Thursday, March 27, 2008

Two Steps Back, One Step Forward

Well, he did it. I say he because when it comes right down to it, all the coaching and pushing and pulling and reminding and blah, blah ,blah doesn't mean a thing if the boy doesn't do the work. So he did it. The threat of medical intervention to deal with his spasticity has been removed. His range of motion has greatly improved in his heals, quads and aductors as well as a few other muscles that I can't come up with the names for but by golly know how to stretch and strengthen them! We took the two steps back to retrain muscles away from bad habits and came away with greater strength, increased flexibility and unfortunately a much more wobbly gate. Turns out that if you attempt to re-teach a child to walk correctly they actually have to learn how to walk again. So we have a wobbly but much better gait pattern that is improving daily. Sounds good to me. Ben even agreed that he would keep working hard when the doctor asked. Then gave her a hug and told her he loved her. This is something Kiera said to me today when she was trying not to lay down for her nap: "Mama, I have to go find my Elmo before I go to bed. He is out here but it's OK you can stay there. I'll be right back." I need to get this stuff on tape. Her Doc just doesn't believe that she is conversational. What you should never say while holding the hand of a child of any ability: "He's just different" Not to people you know, not to strangers, not to other children. A child should never hear himself spoke of as an object that needs explaining. Never.

Monday, March 17, 2008

Happy St. Patrick's Day!

Happy St. Patricks Day all!

So much to write, so much to share, no time at all so...

I'll leave you with this...

Oh yea, I'm 35 now.

Wednesday, March 12, 2008

no, NO, NO!

I hate the word cancer. Everything about the word, the way it looks the way is sounds and the way it feels when you say it. I hate what it means, what it does to a persons hopes, how it makes you feel fear like you have never felt it before. How it means that your life will never be the same. Never. Even if you recover you will forever be touched by cancer. I just heard that a person that I care for very much has cancer. She is a new friend. Which in my case means that I didn't go to elementary school with her. She is a friend that came into our life because of Ben and stayed a part of our life because she is wonderful. She is one of those people who doesn't need to have her feet in the special needs world but does because she cares so, so much. She has an amazing talent for kindness that you can see in her work and in her life and I hate, hate hate that she is facing this battle. I had cancer. Thyroid. So now I have no thyroid. I only think about it every time I take my meds so...everyday. I remember thinking "Is this really what is supposed to kill me?". Answer was apparently no, or at least no right now. I have been cancer free for a little over 7 years. Which means that my mom has been cancer free for over 8 years. She is a cancer survivor too. Breast. My grandmother had breast cancer as well. I just found out that a woman I know had thyroid cancer. I noticed our matching scars. Dave's old boss just found out that he has "bad" colon cancer. I think that bad is man speak for advanced. Everywhere I look people are being devastated by this word. Lives forever changed, holding onto scars that will never fully heal because the word strips all those it touches of there sense of balance, of there sense of right. I am so afraid for her. My heart breaks for her and her new husband. Pray, in any way, for her. I hate cancer.

Friday, March 7, 2008

Too Much Help

I want to be approachable. I want for people to offer a hand. I want people to interact with Ben. In other words I want everyone out there to treat us like they would any other mother and son they see. Except for today. I, in my ignorance, thought it would be easier and faster to go into a kid luring french fry haven at lunch time today. The drive thru line was so, so long and we were on a tight schedule to make it from physical therapy to school. I really had no idea that Ben would see the play place and walk, no run, away toward it while nearly tearing off his jacket. My response to this action was an off handed call out for him to leave his coat on because we couldn't stay; we were on our way to school. He turned around so suddenly to object that he fell. And you know what? Everyone wanted to help. I had three people try to tell me what had happened, two people offer to help us out with our order and two more people trying to sooth Ben's tears with treats. Everyone reached out a helping hand with not a blink of that uncomfortable look that we often get when people realize that Ben is not a typical kid. And I was grateful and thankful and offered explanation to all questions that needed answering and inside I was screaming. LEAVE ME ALONE! LET ME DEAL WITH THIS! HE IS MAD AND SAD AND NOW HE FELL AND IS SO EMBARRASSED AND I AM ADDING INSULT TO INJURY EXPLAINING TO YOU WHAT IS GOING ON INSTEAD OF DIFFUSING THE SITUATION AND TAKING CARE OF MY SON. Interesting huh? I have spent the last five years wishing for just this reaction to Ben and when I got it, it frustrated the daylights out of me. I wanted to be grateful but it made me so sad. A conflict of emotions that I couldn't wrap my head around. The utter sadness that we are in need of or warrant that attention. My inability to make it all better made me feel different even when others were treating us as if we weren't. I can kiss his head but I can't take away the cause of the fall. CP sucks.

Wednesday, March 5, 2008

Happy Accidents

Happy Accidents. You know, ordering just the burger because you didn't want to admit that you want the fries and then the cook puts some on your plate by mistake. Or going down the wrong aisle in the grocery store causing you to remembering that you are in fact out of coffee (gasp) and you forgot to put it on the list. And my new favorite- driving 40 minutes away from home to look for shoes and bumping into friends in a store you didn't plan on going into. Ta Da! Happy accident turns into impromptu play date at Old Navy. I'm serious. I really thought that any moment the staff was going to kick us out of the store but the silliness was really their fault. Who puts 4 big baskets of balls in reach of children in a children's section. Kiera got a chance to play with friends that didn't run from her (that has been happening lately) and Ben got to play with friends that didn't care if he had a walker. One of the girls walks with a walker too so it's nothing new to them. There really is nothing like the openly happy look on Ben's face when he sees these girls. It could be that he just likes the bell on the other walker but based on the fact that he told both girls that he loved them about 100 times I think that it is more than that. We ended up spending a really fun afternoon playing and being silly. But can you believe, no camera! This was Ben and my conversation at bedtime-(when you read this try to picture bright, happy blue eyes, a soft smile and little giggles) Me: I had a really fun day with you today. Ben: (big smile) Mama, Eden wants to walk. Eden wants to walk just like Ben wants to walk. I walk in my walker just like Eden and Eden walks in her walker just like me. Eden has a bell. I ring the bell on Edens walker. Eden rings the bell too. Well, I'm tired mama. I love you.

Monday, March 3, 2008

Problem Solved

Here I am, in the midst of inches of beautiful new snow. And we can't play in it. That's Michigan's trick you see. It gives you snow, you get maybe one day to play in it then it does one of two things 1)turns to muddy slop or 2)becomes so blasted cold outside that you are actually being mean if you take your kids out. This time it was choice 2. Something like 18 degrees outside. Then I remembered! I was a fun mom last winter! I had heard from a friend, I think it was Billie, that she brought snow inside to play with so I filled a bucket with snow and put it on the kitchen floor.

Having remembered this I ran to the garage (I have to run there is no telling what my kids will do while I'm gone), dug through the boxes that won't allow me to park in there and brought up the water table. Buckets and all. Brought in a few shovels of snow and presto! snow to play with. Problem solved. Kids get to play with snow, I get to skip the whole getting kids dressed thing, anyone can pee anytime they like AND I get to stay warm. After a good pat on the back I realized that they are not loving it like I am. Oh they came and gave it a good looking at, Kiera ate the snow off of a sand toy, Ben even picked up a shovel WITH A FROWN ON HIS FACE. What is this! I have actually brought a mess into the house MYSELF. You would think that they would have jumped at the chance to go nuts. But no. Then they answered the question themselves "It's too cold mama." Ohhhhhh. Mittens! I forgot mittens. So I found some mittens (no small task) and yep, problem solved! Warm hands and fun were had by all. That is until they asked for ice and Kiera got a piece stuck to her lip (only partly my fault) and then ripped a bit of skin off (totally not my fault).

As a quick side note-it is very hard to get fun pictures when your counters have dishes all over them and your daughter has decided that "nakey bottom" is the way to be. Also note the sad pathetic dog who is pouting because what fell out of the table was just really cold water.