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

NSBA World Show 2026

 This past two weeks has been long, full of really high highs and some lows, but what a gift to be living life each day with the people you love and a horse by your side. It is often so hard to put into words what it means to compete at the World Show level. The days often start around sun up and many nights we are not back to the hotel till after dark. It is hard to explain to others what horse show days are like. The days are long, but there is a lot of sitting around waiting for your time to practice or show. It is in those quiet times that many friendships are formed and relationships grown. The Equestrians with Disabilities group is really special. They are amazing equestrians and compete at a very high level, but despite tough competition they are also the best cheerleaders and supporters. We compete against the same riders and barns all across the United States and the riders become friends over time. These equestrians are so kind to one another and are happy for their competitors who just beat them in the show ring. The athletic world could learn a lot about sportsmanship from these riders.

We arrived in Tulsa on Monday August 10th and had several practice days. While it is always hot in Tulsa in August, it was absolutely brutal this year. Mandy chose to focus on Showmanship as many of the riders were struggling with the pattern. Maddy and Newman did not have their best pattern as Newman was being stubborn, but they finished with a reserve world Champion title. What a way to start the week! I LOVE to watch Maddy do Showmanship. Her poise and her body positions are so sharp. I always attribute it to her years of dance.

The next two days were a bit rough for Maddy. She made the decision to do Western Pleasure, but they had a large class with 21 in the arena at once. Mad got caught in a group and boxed in and wasn't able to get Newman to listen to what she was asking of him. Sunday was her hardest day. The day started with a practice and it did not go well. Maddy was feeling very discouraged and their were many tears. She never cares about placings, but she always wants to do her best and she was so upset that she wasn't communicating well with Newman. She did not want to go into the show pen and not perform well. However, she did pull herself together and show, but it was far from her best. And the long day of Western left her with her back hurting.

Monday was trail day. Maddy has not loved trail for the past 4-5 years, but Newman is very good at trail and he does love it. Maddy and Newman have done great in trail all year and with the right partner she is learning to enjoy it. They rode an absolutely beautiful pattern and she was so happy for her good friends who placed in front of her! Monday was also family award day. Because many of the riders do not finish in the top 10 at this show, Mandy and the other coaches always do family awards. The riders all look forward to it. Maddy won the partner/love your horse award for spending the most time in her horses stall loving on him. Can't think of a more perfect award!

Tuesday was another good day. Anyone who knows Maddy knows that English is her favorite so it is always fun to finish with your favorite classes. The first class was Hunter Under Saddle and the class Maddy and I felt most proud of when all was said and done despite finishing dead last. At our last show, Maddy let Newman misbehave during this same class and when we got back to the barn we learned that she had been given wrong information about what is allowed. On Tuesday, she went in to the show pen and rode her heart out and made every correction she needed to. It was a 180 from Palomino worlds and I was so proud of her for making the changes she needed. The last class was Hunt Seat Equitation where they ride an English Pattern. Once again she rode beautifully and walked away with a 4th place finish.

NSBA World Champion Show is our toughest/ most competitive show of the year and the riders all feel the added weight. I couldn't be more proud of my girl and how she handled the week. There are often tears and frustration, but also so much encouragement and so much laughter. There are friends who are teammates and also friends who are our toughest competition. Through it all I see the dedication and the spirit of what it means to truly win. The cheers for your friends who have beat you and the pride for a good ride even when the results weren’t what you hoped for. And mostly I am grateful for a barn family and coaches who make Maddy feel seen, safe and loved. Maddy is a completely different person than two years ago. This group has really helped her come out of her shell and more and more often they see her fun, silly, sassy side. One of my favorite parts of the week each year is getting to see one of my high school best friends!

If I am being honest, Maddy is a little burnt out on horse shows right now and ready for a well deserved break. Maddy has shown every month since January and most of those shows have been World Show level. Maddy loves riding and time with her horse, but doesn't always love the monotony of practicing the same patterns. She is excited to have a bit of time to just ride and focus on jumping as she hopes to attend her first little hunter/jumper show this fall. (Which she is VERY excited about).

Monday brings the start of school for both kiddos. Alex will be starting his senior year at DBU, which doesn't even seem possible! And Maddy and I will be starting 7th grade at the Beckwith Academy of Excellence. She helped pick her curriculum and we hope to have a good year.

Medically we had a gazillion appointments this summer for both kids. Overall, everyone is thrilled with how Alex is doing. My Maddy Moo has been keeping us on our toes, but we seem to have a good handle on most issues right now. Her biggest issues are always her autonomic nervous system which does not work and leaves her vital signs all over the place and her dizzy and lightheaded. And those stinkin joints which never seem to work correctly. Just this week she rolled her ankle again and has a hug bruise to show for it. And she has had fun harassing me and Alex with her finger that bends almost backwards. We did have an encouraging appointment with her orthopedic surgeon yesterday. After being told all year that her first knee surgery was a must this fall, the orthopedic surgeon is okay with postponing longer. Her knees dislocate over and over, but they are so unstable that they actually don't hurt as much as her back and ankles. She is not causing any damage so the surgeon feels like their is no rush. When they start hurting, causing damage or preventing maddy from doing what she wants he will take her to the OR immediately. It has always been a when not an if. Now we need to get her PMR doctor on board as she did not want us to postpone any longer. We will see her in October and discuss again.

As for me, I had an endoscopy and colonoscopy this past month as I was due due to the findings last time. The colonoscopy was all good so I can go 5 years. Woohoo. My Upper GI system is still a mess. I had gastritis, esophagitis, duodenitis and an active ulcer which explains why i continue to have pain when I eat. They have scheduled a repeat endoscopy in October to see if it looks the same, better or worse and make plans from there. I also have another procedure this month. Thank you for those who have continued to pray for me over the past few years as I have navigated my own health issues.

I believe that is all. We would appreciate prayers for continued good health and a great year of school.

Ali

The End of Summer

 It is crazy that summer is already coming to a close. We have had such a good summer. The kids have really enjoyed their time together. I am pretty sure they watched a movie almost every single night all summer long. I said this on Facebook a few days ago, but the relationship between my kids is so very special. they are truly each others best friend and biggest cheerleader. Maddy told me she has three best friends and they are all boys: Alex, Hart and Newman. She is exactly right!

Alex finished his Internship with an A+. He is gearing up for classes. He has three in person classes and three online. This semester will find him applying to Grad school and graduation. I am not sure how we are here, but what a gift it has been to watch Alex navigate these past few years. He has already been asked to do an internship with another Doctor and the Pain management group wants him to let them know when he is finished with his masters because they would like him to come work for them. It would be a dream come true for him to work for the very hospital that has been his second home and poured into him for so much of his life. Medically, we saw almost all of his doctors this summer and everyone is thrilled with how he is doing. 

Maddy has been preparing for her last show of the summer. This show is a big one and we will be gone for ten days. And when we get home we jump right back into our fall schedule. We will start school, tutoring, ballet, youth group and of course lots of time at the barn! Maddy has also had a lot of appointments and we continue to navigate some health issues and find the best way to support her body. She has definitely used the slow afternoons in that way as she is napping for 3-4 hours every afternoon. Puberty is hard on Mito and I'm glad she is allowing herself time to rest. This show will be her last for a while as we plan to have the first of her knee surgeries this fall. We have put this off as long as possible and we have had a few doctors let us know we can not delay any longer. We also met with a new dog trainer this morning as we would like to get some more training for Hart so he can help Maddy in more specific ways with her health issues. We loved the trainer, but would appreciate prayers for the financial piece to come together so we can pursue this additional, much needed training.

I have also been back on the medical merry go round this past few weeks. I had kind of just accepted my new norm and been trekking along. However after some appointments and testing we are likely going to be making some changes again. I saw my rheumatologist and was surprised when he added anew diagnosis. He diagnosed me with Psoriatic Arthritis and Achilles Tendinitis and I need to be icing my Achilles (especially at the horse show) because I am at high risk for it to rupture. I definitely don't have time for that so i am trying to behave myself. I also had an endoscopy and colonoscopy. The colonoscopy was good (praise God!), but the endoscopy not so much. I have gastric ulcers, inflammation in my esophagus and duodenum. The doctor was very concerned as we have done all the "usual things". She is consulting some other GI's to come up with a plan and I have to have a repeat endoscopy in 2 months to be sure I am starting to heal. No wonder my stomach hurts every time I eat!! Then based on some issues I needed a uterine biopsy and will be having a procedure or surgery depending on those results. I would appreciate prayers for all of this to come together as easily as possible as we are trying to live our best life over here and don't want medical stuff to interfere!

Please pray for my health, safe travels, a fun, stress free horse show and start to the school year, and the financial ability to train Hart.

Thank you for being our village.

Ali

Blessings All Around

 Some weeks it is hard not to look around and seeing how blessed we are! This has been one of those weeks. It is not as if everything went great because lets be honest, when does that happen in real life? It was more that I was constantly reminded that God hears our prayers and always makes a way, even when we least expect it.

There was some of our usual stuff....Alex's internship, doctor's appointments, movie watching, family game night and lots of barn time. That alone was all good. Nothing huge from the doctors appointments a few med adjustments, but basically keep plugging away. The only bad/scary was for Maddy early in the week. She had an ocular migraine and the vision changes were very scary. I was glad I had had one once, but we still had to rule out some things that are a much bigger deal that are seen in some of her diagnoses.

I don't think we could love him any more than we do!

Sunday night, the kids and I headed over to church to meet our new Director of Youth Ministry. I have to admit I was a little apprehensive because he is a middle aged man, but he totally won me over. I loved the answers to all of his questions and look forward to having him shepherd Maddy over the next few years. During this meet and greet, they separated the youth from the parents. As soon as they said that was the plan, Maddy started to panic. There were tears and a look of fear, but I handed her off to our Director of Children and families and one of her closest friends at church and stepped away. She did great and when we got in the car she told me something that shocked me. But also may be the thing I have been most proud of in her whole life. When they sat down to eat she was sitting with her good friend and another girl. She realized that another incoming 7th grader was sitting alone so she got up and left her friend and went to sit with her so she wouldn't be alone. Then all 4 girls wound up sitting together. But the kindness and bravery it took for Maddy to leave her comfort zone is astounding. I have always taught my kids that nothing is more important than being kind and serving God and what a beautiful example this was.

Tuesday Alex received a call from one of the scholarships he had applied for. It was a scholarship for students diagnosed with Epilepsy. I really didn't feel very confident because Alex's epilepsy is very controlled. They let him know that they had a few more questions they needed an answer to before they could move to the next round. He was set to call them at 12:30 on Thursday. When I picked him up from his internship (which he is loving) at 12:00 they were already calling. They surprised him...he was one of four to win the top award out of six hundred applications. This scholarship is so timely and so necessary as we were worried about the financial peace for school this year. We aren't totally there, but this is a huge step in the right direction. And an answer to prayer. Not only me, but two of my good friends had been specifically praying over this. What a loving and faithful father we serve.

Thursday night we got to celebrate Alex's good news by attending Hamilton! I have heard so much about it, but it is a show I had never seen. The kids and I enjoyed it immensely. And I love these days of just spending time together and enjoying each other. Oh how I prayed for days like this when the kids were younger and so medically unstable. While the diagnosis and the prognosis doesn't change having a bit of "normalcy" is such a gift and certainly one I wasn't sure I would ever experience.

None of these special moments happen without the friends and family who continue to love us from near and far. Some we are lucky enough to see almost daily and some far less frequently but we couldn't do this alone. We are so grateful to be loved so well.

Thank you for being our village and the hands and feet of Christ in our life.

Ali