Questions without answers
How long will they continue to do their job? This is the thought that went through my mind today as Eli and I walked to the hospital for his infusion of meds. As I watched him balance himself walking along the curb and putting one foot in front of the other I got lost in the moment …amazed at something that is typically taken for granted …the simple fact that his legs were working just as they should. So, how long will these legs continue to amaze me? I don’t know but I’m sure it won’t be the last time I ask.
“It’s amazing how he compensates for what he is lacking” I remember hearing these words more than once about Eli. First from his neurologist who diagnosed him (pre diagnosis) then from some of the great PT people at Thera Play. So often I would watch him and it’s almost like I could see through him…I could see him working so hard to do something that came so easy and natural to so many others. I remember as he was being evaluated he would try so hard to do the best he possibly could. Poor kid always thought he had to “score” good on these tests to make everyone happy. I look forward to the day when he realizes what a fighter he is.
This disease takes so much from these kids…my heart is heavy for all of the children who do not have this opportunity that we have gotten in Milan. I’m so sorry to all of the parents who have to watch their children slowly lose their abilities while they sit back helpless yet loving them through it all. I know transplant has progressed this disease in every transplant patient in some form or fashion. I’d be naive to think that Eli will come out of this unscathed so there are moments that I try to prepare for the possibilities that could lie ahead.
Not only do I question the ability of his little legs but as I listen to him repeat lines from Parental Guidance over and over….giggling about Farty Decker and singing the famous bathroom song,I can’t help but almost not hear what he is saying because I am just focused on the sound of his precious voice. How soft and quietly he speaks (unless of course he is yelling at one of us;) how he loves to sing…especially when no one is paying attention to him… Neil Diamond Holly Holy is his absolute favorite right now. It is a gift how I have learned to appreciate and really listen to his voice. I pray there is never a day that I don’t hear it!
As we are winding up our stay here in Milan there are so many things I am in awe of yet I can’t really put words to my feelings quite yet. The emotions are still so raw at times and there is still a lot of anger and sadness mixed in with all the good. I have had some days where I just did not know how I was going to get to the next day…nights where I would cry myself to sleep only to wake up, look in the mirror…see my puffy eyes and barely recognize who that person was. Where had I gone?…where had my life gone?…I don’t even know who I am some days. Most importantly to me is where is my GOD??? I can honestly say I really thought I would try to get closer to God while I was here…especially in the hospital. Unfortunately it was not to be. Yet I know it’s not him… It’s me pushing him away. Pushing …because once I stop pushing then acceptance will be the next step and I don’t know if I am ready for all the changes that will come along with that acceptance.
Psalm 34:18
The Lord is close to the broken-hearted and saves those who are crushed in spirit. (Thanks Jenn)
Fear Not 
Becky…I pray, that one day, far from now, you will add the voice of Eli giving a speech at his wedding, or calling the name of his child to all of the other beautiful memories you have stored up of his sweet voice already…I pray those legs carry him to your 50th wedding anniversary & Ella’s college graduation and all that is to come after that…and I pray, that on the day you come to acceptance is also a day that you feel confident that the cells have done what they should do so that day is hopeful and full of love & life. Love Prayers Hope & Positive Visions…get home soon! 💜
Becky I don’t even know you but I can tell you who you are…your an amazing mom struggling to keep your children well and trying to make sense of it all. Never doubt that God is not with you, He is always with us. But I do understand your feelings. The nights are for tears that allow us to be human, to acknowledge our fears and to give us strength to face tomorrow. Although your life might not be the same, cherish the things that bring a smile to your face and record those songs. Somehow I missed the Farty Decker song…lol Those are the moments that mean so very much and do get you through the next day. Love God as He loves us…unconditionally. YOU dear lady are AMAZING!!! Love, Hugs and Prayers, Joan