Battles against terminal illness, anxiety, and life!

Present

There has been much angst in the national media lately. I have no intentions of going there despite many folks asking the white couple with the brown child to weigh in. Instead I would like to focus on some of the really amazing things happening in our world.

A few weeks ago we had family portraits taken by A Pure Focus. They donated their time and talent to capture precious family photos. Capturing the love this little family shares is truly important to me. As a family we often sit and flip through older photos. Thank you to this amazing organization and its awesome volunteers!

Braden took a trip with his Papa to Missouri to see our family there. Braden was so proud of himself for not only leaving home without his parents but for teaching his Papa that chest physical therapy requires two hands! Of all of his favorite stories, he has told that one numerous times. It dawned on me that it was one of the first instances where he felt HE was in charge of his own medical care. He now has a new cough assist device. This machine weighs twenty five pounds! However, it has been an amazingly helpful machine. He also performs this task on his own. We are feeling mighty proud of Braden!

Yesterday ground was broken on Braden’s new handicap accessible bedroom and bathroom. I was so thankful that I didn’t cry in front of the plumbers or our general contractor. My husband and I are overwhelmed with the amount of gratitude we feel. There have been many volunteers that have gotten us to this point. Many folks have donated time, supplies, labor, and funds. From the kindergartener who brought in a dollar for a Team Braden bracelet, the church volunteers who raised sheds and are helping with sheetrock, to all of the men and women who are helping construct this new space, we want to say thank you. We will post a video from Braden in his new space when this project is completed with his special thank you!

Today we go to the Huntsville Museum of Art for an art lesson for Braden! They have donated time and talent to cross a wish off of his Bucket List. He is excited about today! He will have an art showing on the 31st of this month from 4-5 pm at the museum if you would like to attend. He will officially become a “real artist!”

We are staying in the present. We know that this year will hold more challenges that we will not be prepared to face. We know it will take courage, patience, strength, and love to make it through them. Braden’s legs will continue to give out with some nasty falls. We know this. We also know that there is no way to emotionally prepare. We know that Braden’s first power wheelchair will be arriving. We also know that there is no way to emotionally prepare for that. We know with heading back to school will come a dip in his health. There is no way to emotionally prepare for that either. So, here we sit thankful for today.

I promise to follow through on a post of a typical day of caring for a child with A-T. Until then, I have some snuggling to do this morning!

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