Battles against terminal illness, anxiety, and life!

Some Days

We have had many tests going on over here. I will do my best to put a page at the top of this site to describe what is going on with them. I hope it helps!

This has been a beautiful weekend! Yesterday we went to the pumpkin patch and had a great time with friends that are really more like family. We laughed, we picked pumpkins, went down slides, and snapped nearly a million pictures. In essence, we were like every other parents doting on their children. The noticeable differences didn’t trouble us as much this year, as we are adjusting to our new normal. We pushed Braden this year just like we have every other in his medical stroller. He needed more assistance while walking, climbing, and getting around. Think about the level of assistance you would afford your elderly grandparent. Thankfully we were coughing fit free, no vomit, and better energy than normal! We feel thankful for weekends like this. We treasure all the good we can squeeze in!

After napping for nearly an eternity on Saturday, Braden came up to me and simply stated with his big lopsided missing two front teeth grin, “Mommy, I am going to be a teacher when I grow up like Miss W.” I couldn’t help but smile. He has such affection for the people at his school. I know he feels accepted, respected, and included there. “That’s a great idea Braden! You will need to work really hard in school to be a teacher like Mrs. W.,” I remind him. “Ok Mom!” he spurts out before tearing away to join forces with his sister is some sort of conspiracy. It is only then that I take sever deep breaths. When he grows up…when he grows up…While I hold on to hope that there will be a cure for A-T, the reality is there is most likely not going to be one in his life time. How I wish with everything a mother has in her that I will see a cure for it sooner rather than later. The very harsh reality is that despite my reminding him that he will need to remember to bring flowers for his girlfriends, to hold the door open for his future wife, and that one day his children will refuse to brush their teeth and be forced to do it anyway too, none of those things will likely ever happen. Yet, we must hold on to hope. We must live like it is a given that it will be in his future. Some days are just easier than others to do that.

So, we barrel on. We hold our chin up high, do our best to make wise decisions, and remember that he is a five-year old little boy with an adventurous spirit and filled with love! We live in this moment and do our best to cherish it all.

Next up? Sleep study on the 2nd of November and some really icky tests on the 14th.


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