Wednesday, April 30, 2008
Not only will CE be good for Grace, it is also a good thing for me. I am able to meet and interact with the other parents. Even though the disabilities/abilities vary among each child, the parents are experiencing much of the same things...grief, confusion and many times frustration. It is comforting to know that you are not the only one on this journey and someone understands.
We have pre-enrolled Grace for a full day camp in July. Thank you, thank you to everyone who helped make this happen for Grace...you know who you are.
Sunday, April 27, 2008
Anyway, we also discussed what elementary school might look like for Grace in a integrated system, such as Dallas has. It all sounded really good and acceptable but as I left the meeting I began thinking about how the other children in school will treat her. Even though we are very hopeful that she will walk, she will most likely appear different in her motor abilities than others. Will the other children be able to see past the physical differences and embrace her? Will she be included in the popular girls' groups? Will she be bullied?
My parents tried to teach me and my brother and sister many things when we were growing that I am so thankful for. Some of these things included empathy, compassion, respect, love for mankind. We were always taught that we were no better than anyone else and that everyone should be treated the same. Unfortunately, not everyone feels that way. In school, I remember several bullies...people that picked on or mistreated others that were different than they were, whether it was their height, their weight, their IQ, their color or just any little thing they could pick out. Why does someone become a bully? How should we respond to bullies? Have you ever been bullied? I don't know the answers but I like what David and Kathryn have to say about it here and here
Friday, April 25, 2008
We are so excited! Grace started her 2nd Conductive Education camp this week (more on that later). She will go every day for 4 hours for 4 weeks. We tried going the full 6 hours but she still needs a nap (who doesn't? :) so we will wait until July to attend a full day. After her 4 hour "work-out" she gets a great nap!
I love watching her sleep. She is so beautiful (I know I'm biased). She also looks so peaceful and so "normal". There is no struggling to crawl or walk or sit-up or eat with a spoon. There is no longing in her eyes as she watches her siblings running around and asks to walk. Unfortunately I still feel the worry and the longing and the pain but she sleeps...all is well with the world.
Wednesday, April 23, 2008
On Monday at the arboretum, Sophie decides to try to climb into the stroller and falls, face first, onto the concrete and now has a huge knot and bruise on her forehead. (Oh, this is also the day I have to take her into CE with no clothes on...she threw up all over her clothes...to drop Grace off...I got a lot of strange looks.) So that's number two...
Yesterday my friend Jackie phones (how does she always seems to know when I need her). "What are you doing?" she asks. I reply "I'm trying to figure out how much blood I should see before I take someone to the emergency room." She immediately leaves work and comes over (Thanks Jack!) We had just gotten home from school and I while I'm unloading everything out of the van (that's the really cool red minivan) and depositing it all in the house, Mack starts screaming. I roll my eyes (I'm such a awful mom) and head into the family room where Mack is standing with blood all over his face and the floor. I pick him up and try to assess the damage and try not to pass out. By the amount of blood, I am honestly expecting a huge gash across his head. Luckily it is only a much smaller gash. I still haven't gotten anyone to tell me exactly what happened but it looks like it hit it on the corner of something...maybe Grace's stander or a cabinet...I'm not sure. He will probably have a little scar on that perfect face but he's okay.
Okay, we should be done with bumps, cuts and bruises for a while. With 3 two-year olds do you think that is possible? Hey! I hear you laughing. HAHAHAHAHAHAHAHAHAHAHA
Sunday, April 20, 2008
Wednesday, April 16, 2008
One of Grace's therapist frequently tries to absolve me of some of this guilt. It not so much that I voice that I feel guilty, but he can tell by the million questions I always ask that I am wondering...am I doing enough...am I doing the right things. No matter how many times he tells me "Jacolyn, you are doing so much more that most parents even attempt to do. You are doing everything you can and should for Grace", I don't think I'll ever feel adequate. I will probably always blame myself if she never walks or has no self confidence or isn't happy. How can I love someone so much and fail them so miserably.
God, be my guide.
As for me, I will call upon God,
and the Lord shall save me.
Evening and morning and at noon
I will pray and cry aloud,
And He shall hear my voice.
He has redeemed my soul in peace from the battle that was against me,
For there were many against me.
It started off badly when I overslept. Thankfully we didn't have any appointments but if I don't get up early, get to the gym or to Starbucks, or just get myself composed before the kids get up, then everything just seems downhill from there.
Mack throws a fit after Abe leaves for work. So as he is screaming Daddy!!!, I am trying to get Grace hooked up to the e-stim machine. Sophie is trying to help. Grace is screaming NO!! Finally get her electrodes on and wrapped into ace bandages and into the stander. Mack climbs on the stander and Sophie tries to get her out of the stander. 30 minutes later we get her out and attached her to a board to work on tummy time. She is still screaming "NO" while Mack and Sophie are fighting over a blanket. "MINE!!! I WANT IT!!!" So, I start screaming, "THERE ARE 2 BLANKETS, GET YOUR OWN AND WORK IT OUT!!" while I'm trying to convince Grace that the being attached to this board is really fun. Then Mack crawls on my back screaming "Thomas Thomas" Now Grace wants the "Barn Book". Do we have a barn book?!!?
So, now my hands are shaking and I'm about to stick my head in the oven Sylvia Plath style...and that's my morning.
Monday, April 14, 2008
I know you are all missing photos of the kiddies...so check back soon.
Wednesday, April 9, 2008
So over the past 9 months I had reconciled myself to the fact that we weren't getting in and that it was okay. We were working through everything. Well, we are now in!!! We got a letter about a month ago with a scheduled appointment, which was yesterday. We meet with a team of doctors and therapists including an orthopedic doctor who confirmed that Grace's hips and spine were growing properly (Thank you God) and right now we don't need any orthopedic services but she will be followed by this doctor through their neurologist that we will meet later. He did say that Grace needed to have new AFOs as she has outgrown her others. Folks, this is another good thing....they casted her for her AFOs right there!!! We didn't have to make another appointment or go to another place. I was so grateful!! Thank you Scottish Rite!!
Monday, April 7, 2008
Thursday, April 3, 2008
Tuesday, April 1, 2008
I loved playing tag in elementary school. It was kind of scary though because if a boy tagged a girl they tried to kiss her. I had a lot of anxiety about this because I was really scared of kissing a boy. If caught, I would kick the boy in the shin....and I wore cowboys boots...oohhh, that should have been one of my 7.
Kat at Story of My Life has challenged me to a game of tag... with no kissing :)
Here are the rules:
- Link to your tagger and post these rules on your blog
- Share 7 facts about yourself on your blog, some random, some weird.
- Tag 7 people at the end of your post by leaving their names as well as links to their blogs.
- Let them know they are tagged by leaving a comment on their blog.
I'll give it my best shot...
- I do many things while following a "Delayed Gratification" philosophy. The means that you get the hard, bad or annoying stuff out of the way first then you are gratified at the end by doing something more enjoyable. As an example...I eat the crust of a sandwich or around the edge of a cookie first because I like the center part the best. In addition, when parking in a parking garage I drive to the top and then around to find a place that will allow the shortest departure out of the garage.
- My Chickasaw Indian name is Fochik Tuthina. Can you guess what it means?
- In high school I was elected FFA (Future Farmers of America) Sweetheart. I had a white corduroy jacket with the FFA emblem on the back and my name embroidered in front. It looked really good on me with my 1980s permed mullet.
- Another food one...If I equally like all the food on my plate, I will eat it in equal amounts so that the very last bite contains a small amount of each item.
- I had so much anxiety about doing this exercise that I dreamed about it last night. In my dream my list of seven were much better than this...that is, if wanting to marry Jerry Seinfeld and convert to Judaism is more exciting. Hmmm...don't know where that came from.
- I refuse to buy magazines such as People or US because, well they're crap and I'm morally against them :). However I will dig through every magazine in a doctor's or therapist's office to find trashy magazines. I love them!!
- See intro above.
1. Krista at Galli-Ringo Family
2. Angela at Busy-Lizzy
3. Trish at My New Normal
4. Kelly at Lambert Boys
That's all I've got...all you other people need blogs!