July 12, 2014

A Brother From Another Mother

Meet our CDG brother from another mother.  Don't worry - he is from another father too. Different mother, different father.  He is Bridger's brother in the same rare diagnosis of Congenital Disorder of Glycosylation type 1a.

Don't you just want to squeeze him?  Bridger did too.

Do you ever wish you could step out of your body and watch your life continue as you look on and see what it looks like from the outside?

I just did.

On Sunday we went to church with a wonderful family we connected with on the CDG Facebook Group. They have 3 children, 2 of whom have CDG.  If there was ever anyone that you have never met but should have absolute respect and admiration for, it is this sweet family.  They are amazing and humble, beautiful and kind.  How lucky are we to connect with them?!

We sat behind them at church and it was like watching my life.  To get Bridger through church in years past, we have relied on the miracle of flashcards.  An exciting set of flashcards would buy us 20 minutes of quiet time with him.  Over time, we have purchased every set of flashcards ever created.  Hologram flashcards, scratch and sniff ones, life the flap, touch and feel - you name it - we've got ém.  When their mom started pulling flashcards for their daughter with CDG out of her bag, I nearly choked.  

Bridger's current obsession is stickers and sticker books.  On our trek westward, we had to stop at every interstate-side Walmart across the Midwest buying new sticker books to keep Bridger content.  After the mom had pulled out some flashcards, she followed by pulling sticker book after sticker book to placate her daughter.  Double WoW! Our kids that share the same diagnosis share the same nuances and characteristics right down to flashcards and sticker books.

Bridger also has very obsession tendencies.  So does her daughter.  Her daughter wanted to pass back to us a sticker paper she had created and she was very obsessed with the thought that Bridger should have this paper.  Bridger was equally obsessive over the thought that she should have the paper.  And so the battle of the obsessions began with her wanting to pass it to Bridger and Bridger pushing the paper back her direction, each getting more frustrated when the paper came back to them.  As irreverent as it was, I was cracking up.

It was so wonderful to watch this family.  

I also feel like a small circus when we are out. But watching them -- they looked beautiful. You can see the love oozing.  It gave me confidence that maybe we look that same way too.

It was beautiful to see these three special kiddos together.  You want to feel the most overwhelming and powerful feeling?  Come kneel in the company of these three.

What was even more fun then watching these brothers from another mother was watching the sisters from another mister. . .

. . . the sisters that share the common bond of having a sibling with CDG.  I can only imagine that the connection and bond that I feel with other mothers of children with disabilities, particular those of identical diagnoses, is felt ten-fold for the siblings that share this same connection.  They know what it is like to have your place setting at dinner swept off the table in one flash of an arm from your CDG sibling.  They know what it is like to not be able to go places or not have friends over because of the restrictions to life because of your sibling.  They know what it feels like to be stared at the entire time you are in a mall because of the sounds your sibling makes.  They understand each other's worlds more than any other girl could.

And then there is this guy,

He has more love in his heart than any boy I know and he has more than enough love to share with two little boys with CDG.

In the moment that these children met, I couldn't find the words to describe the beauty of what I was witnessing.  But as I look at these pictures now I thought of the word to sum it up -  Empathy.  It is commonly said that empathy is seeing with the eyes of another, hearing with the ears of another and feeling with the heart of another.  These sweet children - both those that were looking at their fellow friend with CDG and those that were looking at their friend who has a CDG sibling were exchanging unspoken and heart felt empathy.

Roger Ebert said that empathy is the most essential quality of civilization.  I have to agree.  And these eight kiddos have everything that is essential to life.