Excerpt from speech
I have spent the last 8 weeks contemplating how to put everything I want to say to you in 3 minutes. Frankly, it would take 10 minutes just to go through the list of doctors, diets and procedures Aiden went through during our journey. So, I thought what should be the biggest take away I would want to impart on all the families and friends of these precious children here today? Winston Churchill summed my message up well when the whole world was in utter chaos in World War 2. He told his countryman and the world “Never, Never, Never Give Up!”
If asked when our journey began I would honestly say during my pregnancy, Aiden’s perilous birth and the first two months of his life spent on antibiotics. His first significant “What in the world was that!” episode was at 5. I now believe he in fact had Scarlet Fever or something similar. That is when his clumsiness and OT issues appeared. After that it was usually a 6 to 18-month space between another bout of mysterious illness. This was upsetting enough but what was terrifying was every time he got sick Aiden’s OCD and Anxiety became worse. With each episode over those 8 years we lost more and more of this fantastically bright, loving, active child. What should have been a happy time of raising him became a nightmare. I know what it is like to have your life taken over by doctor visits and endless research. How it feels to go deeper and deeper into debt and debate should we sell the 2nd car to afford more medical treatment. How about forgoing a typical lifestyle because you are bleeding out money just to keep your kid sane. Forget trying to maintain a healthy marriage when almost all your effort is poured into keeping your child well. Worse than any of these struggles were the nights I had to sleep with my hand on top of my son’s chest so I would know that he would not get up in the middle of the night and end his nightmare by taking his life.
During Aiden’s worst episode at 13 I plumbed the depths of despair. Lonely, curled up in a ball sobbing uncontrollably I mentally shook my fist at God and told him he was not good, that he betrayed me even though I had served him since I was 10. That this was unbearable. I had lost my child completely. He was trapped inside, staring listlessly most of the time and consumed with fear. I struggled with thoughts like.. God, I cannot take this. I believed I could handle the death of his body better than the death of his mind and heart.
After this complete melt down the only thing left was a small thread of faith and hope. I am so thankful that even when we lose our grasp on God his mighty hand doesn’t let go of us. I am thankful that HOPE is the only fuel a momma who would walk to the end of the earth to see her son well needs to keep going. It propelled me through the next 18 months.
At the end of 18 months when Aiden was 15 a downright miracle happened. Insurance agreed to pay for several rounds of 2 day, high dose IVIG for Aiden. After the second round Aiden’s body was in remission and the slow but O so joyous rebuilding of his life begun at 15 years of age. So after 10 years we were able to rest.
Here is the great part of this story! I am confident no matter how long your journey has been, no matter how far you have driven to seek help, no matter how many times you have had to retrieve your child back from the darkness there is hope and there will be an end and a time of peace. Look around at all of these people. You have all these family members and friends at your side. What about yourself? You are your child’s best advocate. Forget the experts, your love and commitment is the single biggest weapon against this disease. And here is a little secret. We are not crazy like some doctors and teachers say we are, just really great parents who will not stop fighting for our kids until the battle is won. Compared to 5 years ago we have so many more doctors on our side. The Calvary has come to the state of North Carolina in the form of PRAI. Together we can go to battle. When we fall others will lift us up. When we doubt we can be assured that God is indeed sovereign and still very, very good. My hope and prayer is there will be several families next year vying for the spot to tell there story of victory like ours. And until victory comes and we feel like we cannot keep on going we can hold on to these words” Never, Never, Never Give Up!”