Monday, February 21, 2011


We all want it. At a young age we begin to seek it. From that first drawing Mom puts on the fridge, to the coveted smilie face or star sticker on our homework. We are cultivated to desire it. The promotion, award, scholarship, thank you note. Something that validates our efforts. Something tangible that tells us we succeeded. We did good. When we are validated - we find the confidence, self - assurance, and strength to keep going. In jobs, relationships, hobbies and past-times...we thrive on it...and without it we become discouraged. Even my little guy loves a nice "good job" squeal from mommy when he does something right. He grins and claps his hands at applause. And he'll do it again. Because I validated him. And he wants that.

On Thursday February 10th, the spina bifida community, my community, was spotlighted. Maybe not everyone in the world knew about the recent results of a controversial clinical trial known as the MOMS study - but our world sure did. And on that Thursday - everyone was talking about it. That evening, while I was quickly reading through the multitude of facebook and blog posts and watching a video clip of Diane Sawyer explain spina bifida and this study in a very simplified way - I realized this was big. Really, really big. I knew this would call for a big blog post. I couldn't really wrap my head around it that night I thought I'd wait till tomorrow. Of course at 3am I got the worst stomach virus ever and was out of commission for days (go figure). But now here I am. All better. All sorted-out. And I thought maybe I'd just skip that post. After all, I already had some other things to write about. And life had moved on. But here I am writing about it. So I guess I still had something to say.

If you don't know about the study - basically it was a compare and contrast on prenatal and postnatal surgical repairs on those born with spina bifida. The surgery needed to close the hole in the spine that didn't form correctly. This study was a way to test and see if children who had the opening in the spine closed while still in utero had any advantages to those who had the opening closed after birth. You can read an account of the findings on a friend's blog here but the bottom line was - the study was favorable to those who had prenatal surgery. You can only imagine the emotions this has stirred. My first thoughts went to my friends. My sweet amazing friends and their sweet amazing children who were born with SB. For the few who had participated in the study and were selected to have the prenatal surgery - this was earth-shaking, exciting and encouraging. For them, the fears and worries they faced in making that choice were being appeased - the trial results were telling them they had given their child the best chance possible by participating in this study. They were pioneers for future possibilities in treating spina bifida. Their stories were in the news and people were talking about it. This was a very good thing - the best possible scenario.
Their decision was being validated.

To the many families who did not receive the prenatal surgery - whether they didn't qualify, or chose not to participate, or participated but were selected for the "postnatal" group, or never knew about the study at all - to these families, the results of the study was a different kind of earth-shaking. This group was left without scientific validation of their decision or circumstance - an in it's place was a big fat "well now what?" Can you imagine? The mind games? The heart going from defensive to doubtful? The questions. The inward struggle to balance perspective and possibility. I don't have to imagine it - I am, after all, in that group.

We chose not to apply for the MOMS study. And if you know Jet's Story, and how much we feared for his life, and how thankful we were upon the diagnosis of lower lumbar spina bifida (utterly relieved, so so thankful, I know right?! Thankful?! Read it if you're confused.) and how we knew God had given our baby a second chance at life - and he was going to be our beautiful, undeniable miracle baby- then you probably know why we didn't feel the need to face the risks of prenatal surgery. It wasn't for us. Honestly, I am so thankful it exists - and have great hopes for what it means for the future. I know it will bring awareness and hopefully a less frightening view of SB and what it means to be pregnant with a child with spina bifida. But it was not part of our story. Did I worry? Sometimes. Spina bifida was still scary. Did I see other kids who had been elected for the prenatal surgery who were doing very well? Yes. Did I see kids who had NOT been elected for the surgery doing well? Yes. It all seemed so individualized - so dependent on each individual child and their circumstances - that I really felt like Jet had as good a chance at a wonderful life as anyone. And we were content with our decision.
And thank God - he has a beautiful, wonderful life. And I still know we did the right thing for us and for him. God protected us - allowing us to feel that strong sense of "no" when faced with this option. And I don't regret it anymore than I could regret my sweet miracle baby. He is exactly who he is supposed to be and God has a beautiful plan for his life and ours.
But he still has spina bifida. ALL these kids (prenatal AND postnatal) still have spina bifida. There are still hard times, and worries, and surgeries and struggles. But for those who did not have the prenatal surgery - they (or I should say "we") are left in danger questioning every struggle...every procedure...every surgery. Would my child still have to face this if they had received prenatal surgery?
And the answer to that: A big fat "WHO KNOWS?"
(followed by a milder "well...actually God knows. But I'm pretty sure He's not going to tell. And that must mean it's okay that I don't know everything...cause that's His job...which I have to admit is a relief.") Not a one of us can know how our child would have been in the opposite scenario. No one who received postnatal surgery can know how or IF their child would have benefited from the prenatal. And no one who received the prenatal could know how much "worse" things would have been if they'd waited - or if they would have been worse at all! There are some complications that can arise from the prenatal surgery as it causes a high risk of premature birth - something that holds it's own list of concerns and health issues. But can those parents know how it would have turned out otherwise? No. We can't know that. We don't know that.
We just don't know.
Does that sound familiar? Oh that's right... it's the spina bifida tagline -
"Spina Bifida: We just don't know."
Okay. So that kinda made me laugh. ;) If you're smiling too - good. It's healthy. We have to just laugh sometimes because it's so, so true. We don't know! How many times do we question and wonder and worry and go "I just wish I knew...(fill in the blank)." How many times does someone ask us a question and we say "well, we just don't know yet." We don't know what caused it. We don't know what we'll face. We don't know how we're going to pay for that, answer that, teach her that, help him with that. We've done this since the pregnancy - and we've had a lot of questions answered. (Will they need a shunt? Will they ever walk? Will they look like me? Oh come on - we have normal questions too! ) But for every answered question - there's a new one that's still unanswered. But you know what - that's okay. Really. It's okay. Because the important stuff - we'll figure it out when the time comes - we always do. And the stuff we never have to face - well it doesn't really matter what the answer was then does it?
The most important questions already have answers-

Answer to questions like "can we do this?"

I could do this forever.

"Will they be happy?"

Umm..could that smile be any bigger?

"Will we be normal?"

I'm not even sure what that is...but I'm loving what we are.

"What good can come out of this?"

Oh my. There are not enough words.

When we were told that our baby had spina bifida - and was going to live - but may not walk very well - I remember thinking "that's okay - there's so much more to life than that.
We'll be okay. He can do so many other things."
I never thought he'd be playing soccer at the park with his Daddy before he was even 2 years old. I could just cry thinking about it.
Okay. Who am I kidding. I'm totally teary-eyed.
This is my son.
My son Jet who was born with spina bifida.
If we had had the prenatal surgery I have no doubt we would attribute his amazing accomplishments with this study. We'd say "we did the right thing - he's walking - he's only had 1 additional surgery - he's a beautiful, smart, healthy, amazing little boy." And that would make sense. But we didn't have the surgery. So what then? Why is he doing so well? You can wonder it. I've wondered it. And I can honestly say I believe - sweet friends - that it was God's purpose for him. He is who is his - not to take away from the results of this study or to say "ah -ha! look at this kid" in the face of the doctors who are promoting it - but to give renewed hope and validation to the individual scenarios we are all in. We are all different - and just like always - it's not right or realistic to compare. We are NOT fortune tellers - and we need to live in the lives we have now. So instead of wondering how much BETTER he could be (which honestly - just sounds like a joke doesn't it - better than this? Don't be greedy, Joanna. I know. And I agree.) Instead...I'm going to stop. Take a breath. And give thanks to to the One I can attribute with Jet's progress and well-being. Thank Him and trust Him in whatever comes our way. That even though I may not know the future. And even though we can't even have clear hindsight in this type of situation! And even though we wish that our children never had to struggle or suffer illness or heartbreak or hardship. That through it all - He is molding them for His glory. He is perfecting them in their weakness. He is lifting them up in ways they would never experience if they never fell down. Just as He lifts us up as their parents.
I remember saying to my mom months after Jet was born - "I can see the good now. I marvel at how this experience has brought so much joy to my life. I didn't know how much I would be blessed - forever changed - by having a son who has SB. I can already see all the blessings God has made for me. I am so happy and thankful for Jet. But I'm wondering...and trying not to worry...what are the blessings for him?" And she said "Just as Jet is your are my daughter. And when you first were going through the fear and heartbreak of this journey...I wondered the same thing. You were so strong, so inspiring to others during such a hard time that I felt the blessings of being your mother...but I was worried about how this could bless you. And now here we are. And you are blessed. Turns out I didn't need to worry after all."

So there you go. That's what I cling to. The hope, the faith, the trust that God will bless him - above and beyond how I have been blessed.
Yet, even if he only receives 1/4 of the happiness and fulfillment that God has bestowed me through giving me him as my son - he will have a wonderfully, richly, greatly blessed life.
And I know God is already working in his life towards that purpose.
And that my the sweetest validation.


Sarah said...

I love this! I Love this SO much! I too wanted to write about it, but could not come up with the words. I watched the news clips and read the articles with tears streaming down my face. Happy and Sad tears.
I always have to go back to that feeling in the doctors office the day that they told us about the MOMS study. It was SO new. I remember them talking it over with me and I will never forget the feeling I had that it was not right for us. I am so grateful for that feeling and the peace I had when I declined so I can go back and remember that when I start to question if we should have done it or not.

It's super awesome though to hear about what amazing things this surgery has done in the SB world. I would be interested to hear about how many moms were able to go on to have more children after having the surgery. When we were told about it we were told we could not have more children, and that was our deciding factor. It was just to risky.

Thank you for doing this post. It was beautiful and touched me deeply. I am grateful you put into words what I was feeling that day watching those videos.

You are amazing and you are doing Amazing things with sweet Jet. he is awesome!

Jamie said...

I love this post. You are so very, very right.

Aurora Flores said...

I can't say it enough, you're a wonderful mother. Jet is blessed to have you, and you to have him. You cherish every moment and I love that about you guys. Spina Bifida? Big deal! That's not going to stop Jet from accomplishing some amazing things!

Colleen said...

"Spina Bifida: We just don't know."
Ha! I love the new tagline, perfect!

Thanks for sharing your thoughts on this. You know, I've been thinking a lot about the reaction of the community, especially after someone said they were sort of afraid this would become an option for everyone, and I thought why? It made me wonder if some people viewed the fetal surgery almost in the same way as termination, in the sense that we all think "What, my baby isn't good enough for you?" Like, why would you risk your baby's life with fetal surgery when you could have just had a baby as wonderful as mine--isn't that good enough? But that's not it at all. We each make the best decision we can with the information we have, and even better if we listen to what God is telling us to do. He told some of us to do fetal surgery, and he told some of us not to. I think we moms put so much pressure on ourselves. We're our own harshest critics, and we're most judgmental about ourselves. Anyway, that's my mini-blog post in response to yours. Thanks for sharing your sweet boy with us. You're both inspirations.

Chad and Kristin Pendley said...

Y'all are an inspiration! Love you guys oodles and oodles!

Sandy said...

Thanks Joanna, Very well said. And as always very cute pics of Jet!

Meinhardt Family said...

Joanna - your words are so "right". I love reading your post. You are a good writer with great things to say. Thanks for sharing. Give Jet a huge hug!

Scasmflops said...

So very perfect!!!! I havent put my post up about it either...just cant come up with the right way. Each of our stories are so unique, but so are we, and so are our kiddos. I can't agree with you more that only the Lord holds the outcomes... and it is for good. We are so blessed to be a part of His plan and are our kiddos will be used for His glory. I do love the "spina bifida- we just don't know" I think I'm going to put that on a shirt to help with all the questions we get. :) Love you girl!!!

Selina said...

Well said, my friend! I think you spoke the words that are in the hearts of many...myself included. I honestly didn't have it in me to really fully express my feelings on the I briefly covered it, and moved on. The truth is, I've spent so much energy trying to explain to friends and family what it means to be part of the "postnatal group" in the trial, that really getting into the emotions that come with these results, just seemed like too much for me. I truly believe God opens and closes doors for each of us, and though our stories might not all be the same, HIS will and HIS timing is perfect....I know HE knows this book, beginning to end, and I couldn't ask for a happier story than the one I have.

Jill said...

You always say it so well, and with the best pictures! Could it get any better? Not a chance. Well, maybe if we had all had twins ;)

truly blessed said...

the tears are flowing as i type this. your words always touch my soul. they are just so true.
i hope you know, dear little momma, that i love you.
you inspire me, you encourage me, you make me laugh and yeah, this morning you're making me cry. that's ok though. it's a good thing.

The Dugan's said...

So beautifully written. And I love the pictures....I'm coming to GA so you can take ours :)

Leigh and Andy said...

So well said!! I also wanted to write a post about this...but just couldn't, and still can't. Thanks for doing it for me. :)

"spina bifida: We just don't know" I love it!! :)

Gretchen said...

Great post!

I am still marinating on mine.. (well that and throw a couple of trips to the hosiptal in there...) but have no hope of my words being a true nad brautiful as yours!

Lindsay said...

I guess this post slipped by me, but I am reading it now... and crying tears of joy. God is just so incredible. Jet is blessed to have you as his momma!

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