Not Alone

Today I read an expectant mother's blog post about her family struggle - to keep or terminate their unborn baby who has just been diagnosed with Spina Bifida. She was asking for opinions on which they should chose and I could tell she was really weighing her options. I have to admit I felt shocked - having a little boy with SB and being so marvelously blessed - I was stunned as I immediately teared up and my heart screamed "no!" I felt the pain of that day - that heart-stopping day when we thought we were losing our baby. The day we were given that same choice but with a much worse diagnosis. If there is anything more frightening then facing the choice between giving birth to a child incompatible with life or ending your child's life before they are born, then I'm not sure what it is. I have never felt more lost or afraid.

But then the morning came.

And if you've read Jet's Story you know how God in His mercy granted us a miracle. And the first miracle was when He made the choice for us. We never even had to. Not that I can say I would have chosen differently - but I remember distinctly feeling like I couldn't ever speak again - much less "choose" a plan of action. Until God gave me breath again...and gave my son life.

Since reading this mother's thoughts and fears and taking compassion on her - for I understand her pain so completely - I wrote her the thoughts in my heart and pray she finds the peace and wisdom she needs get through this and feel alive again.

And then I went back to the blogs I visit the most - the friends who encouraged me before I even looked at my beautiful son and told me "our children are amazing gifts - it's going to be okay". I reread their words that mirrored my own and prayed they would find this mother and help her to see what the reality of Spina Bifida truly is.

A

nd the reality is Happiness. Strength. Gratitude. Love.

And you don't have to take my word for it...

"September 24, 2008 was the day we found out about Greyson's spina bifida.... As I sit here tonight, I can't help but wonder if there will ever be a time where I feel like that person again. The person I was before September 24, 2008. That person didn't know anything about spina bifida...That person didn't lie awake at night feeling like I didn't do enough PT that day, or lie awake going over the pros and cons of getting KAFOs over AFOs, she didn't worry about appointments, or make a list of the different medical supply companies to call trying to find the right catheters, or know the fear of the surgical family waiting room... BUT, that person didn't know how much she could love another person. Didn't know what it was like to cry tears of joy over her baby sitting up by himself for the first time, or rolling over. She didn't know what it would sound like the first time her son would say "mama" the or what it would feel like the first time he would give her a hug. She had no idea how she could just look at his face and know exactly what he needed. I never knew this kind of love before and I am SO GLAD that I will never be that person again. The person who took things for granted...took life for granted. As hard and as sad as that day was...my life has changed in the best way, I have become the person that I was meant to be...this little guy's mama..."

Leigh : Mommy of Grey

"Tomorrow marks the day I stopped breathing. The day I thought things would never be okay again. The day I was sure our life as we know it was over. Nothing would even be confirmed for another two weeks, but in my heart I was sure my baby was not going to come out on the winning side of those little statistics.

We have come so far in a year. Now, I breathe in his loveliness every hour, we're better than okay and our life hasn't stopped. I have to remember this and just be thankful that those 4 horrible months are over and that the last 8 have been so much more amazing than I could've imagined."

Jill : Mommy to Kingsley

"I totally understand that overwhelming fear, because I was there too. I also wished the "problem" would just go away. I also got bad news ... The most severe form of Spina Bifida. L2--higher than average. Arnold Chiari Malformation and hydrocephalus. It was terrifying.

I chose to trust God. I knew He doesn't make mistakes, and if He gave this child to me, He was going to help me raise him. And I don't want to sound like a crazy person, but He told me so. I heard Him. Not audibly, but very clearly. And this is what I got...a handsome, silly, train-loving, outgoing, stubborn, brave, happy, running, fun-loving, totally-adored, musically-gifted, hard-working, superman!Some might say, "Well, sure, but he's an exception." But you know what? I think all of us think our kid is the exception. We all consider our kids miracles, and they ARE because we gave them the chance to be. Not because we're any braver or stronger or more patient or better parents than anyone else, but only by the grace of God."

Colleen : Mommy of Nate

"When we first hear that our child has a disability, we worry so much because of the unknown. We worry because we feel they will be incomplete. Questions like "will my child ever walk" creep in and haunt us. Then comes that magical arrival. Maybe days, maybe weeks, for some even agonizing months - full of worry but also a large lesson in trust. Then, we finally get to take that child home and from that day forward we begin to experience that, disability or no, there is absolutely nothing missing. We begin to see that the only thing that was "incomplete" was our understanding of what love and family is really all about. Concerns and worries about our child's future and well being - they are still there, but as that love grows, as that incompleteness of understanding is wiped away, the concerns and worries take their proper perspective and become much more minor inconveniences in a life that is more full than we could ever have imagined."

Karen : Mommy of Carson

"I thought of this, when I thought of her (an expectant mother's) worry, and the worry I had, and the joy Charlie brings.

If I could "fix" Charlie, and take away Spina Bifida, and undo the need for the shunt and give him full function, I would. But - if God called today and said they had a perfect model, with working legs and no Spina Bifida, who was otherwise just like Charlie - but the catch was, I would have to give back the Charlie I know and love -

I would say No.

No way."

Jennifer - Mommy of Charlie

"...Our children are much more than their disability. Our children are as much of a blessing as any other child...sadly ANY child could be diagnosed with a disease or illness at any point in their life and most parents wouldn't stop loving or parenting them. You just love your children unconditionally and you work it out. You find a way to be better because of it."

Nicole : Mommy to Annabelle

"Nellie is an amazing blessing in our lives. We have more challenges in our lives than the 'average' family, but I can assure you we have more fulfillment, joy, appreciation and love than ever imaginable. There was a time in my life when I didn't think I was up for this challenge, but now I can't imagine my life without it.

We love you Nellie. Don't change!"

Megan : Mommy of Nellie

"I have been given a gift. Yes, you read that right. It might seem that gift is a strong word to talk about this diagnosis, but it really isn't.

It has brought me the gift of celebrating each little milestone, to recognize the amazing capacity children are born with. It has shown me that my child is stronger than I could ever be. It has given me the gift to realize that some things in life are important, and some things are not.

Spina Bifida has brought me clarity....

To be thankful for every movement, every laugh, every smile and to marvel at the love that I see and feel every day. We celebrate each exploration of our world. I have less moments of mundane and more moments to bask in the joy of my son's accomplishments...

It has given me the gift to realize the strength of my partnership... we are stronger now than before we knew what spina bifida was. I have been given the gift to realize that we are four individual pieces of a puzzle that produces a beautiful picture...

So

today I celebrate the gift of Spina Bifida - that I have been given many little gifts with this diagnosis that I didn’t know that I needed, but that I am not willing to give up. I do have moments of grief and negativity but these are more than balanced by gifts of clarity and love, moments of joy, realization of faith and appreciation of my many blessings."

Amanda : Mommy to Nick

"Caleb is not a mistake, he's perfect. I can't imagine my life without him and I don't want to. I have never, not once, not even for a second regretted giving him a chance at life. What if I had listened to that doctor? What if all these parents had listened to their doctors? This world would be missing some pretty amazing people."

Cassie : Mommy to Caleb

" I know, with certainty, that my life is richer because I have a special little girl...She's a rockstar. And she makes me believe anything is possible. I see perfection every time I look at her. Ten perfect tiny figers, with ten perfect tiny toes...A smile that lights up a room, and a giggle that makes you forget whatever you were doing and join in....Perfection. It's the same perfection I see in Mason. They are my babies, and they are perfect...I truly believe that God does not make mistakes, and He never gives us more than we can handle. Life is what we make it, and perfection is really just a matter of perspective. I know my perspective has changed...and all for the better. Ten fingers. Ten toes. One heartbeat. One life that I cannot live without...perfection."

Selena : Mommy to Maddie

"I am the mother of a handicapped child. It isn't a tragedy. It's the most beautiful thing that has ever happened to me, because now I know what it is to truly love-it's sacrifice. It taught me compassion, understanding, and patience. Because before I gave birth to my baby, it was all about me. My life revolved around my own conveniences, and comfort was my only concern. Now, I worry less about myself and more about others. It has made me a richer person; maybe not monetarily, but spiritually.

So if I look flustered or tired, sad or stressed, know that my life wouldn't be better if my child were never born. If you feel helpless offer help or a kind word instead of criticism. You might as well stab me in the heart. My child's life is worth living! Not just because I wanted mine, but because it's a true gift from God."

a quote shared by Michelle: Mommy to Brendan

"My name is Joanna, and my son is a gift. My heart is full as I look at how we've been blessed. My soul is richer from this journey we are on. God has brought me through the worst nightmare of my life - and given me the baby of my dreams. I cannot deserve him. God is so good."

Joanna : Mommy to Jet