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.
I did have a dream that brought me peace of mind. It was night and I was at home with my husband. All of a sudden the lights went out. We walked outside and the moon went out. I looked in the sky and seen what I thought were shooting stars but it was fire. I became very scared but my husband put his arm around me to walk back into our house. But before we did I seen the beautifulest thing… Angels. They were glowing a optic white color. They were slightly out of view but in sight for me to see them. My heart went on easy and I knew that everything would be alright.
I’ve been looking to God for confirmation that my life would be ok, that I would be alright. I felt this dream came to me just when I needed it. I don’t really remember dreams either but this one I do 🙂
That sounds like the dream brought you the comfort you were looking for right when you needed it! Thank you for sharing!
I’ve been through your blog a couple of times now and I’ve read every single post. Champion is such a sweet child, and it’s amazing to read how far he’s come. He truly is a miracle in the making. Praying for you and Champion today. God bless you!
Thank you so much for reading and also for your compliment of Champion! Thank you especially for praying for us. Blessings to you as well!
Thank you for sharing your your dream of hope. I too had a dream about my daughter who has miller dieker. We were in the hospital staying overnight as my daughter was being given an EEG . As I sat in the room with her watching her sleep I too drifted off. In my dream we were in the same room and I was sleeping in the chair just the same. But I could see a little person walking around looking at me. Although I couldnt see her face I knew it was my daughter . I would know her head shape anywhere! I woke up to tell her father immediately. We are catholic and it just so happened that this day we were in the hospital was the feast of st jude patron saint of impossible cases who we had been praying to alot!!! I hope this dream means one day she will walk. As uncertain as her future is it was a moment of hope for me .
Christina,
I am so glad you found my blog. It is always nice to meet other parents whose children have the same diagnosis. We are definitely few and far between. Thank you so much for sharing your dream of hope also! How awesome that it was that day you happened to have it on. God is definitely a God of hope! How old is your daughter and how is she doing?