An Amazing Weekend

This past weekend we were blessed with an incredible family weekend that was more then I could have hoped for. Alex has been in Occupational Therapy since he was 18 months old and physical therapy since he was 3. The majority of our therapy has been done through Our Children's House at Baylor. Two years ago, we learned that they run a family camp every September. We applied, but were placed on a waiting list. Last year, Alex was in the hospital in September and was not doing well so I didn't apply. This year I was sure to get our application in early and we were selected to go! We eagerly anticipated camp, but were unsure exactly what to expect.

The view from our cabin

 

We left here Friday afternoon and headed two hours south to the middle of nowhere! Once we arrived, we checked into our own cabin and got settled before dinner. At dinner, we hooked up with the three counselors who were from our therapy center. After dinner there was time to mingle and play in the sports barn. We also got to sign up for our activities for the weekend.  We didn't really meet any other families Friday night.  Saturday after breakfast we headed to the ropes course for our first activity. Alex's only other experience with a ropes course wasn't great. We went to mito camp a few years ago and kid after kid climbed the rock wall and rode the zip line down. Alex climbed about 2 pegs and was too scared to continue. I gave him a big pep talk about how brave and strong he is and held my breath. I could not hold back my tears as my sweet boy conquered his fears, climbed the tower and rode the zipline not once, but twice. The support from the other families and counselors was great. They cheered him on the whole way.

 

 

As the day went on we got to paint pottery and make a platter for our family, enjoy arts and crafts and swim. We also got to meet some of the most incredible families and hear their stories.  Late Saturday afternoon was swimming time. Alex was so excited because there was a diving board and he has never been off a diving board before. As we got ready to get in the pool, the camp director let us know that anyone who wanted to go off the diving board would have to pass a swimming test consisting of swimming the width of the pool 3 times. As most of you know, Alex struggles quite a bit with endurance. I was really worried, but he has worked so hard on his swimming this summer. Alex was the first one in the pool to test and with a host of cheerleaders, my baby PASSED the swimming test. I cannot begin to tell you how proud I was of him. He spent the next hour happily going off the diving board!



 

 

This weekend was about so much more then us just having fun (which we really did). This weekend was about watching my boy make friend after friend. Watching him just get to be a kid. It was about watching him charm all the counselors and staff. I loved the fact that he doesn't see disabilities like so many of us do. That it doesn't matter to him whether someone limps, has trouble talking or is in a wheelchair. To him they are just friends. For one of the only times in his life, this weekend he felt "normal".  For me, I was amazed by some of the stories...a little girl who fell from a play structure and shattered 3 vertebra in her neck. She shouldn't be alive and yet you would would never look at this beautiful girl and know she was any different. The little boy who had a massive stroke 3 years ago, but was playing basketball and bowling with Alex. The girl who had half of her brain removed to stop her seizures, but is walking and talking and Loves sparkles. The little autistic boy who didn't want to do anything, yet with his Dad's help he managed to climb the rock wall. The little girl who lost her leg and her Dad in a car accident , but was never without a smile. This weekend was miracle in so many ways and I am so grateful we got to be a part of it!

 

 

Once again we have a busy week this week. My sister and Skye are coming to see us on Thursday! We are so excited. It has been way too long! We will have a fun weekend hanging out with them.

 

 

We continue to pray for Bruce to find the perfect job. As the weeks pass on, the worry creeps in. I have faith that the right job is right around the corner.

 

Ali

 

 

PS:Over the past few years many of you have supported Alex in his Popcorn sales for cub scouts. Both of his first two years, he has been top salesman for his pack (about 80 kids). He has once again set the goal to be top salesman. If you would like to support Alex in reaching his goal, please go to http://www.trails-end.com/shop/ In the top right hand corner, it says you are supporting no one. If you click on change, you can enter Alex B and our zip code (76244) and the sales will go to his account. Thanks!







A Hard Week

This is a week that always sneaks up on me and leaves me unsure of what to say! Six years ago I had never heard of Mitochondrial Disease. I could not have told you what Mitochondria were. And yet, Mito has become the central driving force in our life. When God blessed us with Alex 8 years ago, we could not have pictured this life. No one would choose this life and yet it is our life and we have found joy in our craziness. Our days are filled with feeding tubes, with central lines, with shots and infusions and meds. We spend our days in doctors appointments and therapy and often in the hospital. Our lives are filled with so much more. I get to spend my days surrounded by my sweet boy. I live with a child who always has a smile on his face. Whose laughter can put a smile on my face. A child whose bravery and courage are inspirational. I get to spend my days with a boy who is kind and caring.
I have seen firsthand in the last year what research and advancements can mean to these kids. One year ago Alex was accepted into the study at Stanford University. The results have been phenomenal. The new medication coupled with starting immune replacement therapy and closing a hole in his heart have transpired into the best year healthwise that Alex has seen since he was a baby. Research can change the outcome for these kids. A year ago, I could not think about the future. Now I can look into the future and hope!

 

 

 

As we get back into "real life". We are jumping back into school and cub scouts. Over the past few years many of you have supported Alex in his Popcorn sales for cub scouts. Both of his first two years, he has been top salesman for his pack (about 80 kids). He has once again set the goal to be top salesman. If you would like to support Alex in reaching his goal, please go to http://www.trails-end.com/shop/ In the top right hand corner, it says you are supporting no one. If you click on change, you can enter Alex B and our zip code (76244) and the sales will go to his account.

 

Thank you for the love you continue to show to our family. We ask that you continue to pray for Alex's help as well as for Bruce to find the "right" job.

Ali

Lots of Pics

We have spent the last 2 weeks surrounded by family and friends. I truly have been blessed with some of the best friends any girl can hope for. Each of the last two weekends and again this coming weekend my girlfriends have travelled hours to come see Bug and I. We are having an incredible time. My sweet boy has been grinning ear to ear. I decided pictures were the best way for you to experience our fun!

 

I have a few more that won't load so I will make a facebook album!

 

Ali