A Life Worth Living

 I have a lot of emotions this morning and this blog, while started to keep people informed medically, has become a form of therapy for me. Writing out my feelings both good and hard helps me process them and put them down so I can move on to our next best day.

    When Alex was first diagnosed and so medically fragile, I quickly decided that I wanted him to live the BEST, most normal life he could. And while very little about our day to day life is normal I have tried to parent as I would any child (not always easy) and to allow my kids to do what they want even if medically saying no might prolong their quantity of life. My saying for as long as I can remember has been "there is no point fighting this hard to keep them alive if I don't let them live". My kids are master's of deception (Maddy more so than Alex). Alex is so very comfortable in his own skin and doesn't care what anyone thinks so he doesn't hide his medical attachments and will let us know when he is not feeling well and our day needs to be done. Maddy does not. She pushes through more than most could ever begin to imagine and not ever utter a word. Invisible disabilities and illnesses are hard because others don't always see the struggle. And it is very easy to think someone is "fine" because they look good. My house is stocked like a well run hospital. The care we do has been compared to ICU level care in some instances. We have more medical pumps than I can count. Both kids have wheelchairs with motor attachments (that they choose not to use 90% of the time). It takes me over two hours to prepare meds for the week for both kids. You get the idea. All of that to say looks can be deceiving. But that is what makes the miracle of these children so special and beautiful to watch. 

Tonight we we will watch Alex be honored for a life well lived despite his circumstances as he receives the Night of Superstars Alumni Scholarship. His life has been extraordinary and I never stop thanking God for choosing me to be his mother and experience the way God uses Alex in this world. He has an amazing testimony that is paired with a magnetic personality and huge smile that draws everyone in. He is incredible in every sense of the word and I love to see that recognized.

But oh my Maddy Moo she has been breaking boundaries since the day she was born. I often wish people could sit through some of our appointments because there are very few who truly understand what this child deals with.  Our very first physical therapist looked at me when Maddy was a little over a year old and told me that in most cases she would be wheelchair bound BUT she has this fiery determination so she will walk. That determination has never let up for one minute. I am known to buck the system a bit. And our doctors go along in most cases because they know that I know my kids best and when they feel strongly about something I will listen and respect their opinion. Our favorite doctor just recently told us that Maddy could come in with her leg barely attached, dragging behind her and still say she is fine. My sweet girl has no quit in her. She refuses to lay down to her illness and will push herself no matter how bad she feels. I have convinced her hematologist not to admit her when her blood counts were low but she looked good to me. I have managed to get a doctor to write a letter saying no jumping, no running, no PE but okay to horse back ride. 🤣 I have talked the orthopedic surgeon who we have been told never waivers to reduce time off the horse from 4 months to 6 weeks. But again why fight to keep them alive if I don't let them live.  This child has ridden horses (and in most cases danced) through a broken foot, a broken back, kidney stones and joints that pop out of place multiple times a day every day. And that's only the bones and joints. Not all the organ dysfunction, fatigue and pain that her underlying condition cause. 

I knew going into yesterday that she is moving towards different goals and she didn't really want to do the show. I offered multiple times she could scratch and just cheer her friends on. But then there is that same determination that won't quit and so she once again pushed through and had a great day. I love to watch my girl ride in ALL THE CLASSES. And I would love for her to always do it all,  but that is not her heart. And it is so apparent when you watch her. And our biggest win was she had no anxiety driven attitude and a fun day with friends and her best boy. I could tell you about her classes and how beautiful her riding was (and it was). I could tell you she finished Reserve Champion in two classes. But that is not what this is about. It is about my girls kind heart, her relentless determination and her knowing what makes her happy and chase her own dreams instead of doing what everyone else is doing. People who aren't "horse people" see the difference in her when she is doing what she loves. She comes alive in an English saddle when she can push herself and her horse and let go. Her whole aura changes. And what a gift it is to watch that. And while she may not inspire the crowds in the same way that Alex can, but being Maddy's mom has changed me. I am the one who dries those tear of pain. I am the one she lets down with when she is hurting and exhausted after pushing all day. And I am the one who watches her find strength from within day in and day out and work harder than anyone I know because she will not quit on herself and her goals.

And so when you see the big smiles ( because we will always CHOOSE JOY) just know there is a whole other side that most will never see or understand. Thank you for loving us and for giving me a space to share my feelings and emotions.

Ali

Happy 13th Birthday, Maddy!

 This girl has always been a trick and a treat! She definitely keeps us on our toes, but she is so sweet and the perfect ending for our family! 

To My sweet Moo,

What a year this has been! You are amazing, my girl! Don't ever forget it. You have so much you have to deal with and yet you never complain or make excuses. You just set your sight on what you want and you are absolutely relentless on achieving your goals. Your work ethic, your determination and your courage are unmatched. This year you kind of found your place. You love reading and music. You love ballet and have become such a beautiful ballerina. You LOVE to jump and have found the perfect partner in Newman. Together you are both your best and so happy. But most of all you love time with your brother. Whether you are just joking, or texting each other, or watching your horror movies you are both happiest when you are together.  I am so proud of your kindness, your love and loyalty to your people, and your love of animals. Don't ever let this world change you sweet girl. you are SO loved.

Love, 

Mom

Blessings All Around

 The ebb and flow of life is so interesting. It always seems like an influx of blessings and praises or like bad news at every turn. This past week has been a GREAT week for both kids. Just so many amazing things have happened and I feel like I have not stopped smiling!

My Alex, my sweet Bug...his life has been so, so hard and yet he stays positive almost all the time and is such an encourager to every one around him so it means so much to me when he is rewarded for his joy and perseverance. Last Thursday we had the privilege of watching him be inducted into Psi Chi, the International Honor Society for Psychology.  He has also met with the head of the master's Program and is working out his plan and concentration. I love seeing his passion for learning. He truly does love to learn and it is special to watch, even if he drives us crazy with his endless string of facts and information. And then yesterday he learned that he received a Scholarship through Night of Superstars! Some of you may remember he was a "superstar" in 2015! What a week he has had! I sound like a broken record, but it is really special to watch this child thrive when we thought we would never get to experience these milestones. I am just soaking in this precious time and praising God for the miracles HE has worked in Alex's life!

Alex signing Autographs on the red carpet at Night of Superstars

Alex posing for the Paparazzi

My Maddy Moo...I posted something similar on Facebook on Sunday. Horses and riding have been Maddy’s passion and life for the past 7 years. When she started in 2019, she wasn’t strong enough for the Therapeutic riding program, so she started in Hippotherapy (physical therapy using horses). In 2020, she got to start riding. I have watched my girl set goals and be relentless in her pursuit of them despite pain, fatigue, illness, fear and so much more. There have many hard days and seasons. When we arrived at Stable Strides Farm in June of 2024, Maddy was beat down from years of pressure and stress at the barn. But that all changed with a new barn, a new coach, and a peaceful environment. Maddy started changing almost immediately. I started to see her smiling more. There were no tears. And by the time we were a few weeks in, Mandy had convinced her to try English (which she had always wanted to do, but was too scared of the saddle) By the end of the first month, Maddy was an "English girl" asking to do English more and more often and by the fall she told us she wanted to jump. Since November of 2024 Maddy has been working towards the goal of attending a hunter show. She has worked incredibly hard and it hasn't always been easy. She had to build strength. (Pretty sure she could beat almost any one in a two point contest at this point). She had to work through fear. (Don't ask us how many extra laps there used to be before she worked up the courage to pop over a jump).  Something clicked over the summer. She has been making improvements and trying new things almost every jumping lesson. Sunday she got the chance to attend her first Hunter show and it couldn't have gone better. This Maddy was not the same Maddy as "normal horse show Maddy". She was as calm as I've ever seen her. She was peaceful. She was happy. And she rode beautifully! If I had any doubt that this truly was the direction she wanted to go, Sunday pushed them all away. I am so grateful to so many people. Mandy stepped and took a scared, hurt little girl and taught her to trust again and made her love riding again. Mandy has allowed her to forge the path she wants even if it isn't the same as her teammates. This is Maddy's dream and Mandy lets her set the course. Letting her have control and make her own decisions has helped instill confidence. And while Mandy is her safe place and the one who makes sure Maddy is happy and not nervous, Keeya challenges her and pushes her past her comfort zone, but in a way that Maddy feels empowered to do it. Two coaches, two approaches and the perfect team to help Maddy accomplish her lofty goals. But that team is not complete without the best horse ever. Our Newmie has been a gift! Every horse teaches a lesson or is good for a season and Newman has been the perfect horse for this season. He LOVES to jump, just like his girl. He gets so excited when he sees the jump. He is so trustworthy and reliable. If there are two choices, he takes the safe one and always protects his girl. And he is easy in the sense that he does what she asks of him. He cooperates. They work together. And together they have become the sweetest little partnership. And then there is our barn family. They have brought so much joy and laughter to our life. They are teammates but also friends. We travel together, we eat together, we hang out together. And we encourage each other. Parents, siblings, volunteers, coaches, the whole barn. It is safe and it has become our second home. Everyone know Maddy wants something different, but it doesn't matter they joke around and then cheer her on and she does the same. The past two years are a testament to what a kind, encouraging coach, supportive teammates, and amazing horses can do to transform a life. What a gift it is to watch her living her dream every day! 

Keeya giving her instructions

The two women who encourage Maddy and help her achieve her goals and dreams.

Jenna has known Maddy since her very first show. 

It meant a lot that she came to Maddy's first Hunter show!

But horses aren't all, Maddy loves ballet and this year has been really good. Maddy loves Joli and loves her time dancing. This year Joli separated Maddy's previous class in two as there was a big age gap. Maddy is dancing with her closest friend and they are enjoying being challenged and acting like typical teen girls. The girls are working hard and Joli is challenging them with harder combinations. (All photos courtesy of Laurel Herron). Like her brother, Maddy is accomplishing more than she should be able to do. All of her joints are unstable and don't behave like they're supposed to. But God has plans for Maddy and she is not going to allow her medical issues to slow her down.

While my kids have been a source of amazing news and so many answered prayers, I've been misbehaving. Oops! In August, i had my first endoscopy in 3 years. My GI wanted to see if they could figure any more out since I still have daily pain after eating despite doing "all the right things". Well, they figured out why I hurt...I had an ulcer and erosion in my esophagus. So they wanted to do another endoscopy and see if the ulcer was healing. Well, I don't like to do anything halfway so I decided to have two bigger ulcers this time and still have erosion. The problem with bile reflux is the treatments are different and not a whole lot of options and when we tried them last time they would interfere with my thyroid meds no matter how far away I spaced them. I see my GI doctor in 2 weeks, but my guess is we will try again! I have also had left ankle pain and swelling since August. It is believed to be tendonitis of the Achilles tendon or Peroneal Tendon. My PCP doesn't like it has gone on this long and is swollen so I am going through some testing to figure that out. She told me to sot and keep it elevated most of the day. Anyone who knows my life, knows how laughable that is. I am really good about taking care of the kids....myself not so much.

Tomorrow my mom and sister fly in to spend the weekend and celebrate Maddy's 13th birthday!! We are all excited!

Thank you for loving our family!

Ali