Tonight I am tired, dejected and plain worn out. WE were on the road at 0630 for a visit to the OT and then for an iron infusion. I was dreading the infusion as I knew there weren't very many available IV sites on Kourtney's already tender, bruised arms.
Why do we put her through the torture of an iron infusion? Iron is foundational in bringing oxygen to the tissues to bring healing her blistered skin. This is the only way we can break the cycle of infection and blistering. I believe that is why her skin has done well over the last year. So as miserable it is to poke her it is critical to her wellness.
I have to be careful here, but I sometimes feel that I have to learn to pray differently. My prayer today was that the IV would go easily and it . . . didn't. Sometimes I feel that the God above doesn't listen to my prayer for my daughter. The 3rd attempt was a crap shoot by the anesthesiologist who actually had already retracted the needle to take it out, just happened to adjust the cathlon and the blood came. I guess I have to be thankful for that third attempt but REALLY GOD??? How can you let this happen, especially to someone who hurts so much already?
I then looked in Kourtney's mouth and was frozen by what I saw. The parts of her mouth that had been operated on were starting to heal to their original position. I almost threw up when I saw it. It has been only 2 days that the "thing" has been out of her mouth and already it is closing back up. I was too numb to cry, too numb, too tired to call a doctor and too frustrated to pray. Why God does this happen to my baby?
Todd had to come out and switch places with me as I had totally mixed up the days for one of my appointments - and no chance to reschedule before I leave on Monday. So when Todd did the car swap at Safeway, I told him about her mouth and told him to page Dr C. Todd called Dr. C and fortunately due to my pack rat skills I saved the "thing" from Kourtney's mouth, and fortunately for Todd he decided to toss them this morning and knew what garbage they were in! He advised us to put that back in her mouth until he could talk to one of the doctors. Ya, once again nothing new or different is easy on Kourtney and she cried her heart out, when we put the "thing" back in. We tried to explain to her it is only temporary yet it doesn't ease her broken spirit as she begged to get it out.
At what point do you say enough is enough? All these surgeries, iron infusion are not life and death, but quality of life issues. It is the tough question to ask and really I am not looking for an answer because down deep I know that this is race I must run with Kourtney. It becomes all about perseverance and endurance, not finishing and not winning. (I guess I just answered my own question) - yet it doesn't take the deep heart pain away that Todd and I both feel as parents.
Right now I am weak, and have this ache down to my toes. In a month this will become a distant memory and we will move on to new challenges. There is nothing more that the doctors could have done and I don't blame them. If God can move mountains, could He not just touch down and move Kourtney's mouth and teeth to place where they need to be?
1 comment:
I've just gotten sort of caught up reading some recent posts. You don't know me, but in a way I feel like I know you through your blog and through seeing your family around at church. I want to thank you for sharing your journey via the blog.
It is a blessing to see the love that you share with your family. I can't fathom some of the difficulties that you face but I pray that God is enough in each and every situation. That sort of sounds trite but I really mean it. He has shown Himself to be "enough" for me time and time again and I pray that for you, each of you.
Thank you for being real about the pain that you felt in church after the surgery. I know that I would not have come up to talk with you (partly b/c you don't know me and I would feel like I was interfering) but I appreciate the admonition. There will be other times and opportunities and I hope that I can take advantage of your advice and make myself open to someone else even when I may be afraid of saying the wrong thing.
At any rate - I have been very blessed each and every time I've come to your blog. Thank you.
Ang
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