There was an eerie silence as my husband and daughter drove down the driveway today. It was the kind of eerie and awkward silence that you have at a funeral. No one really wants to talk and when they do its really just a space filler. In that moment words are flat.
This is not new territory for our family. We have had many children pull out of the driveway headed to surgery. Our family has many children with special needs, and we have also been blessed to know many other families who have the same. So, in some sense, it was our familiarity that caused the silence.
The view out the window is just a piece of the sky.
There’s no sugar coating here, no rounding of corners, no white lies to falsely comfort your emotions. We all know the hard truths of life. We know both the good and bad of surgery. We all fully understand the risks involved, and some of our children carry higher risks than others. Jamie is one of them, and the whole house knows it.
So today begins another chapter in our epic journey towards BOLD faith.
We trust that there is more to this than we can see.
We trust in advance that God is STILL sovereign. That each and every moment of this journey is divinely appointed to fill in the gaps of our faith and life. To draw us closer, even if it’s not the way we would choose, to the mighty love of God.
Jamie is headed in for scoliosis surgery. Her scoliosis has a double S curve. One that runs like a snake side to side, causing her to slump to the left. The other has inverted her lumbar and shoulder blades in the opposite curve than what they should be.
Jamie was born with Spina Bifida. At birth she had her spina bifida closure surgery. This surgery closed a large opening in her spinal cord, as it had herniated out of her flesh in utero. When they do this, the butterfly open the back bones to have access to the spinal cord. Over the years, as her body healed and grew in age, so her scar tissue grew as well.
One year ago, when she was originally scheduled for this surgery, we went in for pre-op testing only to discover a vast number of challenges ahead. The doctors found that her scar tissue from her surgery at birth had fused directly to her skin. That means her spinal cord was attached to her skin. Separating it is a tricky and delicate surgery so as to not re-injure her spinal cord. During that pre-op testing we also discovered that Jamie has two genetic heart conditions.
When you add this all up on top of her Fetal Alcohol exposure, Attachment issues, shunt, partially paralyzed vocal chords, very weak lungs, and degenerative disability, well….. the mountain to climb just gets bigger.
But why the eerie silence in our home?
We all know that Jamie has ONE more challenge ahead. The will to live and fight.
This we see clearly.
Before I explain more- let me say this: We have hesitated for YEARS to share the hard truths of our children. For many reasons, we have NOT talked to the general public about our kids trials. It is so very easy to judge others from the outside. To look and think- Oh, well, I would do this and that. Disabilities are a tricky world, attachment disorder is a giant construction zone, and behavior issues are hard to understand from the outside. So we have kept quiet for years. Now. We have chosen to BOLDLY open the doors for the HOPE that it will ENCOURAGE and STRENGTHEN other families out there with the same secret trials.
When you start out life as a foster child with countless doctor appointments and surgeries. Then you transition your life to that of an adopted child, with still yet countless appointments, therapy sessions, and surgeries. The disability becomes your identity. We’ve spent her whole life pouring into her, trying with all our might to get her to WANT more for her life. You can love your child 1,000 ways to the sun and back, but they still must choose. That is just it- she doesn’t want it. And you can’t MAKE someone want something. You can try to make them hunger for it, but in the end, they must choose it.
They, as a child with a broken heart, have a limited view on life, and we must lift them up to see more clearly.
Jamie has come to cling to her disability in an unhealthy way. She loves the land of doctors and special treatment more than anything. Unfortunately, this means she does NOT love to be well. She would rather be sick than well. THAT RIGHT THERE is the scary truth that everyone in this house knows.
We all know that there is a very strong chance she will NOT come home, or if she does, she will NOT be the same.
This whole house knows that out of all the kids here, Jamie has the least amount of fight in her. Oh yes, she is stubborn. Oh yes, she is strong. Of yes, she has come out of every past surgery (leg surgery, shunt surgery, eye surgery, more shunt surgery) but every time she comes back with LESS OF HERSELF and MORE of her disability. It’s degenerative in a way.
This surgery is a doozy. They will first attempt to separate the spinal cord form the skin, then work to straighten the back bone. They will add in the straitening rods, then wrap the weak bone in a fine mesh and stuff it full of cadaver bone fragments and marrow. The end goal, after 10-12 hours of surgery, is a concrete pillar of a back bone.
So we sit and wait on our side of the window. We wait for God to enlarge our view.
Please pray above all else for Jamie to have a will to live and a will to fight against the odds.
Please pray that her already weak vocal cord survives surgery and she doesn’t end up with a trech.
Please pray her weak lungs, that already don’t work at full capacity, will not collapse.
Please pray that her heart stays strong and she doesn’t end up with a pace maker.
Please pray that her spinal cord stays safe in the detachment process.
Please pray for Sean as he will live at the hospital with her in Houston for the next 3 weeks to a month.
We pray to continually open our eyes to see what He is doing. The thing that is greater than what we see.
Please do not say “Oh I’m so sorry”, while we know what you mean…. We would like to boldly share with you that we are NOT sorry. YES, it is hard, very hard, BUT to say you are sorry means- in part- that you wish it were different. We do NOT wish it was different. (Don’t send hate mail over that comment) We TRUST that God does NOT make mistakes. Yes, it is hard and we don’t always enjoy the hard things. But we trust the God chooses wisely, even when we don’t understand it at first. We know that through this all we will draw closer to God- and that is where we would always rather be.
In the end, if her back is straight, well that’s good…. But what would be great would be her WANTING to live and learning to LOVE her LIFE for WHO God made her to be and NOT her disability.
This, my friends, is just the beginning of the next chapter in our BOLD faith journey.
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