As a father to my precious little boy and a husband to my beautiful wife, I write with conflicting feelings. It is as though there are times when the hurt is so powerful as to leave me angry, breathless, and still. Yet, in the end, how can I accept these thoughts and emotions as the legacy of my little boy’s short life? Four months of a child’s unconditional love is worth so much more.
Over the last year we have seen and experienced more in life than we ever thought possible, from smooth sailing in the first trimester of pregnancy, to hypertension and preeclampsia with constant bed-rest, and finally the overwhelming joy of the birth of our “perfectly” healthy little boy shadowed by almost losing my wife on the birthing bed. Also, the contentment of spending time together as a family—whole, complete. Then the standard changes of lack of sleep and no personal time turning to the stresses of seeing our little boy getting to the point of not being able to hold his head up or eat on his own. After a short time at The Children’s Hospital in Denver, we discovered how perfect, yet incredibly fragile, to the absolute most minute detail, a life can be. With many tears and questions, we had to give our hearts as well as our want to control the outcome for our little Axel Charles over to the God who had given him to us. It appears that inside that lively, perfect little body lay a genetic imperfection known as Leigh’s Disease; a genetic, metabolic disorder that took place inside of the cells of our little one’s brain. This is when we were introduced to Miracles for Mito, an organization formed by parents with children with the same or other similar mitochondrial disorders.
It is also this organization which we want to help as we continue to learn to live with the loss of our precious little boy. As a way to help deal with our grief, and for Teresa to prove life to herself after the confines of bed-rest and the near loss of her life in giving birth, we are training to take part in a half marathon in Michigan on this coming August 4th. This is quite an undertaking, especially considering that I use to think that one mile was quite a distance to run. We are hoping also to help further the awareness and work of Miracles for Mito in the process. Attached to this blog is a link to their website. Included in their site is also information from some of the doctors we had contact with while Axel was at Children’s Hospital. We are looking to help this organization in any way we can to further the awareness of these disorders and how difficult they are for families.
Please consider giving to those that are taken by surprise at how their beautiful little ones are struggling and fighting for their lives, and for the love of their parents and families. These little hearts contain more bravery, courage, and strength than I can comprehend.
Thank you,
Matthew
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