Thursday, May 26, 2011

Best Case Scenario

I have an ugly confession.

On the SB forums, like any other support forum, when someone new joins and announces that their baby was just diagnosed and asks what to expect, what do our kids do, what are they capable of, are they defying the odds? I freeze. I read the other responses. Then I type. Delete. Type. Delete. And finally describe Kingsley as a newborn.

I remember perfectly how scary that diagnosis is. I remember reading about other kids. I remember zeroing in on any kid who had a defect around where Kingsley's was. Jeff and I would read them over, pick them apart, compare and contrast: Well, that kid is where Kingsley's is and he can walk. That one has AFO's, that one doesn't. That kid has had FOUR shunt revisions!! Holy, that one has had a whole bunch of surgeries. That kid you can't even tell she has SB, what's her level?  All we wanted was reassurance that what everyone was telling us was true: the doctors who diagnose give you the WORST CASE SCENARIO. Your child will be a rockstar.

There are so many examples of children with SB defying the odds, karate chopping SB in the teeth, doing all of the things 'they' said they'd never do or wouldn't be able to do, accomplishing things they'd never achieve, meeting milestones right on track, despite the dreaded predictions otherwise. Take that, spina bifida!

Kingsley doesn't exactly do that. Kingsley is one of the kids that would've made me dissolve in tears for days if I had read about him when I was pregnant. That one is S1 but functions at L1!! He's getting a wheelchair and has had FOUR surgeries already!! *sob* He can't even eat normal food yet!  The end of the world! The worst case scenario come true! And that's why I hesitate when new moms ask for reassurance. They want to hear about the other kids, not my boy. I know this and I don't blame them in the slightest.

The thing is, it's hard to describe in words how incredible Kingsley is. It's hard to understand how he completes our family, how he lights up a room with his smile, how he smells like heaven when he wakes up in the morning, and how he can charm the pants off anyone he meets (What's that Kingsley? You want a new house? Sure! I'll build you one! ;)).  His laugh is electric. The faces he makes can entertain me for hours. He's brilliant, pure and simple, you can see his mind working and figuring things out whenever he plays. He's such a happy, good natured, adorable kid. And the wheels he rides are pretty cool.

The level of functioning, the number of surgeries... they really don't matter. People say it over and over and over, because it's true. When it's your child that you are holding, it doesn't matter. With Kingsley, it's the way his lips move when he says Mumma, the way his arms wrap so tightly around my neck, the sparkle in his eye when he sees me walk in the room, the way he's entertained by his sisters, the way he says Dadda? Dadda? when he hears the garage door, the way he pounds on his toy piano, the way he dances when he hears a good song, the way his lips pucker when he's trying really hard to do something, the softness of his skin, the way he throws his head back when he laughs... those are the things that matter. Those are the things that make me feel every day like we got the Best Case Scenario. So, take that Spina Bifida.

Fresh eyes for you, Kristin.


  1. Great post. It really amazes me how we all did and do the same things after the diagnosis-everything you and your husband did, we did. Kingsley is adorable and amazing. I know our sweet Palmer is going to blow us away as well. Keep up the good work Kingsley!

  2. Absolutely!!!!!!!!! Kingsley's smile and personality you can see through his eyes are infectious. I know he will continue to amaze you daily. :) I can't wait to see what he will become!

  3. All those things that you love about Kingsley are the only things that matter.

  4. you have such a way with words.
    rockstar indeed!

  5. Beautiful post. So so so perfect. I'm so glad you wrote this. I know we are all a family - but that doesn't mean we don't look around and notice differences. We haven't had the surgeries or struggles yet that many kids younger than Jet have faced - but I see the same brilliant sparkle in all of our babies' eyes. I have the same worries. I have the same hopes. I love him the same way. No matter what our kids are going through - best or worst case - they are our precious gifts - our loves - our miracles. And you said this so, so well. Bravo. And thank you. <3

  6. Jill,

    I've been waiting for some more pictures :) M and I both oogle at his awesomeness and we haven't even played with him, he has us hook line and sinker :) What a rock star your boy is :)


  7. FRESH EYES! I was totally thinking how I loved his fresh eyes in that shot before I even saw the note to me! ; )
    Can't wait to snuggle with those fresh eyes and see all his skills in action!

  8. Beautifully written. This is what you should post next time we have a "new member" join our club. Kinglsey is such a doll. I hope I get to see the beautiful eyes in person one day.

    Thank you for sharing so honestly what this proud mom feels about her daughter who has had 8 (crazy, I know) surgery's and eats mostly from a feeding tube BUT wouldn't trade her for ANYTHING!!

    Hugs to you,


  9. I love it! And you are so right, even with the surgeries and revisions and hospital stays, we are just still so lucky!

  10. Beautiful post, Jill. You are so so right. We all do/did the same things...look at others and wonder and hope for our own. But in the end, it doesn't matter what our kids can or can't do. They are perfect just as they are. :) Much love to you and your little King. :)

  11. You said it perfectly, Jill. The things that make our little ones so special, have nothing to do with spina bifida...and those precious things are the ones that matter the most.

    Much Love,

  12. Our little guy is 14 months old, has had 6 surgeries, 3 shunts, had a stroke, needs thickened formula, barely uses one arm, and doesn't move his legs at all, but he is the sweetest, cutest, brightest, most loveable baby in the world! I know he will overcome it all in his own time. I know how you feel....

  13. Well said, and again I think it could apply to all other special needs kids/families. Kingsley is a rockstar! I gotta the bottom picture, is that a bucket with beer? It looks like he's thinking: Wow it's hot, I need to cool off. LOL :) As always, he's a cutie!

  14. So true. The pure awesomeness of our kids is nearly impossible to put into words. I've always said that I don't go around picturing what it would be like if Nate were running around or potty training like other three year olds. Because that kid, the one that I would imagine, wouldn't be Nate. And I couldn't imagine having been blessed with anyone else BUT him. This was a great post, as I am going back to see the peri who first diagnosed Nate and gave me all the worst-case scenarios. Can't wait to brag to him about all the best- case kiddos out there!!!

  15. I will echo everyone here, soooo, soooo true. Its funny how we think its our dirty little secret, the picking apart, comparing, trying to make sense of it all and "prepare". We ALL do it. Not just in SB land, but every where. we are human. you have said it perfectly!!!! I can't tell you how many times we will meet a new "expert" and they are amazed when they see Alex in person, because on paper, he looks a little scary. may not be the right word but its the only one I have. In person though, watch out-- he charms, he radiates, draws people in. I don't know if our little ones are blessed with that little something extra, or if its just mama love--maybe some of each. I love reading your blogs and ofcourse all the adorable pics of Kingsley. He IS a rockstar!!!!!!

  16. Great post, Jill! You should just write what you wrote here to parents on the forums. They just need to look at your blog to see what a wonderful cute little rockstar you have!

  17. This is so great! I completely agree with Nicole (and everyone) that you should write this when that new person joins!

    Yes I did obsess about numbers and levels and surgeries and compare (ok, sometimes I still do). But you totally hit it! What is important, really important, is your child. Not numbers and figures.

    Kinglsey on paper, looking at those numbers and letters, might have made you dissolve into tears. But not the Kingsley you have here - that lively, cheeky, smart, rock star Kingsley. The one we all love to read about. That Kingsley would give hope. That Kingsley will make parents strong.

  18. I am catching up on posts and needed to read this one today. Thank you for reminding me of what is the most important.


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