Kent and I have been reading medical journals and publications, trying to find out all that we can about Menke's Disease. As you can imagine, these articles are to the point, factual and not very descriptive as to what the day-to-day life will be for a parent that has a child with Menke's disease. We want to know what to expect for Cannon as he lives with this condition. Last night, Kent and I were looking online when we happened to see a Menke's Facebook page. What?! There were some Menke's mommies on there and I requested a few friendships. I have already been accepted by a handful of them. I have learned stories of other boys just as amazing as my little Cannon anywhere from Canada to Knoxville to the UK. A single mom, a 17 year-old-mom, a mom with other children, a mom with her Menke's son as her only child. We are all different, but we have a common bond. I am happy to have stumbled across these people and I hope to continue to learn and gain courage from their examples . Some still are fighting their battles while others have lost theirs. I am already buoyed up, knowing that I am not alone. As I read what others are facing today, I am thankful that Cannon is home and healthy. My heart goes out to all the little boys with Menkes that are in the hospital tonight. Kent and I felt that there were no other people with a child like ours, but now we know there are lots of strong little boys that are fighting every day for those people that love them. I am glad that I have such an amazing support system including a loving husband, along with dear friends and family members. I am thankful for the guidance we are having as we take this journey with our little bubba.
2 comments:
Hi! I'm Tamara Murdoch and found your blog via our Facebook group.
Reading your journey to Cannon's diagnosis brought back a lot of memories and I shed a few tears. He is a gorgeous little boy.
My son Miles has Menkes too. He is now 17 months old and was diagnosed at 7 months of age too. He, like Cannon has never had a seizure so take heart that it is not a given that Cannon will develop them.
What I have learnt over the past 10 months is that nothing is a given with these boys. Time and time again they defy the odds and baffle medical 'experts'. God sent them to us for a reason and Cannon will immensely bless you during his time on earth.
There are so many amazing families in our group who are only too happy to open up and share their lives and experiences. Nothing is ever too silly a question to ask. Someone will always try to answer, no matter the time of day or night.
Take care,
The Murdochs (Tamara, Jeremy, Georgia, Niamh, Miles and Elspeth)
Oh Natalie.. what a comforting post. So thankful the lord is providing, special angels in your life to guide you and walk with you through this journey. Big Hugs girl!
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