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.
It sounds like your meeting went well. I’m sure it was wonderful to hear your hubby speak of you that way. Thank you for sending us to Judy last year. She is amazing.
Glad to hear it went well….I have to say that overall it’s been a great program for our little man. Can’t wait to see Larkin as her journey moves on 🙂
I was wondering what sort of placement Larkin will be in. I find it so hard to decide where to put your kid when she’s not….well, you know. When she has other issues.
I hope they can follow those dietary instructions. I have a hard time making sure they keep Kayla gluten free — and I even send in separate snacks for her!
What wonderful news to hear your meeting went well. I think of larkin of having wings of an angel. She is now able to spread those wings and fly into a brighter tomorrow. It’s sometimes hard to let go but time is telling you she is ready to teach and inspire those who are willing to teach and inspire her. I was just talking to my sis in law yesterday about a mother in her school district that was able to transition her child’s dietary needs into their school district and it was neat to hear how well that school responded to that child’s needs. Our school district has done the same with us and Marcus and for that we are so blessed. I’m am so glad that you have such wonderful support from your family and friends. You derserve that and Andy what a loving a patient father you are. You all are a beautiful family!! The future holds big things for you all . . . hugs to you from the Bates family.
It is my great hope that Unit 4 comes through for you and every child who walks through its doors … Perhaps Larkin will be a wake up call for them.