From the day George was conceived, I knew he was my gift from God. Hugh and I would joke about how he was our Christmas baby. We had been trying to have a baby for several months at that point and were getting very disappointed and heartbroken as each month went by and there were no positive results. Finally, on Christmas day God answered our prayers by blessing us with the gift of one of his very special children.
Many people have said they don’t know how we are getting through this, but I know God is carrying us through this very difficult time. Had the Lord asked me to be George’s mommy before giving him to us and told me that I would only have him for a short time, I still would have told him that I would gladly take him. He was such a loved little boy from the moment he took his first breath. There were even moments I would tell my mom that I thought there was something as too much love, when Joshua would hug and kiss and squeeze him as tight as he could! Despite everything, George was the happiest little baby anyone could have ever known. I will never forget his very first smile where he just melted my heart. That same very smile lit up the room the moment anyone would walk in and he caught their gaze in his beautiful big blue eyes.
George and I always had this special connection from the very beginning; it was just very different than anything I could ever explain. I would always try and explain that it was as if he was my kindred spirit. He had the softest cry, the softest skin, and the big blue eyes that we both shared. At night I would place him on my chest and walk around with him singing a song that had always touched my heart. (I sang this to the melody) For you must become as a little child as a little child come unto him, for you must become as a little child and share in the kingdom of God. No matter how fussy he was, he would calm down the moment that I did this. He knew my heart as well as I knew his.
From the beginning George did have some slight issues. Reflux was an absolute nightmare for him. He had trouble tolerating regular baby formula and also special formula. Despite the fact that doctors would tell me he was “a perfectly healthy baby” I knew in my heart differently. I knew that George had the same genetic disease that his big brothers have. Mitochondrial disease is a silent killer that has been linked to so many more common diseases such as Autism, Parkinson’s, Alzheimer’s, Systemic Lupus, Diabetes, and so many other well known diseases. Research is in its infancy and does not have enough awareness or funding to be able to even be diagnosed. For anyone who may be interested there is literature about the disease here today, I beg you to take it with you and spread the word. Many people have heard me advocate about this disease and silently would say “there she goes again” but I always remember telling them at the end of my conversation; there is no way to look at a person and tell they have Mito. The person could look totally fine one minute and be gone the next. George was living and dying proof of that.
Doctors are just not aware of this and have no idea what they are looking for in terms of diagnosis. If they even know about the disease their thoughts are severe patients in wheelchairs with traches and feeding tubes that you can look at and tell there is something wrong. So many people do not know they have it and many of the death’s that do not have answers are more than likely from Mitochondrial Disease, it is undetectable via autopsy! I ask you today to please become an advocate for your own health and that of your child. If you know something is wrong, keep seeking an answer. Ask for copies of your labs and medical records and question even slight abnormalities. Do not let people make you feel as if you are crazy. I very wise man, who diagnosed George’s big brother Joshua and has a child with this disease himself, once told me “trust your instinct, “A mother’s instinct is 99.999% always right!”
God has sent us an arm to help us get through this, as it is proven by all who have come today and showed their support in some way. I know every passing day I will yearn to hold my baby and my heart will remain forever yearning to be with him. George was such a wonderful baby and spirit that God yearned to hold him as much as I do and has called him home. I have always believed that there is a purpose to each of our lives and everything that happens is for a reason. As I was trying to breathe life into my baby I kept praying to god to give him back to me and yet in the back of my mind the words Christ said in the garden the night before he died kept playing in my mind. “Please let this cup pass from me, but thy will be done” In the hospital as Hugh held our little boy after he passed, he asked “why us”, and I said “why not us?” I remember the first days crying and wondering “why God why” as Jesus did on the cross. I wondered what I had done so wrong in my life that I deserved this, why had he kept testing my faith over and over again. My thoughts went to Job and if he could do it, I could do it. Each of those horrible things that had happened before were preparing me for this day. Had I been the person I was then, I never would have survived this and be able to stand here in front of you with the strength that I have.
George’s early departure from this earth has taught many of us to cherish each day as if it were our very last because it very well could be, just that. I will see him again in heaven and the day that I leave this earth myself, I know I will have a more glorious reunion because he is there. My job here is not yet done. We have been blessed with such wonderful children and had we been asked to choose, God knew we would never have been able to do that. George is there with my grandparents and Hugh’s father. I remember being so sad when I found out I was pregnant with him because I knew he would never have an Oma blankie. I had found a picture of my grandmother holding Richard as a baby and sobbing because George would never be able to sit on her knee like that and know the wonderful woman that she was and she would not be able to experience that joy of holding him for the first time and telling me about his perfect ears. The irony in all of this is that when I think about what he is doing in heaven, all I can picture is him sitting on her lap doing just that. I picture both my grandfather and Hugh’s dad bragging about how great he is to all of those who have gone before us. Most of all I can see my grandfathers big wide open mouth belly laugh as George just brings him so much love and happiness. I remember saying this at our very first fundraiser for Joshua…”We are all on loan from God.” The only difference is that none of us know when that loan will expire. “ Tell those that you love how much they mean to you and don’t worry about the dishes in the sink or the clothes piling up on the floor as much because it will always be there, your loved ones won’t. I know our “Georgie Boy or Poogie Woogie” is looking down on us today smiling and here celebrating his life with us as he awaits the day we join him in God’s Kingdom.
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