How do you compress 3 years of grief, loss, gain, regression, progression, terrifying health issues and so much love that you think your heart will explode?
Today Chase left for school at 7:30. Larkin and I had breakfast. A pot of coffee for me and gram weighed, protein heavy, low carb, no sugar for her.
Larkin’s developmental therapist Judy showed up at 8:30 like usual for the past 3 years. We worked with her for an hour and said good-bye to Judy J and we LOVE our Auntie Judy.
I jumped in the shower and changed Larkin and off we went to Carle. Larkin had her regular monthly blood draws for three different doctors. She also had to have x-rays of her neck and spine. Craniovertebral instability happens in children with Down syndrome and so we have to begin annual x-rays to ensure that she does not break her neck.
Picture this. Larkin standing. Me holding her. Tech on the backside of her. I am holding her arms down in order to pull her shoulders down so they can get a great shot of her neck. Tech pushing her head down – so that her chin is touching her chest. Then another shot with the Tech grabbing her head back to flex her neck. Yeah good times. Fun. Neat. Wish you were here? J I was in a sweat by the time we finished and exhausted.
Lunch with Grammy and then home. Nap for her. Working on my thoughts for our family meeting with the school district. Compress 3 years. Help them know how we have battled for this little girl’s health. Help them understand that we are in a good place with her right now and NOTHING can get in our way. NOTHING to take us back to where we were.
I printed off pictures of Larkin at birth. I brought a picture of Larkin at her Baptism. What should have been a picture that brings joy – makes me cringe. Anyone can clearly see “little girl lost.” Her eyes are vacant. She is gone. ACTH girl. She is coming back to us – with a little bit of Michelin Man look to her. Our baby is with us and then she is gone again. Beautiful pictures that Rory took a month ago. Pictures that show our path. Pictures that show a beautiful little girl that we want to share with our community!
We met for an hour. They slated us for 45 but once we get going….she takes a while. My husband’s grief is palatable. I ached for him. He loves his little girl so. He said the most beautiful things about me. He is worried but trying to let go in the best way a father can. To a team that showed us today that they are listening and will their very best to help Larkin get her start in the “real world”.
We are excited for Larkin to go to school. We know that she will thrive in the social environment. However, she has never left our controlled care. We have never left anyone else in charge of her that does not follow our explicit instructions. Will Unit 4 do that? We are hoping so. There is too much to lose.
I am home. I am with my family. I am in the environment that I can totally control. We are all having dinner. Pita’s for me and Chase. A gram weighed, protein heavy, low carb, no sugar for her.
It’s all good.