Health care is a basic human right, not a privilege. For some reason, we’ve allowed ourselves as Americans to be fooled into accepting that one must be blessed with “means” to actuate appropriate health care. As a nation we have failed to realize that our health care system is a barometer of our society’s value for human life.


Friday, December 08, 2006

Melancholy..Different Expectations

This weeks and next week’s schedule:
M Dec. 4th - Work 8 - 4:30
T Dec. 5th - Work 8 - 4, Sandis PT evaluation at 5pm
W Dec. 6th - Work 8 - 1:00, Sandis Dr. appt at 2:45pm, Sandis ST evaluation at 3:30pm
R Dec. 7th - Work 8 - 5
F Dec. 8th - Gracie 8am PT evaluation, work 10 - 4:30, clean building tonight
S Dec. 9th - Work 8:30 - 1:30
S Dec. 10th - Clean house (perhaps, more like drink vodka and be a bum (just teasing about the vodka!)

M Dec. 11th - Work 8 - 5
T Dec. 12th - Work 8 - 1:15, Sandis ST eval. At 2:15pm, Sandis OT eval. at 3:15pm
W Dec. 13th - Work 7:30 - 12:30, Sandis GF/CF consult 1:30pm
R Dec. 14th - Work 8 - 5, Autism parent support group at 6:30 - 8pm
F Dec. 15th - Work 8 - 9am, Sandis classroom observ & music show
9:30 - 12:30pm, Work 1 - 4:30pm, clean building tonight
S Dec. 16th - Work (for some undetermined amount of time, as of yet)
S Dec. 17th - drink more vodka (not really but I’ll consider it) and bum around the house considering doing some ironing

Anyone catching a trend? I am SUPPOSED to work 40 hours a week, but I’m averaging around 33, although with the addition of working a few Saturdays, I’m hoping to up that by a few hours. I am blessed that I work for a company that is large enough for me to qualify for FMLA protection, or I would be HISTORY with my job and my availability.

I’ve been running from one appointment to the next. It feels so good to get all of this stuff under my belt and it feels awesome to know I am putting one foot in front of the other, but it is just so MUCH! I have so much to organize. I have so much to keep track of. I am so tired!

Gracie had her physical therapy evaluation today. I haven’t talked so much about this aspect of Gracie, the leg and joint aspect. Gracie has extremely flexible joints, so much so that she can fold her thumb back to her forearm, hyperextend her knees, and sit Indian style with her feet FLAT on the floor (quite a sight!). This has caused some locomotive delays, intoe-ing, and toe-walking. I’ve known for quite
some time that we were going to have to deal with these problems, but I haven’t been dealing with it. I was waiting for this appointment to come up, and I figured I would deal with it then. It makes me sad to have just one more thing. It just makes me sad. I don’t know how to explain it any other way.

We decided on physical therapy at least once a week ( the most I can afford right now! ), some orthotics (plastic braces) which should help position her feet in the correct direction and keep her off of her toes, knee braces to help with hyperextension of her knees, special tape to help hold her feet and lower legs in the correct direction, and a hip brace (hugger) that when used during therapy and at home should help position her legs forward and get her using the appropriate muscles to move around. It is more than I expected. The problems the therapist pointed out I already knew. Her PT evaluation showed that she had the locomotion capabilities of a two and a half year old. I told the PT before evaluation that she looks two, so I think that because of that her mobility problems are noticed less because she moves okay for a two year old, but not okay for a 3 and a half year old. It was surprising (kind of) that I was right on with that statement.

I’m sad because we have one more thing to add to our plate. I’m sad because, when I had my babies, I imagined them as strong and healthy and perfect. They ARE strong and healthy and perfect, but I wish I didn’t even KNOW what Aspergers was. I wish that my vocabulary didn’t include EDS, and I wish that I never had to see the indoors
of a pediatric rehabilitation center. I didn’t sign up for this! Give me back my healthy and normally developing children!

Ah well. Fat load of good that did. In previous posts I’ve talked about a reality shift. I’ve really fallen into my new reality, but I’m still in my grief process. My grief over what I expected, what I thought this was going to be like, and how wrong I was. My grief over health expectations that are far from being realized. My grief over things being different than what I want, and different from what I
expected. I guess I’ll get over that. I don’t really have a choice. And I guess that it is okay to grieve. I just have to shut my door first, so the kids don’t see me...


Vivian said...

It is absolutely ok to be sad and to go through the process. Just make sure you know when it gets to the point that you need to ask for help. Looking at your schedule I don't see any Sarah time. I know how hard it is to make sure you spend time for yourself, but everybody must replenish. Big hugs to you, I wish I could help.

In Search Of Balance said...

To me, you are navigating an amazing course of unexpected and difficult things with a remarkable, beautiful grace.

Chrissie in Belgium said...

I am sorry that life has ent you another kick! SHIT SHIT SHIT - there I said it for you! Christ, who would have ever thought that one could have too much flexibility. OK, try not to bawl in fron of your kids, but you know you cannot hide your feeling from them. They will see and then wonder what you are hiding, better to talk and talk and talk some more.

Minnesota Nice said...

Oh man. I hope the pediatric pt is in town and you don't have to make yet another trip down here. Have you been able to make use of the exercise room your co-workers gave you the key to?

Lyrehca said...

Grieve as much as you need to--you're going through a lot!

But save these posts so you can look back (in a month/six months/a year/ten years) and see how far you've come.

ebbye said...

I am a 30 year old type I diabetic in Sydney - I am so pleased to find your blog! I use needles to draw the syringes I carry around in my bag and most days feel very healthy and happy and consider myself lucky that our bodies give us indications when things go wrong. Hey! They even push us to live healthier and probably longer and I am speaking for you and your kids here - you sound like an incredibly stong loving mom and I feel humbled

Erica said...

{{hugs}} It IS okay to grieve.

Jamie said...

It is most certainly ok to grieve. You do have a lot on your plate.

You're right though - when our children are born, we have every belief that they are never going to have any sort of health issues. It's a grieving process for us, as parents, as we come to the reality of the situation when something does come up. In time we all become accustomed to our new way of life, but there is still that little person inside of you that needs to cry every once in awhile for what we originally dreamed for our children.

You're a damned fine Mom and you're doing a terrific job with both of your kids :) Hang in there.