It is crazy to me to think that in less than a month the kids will be back to school! Alex is excited to start his Junior year at DBU and Maddy and I will begin our first year of Full time Homeschooling! We are excited to work with curriculum we have chosen and move at a pace that is best for Maddy! The kids have really enjoyed their time together this summer. From movie nights, to sleepovers, to vacations and just hanging out they have spent so much time together just enjoying a slower pace and time with each other without the stress of schoolwork and countless activities.
I am overdue for a medical update on everyone, so here we go!
Alex- Overall, Alex is doing so well. It is such a blessing to see him doing so well after so many years of uncertainty and being so, so sick so much of the time. His medical care will always be far more than the "normal" person could comprehend, but he takes it all in stride and continues to live a life focused on his love for others, his faith and his infectious joy. We try not to make him miss class for medical appointments and with 15 doctors that is not an easy feat, so summer and his breaks for school wind up with so many appointments. He has had multiple appointments each week this summer, but all of his doctors are extremely happy with where he is right now so we really haven't changed much! Alex is such a special human and I love our time together from deep discussions on faith, philosophy, politics and so much laughter as we walk through our days. My relationship with Alex is not like any relationship I've experienced or witnessed. It is born out of walking through the hardest days side by side and spending almost every moment of his first 18 years together. We have a trust and a level of communication and understanding that few find in their life. I thank God every day for the incredible honor of being his mother.
Maddy- Oh my Maddy Moo....she keeps me on my toes that is for sure. She has not had the greatest time health wise lately, but most would never know. She has an inner strength and determination that is not matched by many. She refuses to let her health rob her of all the things she loves to do and she pushes through chronic pain and illness daily to achieve the goals she sets for herself and to make sure she is living her best life. Her knee and ankle pain is almost constant, she battles through lightheadedness and dizziness daily and is back to having migraines almost every day. She struggles with nausea. And yet every day she is at the barn or dancing or reading or spending time with her brother despite how bad she feels. Dr Koenig is ordering some more testing to see if we can find any more answers to help her. We are also going back to an enzyme replacement to try and counteract her malabsorption and get some desperately needed weight on her. We have doubled her migraine meds and we continue to meet with Scottish Rite to figure out when is the best time for her first major knee surgery. My days and time with Maddy are such a gift. The countless hours we have in the car and at the barn allow for lots of heart to heart talks and she loves to play music for us. She continues to progress in her riding and has the most mature, healthy attitude about competition. I love to watch her joy when she and Quigley accomplish something they have been working on and she is so patient and loving with her horse and her teammates. Last month she opened up about new goals and where she wants to focus at the barn and she let Mandy know so we are trying to make that happen. What a blessing it is to get to witness all the moments and growth in your child's life. I never take for granted how lucky I am that I have been able to be at every important milestone and moment with my children.
As for me, we have answers, but no viable treatment so I am choosing to follow the example my children set daily and not let how I feel be the marker of my days. I am trying to take better care of myself and allow myself the time to rest and take care of me physically, mentally and emotionally. This has been such a great year for me emotionally and I continue to be grateful that I was able to come out of the hurt of a year ago and still choose to be open to friendship and love and living authentically with kindness despite how that has been used against me in the past. After taking a break from some of my volunteering, I have jumped back in and helped with several projects at Cook's as well as getting back on a few committees. I am also trying to help some at Stable Strides as I could never repay them enough for healing mine and Maddy's hearts and bringing back her love of riding and horses.
Bruce has some more testing coming up in August, but feels well and we expect good reports once again.
Thank you for loving us well, through the ups and downs of this crazy life we lead.
Ali
