Saturday, November 27, 2010

Hard Times, Facing Reality

Every now and then, we get the horrible news. Somewhere in this world, God has chosen a young girl/boy to join him while they are still young. It is never easy to hear. Sometimes they are young, just starting out in their journey...sometimes they are a little older than your own, and you think "that is only a couple of years away"...Or sometimes they are older, and you try to imagine that far away. Age doesn't matter, it is the reality that hits like a ton of bricks. It is the reality that according to many of the doctors, they are living on borrowed time. We try so hard not to think about it. We live in the moment, think that the disaster will never strike our family. Truth is, when it strikes the family on the other side of the world, it has hit home. We are all family joined by two simple words: Rett Syndrome. The devastation of a diagnosis has brought us all together as family. When the disaster strikes one of our own, we can only wonder if the others are on borrowed time. This past week, it happened again. Rett Syndrome has claimed another life. We shed a tear, face reality, and say a prayer. We pray that a cure is found before another life is taken. We hug our kids, and thank God they are here, while we cry for the family that lost one of their own. The devastation must end. We need our cure.

If Rett Syndrome has ever entered the life of someone you know and love, please consider making a donation to the International Rett Syndrome Foundation. With your help, we can make this harsh reality of thing of the past. With your help, we can think about the future, and say farewell to Rett Syndrome. Don't know what to get someone for Christmas? Why not make a donation in their name and take us one step closer to a cure.

Caitlyn thanks you.

Too long..again

Time slips away from us, and I forget that people are reading! It has been almost two months since our last post. So much has happened. And of course with lots of action comes a few pictures!

This is my playdough sunshine! I am currently going through a year long leadership and advocacy training program that is funded by the Developmental Disabilities Council in WA. Luckily, the wonderful ladies at the Arc of Snohomish county know we sometimes need to keep our hands busy while we are listening to presentations. It was a rainy, dreary day. I added a little sunshine to the room. I promise, I heard all the presentations!

We had our annual IEP meeting in October. The educational road for Caitlyn has been far from easy! We have disagreements, rough meetings and tears in the past. I am pleased to say that this years meeting was both civil and productive. It may very well be the first IEP meeting I have walked away from not wanting to cry. Caitlyn has a wonderful team on board this year, that all seem to see her potential. It is so wonderful to have staff that strives to help her meet her full potential. We are also excited to be actively searching for a voice-output communication device for Caitlyn. I know it will be a long process, but I can't wait for her to have a voice!

We spent the last few days of October at beautiful Cape Disappointment State park. We had one absolutely beautiful day while there, which was perfect. The trip wasn't all for fun! We took Caitlyn out of school for a few days to head down to the Ocean. On our second day, Eric and I woke up at 4:30 to get showered and get the kids dressed. We then left for a 2 1/2 hour drive in to Portland, OR to see a wonderful team of doctors and therapists that know Rett Syndrome. When you have a kid like Caitlyn, going to the doctor can sometimes be like going to the podiatrist (foot doctor) to have your eyes looked at! Rett Syndrome isn't a widely known syndrome. So, once a year we make the trek down to Portland to see "the team" at Legacy Emanuel Children's Hospital. It was a wonderful visit! They commented on how well Caitlyn looked, and were excited to see her growth both physically and developmentally. We walked away with some great ideas for communication and a plan to come pack next year! It was wonderful!

As you can see, Caitlyn had a bast at the ocean!! Unfortunately, we couldn't let go of her hand...She has no fear of water, and would have likely swam to China! Twice we were standing where we though it was safe, only for both of us to end up with water up to our ankles!! The first time I think we both freaked out a little...The second, we just laughed and splashed...Then headed back to the camper to get dry clothes! We have this state park on our list of vacation spots now!! (The picture of Gunner sitting on the beach is still on the camera, which I can't find. I will add it when I find it. :) )
Thanksgiving week started off with a bang! Monday morning, just as we were getting Caitlyn out the door for school, it started to snow! That was the only day Caitlyn went to school that week! Tuesday and Wednesday were both snow days!! Thankfully we have a wonderful gal who the state pays to come help out with Caitlyn. She was able to help entertain, and give me an adult to talk to!! Here is both kids Tuesday morning watching Ice Age while playing with the stacking rings...See, they both play with them the same way..That must be the right way...Who knows what the white pole that they came with is for!
Tuesday in never got above about 22 degrees F! Wednesday was a tad warmer, getting up to about 27 I think. Caitlyn's caregiver and I ventured out with the kids to Costco. Now that's a crazy place the day before Thanksgiving!! When we got back, I had to get a quick picture of Gunner in the snow...It was is first snow fall, of course! He has been fighting a cold, so we just stayed out long enough for a picture.
and now for a mommy update! In the middle of June, I decided is was time to get back to taking care of me, and signed back up for Weightwatchers. I was doing it when I got pregnant with Gunner and had to stop. I have watched through the years as my sister has done Weight Watchers, and made it goal weight. I knew from the past that as long as I stuck with it, I would lose. Well, I have had some up's and down's. Today was a high day though! I surpassed 10% loss of my starting weight! I have lost just over 26 lbs since starting ww. That is the last 5 lbs of my pregnancy weight, plus 21 extra lbs! The process takes such dedication, but I know that in the end I will be so glad!!! I am on a journey to a healthier, happier me; a mom that can keep up with her energetic children!