Undiagnosed, not invisible


Today is Undiagnosed Children's Awareness Day.

http://www.undiagnosed.org.uk/13th-april-2013-undiagnosed-childrens-awareness-day


Some people wonder why we still search for a diagnosis. Its really about the desire that doesn't go away, for me anyway, of wanting to know if I'm doing everything i can, and if something is waiting in the wings ready to pull the rug out from underneath us. And this year I cant help but think about another special needs blogging mom Kate Gallagher Leong whose son  Gavin had a fever early this week and is now in hospital waiting to gain his angel wings. Ive been following their story since Ryan was an itty bitty baby, as Gavin seemed so similar to Ryan and very close in age. Being undiagnosed also brings with it the issue of not having anywhere to belong, no cause to champion, no fight to rage against, along with other similar parents. Yes, we belong to a huge "undiagnosed" community but within that community the range of symptoms is so very wide and varied. I guess I fell in love with Gavin and Kate's family as they had many of the same challenges we did with Ryan, the boys timing of their milestones were also very close. When I saw Gavin walking for the first time just a few short weeks ago I knew when he was ready Ryan would too, of course he would, Gavin had! That little man gave me such hope and inspiration and Kate's writing brought me such strength, to know someone just a few miles away was going though the same peaks and valleys. I loved checking in on her daily updates to see how both her boys were doing. She inspired me to do more for Ryan, to seek out different treatments, and to keep an open mind when it comes to medical stuff.  I really cant believe Gavin is gone, and I'm so heart broken for the Leong family to have lost their superhero. This week has shown us once again that life is very fragile and can turn on a dime, especially when you parent kids that drs have yet to figure out.
We are praying for Gavin today, God speed little man, your Pop, sister and twin are waiting to give you a hero's welcome.

image from Chasing Rainbows

Comments

Kerri Ames said…
Not invisible...I love this post. Thank you.
Hi Mary Clair,
Came upon your blog today via the link for Gavin, Thank you for thinking of me when you thought of something that Kate could cherish, and thank you for writing and linking about Gavin. Your little guy is beautiful! God Bless

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