Where does the time go?

 Seriously...How is it already half way through November. Our days and weeks really do seem so much the same! 

Maddy is busy with school, ballet, art, horseback riding and Hart. Alex is busy with school and gaming. I am busy trying to take care of every one and keep the house running. Bruce is working and trying to rest as he struggles through the chemo.

Overall we are doing well. Bruce is getting ready to start his third (of eight) round of Chemo. The kids are doing pretty well. After much thought and conversation, Alex has made the decision to get braces. It was not an easy decision as he has never really eaten and has extreme nausea and a quick gag reflex. But ultimately this is something he wanted to do so he wouldn't hate his smile. 

This last two weeks has been really hard for me. We have many friends who have tested positive over the past few weeks. Some of these interactions have left me uneasy. One of our fellow mito warriors who is generally one of the healthiest mito kids has spent a week in the PICU fighting Covid. But I have also been disheartened by the lack of understanding and sensitivity to what this disease could mean for my children. I have always said that being the parent of medically fragile children is isolating and this pandemic has just highlighted that once again.  But the blessing is seeing the beauty of true friendships and knowing who truly loves us and has our back. I will not waste time on people who show their true colors of selfishness and instead fill my life and my children's lives with those who surround us with love and hope.

We are continuing to adjust to being back to a one salary family, but I know I made the right decision as I am spread so thin with all that needs to be done to care for the kids with no nursing help as well as clean the house, cook, pay the bills, go to doctors appointments, school the kids and get Maddy to her activities. And we do try and fit in some time each week with Mimi and PopPop!

We are grateful for those that continue to pray for us as we travel this crazy road.

Ali