My reason

I’ve been reminded this week about why I write. Reminded about why I’m so transparent about our journey and especially my feelings.

I don’t write to get followers. I don’t write for more “likes” on my page. I don’t write for anyone to ever feel sorry for us and I definitely don’t write to get a pat on the back.

One of the reasons I write is because I believe Christopher’s story should be told. I know I’m a bit biased but I believe he’s an extraordinary little human. He has overcome so much in his short life and I know he’ll continue to amaze us with his future. He’s rare and unique, just like your children. He’s just rare in medical terminology, but he’s also unique for other reasons. He’s so bright and silly, he’s determined and strong, and yet he’s complex and fragile. He’s a teacher and a life changer. He is teaching so many people out there to never give up and just because you have a setback doesn’t mean you should stop. There has been disappointment, fear, and doubt but there has also been celebration and amazement.

He is fearfully and wonderfully made and his story will be told.

The other reason I write may be the greatest reason of all. I write because my words virtually hug other parents wearing the same shoes. Different sizes, but same shoes. I write because there are others living like we are, living a life of doubt, anxiety, determination, courage, and questions. Living a life full of heartache and celebrations. We are all struggling but some can’t share it or have a hard time expressing it. We are not alone, and if another person feels less lonely by reading my words then I have succeeded. I spoke to another mom on the phone this week for the first time and she said she felt like she already knew me and as though our children are bonded…how wonderful is that? I receive messages from complete strangers who thank me for saying the things they only wish they could say out loud.

Of course I’m writing to tell our story, but when I write I’m also telling the story of others. I’m sharing what it’s like to parent a child with a complex medical condition. I’ve watched with tears in my eyes 6 month old children surpass my child in abilities and even weight. I’ve watched other children with the same condition reach milestones that it took years to accomplish. I’ve cried myself to sleep wondering if we are doing enough. I’ve jumped for joy at a purposeful nod. I’ve done all this…but “they” have too; the other parents who can’t say it out loud. I’m not the only one.

So, I’m writing for them too. I’m writing so no one feels alone on this journey. I’m writing to give virtual hugs.