The Spina Bifida Journey

Love this!!! I'd love to share this post from Summer Hinton. I couldn't have said it better myself. I love finding others who are on the same life-long journey of Spina Bifida, like our family. I remember our ultrasound day in September 2015, when we found out our little Oliver has Myelomeningocele Spina Bifida, it's a day I will never forget. A day I just bawled. Wish I knew then what I know now. I love my little Oliver!

"On this day last year, no one told me how my life would be more beautiful when I had my baby. They didn’t tell me that his smile would make the worst moment, the best. They didn’t tell me how time could stand still, soaking in the moments. No one told me that I would wake up beside the happiest baby alive. No one told me the joys that I would have with him. They didn’t tell me how my chest would burst with pride when he figured out a new skill. No one told me how willing I would be to do anything for my child—anything he ever needed. No one said he’d light up the room. They didn't say his eyes would be the biggest, brightest, twinkling brown you've ever seen. They didn't tell me he would look just like me. No one said that I would laugh so hard I would cry when I heard HIM laugh. No one told me how much fun playing with plastic animals at bath time would be. They didn’t tell me how 8 months could seem like yesterday. No one said I would need him like I needed my next breath. No one told me what a precious soul he would have. No one told me I wouldn’t care if he could walk, just as long as he was mine. No one told me he would complete me. No one told me that I would grow closer to my husband. They didn’t tell me my heart would beat faster when I saw my husband with him. No one told me I would grow closer to God. No one told me I would be willing to lay down my life for him without a second thought. No one told me how in love with motherhood I would be. They didn’t tell me he would be the best thing that ever happened to me. No one told me all the happy moments I would have with tear-filled eyes. No one said that 3 am would be one of the sweetest hours in the day. They didn't tell me how "normal" my life would be. They didn’t tell me that life would go on. They didn’t tell me to take the next breath. No one told me any of those things...

On this day last year, they just gave me facts. Cold. Hard. Facts. An opening in the spine. The spine didn’t close. Spina Bifida. Myelomeningocele. The most severe form. Paralysis of the lower extremities. Bowel issues. Bladder issues. Possible hydrocephalus. Nerve damage that can’t be repaired. A possibility of brain surgery days after being born. A surgery to repair his back the day he’s born. Time in the NICU. Learning disabilities. No movement. Wheelchair. Braces. Therapy. Hospital stays. Clubbed Feet. An appointment to see a specialist. Permanent damage. Continue the pregnancy. Abort the pregnancy. Fetal surgery. Post pregnancy closure. Bed rest. LeBonheur. Philadelphia. Surgery while he's in your belly. There's major, life-threatening risks. If you go into labor, whatever you do, make it to Memphis. They told me these things. 

February 4th will be a day I will always remember. I can still feel it. Not like I felt it that day, but the feelings are still fresh. I had only planned to take half a day at work—I would be back right after lunch. Little did I know I would only work about 8 more days. This day last year was the hardest day of my life thus far. Hands down. I prayed. I prayed a lot. It was about the only thing I could do. That, and cry. I often look back and give a little chuckle. We were in a whirlwind. We didn’t know which way was up. If only I could go back and talk to myself and tell me what I know now. Better yet, I wish I could have just fast-forwarded life about 8 months and see us now. See him now. But, I am thankful for the struggle we had. It brought us to where we are today. It makes us more thankful. It makes us take joy in the small things. It makes life more real. It showed us that we’re not in control of our lives. Do I wish Paxton didn’t have spina bifida? Sure I do. What mother wouldn’t? Would I trade him for anything in this world? Not a chance. This guy, this guy right here, was our “bad news.” Praising God for "bad news," news that's not our will, not what we want, because this is what's on the other side of that news. Something far greater than what was in our plans. You may not understand it, or you may think there's no way this can be good, but in time you will see.

For everything there is a season, and a time for every matter under heaven:

a time to be born, and a time to die;
a time to plant, and a time to pluck up what is planted;
a time to kill, and a time to heal;
a time to break down, and a time to build up;
a time to weep, and a time to laugh;
a time to mourn, and a time to dance;
a time to cast away stones, and a time to gather stones together;
a time to embrace, and a time to refrain from embracing;
a time to seek, and a time to lose;
a time to keep, and a time to cast away;
a time to tear, and a time to sew;
a time to keep silence, and a time to speak;
a time to love, and a time to hate;
a time for war, and a time for peace.

Ecclesiastes 3:1-8

And we know that for those who love God all things work together for good, for those who are called according to his purpose.

Romans 8:28"

-Summer Bree Hinton