Haven't updated in some time.
Things are good. Jillian had her 6 month cardio check up in October and all is well. She was dissappointed that she wasn't getting an echo. Dr. R has decided to only do an echo every other visit, so once per year. The other visit will just be an EKG and general check up. She is doing well so no complaints from me.
Halloween was fun. Jillian was Darth Vadar and stayed in costume all month. She LOVES Star Wars. Guess what she picked for her ornament this year? Yup, you guessed it. Darth. And her Christmas wish list? Mostly action figures and Sock em boxing gloves. No time for that girlie stuff here.
School is good. Third grade is more of a challenge for both her and I. I mean really? Checking her homework every night? But she's doing well and loves her teacher.
I got a new book. It's called Heart Warriors by Amanda Rose Adams. It is about a family facing Congenital Heart Disease. Sounded interesting. Thought it would be an easy, enjoyable read. Not. Don't know what I was thinking.
The first time I started reading it was in the waiting room at Sac State while Jillian was at speech therapy. There is a forward from a Cardiac Surgeon. Half way into his writing I got that old, familiar knot in the stomach. Kind of sucker punched me because I was so not expecting to have such a reaction. Then the tears started welling up in my eyes. I kept reading. First pages of Amanda's story and I was holding down a sob. Tears falling down my face. That awful feeling in my stomach.
I had to stop reading.
It was especially hard to read about her description of the Norwood, Glen and Fontan. She explains them in easy terminology for anyone to almost understand and with a little sarcasm thrown in, which I love. But it just hurts all over again to actually read it. To know that Jillian had those same things done to her.
I so did not expect to have such a strong reaction to this book. But I have kept reading it. And it is good. I love the way she is telling her story. She reacts to many things much the same way I did. She uses a lot of the language I probably would if I ever wrote a book.
And the story is so damned familiar. I feel like I am walking right beside her in the hospital hallways. Sitting in the same waiting rooms. Sleeping on the same uncomfortable chairs. Same worries, anxieties, fears.
But every time I take the book out I know I will be crying the whole time I am reading.
I mentioned speech. Yes, Jillian is finally getting services through Sac State. And the therapist who is working with her has validated all of my concerns. And the one that really gets me mad is that she is having to work with her on the way she moves her jaw for certain sounds. Jillian does this because she was compensating earlier on for sounds she couldn't make or because people couldn't understand her. But remember that I was told she didn't qualify for services? I tried to get her early intervention and couldn't. But she's getting it now.
Many things to be thankful for.
Jillian was asked at Thanksgiving what she is thankful for. Without even hesitating she said.."I am thankful for the surgeons who operated on my heart".
And so am I Jilly Bean.