Tommy Dereksen

Last night, a smart, sweet, strong little boy named Tommy decided he was done with his battle with congenital heart defects. I know of him through an online support group for parents of trach kids. His mom and I emailed back and forth recently and I found her to be a very dedicated and loyal mom who will do anything for her kids. He and his family have been through so much the last almost 2 years, a lot of it not even related to his health issues, and I can not believe they now have to go through living without their little boy. I know his family is heartbroken and I don't know what to do or say.

I've had the opportunity to meet a lot of fantastic yet really sick kids and their parents this past year. And some of those kiddos just don't make it. This is what I hate the most about being on this journey with Tater. I've found a world that most people know exist but never think about- a world where babies die for no reason and their parents have to live with questions for the rest of their lives. It sucks and it's not fair and most of the time there isn't a damn thing that can be done. It pisses me off and makes me sick to my stomach.

This morning, there is a mom who is having to tell her 9- and 5- year old sons that their little brother passed away. Please think about her and her family today. Take the time to think about the kids who won't make it to the end of the day and their families. And then remember them tomorrow and the day after. Don't ever forget them.

Roller Coaster

Up and down. Twist and turn. You never know if you'll end up laughing or throwing up. I used to love roller coasters and now that my life has become one I'm not so sure anymore. Tater is doing really well and Toser is being super sweet lately but the Medicaid thing has been weighing me down. I think it's been worked out but who knows. We'll find out Friday when we see Tater's new pediatrician. (A guy who just graduated from med school and started work this past Monday. I kind of feel sorry for him already. You know he's expecting easy summer colds and viruses and we're going to walk in with all of Tater's gear. Welcome to town! At least he'll know what most of the stuff is, being fresh from the field and all.)

Last Thursday some very old friends of mine, T and 2 of her 4 kids and L and her 2 kids, came to lunch at our house. I haven't seen them in at least 16 years (yes, I feel kind of old saying that). It was definitely a blast from the past and really good to see them. Rumor is they have an old picture of us and we took one on Thursday so if I can get those, I'll post them so you can see how much I've really aged.

And this Friday, I'm going to Montgomery for Sisa's brother's wedding reception which will be a lot of fun. Then Saturday morning, I'll drive over to Atlanta to pick up Leeda and her boys and bring them home with me to stay for the week. Saturday night we have a birthday party to attend for a very dear friend of the family. It will be a busy, fun weekend for sure.

Rrrrrrrrrr

The last few days have been very frustrating for me for small reasons. It really is the little stuff that wears me down and I am worn.

It's not going to make sense to anyone who isn't used to working the system that is Alabama Medicaid but let's say I find the system poorly run at best. My gosh! I feel like crying every time I get off the phone or get correspondence in the mail. It is sooooo frustrating. They keep changing things and never fully explain why-I've even had them hang up on me when they didn't know the answer to a question I had. All of this is about to affect some of Tater's care and that is not acceptable. But I'm not sure how to resolve it. Argh. and Weep.