I began the week with much anticipation and anxiety of what Luke's new Dr. would say, wondering if she would have the much needed answers or solutions on ways that we could get Luke's leg's bending again and help for his extreme muscle tone issues and left her office with more questions than I did answers. It was not the Dr.'s fault for the many questions and feeling of extreme desperation and despair when I left the office, it was because in Luke's case there seems to be no answers. The Dr. did explain that because of Luke's extreme damage to his brain during his near drowning accident that kids like him don't really have many answers to ways to help with the struggles they often experience with their extreme muscle tone issues. The solution she gave was continue to increase his baclofen, which is a muscle relaxant until we see him begin to really relax or until he becomes so drugged that we don't like the reactions we are seeing him have to the drug. Often kids like Luke need too much baclofen to make them relax and even though it really does help with the muscle issues, it's not good for the cognitive connections we are trying so hard to get him to make. Our other option is a baclofen pump, which is not always the best choice either, it creates a whole net set of challenges.
I left the office with a deep sadness and depression that day, I still can barely talk about it without tearing up. You see we continue to travel on this journey holding on tightly to hope and at times it seems that the hope we hold onto so tightly becomes almost impossible to hold on to. If you know me at all you must know that I don't like crying, I never have, it has always been embarrassing and non productive to me. I would rather come up with solutions and see the good side of situations rather then the impossible sides, I consider myself to be a pretty positive person most times. But this week I've felt an utter hopelessness that I haven't felt, well ever, crying more this week than I have in years. I still don't know if we should go back to this new Dr. or the Dr. Luke had before. You see the reason I was trying a new Dr. is because I didn't believe that there were no answers to Luke's tone management as his other Dr. was telling me.
On top of the stress of the difficult choices we now need to make for Luke, we have had the extreme stress of having our home on the market along with the stresses of making an offer on our new home. That's where the joy and goodness come into play for the week. The offer we made on the new home was accepted and we are going forward with hopes of living there one day. Now all we need to do is sell our home and that is huge, but not too huge for GOD.
I celebrated my birthday yesterday, it was a good day, but even on the best of days the sadness of hopelessness still lingers in the back of my mind. I'm praying that God will bring me out of the pit of hopelessness soon. I know, beyond doubt that God has a answer for Luke's muscle tone issues, I know that He could reach down His healing Hand right now and bend his knee's, I know that it's easy for Him to make a new brain with new connections, that is what I have to tell myself everyday, I have to believe it without seeing it, because that is what God desires. He desire's my trust and hope when I don't feel like it, when I can't see it and when I feel like nothing will ever change. I've had a week of crying now it's on to find some new answers, even if those answers are God's still voice in my head saying "trust ME, Sue, I've never failed you before and I'm not going to start failing you now."
Don't feel sorry for me, I don't want pity, but I would love your prayers. Prayers for Luke's legs to bend, for Luke's brain to heal, for Luke's muscle tone issues to get better, for direction in finding answers to impossible questions, for our house to sale, for God to lift off this dark cloud that I'm under, for me continue to trust Him even when I don't see any answers concerning Luke's health, for Luke's pneumonia and lung issues to heal and of course for strength to continue on the journey I never asked to go on. THANK YOU.
Love in Christ,
Luke's Mommy Suzi