Wednesday, August 8, 2007


Got a lot on my mind at the moment.
(Nice pic of a lot on the mind, eh??? Gotta love google image search)

MM starts her new school tomorrow. Her teacher is coming here in about an hour to meet her. The few conversations I have had & the one my mom has had with her have been quite interesting. Interesting not in a good way. She seems to be quite ditzy. I hope this is just an impression and she does a great job for Meghan. I can only hope. XXXfingersXXX

With MM starting school, I am feeling relief (and guilt for feeling relief). It has been a very trying summer. It has been an eye opener as to her disabilities. She has made some gross motor gains this summer, minimal fine motor ones though. We struggle daily with getting her out of her routines & regimines and engaging with us. With the lack of therapy for summer, her speech has become mostly scripted. It is heartbreaking and scary for I am terrified of "losing her". Losing her to her own little world- we have to fight EVERY day to keep her in ours.

We go on the 20th to the immunologist to get the results of all the blood work she had done. Her ANA is moderately to high elevated. I wasn't really worried at the beginning, but I am concerned. They again mentioned lupus and are very concerned about JRA (juvenile rheumatoid arthritis). I am praying it is nothing for we don't need or want any more labels. We also go on the 23rd to the eye doc. This is supposedly the appointment to decide on eye surgery. I say supposedly cause they have said this before. We will see. A busy month for doc appts. I still have to make her 4 year well visit (I know, I know late!!!), but we had to wait to see the immunologist first.

Lastly, I am worried about my hubby. He seems to be having a hard time lately. He is finally moving in the grieving process of MM's disabilities. He lived so long stuck in denial. He is now in the anger/sadness part. He is also feeling alot of anxiety. It is so hard with men cause they don't talk the way we do. He told me this morning that he could barely sleep last night worrying about things- money, bills, his job, MM's problems, MM starting a new school plus a whole lotta of other family drama. Can anyone say pass the Xanax??? I am worried cause even though he has been in denial, he was more of the rock around here. He dealt with MM better at times and I could always count on him for his undying patience. I guess his patience is not undying for he also is getting tired of dealing with this. As I stated earlier, it has been a very trying summer.

I too am worried about money & bills. We had to bare the expense of private therapy this summer since the school system is so lacking. I had to quit going to the psychologist myself so we could pay for her therapy. I hope that getting back to school will help her. New school, new therapists hopefully equals not having to pay out the nose. It has really made things tight around here. I guess we are stressed cause we have never had to feel that pinch except during my illness. We are not rich by any means, but we are used to being comfortable. We have had to tap into our savings for some of this and I don't like not having a big cushion to fall back on. I have also had to take a lot of days without pay (don't get me started on that cause I have TONS of time, my job is just a bunch of weenies at times) due to appointments & such which just puts the squeeze on even farther.

I realize that being a parent is never easy, but at times I wonder when does the true enjoyment begin. It is constant worry & work all the time. I know that is true of typical parents as well, but I don't know if they worry about every small thing like I do.

Guess that is it for now. Not so eloquent & thought provoking.... just what is on my mind!


Trish ~CnJ's Mommy~ said...

Dont feel guilty. From one SN parent to another...sometimes you need a break. And if that break comes in the form of school where the child is taken care of and needs to be. That's great. I hope her new school does wonders for her. I've know a few ditzy people, and some are the smartest and most couragous. I hope the teacher is great with meghan!

Angela said...

Okay -- love the image. See, you can smile, because you made me smile...j/k

I wish I had all the right things to say but we're living parallel lives. Stress is hard, but even harder with a special needs child.

I truly hope things will change for the better once Miss M starts school.

I know for myself as Jack gets older his disabilities "stick out" so much more. I sometimes wonder if I am truly prepared for what our future holds.

Hang in there -- (((hugs))) to you.