I will get to what I want to share about the kids, but first I need to address something that some may not realize. To my fellow medical warrior moms this may hit close to home so tread lightly!
It has come to my attention that there are some people in my life who have decided that I have an eating disorder and am just choosing not to eat. First, this could not be further from the truth. I am someone who has LOVED to eat my whole life. I often would wake up and plan what I wanted to cook and eat for the day. I loved to go out to eat. When Alex couldn't eat, we created traditions to still include him in mealtimes. So, for those who are clearly misinformed, I would like to explain a bit about the medical system and how harmful these kinds of statements are to families who are struggling through medical challenges.
I have spent more time navigating the medical world over the past 19 plus years than most could even imagine. Alex turned blue and broke out in hives the first day I brought him home from the hospital. Not only have I managed to fight and advocate for my children and keep them alive against pretty dire odds, but I have been recognized as someone who is able to navigate the system with intelligence and kindness and respect while fighting for answers. I have sat on multiple hospital committees over the past 10 years, and I have worked as a patient advocate helping others learn how to push through a system that is often broken. Alex was VERY ill, and we had virtually no tests come back normal, yet despite this it took us 3 years, 9 months and 6 days to get a diagnosis and many more years to find more diagnoses and treatments to even begin to find some stability and a life that didn't mean living in the hospital. When Alex and I travelled to DC in 2018 with the CEO of Cook Children's it was to try and get a bill passed that would allow families to travel across state lines when necessary for diagnosis or care that they couldn't find locally. Because answers don't always come easy. I could easily name close to 10 families who have lost children who are "undiagnosed"; one just this week. So, while I don't have clear cut answers yet, it does not mean I am just choosing not to eat. There are some pretty scary ramifications to making these assumptions. I cannot tell you the number of families I know who have had their families ripped apart because when answers are not easily forthcoming some doctors decide the families must be harming their children. (This does happen on occasion, but more often than not it is a false allegation). But for my situation specifically, I would like to remind you that I am raising a young girl who is quiet and sensitive and extremely observant. She has heard comments and conversations and while my health is already worrisome enough to her, she also lives in a world where young girls struggle with body image, and she does not need to even consider that as an option.
So, for those to who truly care and are interested in truth, I will update you on where we are with my care. I am healing well from my thyroid surgery and swallowing is no longer an issue. Most of my doctors at this point feel like Crohn's disease is the most likely diagnosis for my GI symptoms. However, it is also not easy to diagnose. My last 2 abdominal CT's have shown gastric wall thickening which can be a result of gastritis, Crohn's, or cancer. We are working on getting further testing to determine next steps. Insurance has been difficult to say the least and we are having to fight for approvals at every turn. The test my GI would like is a camera that you swallow that allows them to see the entire GI tract. He has a peer-to-peer review scheduled on Monday to speak to a doctor at the insurance company to try and explain why this is the best option. My PCP has also had me do a cancer screening that can let you know if you have positive markers for over 50 kinds of cancer and if so, which tissues need to be further examined. I continue to struggle with severe pain and nausea and am trying to push past that to get calories in as I cannot afford to lose any more weight.
Now for the update I really wanted to share...
Alex is finishing up his last few days of his freshman year at DBU. As I have shared many times over the past few months this year has been transformational for him. As a mom, my greatest hope and dream has always been that Alex is loved for who he is, and that God uses his life to for his glory and to show others what joy found in Christ looks like regardless of circumstances. While some of these dreams have been realized earlier in life, this year I have seen this come to fruition more than I ever imagined was possible. At DBU Alex has been seen and accepted and loved exactly as he is. He has known this type of love through his playgroup and through our church, but to see him jump into a new environment and be loved so well is such a blessing to me. Alex has had multiple professors pull him aside and speak of his attitude, his determination and his willingness to push through despite everything he is challenged with. His friends have been there for him to help him learn how to navigate school, to support him through the incredible losses of Zoey and PopPop, to pray with him and to enjoy good times and laughter. Being a part of a living learning community has been such an amazing experience. He lives with his housemates, they eat meals together, worship together, do bible study together and support each other through the ups and downs of life. I love that he is seeing what true friendship should look like and that he will continue to seek that throughout his life instead of just settling for surface level connections. Alex has chosen (and was accepted) to stay in a living learning community again next year. Initially he didn't think his closest friends would be with him, but surprisingly his best friend was admitted this week after someone else dropped out. I have loved watching and hearing about every moment of this year and cannot wait to see what the next several years hold for Alex.
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| Alex and Will, the director of Stone House |
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| Alex and Chris, the director of Ford Village |
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| Each Stone House resident was given a rock with a word and bible verse by their mentor. Alex's word was Eager. |
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| Alex and his best friend Jacob |
As for my Moo Moo...she is also thriving this year. For her this year has been a year of growth as well. For the first time she has not lived in the shadow of her brother and his big personality. Despite missing her brother and best friend she has found her voice and independence a bit this year. Maddy has thrived in the quiet, calm that defines our home these days. We have seen her desire to be her own person and to make her wishes known. My children could not be more different in personality. My Moo is quiet, but she is by far the hardest worker I know. She has no quit in her. She is fiercely loyal and loving and determined to do her best no matter how hard things are for her. I have loved this one-on-one time with her as we enjoy talking, watching shows and seeing her chase her dreams. She has set some pretty lofty goals for herself and has worked tirelessly to try and achieve them. Maddy's teacher has pulled me aside multiple times this year to tell me how impressed she is with her and her work ethic and how she is coming out of her shell. Maddy has multiple "shows" coming up. Next weekend she will perform with her Church Choir in a musical based on Daniel. The following weekend she will be competing walk trot independent for the first time at a show away from our home barn. She has worked tirelessly to improve her assertiveness and control over PD and that hard work is paying off. Then June 1st she will participate in her dance recital in both ballet and tap. In true Maddy fashion she has chosen to work through a curriculum of Equine Science this summer instead of just relaxing...
We are so incredibly grateful for the village who have surrounded us in love and prayer. The people who walk beside us are what give our days meaning.
Ali
