Sunday, October 14, 2012

Spina Bifida Awareness Day 14 - Jet

Dear life,

This next boy has the sweetest smile. His mother Joanna is an amazing mama...she wrote something that has resonated throughout the Spina Bifida community last year...and is now something that is quoted regularly.  She has been an advocate for our sweet Sofi Rose...and I am blessed to call her friend.  I can't wait to meet her in person.

"My "sunshine-personified" is my 3 1/2 year old little boy - Jet.

He is about as happy a kid as you'll ever meet. His smiles are contagious and will never fail to warm your heart - and don't get me started on his hysterical giggles...his laughter my favorite song to listen to. He loves Toy Story, dinosaurs, goldfish crackers and singing ALL DAY LONG. He is 100% wild, crazy, dirt-playing, mess-making, outside-voice-screaming boy - but still somehow loves to crawl up in my lap with his blanket and rock to sleep at night. He is our baby. Our boy. Our "Boo". Our blessing. 

And he is truly our sunshine out of darkness for at 20 weeks pregnant - we were given devastating news. What had been a dream come true - expecting our first baby, a little boy - quickly transformed into every parent's nightmare.

I can still remember the anxiety building in my chest as the perinatologist went over and over my growing belly with the ultrasound machine.  We had just been told we were having a little boy. 

We'd picked out his name - we'd starting planning his nursery. Every thing had seemed perfect. Even his little ultrasound looked as if he was smiling!

 I can still feel the heart-stopping shock as he uttered the words "I need to speak with you in my office. I'm afraid this is very bad news...for baby." I can still feel the lump in my throat willing the tears away...trying to balance the questions and the pain as he told us not only that our baby had a defect known as "spina bifida" - but went on to say that this is was one of the most severe cases he had ever seen. He was awkwardly stunned at the level of our unborn baby's opening - which the ultrasound was showing at the base of his skull - highly unusual for a neurotube defect. I sat numbly, silently, gripping my husbands hand as I tried to process the words "incompatible with life", "termination", "stop the heartbeat" etc. I will never, ever forget the break in my heart that day. I felt as if I'd been ripped in two...and would never be whole again. As we left, collapsed into my husband and sobbed in a way I have never done before nor since. I felt as if the baby I had prayed for, and fallen in love with was being ripped away from me.

The next day was our follow up appointment - a 2nd opinion of sorts - at another perinatologist office. What happened that day was the first of several miracles we were to be given. The ultrasound that morning showed that while our sweet baby did indeed have spina bifida - the lesion was not where originally thought - but much farther down in the lower lumbar region. I can remember stuttering "but...what?...yesterday...the ultrasound...the doctor said..." and I can still hear this doctor repeating the statement "your baby is going to live...he may not walk...he will most likely have to have a shunt, his bowel and bladder will be permanently affected..." etc. several times. But all we heard is "your baby is going to live." Finally, after taking several deep breaths, we left the office in a state of shock, giving thanks to God and feeling mix of relief and pure joy and amazement.

Our joy reached new heights when on May 26, 2009 - our little miracle baby was born. 7lbs 1oz and 19" of pure sweetness.

Although there have been challenges, heartaches, and struggles along the way - every day from the day he was born I have fallen more and more in love with my angel boy. He is without a doubt the most amazing gift God has me given us - our sweetest earthly blessing - our sunshine through the rain (which you know of a recipe for rainbows.) He never ceases to make me smile, teach me to trust, or help me count my blessings. When people hear the word "disability" or picture life raising a child with special needs - I think they picture giving something up - hard work and sacrifice - missing out. And while there has been those things...they are far outweighed by what we have gained, what we have enjoyed, what we have been blessed with. He has enriched our lives so much that I know I am forever indebted to him, and the One who gave him to us.

I still have days of worry - days when I fear what lies ahead. There are still times when I hate SB and would give anything to be able to take the burdens it brings off my son's shoulders. There are times I still cry. Moments I will hide in my room and pray for strength. I still wonder "what if." I still fear things I can't control. I think we all have those days.

But more than those days, there are the days when I thank God for using this journey with SB for His glory. I thank Him for the lessons it has taught us, the faith it has grown in us, the families it has brought to us, the love...strength...perspective...and hope it has manifested in us. 

Sure, without SB we would probably have never known about hydrocephalus, tethered cord or arnold chairi. We would never have had to learn how to cath a newborn or watch for signs of shunt malfuctions. We would probably not have to worry as much about whether our son will be able to potty train, play sports, or succeed in school. We would probably still think it was called "spinal bifida"....(Oh yes. That took me a while to get that straight. ;) ) Without SB...Jet would not be the amazing little warrior he is today. I would not be the mommy I am today. We would not be the family we are today.

And that is something I cannot, will not, ever regret. It's not something I would have chosen for our family - it was not part of our plans. But I can say with 100% certainty... I wouldn't change it for the world.

So to my fellow parents, those waiting to start this journey and those who have just begun - don't lose heart. Our journey's are all a little different - but our fears, our worries, our blessings are at the heart, the same. So keep taking it one day, one step at a time. It may be dark right now, but your sunshine through the rain is coming...

And I do believe...I see rainbows in your future."


  1. Just beautiful!! Wow. Tears in my eyes!

  2. This is an incredibly beautiful post. Thank you for sharing.

  3. Very beautiful and touching post. What an amazing little son you have! What a gift from God!

    While we do not have children with SB, we do have children with special needs. We are the parents of one home-grown son, now 26, who started life as a "failure to thrive" child and is now strong and courageous, in great part because of all of his struggles early in life. Then God blessed us with three more children - this time from China - all from the "Special Needs" listing. Special needs - special indeed! :)

    Thank you for sharing this story. It has blessed my day.


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