Last week Garreth and I decided to have a fun, memory making time just with Aidan. These activities can be difficult to plan. What will he really enjoy? What is nearby and accessible? What would be consider a special activity, outside the norm?
We decided to go to our local children’s museum, and since we thought it best that he not run over the local children, we put him in his manual chair. Aidan was able to wheel around at a reasonable speed and participate in the cool activities at his eye level.
Garreth and I enjoyed our time together and took a selfie to prove it:
And because Disability World is with us wherever we go, we stepped into the EEG exhibit and joked about charging people to see us. The point of this particular exhibit is to teach you about bio feedback and calming brain waves which apparently only Garreth has. We strapped it on Aidan and watched the waves go bonkers. Good times.
We are down to one week before spine surgery. Two titanium rods will be placed around Aidan’s spine from just below his neck all the way down to his pelvis. It will be a long day under anesthesia.
Scalpel and spine, hurt to heal.
Garreth and I are a great team but handle these situations differently. I need to name the monsters under the bed to be rid of them and then plan to be prepared for a variety of circumstances. We’ve known for a long time that Aidan would need this surgery. It’s still considered elective, absolutely necessary but certainly not an emergency. That should take the stress level down a bit, but scalpel and spine, hurt to heal, still builds tension.
My brain and body are in overdrive right now. Garreth’s work changed insurance carriers recently which has led to a bit of a kurfuffle with prior authorizations and such. It’s easy to say that the people who get paid to work this out should just work it out, but generally speaking it doesn’t work that way. I asked one wonderful man at the hospital, after he checked the records and said they had no information about Aidan’s surgery, if there was a chance we could show up to surgery and have no idea who was paying. He said absolutely not. It’s the hospital’s job to figure that out and yours to take care of your child. I love him for believing in unicorns.
And then there is the nursing care. Don’t even get me started. Really. I’m grateful to have a strong nurse advocate who is pleading my case to the state, but honestly, what is there to say? We haven’t had coverage in ages and we’re asking for so little and we haven’t received the level of care we should have.
All of that to say we really needed a day at the museum. Life shouldn’t be all about phone calls and worry and details and such. It should be about laugher and exploration and making memories. So we did.