March 19, 2015
Yesterday we saw Grayson’s Mito doctor to discuss whether or not we should move forward with hip reconstruction surgery. I was fully expecting Dr. K to make the decision for us- to tell me definitively yes, he needs this, or no, it’s too risky. After waiting 2 hours past our appointment time before we saw her, I was exhausted, starving, and ready for answers.
Unfortunately, we aren’t off the decision-making hook. Dr. K said she was there to give us all the medical information she could talk us through the benefits and risks, but ultimately, the decision is Ryan’s and mine. No pressure or anything.
Except, yeah, unbelievable pressure. As I said before, both options have terrible aspects to them. There are many days where I don’t even feel like a grown-up, and yet am having to make crucial medical decisions for a child who has no voice. Decisions that will significantly impact his future and either way will cause him pain.
If we do the surgery, we are looking at a few really rough months. Dr. K described orthopedic surgery as “nasty” and said, “Think about how bad you think it’s going to be. It’s going to be worse than that.” But once we make it over the hump (she estimates full recovery/back to baseline in about 6 months) he should be ok and hopefully hip pain won’t be a concern. She talked to a palliative care doctor about Grayson and asked how they manage pain in kids with chronic hip pain. Narcotics. I made a face at that word and she said she agreed with me. We already have enough trouble getting G to “connect” with us, and we both fear narcotics would steal even more of his personality. And at this point, we have every reason to believe that Grayson has years to live, and we want him as fully present as possible for however long we have with him.
This morning, I called the surgeon’s office and let them know we want to schedule the surgery. We still aren’t 100% sure this is the right decision, but I don’t think we ever will know for sure until after we do it. And it may be that there isn’t a right or wrong decision- we just have to do what we think is best for Grayson based on the information we have now.
Thank you to everyone who has prayed for us, commented, and been so supportive the past few weeks as we’ve agonized over this. We appreciate you so, so much.
Praying along side you – prayers for a supernatural peace in your decision. Prayers that you will know in your heart that you are an incredible mom, and you are doing the best you can for your little guy.
I have been thinking so much of you all over the past few weeks. Praying that you feel a “peace that surpasses all understanding.” Emily Del Rosario
I'm sure what you have decided will be the right decision! You have to go with your heart and it sounds like you have toiled over this decision a lot. There is nothing going to be easy about the surgery but like you said, if in the end he is pain free, that will be worth it. Sending hugs and prayers as you move forward with the surgery.
“Peace, peace, wonderful peace,
Coming down from the Father above!
Sweep over my spirit forever, I pray
In fathomless billows of love!”
Asking God to send you and your husband peace today. God sent Grayson to YOU because He trusted you to take care of Grayson. God trusted YOU. Now, it's your turn to trust God completely. Our children are only on loan to us. We don't like to think that, but it is true. And God will strengthen you and carry you through every second of whatever you decide with Grayson. I am praying for your family and praying for Grayson. Asking that even now God would begin to work all of this together for good for Grayson. Asking God to surround you with people who can help you keep your eyes on Jesus. God never fails, and He never makes a mistake. Sending a big hug to you today my friend. Hang in there. God isn't finished!!!
Thinking and praying for you all. You are an incredibly amazing and gifted mom. Gods got this, and I pray that you will continue to rest these decisions in the arms of Jesus, the creator of Grayson. He knit him together so perfectly, to be who he is today. I pray that you will continue to trust that God is giving you the wisdom and discernment to make the right decisions for Grayson and his future. I love what “down on the farm” said,”God isn't finished yet! May you be surrounded with peace that surpasses all understanding!
Goodness, sometimes I don't feel like a grown up either and I will look at my children and think, HOW and I responsible for you? So hard to be the parent. I am sorry that Dr. K did not make the decision for you, but of course it is yours and absolutely you are doing what you think is best, and so it is right. You take nothing lightly, and this will help him for his future, maybe short term pain, long term gain? Thinking about you all and sending love. xoxo-
May you have peace with your decision and an easier recovery than expected for Grayson. Big hugs to you lady.
Praying for your peace that passes all human understanding.
Praying that you have peace in your decision and that Grayson has as smooth a recovery from surgery as possible.
such a difficult decision as a parent – the very best you can do is make a decision taking all of this information to heart and going with your instincts. hoping that the surgery goes well and improves G's quality of life