Thanks to spina bifida…

“What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others.” ~Percicles

When I first learned Chance had spina bifida I recall thinking it was some awful curse. Like the worst thing in the world that could possibly happen to me and to my family. A conceived notion that it was just one more stroke of bad luck and the initial thoughts that entered my mind were all the most awful things that could possibly happen. I kept thinking of what my baby boy might never do. Throughout the remainder of my pregnancy with him I gradually learned so much more about spina bifida through the many resources I was provided and things I learned online. Some of the most valuable things I’ve learned were from other families who were raising children with spina bifida. When I was pregnant I was still very apprehensive and scared to take time to meet all the spina bifida families in the area that had reached out to us. Since the fall I’ve experienced a strong network of families online and I’ve even gotten to meet with a few since the start of this year but today was the first time I really recognized a sense of community locally with other families who have been faced with similar challenges due to spina bifida. Yes, thanks to spina bifida I have a memorable reflection of today to share with you all.

We met this afternoon at the Altamonte mall for what we dubbed a “playdate”. It has a “play area” in the mall so we’d be able to let the kids play while the adults had some time to chat. Today was the first time I turned Chance facing forward in the bjorn…he loved every minute of it. Of course after running around taking photos for a while I was quite stoked to have my baby girl express an interest in holding Chance. I offered to let her carry him in the bjorn and she proudly toted him around for a little while so I could focus on photographing some pretty awesome moments today.

One of the most endearing moments of the day was seeing Hope from a distance caring for her baby brother. I adore my baby girl…she’s such an awesome big sister. I knew she’d love him before we found out he had spina bifida. But thanks to spina bifida I can sense she has truly embraced her baby brother and often expresses concerns and all her own hopes and wishes for her baby brother. Just like us…she hopes he will walk. She’s worried he might get teased growing up. She prays just like me that he’ll someday go “potty” like a big boy. She loves him unconditionally.

Though I had met with a few families separately this past year today was the first gathering of several families in the Central Florida area that I’ve been a part of. And we can thank Colleen for our little meetup. She was visiting Florida from Kentucky and expressed an interest in meeting with the other spina bifida families. If you’ve been following my blog since the fall you may remember me writing Colleen who is also a moderator of the babycenter spina bifida board after some very chaotic moments I faced as we were deciding how we’d proceed with the pregnancy. Most mothers who have a baby with spina bifida somehow connect with Colleen online. Through the outrageous number of responses I received last fall, many of which were very opinionated in personal beliefs, Colleen was one of the very few mothers I continued to correspond with because thankfully she offered an amazing amount of care and support without judgment. I’m still quite touched because she’s also the one who created the first ever worldwide spina bifida prayer day last fall, on the very day that I was to meet with Chance’s neurosurgeon for the first time. Yes, one person had the ability to reach thousands of people all because she knew I was faced with a very tough decision of whether or not we’d continue with the pregnancy…a decision many other families have faced. Yes, thanks to spina bifida I have had the opportunity to meet someone who has given so much of  herself to help other families who have been faced with the challenges of spina bifida. Colleen I can’t thank you enough for helping make today happen…and for the embrace you’ve sent us in the toughest year our family has faced.

Colleen’s son, Nate, also has spina bifida.

I believe Colleen is the only one of the group I met with today that went through prenatal surgery to correct her son’s spina bifida…and yes, this adorable guy is walking.

Remember Grayson? I met with Melisa and Grayson a little over two months ago for the first time. It was awesome seeing him again.

Oh, how I adore my buddy Grayson’s eyes!

We got to meet Gabriel again too!

Sorry Kim…we both knew it’d be inevitable that you’d get tortured by my camera.

I adored seeing how much Chance’s friend has grown.

When we confirmed this little gathering every one reminded me to bring my camera…not that I’d ever forget it.:)Though I took hundreds of photos, it was fun watching the others trying to capture their own moments on their cameras and phones.

Though it was our first time meeting Nancy and her son Joshua, she was another mother who had reached out to us last fall when we first learned of Chance’s spina bifida. I recall learning about her son, of course it was much more rewarding to see this little guy in person. He definitely loved my camera. He’s two and another spina bifida kiddo who just started walking recently.

Team Chance probably shouldn’t be promoting another team for the Walk-n-roll event, but obviously…we’re all in it to promote the cause. As much as I joke that Team Gower Power is our competition, they really are an awesome family we’ve come to adore. Nicole’s family is the first spina bifida family we ever met with. Jason and I took the kids out about a month before I had Chance to spend sometime with her and her kids. It takes a special and strong person to have a child with spina bifida…but most, aren’t given the option…spina bifida almost always is delivered in the form of a diagnosis during pregnancy. Nicole, however, made the decision to adopt not just one, but two children with spina bifida. It speaks volumes about what an amazing person she is. So yes, we’ll pretend for a little while that we’re competing to see who can raise the most funds for the walk-n-roll event, but there’s no doubt how much our families have come to adore one another. (Let’s go Nicole…get to raising that goal to 10k like Team Chance!!!)

When I was pregnant with Chance and worried about all the things he might not be able to do…I definitely didn’t think I’d meet a kid with spina bifida that would eagerly climb on things and jump off…over and over. Nicole’s daughter proudly made sure I got to see what she can do…who cares if she has spina bifida…if you saw her run and jump around today you’d never know she had spina bifida.

Just this past week I heard from a mother expecting a little one who has spina bifida in the next two weeks. When I informed her of our little get together she decided to take some time to meet with us. As tough as I know it must have been to build up the courage reach out and meet with other families while she’s still pregnant, I have no doubts that leaving us today left her a little more hopeful for what is ahead for her little one. Yes, it’s only a matter of time and I will get to meet her baby boy for newborn photos.

I also invited Laura, the only adult with spina bifida that I’ve met thus far. When I found out Chance had spina bifida I recall that first week reading so much. I hesitantly googled some things, like “spina bifida” with “orlando” in hopes that I’d learn a bit more about the local spina bifida community. Some how I stumbled upon some of the things Laura has written online about spina bifida. Back then all I recall feeling those first few days were my fears of all the worst things that might happen to my baby, but stumbling upon her web site I recall feeling an uplifting feeling of hope. She’s an adult, who has coped with spina bifida her entire life, and she’s doing just fine…she continues to be an inspiration to many in the spina bifida community. It was evident that all the mothers found her presence reassuring today.

When I first had Chance I recall meeting with Laura when he was about a week old one day when she was at the hospital for a meeting. I had hoped that she might be able to meet him that day but due to the NICU’s shift change and the nurses ordering me to go home when I was in pretty bad shape in my recovery they never got to meet, until today.

It was definitely an uplifting moment seeing Chance with his new friend.

As Laura agreed to help out holding my baby boy so I could run around taking photos of the other kids, I looked over and Chance was out for the count sleeping soundly with his new friend. I adored seeing the two together. It was a memorable moment for Laura too who paused to text and post photos of her with my baby boy from her phone.

Before we left Laura’s mother arrived and spent a bit of time with us…she’s someone who can not only relate to where we’ve all been…but with the challenges all us parents may have ahead.

I’m fairly certain my kids were happy I wasn’t torturing them as much with my camera today. In fact, they were so busy running around that after a while I felt bad that I wasn’t taking as many photos of them as I was of the other kids. Thankfully that just meant that when I did stop them they paused for a good photo. Hope definitely had a great day…yes, thanks to spina bifida she got to have fun today.

This time last year Jaylen was still the “baby”. Oh, how I miss him being the “baby”. But I adore knowing how much he’s grown to be more independent. In fact, he was running around playing the entire time having fun. He’s still too young to really understand what spina bifida is. He just knows Chance has had some “boo-boos”. As much as part of me still worries how my children may feel about the challenges that Chance’s spina bifida may bring our family, today I can thank spina bifida for helping my baby boy having so much fun with the others.

Yes, last year when I learned Chance has spina bifida I worried just as much about Hope & Jaylen as I did about Chance. I have (and sometimes still do) worry how Chance’s spina bifida may affect our entire family. But there’s no doubt that today we can thank spina bifida for a memorable day with all the others who joined us.

Thanks to spina bifida…today happened…spina bifida gave us bitter sweet memories that I definitely won’t forget.
…Thanks to you all for a memorable day…and for putting up with me & my silly nikon.:)

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July 22, 2011 - 10:30 am

Colleen - Thanks, Amanda, for the sweet words, and the wonderful photos!

July 22, 2011 - 11:08 am

Cassie McLelland - So jealous! I would love to have been there, too bad I live in Texas. Beautiful photos by the way.

July 23, 2011 - 1:30 pm

Laura Tellado - AMAZING post. Mami cried reading it.

You can ALWAYS count on me for support, and I hope to be there for you and your family as Chance grows up to be an intelligent, HANDSOME, independent, compassionate boy. I love him so much. And you. <3

July 25, 2011 - 4:08 pm

Lora - There’s nothing better than getting together with others who “get it”.

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