Coming home was hard, I won't lie. It was a little bit of all the things crashing down on me. I cried and couldn't stop crying as I pushed Abe on his swing in the backyard.
I was sad. Sad that things here aren't the same for us and haven't been since the day Abe came into this world. Sad for the family I can't give him. Sad for friends we have lost along the way. Sad for his isolation and our inability to be social and engaged in the things we would like to be. Sad for how things are for him... That literally everything is a fight and struggle. And mostly, sad that the family we fell in love with are half a country away.
It is overwhelming going to a rare disease summit only to realize that the country's biggest genome researchers have never heard of your child's medical condition. It is overwhelming to come back home to therapies, IEPs and endless Doctor's appointments with specialists and sub specialists for even more diagnoses to add.
I'm just tired. But somehow, this photo... This view.... Made me see that even when dark clouds are above and things seem gloomy, there is always a space for the sun to shine in. There is always room for light and love and endless hope.
We were given this opportunity to go to California because people (most we have never met in real life) LOVE ABE and they gave us the gift of seeing him meet his UBE2A brother and his family. We would never have been able to go without the people who have been there with us as we share his story and who do have our backs!
We have been given this journey for reasons I may never understand. The people by our sides aren't the ones we thought would be there but that is something I must let go of.
We are on the road of the unknown with an army of people who love and adore our son and who cheer him on in every little milestone he hits or journey he takes.
So in the sadness, I must remember, he is loved. He is adored. People want to see him succeed and he has people around the globe who want nothing but the best for him. We are incredibly lucky. Thank you