Village

 I have walked this earth as a mother for the past 21 years and 11 months. And as I have said so many times, motherhood for me is not the motherhood that most people imagine. Our days revolve around doctors appointments, treatments, medications and balancing the cost of truly living with the price we will pay in the coming days through fatigue, pain or worsening medical conditions. Every decision and every activity has a price for my kids and only they can decide what is worth it. But how blessed I am that my children choose to live over and over. They don't back down and they refuse to waste their lives by choosing rest when they could be enjoying their days.

But the biggest thing we have all learned over the years is how important the people who walk beside us are. To have friends, family, teachers, doctors, nurses, coaches and teammates who choose to be in our lives make every cost worth it. It is the people who walk beside us and stand in our corner who truly make the difference. I am so grateful that God continues to put people on our path who encourage us, who love us, who we trust and who offer a safe place for us to be ourselves. Our lives our better everyday because of the people we share our days with. I am forever grateful for those who love us through the good days and the bad days and never stop showing up for us.

Medically, Alex continues to do well. We did make one medication change as he has been feeling a little under the weather for some time and he has also had some low blood sugars which we haven't seen in years. We are hopeful that that change will have him feeling better.  Maddy is a little trickier. She rarely gets relief from all of her "stuff" and it breaks my heart if I'm being honest. With Mito, puberty is always a hard time because it requires a lot of energy from your body and leads to less energy for organs and cells to work correctly. Add to that the temps are warming up in Texas and that also makes many of Maddy's issues worse. Maddy's biggest struggles are always her hypermobility and dysautonomia (POTS and Neurocardiogenic syncope). Her joints throughout her body are so very unstable. Her ankles roll constantly, her knees dislocate daily, her shoulders and hips pop and hurt, her fracture in her spine was caused by hypermobility and her jaw pops out when she eats. The amount of effort everyday activities demand to keep her body from falling apart are great and exhausting. And her dysautonomia causes severe dizziness and lightheadedness that she has to pay attention to so she doesn't faint. It is a lot to manage as a young girl. Added to that her kidney issues make it where her kidneys don't pull acid out of her blood appropriately and acidosis also adds to the fatigue not to mention very uncomfortable bladder issues and kidney stones. We are on medication now that is helping her kidneys. We also learned that this particular kidney disease often leads to worsening hearing loss so her audiologist is closing watching her as well. The barn and dance are truly her escape and the only time when she can shut off the worry in her mind. I am SO grateful that we have people, places, and activities that offer her a reprieve. Not to mention her horse. Newman has been the best surprise. He has wiggled his way into her heart from the very first lesson.

Please continue to pray for the kids and their health. Thank you for being our village.

Ali

Summer Time

 The end of the year is always so busy as we wrap up all the activities of the year!

Alex finished his semester with incredible grades and so many fun memories made with friends over the past few weeks. He had several dinners out with his best friends and teammates. He has made such good friends at DBU and knows he found "his" place. When Alex first brought up wanting to attend college he was dead set on TCU. When his early application to TCU was deferred he begrudgingly went to visit DBU. We have seen God's hand in this whole journey. He didn't want to visit, but walked off campus knowing it was the right place for him. We spent many hours in prayer for God to move mountains because we knew financially it was not possible. And God answered that prayer so clearly. At every step we have felt his presence and Alex has grown so much through this experience. There are never enough words to describe how special this time has been and how he has been held through it all by caring professors, amazing friends and a loving God who always makes a way. I cannot believe next year will be his senior year!

My Maddy Moo keeps the two of us oh so busy! We have officially finished 6th grade and have planned our curriculum for next year. She is preparing for our big summer horse shows. She is also wrapping up her year in dance and will be dancing in 3 dances in the Spring Recital. But as if that wasn't enough she stepped up to dance in church yesterday with the Children's Choir. While I am tired most days, I love all the time I get with my girl and watching her live her life exactly as she chooses. I am so grateful for Joli, Mandy, Keeya and all the barn family for pouring into her and helping her feel safe and loved so she has found her voice and knows she can share how she feels with repercussions. This sweet girl has had a rough year medically but you would never know it because you would be hard pressed to ever hear her complain. I love her toughness and her determination and perseverance, but it worries me at times because I have to really pay attention to know when she isn't feeling well because she will not quit on herself or her coaches. She has the sweetest friend at dance, the barn and church, but her best friend will always be her brother. The change in horses six months ago has been incredible and she is so in love with Newman. He is the sweetest cuddlebug and such an agreeable horse. He makes barn days so fun as he is happy to do whatever is asked of him. Maddy has the biggest heart for her animals and they feel it and want to please her. It is so much easier for her because humans want words and animals just respond to her without the need for verbal communication which is always her preference!

Sweetest Boy ever

Maddy helped take Newman to the vet

Year end Champion in 2 Classes

While the days are long, I am so grateful I have had the blessing of being by my kids side for every moment of their lives. I love being "their" person and always being their to cheer them on and support them on the good days and the bad. What a gift it is to witness these kids and the lives they live. They are such incredible examples of what it looks like to live a life of faith, joy and love. I wouldn't trade it for the world.

Ali