Thoughts on the Trail

Tonight I was blessed to get out alone and do a long run on the paint creek trail. I love running. I started running when I was 14 years old. I’ve taken time off, you know, to give birth to my kids and what not ;) but I’ve always come back to it. I run for exercise and to keep in shape but also because it’s therapeutic and spiritual for me. My days are busy so it’s not often that I get time to just think, but I get to do that when I’m alone running.
Tonight I started out my run and thought about what a miracle it is that I am able to perform that act. It sounds silly but I actually started praying and thanking God for my legs – legs that are so strong that they can actually hold me up when I’m standing, that I can place one foot in front of the other without even thinking about it. That I’m actually able to run, jump and skip – what a miracle. I continued running and passed by a couple walking and lifted my hand to wave and said “hi”. I then thought about my hands and thanked God again, for hands that are able to wave hello and hold onto this water bottle and bring it up to my mouth for a drink. Hands that are so capable that they can actually shoo that fly away and scratch that itch on my shoulder. I thought about my voice when I said “hi” and thanked God for it. To be able to say “hi” is a miracle! And to sing along with this radio that I’m listening to (when there’s no one around of course) – Thank you God! My head was racing now with all of the many things that I take for granted each day and I became overwhelmed with thankfulness. Thank you for allowing me to breath (all though I’m gasping now) regularly without even thinking about it. Thank you that I’m able to run in 80 degree weather and my body is able to handle the heat. Thank you that my blood circulates and I don’t feel the sting and numbness of poor circulation. Thank you God that I’m able to eat with my mouth and not through a tube, that miraculously my body digests and absorbs nutrients. By now I’m completely overwhelmed and almost in tears because as you can probably guess I’ve been thinking of my little Annie who is unable to experience all of these things that I so selfishly take for granted. Its beginning to get hard to fight back the tears now and I’m about to slow down to a walk when I actually felt a push as though God was telling me “keep going, I’m with you”. Well, I did, I kept going, this time just looking at the scenery and enjoying the music. After a few minutes I was calm again, no longer on the verge of tears and I decided to pick up my prayer. “Help me to always see the blessings around me that far exceed my problems. Thank you for all the miracles that I take for granted every minute of every day. Father God in your infinite grace and mercy heal my daughter so she is able to experience all of these miracles, but until your perfect time, promise me that you will grab her little, calloused hand and stay with her. Help her to keep going no matter how hard it gets.”

I actually wrote this second paragraph down for myself the other night because it was so powerful for me and I wanted to always remember this moment. But then I thought that in this day and age when the economy is so poor and things are looking so grim it’s easy to get caught up in the “woo is me” and forget all of things to be thankful for. Although thinking this and writing the words were painful I think it had a positive outcome and actually lifted my spirit. It makes me think of how capable I am and refreshed me in my fight to help get these things for my daughter. I hope that whoever reads this is also uplifted and refreshed or maybe you just think I’m completely nuts, either way! ;0)

Running for Rett and a New Venture

I have some exciting news, I have been asked to be part of a Mothers Advisory Board for Girl Power to Cure. Girl Power to Cure is a 501c3 non-profit organization raising funds for Rett Syndrome Research. I am so thrilled to be part of this wonderful company and consider myself blessed to be among such a wonderfully strong and positive group of mothers.

For those of you who are reading this blog but are not entirely familiar with Rett Syndrome I encourage you to check out Annie's page and read our story. For those of you who are familiar with our family and our precious Annie you can no doubt see what Rett Syndrome has taken from her and us, but what you may not know is the amazing hope we have in research. Researchers have found the gene that causes rett syndrome and have actually reversed rett syndrome symptoms in a mouse model. The science is there, but the funding is not!

A friend of mine, my husband and I are currently training to run the Brooksie Way Half Marathon on October 4th. In leu of this new venture with Girl Power to Cure I am asking everyone to consider sponsoring me in the Brooksie Way by donating $5 to rett syndrome research. My goal is to get just 50 people to donate $5 to get us $250 closer to a cure! To sponsor me please go to Annie's Page and click on the "donate" icon.

If we all come together, raising awareness and funds we can reverse rett syndrome in these girls and never again will another family have to feel the pain of this disease.
Thank you!
Blessings.

Science Week

I think I've mentioned before about my little Scientist James. James is not your typical sports loving 5 year old, instead he's into everything science - dinosaurs, experiments, space, robots, etc. He wants to be a researcher when he grows up and is constantly inventing things. This is an interest that I'm embracing and encouraging with James and introducing to the girls. Sooo, this week we went to the Detroit Science Center (twice) and then had fun at home doing all sorts of experiments. Here are some pictures of the fun.
Annie and Gracie playing dress-up: cutest firefighters ever!

James is channeling water with PVC pipe

My little cuties walking through the fire tunnel

Grace and James on the high-low in the engineering section

Annie LOVES the chimes!

Gracie jamming on the electric guitar

James jammin on the drums

I'm trying to pack in as much fun as possible these last few weeks of summer, I'm dreading fall when my cuteies go back to school, this has been a great summer break!

New Therapy

Our PMR doctor introduced us to the Lokomat a few months ago. The Lokomat is a type of therapy that uses robotic legs to perform the action of walking. It's typically used with CP patients to help with their gait pattern or stroke victims who are learning how to walk again. Annie has never walked before but she does walk with assistance and now that she has gained more muscle tone we think this will help get her closer to taking those independent steps. I called last week to get Annie on the waiting list and if all goes well we will be heading to Novi a couple times each week for 8 weeks starting this winter! An added bonus - this therapy is actually picked up by insurance!! I can't even begin to explain how excited James is for this therapy - he is SOOO into robots right now and to think that his sister is going to have robot legs is just the coolest thing! I threw this picture in here just because she's cute!! ;0)

Tigers Game!

When Annie was going through her regression she had a really hard time leaving the house. Crowds and unfamiliar places were really tough for her to handle and she would just grab her head and scream until we made it back home. Today she loves to be out and about, in fact, one of her favorite things to do is shop! There are sometimes when she would rather stay close to home and there are still certain places and surroundings she's not able to tolerate.

We were given tickets to last nights Tigers game (Thanks Caroline!) so yesterday we asked Annie if she wanted to go. Her answer was a definate NO! Hanging out with Grammy sounded much more fun and a lot less chaotic! Which was a good thing because when the 4 of us got to the game we realized our seats were just 4 rows from the tippy, tippy top! I have no idea how we would have gotten Annie and her stroller up there!

Needless to say we had a wonderful time! James has been to a couple games before but this was Gracie's first game and boy did she enjoy herself! I just love the different personalities of my kids - Gracie is my fun-loving free spirit - she was clapping and up and dancing every chance she could get. My calm, reserved James just sat back and took in the game. Maybe one day Annie will feel comfortable enough to head out to a game - can't wait to see what her reaction is like!
Gracie snacking on peanuts!
James and Grace, a little worried about being up so high.
Daddy and James

Gracie LOVED all the music and excitment!

The view from the seats! Astrologer James just loved looking at the moon!

Grace even got James up on his feet to dance!

This was Gracie expression when I explained why she couldn't go down to the field and play baseball with the men.

Trying to catch a fly ball

Zoo

Yesterday the troops and I went to the zoo with my sister in law, her 2 kids and my mom. We had such a blast! There is a temperary dinosaur exhibit that has been there all summer that James has been itching to get to. He just loved it!

The entrance of the dino exhibit

Look out behind you Gracie!James in front of his favorite dino - brachiosaurus

Annie Palientologist Gracie
My beautiful niece Emma!
Gracie and her buddy - cousin Joe!