Friday, November 26, 2010

Mental diarrhea of a special needs mom

I worry that I don't push you hard enough. I worry that I push you too hard. I worry that I see you differently than others do. I worry that others won't recognize your potential. I worry that I expect too much. I worry that I sometimes don't expect enough. I worry that you'll never understand how amazing you are. I worry that I'll over inflate your ego. I worry that I force you be too independent. I worry that I don't expect you to be independent enough. I worry that one day you just won't wake up. I worry that one day you'll stop breathing and I'll be there but I won't be able to fix it. I worry that one day you'll drink and drive and have an accident. I worry that other kids will make fun of you and you'll believe them. I worry that you'll feel inferior to the kids who are bigger or faster. I worry that you'll feel like we love your brother more. I worry that your brother will feel like we love you more. I worry that one day you'll think maybe you weren't supposed to live. I worry that you'll smoke. I worry that you'll be the last kid picked. I worry that you'll think my love for you is dependent on your abilities and successes. I worry that you'll take your talents for granted and mourn your weaknesses more than you should. I worry that your teachers will pigeon-hole you and not recognize your strengths. I worry that some girl will break your heart one day. I worry that you'll make the same mistakes I did. I worry that I'll obsess over making you eat and that you'll wind up overweight. I worry that you'll get cancer from all the radiation we've exposed you to. I worry that I protect you too much, and not enough. I worry that one day I'll push too hard for the doctors to do a procedure, and it will not end well. I worry that I'll sit quietly and not push the doctors, and it will not end well. I worry that you'll get hurt playing football. I worry that you'll think your best isn't enough. I worry that you'll be bullied in the bathroom at school. I worry that one day you'll go in the men's room alone. I worry that you will get some girl you don't love pregnant. I worry that you'll be infertile from all the xrays. I worry that I am setting you up for failure. I worry that I am doing everything wrong. I worry that I'm not doing everything I can.

I worry.

Tuesday, November 16, 2010

So there's some good news and some bad news

Dax may have had a seizure today. His nurse went to wake him up from his nap to get him ready for therapy, and she noticed he felt warm. When she tried to rouse him he would not wake up and would only grind his teeth and twitch. His eyes opened but he wasn't focusing on anything. I was already almost there to take him to therapy, so I drove him straight to the local ER. THAT was a looooooong drive.

After about an hour he began looking around a bit but he still wouldn't respond to his name. He finally reached his arms out to his daddy when he leaned to pick him up, and he was finally able to sit up. As far as testing goes, his temp was 103.0 rectally (high, but not that high), sats were 94ish (a little lower than norm for his awake sats), the urinalysis was clean, the CT looked like... Dax's brain... but with nothing acute, the chest xray was normal, and the bloodwork was clean. So, it looks like we're left again with a possible febrile seizure. And this time I think that might be right.

We're home now, and Dax is a little lethargic and just a little spacey, but he's back :) Blue lips are scary, but I think looking into your child's eyes and seeing no signs of awareness is one of the scarier experiences we've had. I might just give that boy Tylenol every 6 hours until he's 12.

On a brighter note, I just HAD TO share some good news :)

Since the last update, Sweet Baby has been in and out of the hospital and has had a handful of surgeries to correct airway and GI issues. (You'll just love that, since bio mom and dad have to be kept abreast of any hospital admissions, the bio mother has asked A.) If Team Baby was keeping Sweet Baby sick so the bio parents would look bad, and, B.) What Team Baby was doing to "her" baby to make him sick. Insert your own %^*$% here.)

At any rate, bio mom and dad have not shown up for visitation with "their baby" since June and July, respectively. That, in TN, constitutes abandonment. Couple that with a couple of arrests for possession with attempt to distribute, some evictions, some felonies in some other states, some false documentation, some unfinished community service, and a handful of more nails into their parental coffins.

And then there was the hearing today. The hearing the bio parents didn't show up for. The hearing the bio parents' lawyers didn't show up for, either, since their lawyers have dropped them as clients. The hearing before the same judge who's presided over every other hearing regarding our sweet little friend. Team Baby reports the judge appeared genuinely disgusted with the bio parents and he officially removed the option of Sweet Baby returning home with his parents from the table. What does that mean? There is only one option now, and that's proceeding with adoption with his real family :) Looks like justice will prevail this time. Now we can all just count down until it's official!!!

So, I'll close with Team Baby's ongoing public service announcement:

"If your eggo is preggo, don't smoke crack." :)

Love you guys!