Sunday, October 17, 2010

little did i know....

when i was a little girl, i remember watching tv with my mom and seeing a disabled child. i don't recall what the disability was, but i remember having a conversation with my mother... something along the lines of, "i think if i had a kid like that, i could only love him more." little did i know what was in store for me.

one day while pregnant with justin, i'd forgotten to take a prenatal vitamin. when i went to get it, i thought to myself, "i'm glad i remembered to take this, i wouldn't want my baby to have spina bifida or something." little did i know what was in store for me.

the day we were diagnosed with spina bifida, i cried. i questioned. i was scared. i think generally speaking, doctors don't give much hope, but we were lucky enough for most of ours to say, "we'll just have to wait and see." to some, that may have been more painful because it only broadens the spectrum of what spina bifida is, but i think for us, it made things a little easier to not dwell on the bad stuff.

recently, a bunch of us LUCKY spina bifida moms were introduced to a poll. this poll was... uncalled for? insulting? scary? SAD.

a woman recently learned her baby has spina bifida. she was given three options.. TERMINATE. participate in the moms study. or deliver full term. i'm not sure what irked me more... the fact that she made the issue public to everyone or specifically to us, the LUCKY spina bifida moms, or the fact that she had a pretty good percentage of people telling her to terminate that little life inside of her. that percentage probably knowing nothing about spina bifida.

it brought up a whirlwind of emotions to many of us LUCKY spina bifida moms. some were hurting, some were angry, some were dumbfounded.

in recent days, i feel it has made me look at my son a little more differently. with more love than i had days before. i've never felt so LUCKY to be a spina bifida mom.

i can only pray this woman makes the best decision for herself, her baby, her family. only God knows what will be best for them, but i just wish she could see what joy our babies have brought to our lives. sure, we have PT appointments every week, but those appointments have introduced us to some of the most amazing people. some of them, i consider to be close friends, and we've only known them for little over a year. justin loves every single therapist he has, and they love him just as much. sure, the stress levels are a little high when they puke on you - is it a bug? is it the shunt? but we have some of the best doctors to take care of him, and we know we can rely on them. and they don't scare justin, so it's never stressful to take him in (which is few and far between). yeah, i worried about madi feeling neglected and left out, but we include her in everything we do. how many four year old kids do you know that want to help cath? that know where to get a catheter - that even know what a catheter is!? because we've allowed her to be such a big helper, she's the best big sister i've ever seen!

in other news, more exciting, happy news - JUSTIN GOT HIS BRACES!!! we had gone to AI DuPont in the beginning of September for a consultation. it was a great day. we met with the ortho doctor, she brought in a PT, they evaluated him and came back into the room together. they said to me, without me pushing, fighting, complaining, - "we suggest for him to be fitted for AFO's." i could hear music, i was so excited! along with the AFO's, she had suggested knee immobilizers. so far, we've been having a great time with them. that day, we went to get fitted for the braces, and they were done in 2-3 weeks. they're blue with little rockets and martians on them. SO CUTE! they had also suggested for him to have a hearing screening done (PASS!), an opthamology consult (PASS!), a spine xray (TBD), a swallow study (12/9), and at some point, a baseline MRI. the night that we came home from AI, justin began to crawl on all fours! it was one of the greatest days ever. we had such a successful day at DuPont, then to come home and see him up on all fours, crawling across the living room - it brought me to tears! then i had to call everyone! there is nothing i enjoy more than bragging about our little man. our little fighter.
(DAY 1, with braces)

we've also increased his PT to 2 times a week at DuPont, keeping our EI PT here at home, too. so, we're busy! it's nice to have PT in a hospital setting because they have equipment we don't have access to, and would never have room for.. but, we still get to keep our PT here at home, so we have justin working with his environment. we've got speech therapy once a week now at home, too. and we still see OT every other week. not to mention, madi is in preschool 3 days a week. these kiddos keep us going!

speaking of preschool, madi has been doing very well with it! on her first day, she told the teacher that she already knew everything... UH OH! haha! she loves it though. she sings songs to us that she learns every day. she gets upset if they don't get to go to the playground though. that's really her only complaint so far. she seems to be making a lot of friends. she's always got someone to include in her stories (when we can get her to talk about it - she's kinda secretive!). i just can't believe my baby is in preschool.

October is Spina Bifida Awareness month.

To "celebrate," the LUCKY spina bifida moms (and dads!) at babycenter have decided to have a shirt made to support our babies, our bond. these are some of the strongest people i know. they're always there to help whenever someone has a question, is celebrating a new milestone, or feeling like they're ready to crack. if it wasn't for our beautiful babies, it would've never brought us together. and again, we'd be missing out on some of the greatest, strongest people we "know."


  1. Great story. From a mom with a daughter who has hydrocephalus....and is now in college. :)

  2. Loved reading this. It's very inspirational and I adore how sweet you sound. You're right we are LUCKY! How anyone could miss that is beyond me and I've not even delivered yet! I am waiting with giddy anticipation to meet my little guy and discover what wonders lay ahead for him. :)

  3. Wonderful post! Love all the pics too. :)

  4. Lindsay,your words are so probably helped so many moms/parents who might have been struggling with some of their emotions.I can truly see why you were chosen to be the parent of a child with physical difficulties!
    AI Du Pont is a phenominal place!!!I volunteered there,worked there ,and my daughter's operations and physical therapy was there.They are on the cutting edge of new technology and information. Plus they never turn anyone away due to financial difficulty. And they truly DO care about each and every child!!
    Bravo to you once again Lindsay for being a corageous crusader!!( even on days when you don't feel like it) Thats' true courage-and love!
    Your friend,Maryann :-)

  5. I feel exactly the same as you! WOnderful post! I wrote a similar one on my daughter's blog for spina bifida awareness month too :)