Mitochondrial Disease Awareness Week

 I haven't sat down to update the blog in a while and how appropriate that today is the start of Mitochondrial Disease Awareness Week! 

At one point in life I would have known exactly what day it started and have been thinking about what I would say. But these days as much as Mito is a part of our every day, it isn't constantly at the forefront of my mind like it once was. I wish I could go back 20 years and reassure my younger self that we would be okay. It is a strange existence I live in...In so many ways our family's life is so very different than the typical family and yet my wants and desires are really not that different. I dreamed my whole life of being a mother. It was all I wanted and it surely hasn't always been what I imagined. But what a blessing it has been. My goal as a mom has been to teach my kids to lean on their faith, to choose joy and see the positive in every situation and to be kind to everyone. All of those are so much easier said than done, but I am watching my kids live this out in such a beautiful way.

Alex is an absolute miracle. He should not be with us. He has battled through sepsis, pancreatitis, adrenal crises and liver failure more times than I care to think about. He has organ damage in every organ of his body and yet he is truly shaping a life of love and service. The word proud does not even begin to my feelings about Alex. He has taken a really hard life and turned it into a beautiful story. He has always had a heart to serve and his life has given him the platform to inspire others. Alex has told me countless times that he would never change his life (as hard as it has been) because it has shaped him into the person he is today. He recently took a strengths inventory for one of his classes. His top five strengths were love of learning, honesty, love, kindness, teamwork. It is pretty much spot on. Watching him put Faith first and love the people around him has truly been the greatest joy. You can not spend time with Alex and walk away the same. I thank God all the time that I was chosen to be his mom and have a front row seat to see him be a light in this world. And as amazing as he is to everyone, the love he pours into his sister is so amazing. I could not imagine a better big brother.

Alex's first day with one of his favorite professors!

Alex holding Maddy's hand while they pray

Maddy is equally as amazing and I LOVE this stage of parenting her. In some ways my kids are similar,  but in so many ways they could not be more different. Where Alex is loud and chatty and demonstrative, Maddy is so much more quiet in her faith and her loving. While her challenges are not always as visible she has battled more than almost anyone could imagine. But you never hear her complain or make excuses. Maddy is truly gifted in so many ways. Her ability to work with animals and have them trust her is incredible. And like everything else her faith is "silent", but she is the one we all ask to pray for us. Alex refers to her as his "prophet" because it seems as if Maddy prays the prayers are answered. When she was little she told us she's a "private pray-er" and it is true. She won't pray out loud, but she will always take the time to stop and pray if you ask her. And because Maddy is so quiet when she trust you enough to chat and laugh with you and especially sass you it is extra special because you know you have earned her trust. And while she always wants me close because she doesn't want to be forced to talk if she isn't comfortable she is actually way more independent than Alex was. She is the hardest worker I have ever met and she will do anything for those that love her. And while she isn't as openly affectionate as Alex, when she loves you she is not afraid to show you that love and she gives great hugs. Her and I spend so much time together and she has truly been so easy lately. We listen to music, chat and just enjoy our time together. 

1st day of 7th grade

This relationship is truly special

We love our Tuesday lesson buddies!

We are all back in the full swing of the school year. Alex is taking a full course load and is captain of one of the esports teams as well as helping with community outreach. Maddy is busy with dance, horseback riding, her youth group at church and school. This has been the best start we have had to a year as she is extremely cooperative and we are knocking out our days pretty quickly. Medically we haven't had many appointments as we are focused on starting school. I had a minor surgery at the beginning of the month, but am healing well and it really hasn't slowed me down.

And so for Mitochondrial Disease awareness, I would say while mito has stolen so much from my kids, it has given just as much...an appreciation for each day, a love of life, and the knowledge that the people who are a part of your life make every day worth living.

Ali