When we were told that Champion had Miller Dieker Syndrome, meaning he is missing a piece of his 17th chromosome, we were sitting in his ICU hospital room as he was recovering from open heart surgery. The Dr. told us what the results of his chromosome test showed and gave us a rundown of the milestones they predicted Champion would never achieve (walk on his own, sit on his own, eat by mouth, talk, not develop beyond that of a three-month old) and an expected length of life which was heartbreakingly short.
While the Dr was talking to us, he kept looking intently at me. I think he was waiting for me to break down and start crying. However while he was talking I was listening to him… but I was also remembering a dream that I had that very morning, and instead of being completely crushed under the news we were receiving, hope was welling up in me.
I had no idea when I dreamt it that the Dr was going to come into Champion’s room that evening and let us know that Champion had Miller Dieker Syndrome and that one of the defining characteristics of the syndrome is a smooth brain, also known as lissencephaly. I had heard of that briefly in a program on disability I had watched prior to Champion’s heart surgery and in my own mind I pictured the brain being flat not round when it was described as smooth. When the doctor said that they expected to find that Champion’s brain was smooth, the dream I had that morning immediately came back to me and I knew that was not the case. We insisted that he be tested. The Doctors were sure also that they would find seizure activity as a result of him having the smooth brain and told us that they were sure that he had been having seizures all along and that we had missed it.
During his five-week hospital stay they did an EEG and found that there was no seizure activity. They did an MRI and found that he indeed did not have lissencephaly, however he did have deficient white matter which is causing his current delays. Many of the Doctors we were working with during this stay had never seen a child with Miller Dieker, (it occurs less than 1 in 100,000 live births), so they were very baffled that he was not lining up with what they knew about the syndrome.
Finding out about Champion’s diagnosis and the prognosis for his life was very challenging. In the beginning there were times when it was very hard for me to cling to hope and I did feel like I was being crushed. Even though he has not experienced many of the severe medical challenges normally associated with his diagnosis, there have been quite a few difficult, scary moments over the past three years. Helping him along with his development has been wearying at times. The care required with his g tube, multiple therapy and doctors appointments has been challenging. But there have also been so many amazing moments with him and we truly enjoy being his parents.
Prior to this I had never had such a vivid experience with a dream like the one I had before hearing Champion’s full diagnosis. I had heard of people having experiences like that, but never experienced it myself. But now that I have, the one thing that I continually go back to from that dream is the word “Hope” flowing throughout Champion’s brain.
I have clung to “Hope” throughout this journey and will continue to. “Hope” for my son’s future, “hope” for more miracles to take place, “hope” for him to be happy and full of joy, “hope” for him to have life abundantly, “hope” for him to know and experience unconditional love, and “hope” for life to be good for him.
Have you ever had a dream that brought you comfort and strength to go through a tough situation? If so, I would love to hear about it! Please share your experience in the comments.
