Family Time

 What a busy, but fun few weeks! I swear the time just flies by so quickly. I am trying to soak in all the memories of this stage of life. These are the days I prayed for so many years ago! 

As always there were lots of barn days, dance and school with some doctors appointments sprinkled in. It has been so fun watching Maddy and Newman really grow together. They have set some new goals for the coming year. She has also been working really hard in ballet and they are beginning to work on double turns and some harder combinations. 

Maddy and Nayeli have been working so hard in ballet!

And then this past week we had Bruce's parents visiting and we had so much fun! We did a Scavenger Hunt in Fort Worth, visited the Stockyards, attended a DBU soccer game,  went shopping, ate lots of yummy food, and just enjoyed time together!

And then yesterday we received word that Alex had been admitted to the Grad school at DBU!!! 

These days are such a gift! I hope I never lose sight of how special it is to be in this place with these people. Thanking God for the miracles I see each day!

Ali

A week of Fun

 This last week has been so much fun as it included lots of adventures outside our normal!

Of course we had our usual activities...schoolwork, dance, barn, esports, etc. and while we love all of that. It is fun to liven things up at times and throw in some new fun as well!

Alex and some of his teammates having dinner after a match

The kids saw a few movies at the theaters. Bruce and Alex saw a DBU soccer game together, and we spent some time thinking of how we would like to celebrate Alex's graduation in May!

Maddy and I had our first field trip of the year and planned a visit to the Dallas World Aquarium with some good friends.

Maddy has danced with Ms. Joli's Cottage School of Dance since the Fall of 2020. Ms. Joli and her whole family are so important to us. When Joli started her program she wanted to form a community and boy has she done that. Joli turned a bedroom in their house into a dance studio. So for the past 6 years Maddy has spent countless hours in the Drain's home. Joli was one of the first people that saw Maddy's true personality. Maddy is so comfortable with Joli that she is just relaxed and herself in every way. Joli has poured so much into Maddy over the years and I am so grateful for yet another faithful, kind, loving woman who loves Maddy and makes her believe in herself. Joli's program is one that encourages creativity and allows the students to participate in every aspect of the recitals. they help design and create sets, have input on the choreography and costumes. Through this program Maddy's love of dance (especially ballet) has grown year after year, but more importantly her confidence and leadership have grown as well. The entire Drain family is involved in the program and Joli's oldest daughter, Laurel always takes pictures and videos. I had asked her a while ago if she would be willing to take some dance pictures of Maddy and that happened this week. Laurel sent me a few sneak peaks and they are beautiful. I can't wait to see the rest!

Our week of fun culminated last night with a night of worship at the Phil Wickham concert. It is always special to be in a huge group worshipping together, but especially to watch your children praising God.

I love these days so much! 

Ali

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