Alex and Maddy

Alex and Maddy

Wednesday, September 15, 2010

A Heart Full of Joy!

This post has been brewing in my head for the last few days. It is hard sometimes to take my feelings and adequately get them into words to express exactly what I want. But here's a crack at it!

As a little girl, my most fervent dream was always to be a mother. I was the girl who started babysitting at 10. The one who would gravitate towards the babies at events. The day Alex was born not only was the happiest day of my life it also was MY dream come true. Of course, God's plans for my life and the way my dream would play out are a little different then I envisioned! Our house is not like most houses. Our closets are filled with medical supplies. Alex has a refrigerator in his closet full of medications and IV fluids. I could practically run an ER in his room. Our days are full of giving meds and taking vital signs. And yet I strive every day to make life "normal" for Alex. We have a ton of limitations, but I am always looking for ways to push the boundaries. For activities for Buggy and friends and the childhood he deserves. Some days I feel like we do a good job and other days I feel like I have utterly failed. And so as I begged the doctors last spring to let Bug go to school this year which was met with a resounding no, 15 seconds into the conversation by 2 separate doctors, I pondered what we could do. Although Bruce and I are both sports lovers, sports were out. And so I asked about cub scouts and was told we could give it a try with restrictions. And so all summer I told Buggy how awesome cub scouts was going to be. How much fun we were going to have. How cool it was. It didn't hurt that one of his best buddies Walker was going to join him on this journey. And so last week our adventure began....

Kelly and I ventured to the cub scout store last Friday to buy the boys their uniforms. All I can say is thank goodness there are people there who know what they are doing because we were clueless! We quickly realized the pants were a no-go as the smallest size is a size 6 (about 3 sizes too big for Bug). But we gathered everything else. Saturday We got Buggy in his uniform for the first time. And oh my goodness (I know he is mine BUT) he is the cutest thing ever in a uniform!

We headed out to sell popcorn for the first time. As those of you who know him can atest too, he is a natural salesman. He had the other parents hysterical as he convinced person after person to donate or buy popcorn. I mean who could say no to the little pipsqueak with the sweet face. He came home exhausted, but so happy to have made new friends. Friends who were now his best friends forever.

Yesterday, was our first pack meeting. So once again we donned our uniform. He was so excited to see his friends again. His den all sat together. It warmed my heart to watch him make the cub scout sign, stand for the pledge of alliegance, and follow his friends outside to play while the parents met. I love this glimpse into what life is supposed to be. I love to see him enjoying being a kid. I love to watch the joy and excitement as he runs to catch up with friends. I soak in every minute. At times it is bittersweet because I realize how much he misses out on and yet he is so happy and appreciative of every opportunity he is afforded. And so we came home last night with new found friends and a community to belong to. We look forward to our weekly meetings and our upcoming camping trip. (I am still figuring out how I am going to swing 2 days of medical supplies/procedures while camping) And as a Mom I am so very proud of my little man who adapts to every situation and finds so much happiness in his crazy life!

Let's see what else....

School is going awesome! Alex likes his new math curriculum a hundred times better then last years. We have also changed where we are doing school. We used to sit in Alex's room, but he was having a hard time focusing. We have moved to the dining room table and he is doing much better. He enjoys history and already has favorite books. Creating our hideaways (forts) has been a hit. Overall, it has just gone really well.

Medically things are also pretty good. We are waiting on a date to head back to Houston to repeat the MRI and SSEP to determine whether we need to "fix" the syrinx now or just continue to watch it. We have also started the MCT oil to help him gain weight. He is at 1/5 of his dose and has had some minor issues, but we are continuing unless it becomes worse.

Last, Alex is starting to sell popcorn for cub scouts. This is hysterical to me. Alex's first anaphylactic reaction was to corn. Seriously...of all things popcorn sales! Anyway, I am going to attempt to post the link to his page here, but am not sure the shortcut will work. Do not feel obligated, but if you would like to support Alex on his cub scout journey you can click here: If you need his scout id #, it is 7676878.

Thanks for allowing me a place to share my feelings and more importantly my Bug!

PS- Guess who is the proud leader of Den 2....Me!


  1. Oh my God.... he looks sooooo good in his cub-scout uniform. We are so proud of him.


  2. Oh my word, he is the CUTEST thing ever!! LOVING the uniform. I am so glad that he is able to do cub scouts and enjoying it.

  3. Hi Ali, I am Kelli and my boys Matthew and Ethan are in the middle of your popcorn selling pic. Scott is my husband, and I think you may have met him. I am so glad Alex is in cub scouts with Ethan! It's going to be a great experience for everyone. One of the first things Scott said to me when he came home was how super cute Alex was at the popcorn sale! :) Hope to meet you soon.