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
