Okay, so ever since Rylan has gotten his braces, I have known that a BIG surgery is looming. We are prepping him for a bone graph. The doctors are suppose to harvest bone from his hip and place it in his jaw line / palate in order to address his bi-lateral clefting. I have known this day was coming.
Lance and I fear that harvesting bone from his hip will halt our son's ability to play sports. Other than swimming (maybe). Not that I think my son will be a professional sports player, but I cannot imagine taking away his excitement of playing sports so early in life.
For gods sake he will only be 8 in March. If we harvest bone from his hip, football will be out of the questions, baseball, soccer etc. We have met several young teenage boys who are cleft and have had the bone graph, they indicate the stopped playing sports, and further they indicate that even the whether change seems bothersome at times. Cold damp nights, rain - all make them sore, and achy.
These stories make my heart race with fear, make my mind travel 1000 times faster than it should. I have visions of running away in the middle of the night with my son, so we don't have to show up for our scheduled surgery.
We will have our BIG surgery this coming summer. Yeap, that soon. I could puke just thinking about it. I have been praying for some other alternative, something else. I do know that technology has advances, and some doctors are trying a protein injection, rather than a bone graph. But our doctor is hesitant due to the fact that there is not enough research to really know the outcome of such an approach. I value our doctors opinion, and trust his judgement, so that is off the table, even as appealing as it may sound.
Lance and I look at each other while laying in bed, fretting over the fact that we may have to kill our son's dreams of being on an athletic team so early in life. It is heart wrenching, takes my breath away, and makes me tremble with fear. I have been praying for a sign, some other answer...
I got it the other day. I keep in touch with a wonderful lady, who's son is also cleft. She is military wife, her husband is a special opt's Marine. Our children are the same age, and she too has been looking for other options. She emailed me that she has meet a one young person who used a cadaver bone.
Praise god, that is it...that is my answer.
Is it that easy....perhaps not. I do know that we can be 100% sure that my son's own bone will make it a successful surgery, and that a cadaver bone may not. Is it worth the risk?
um. Crossroads #2.
What if the cadaver bone does not take, then he will be subject to another major surgery. In his young life he has had 3 major surgeries and 3 out-patient surgeries. God love him for being such a trooper, for not understanding it all fully, but trusting us 100%. Trusting his doctors, and knowing that even though he wakes up in pain and disoriented, it all seems to be worth it in the end.
Is a cadaver bone worth the risk.
Today my answer is yes.
This will not be the end of his surgeries, it continues to be just the tip of the iceberg.
Taking this journey with my son has been interesting, I have learned so much.
It has been terrifying, he is so young to have so much happen. And it has been inspirational - he truly is my hero.
Keep us in your prayers - it may not be until summer, but it already has us on pins and needles.
I keep this photo up in our home, along with his other photo's. His clefting was extreme at birth, as noted in the photo. He has overcome the odds, keeps breaking the doctor's notions of what he can and cannot do........looking at him today, you would never know how far he has come.
*There are days when I feel as if I am not strong enough to do this...to be his mother, to be a vision of strength and support, when inside I am dying with fear. Behind closed doors, and in the dark, tears of fear stream down my face, along with the prays and hope that it will all be okay.
I am child of god, but I am only human. I trust that he will keep us safe, and watch over us. As I attend church this weekend, I was looking for support on another issue this was the theme ' keep faith in god. your trails and tribulations will make your faith stronger. Patients and perseverance - with our limited view. God has a plan, even if we don't get it.' My faith does not waiver, but it is hard to trust in the unknown. I am trying....and perhaps failing. My heart is heavy these days.