emily,
Welcome to the board.I'm Gymp,a 52 yr old with SB, been happily married for 12 years.You're sunny disposition put a big smile on my face and I wholeheartedly agree with your statement "I have SB - it does not have me"

Again Welcome!
Gymp