Major Changes and Lots of Pictures

 The past 8 months have come with so many changes for my sweet girl, but also a lot of soul searching for both of us and especially to being sure we doing what is best for our family in all ways. I feel like a broken record often these days, but our new barn has been absolutely amazing for both of us! For so many years, Maddy was so timid and scared to speak and truly fearful of new places and experiences. She would cling to me and look to me to speak for her. I have always said if someone sees Maddy's sassy side she truly trusts them because until she is very comfortable she just stays as quiet as possible. Since starting at Stable Strides in mid June I have seen my girl my comfortable than I have in any other place in her life other than home. Maddy has made friends with the other riders, she advocates for herself with her coach, she speaks freely with many of the parents and is often heard giggling or being sassy with some of her teammates, coaches and volunteers. Seeing my precious girl having fun instead of having anxiety is what I have always wished and prayed for. We have found a community that has welcomed us and truly enjoys time together. Horse shows are exhausting and long and while we are there to compete my favorite part about Stable Strides is that the focus is on the time together. This week was really special. We have now done 6 shows since we joined the team in June. And this was one of my favorites. We spent 4 days together chatting and cheering on our team, but also sharing meals and helping each other so all of the riders could be at their best. 

Nichole was there to cheer Maddy on and be a volunteer for one of Maddy's teammates!

Selfie King Aiden getting a group shot

Some of the crew at team lunch

Maddy and Kristi

Maddy and Dyann

Dinner with friends

Maddy and Reyna with a Reyna's Novacek 84 Service Dog

Since Maddy started preschool she has begged me to homeschool her, but my primary reason for sending her to school was because of how painfully shy and attached to me she was. Shortly after school started back in January, I began to have a nagging in my heart that I should bring Maddy home to teach next year. I began to discuss the possibility with Mad and she was unsure if that was what she wanted. After many conversations and weighing all of our pros and cons we ultimately decided it was what was best for her. Once we had made the decision we decided to bring her home now instead of waiting till next school year. We put a lot of time and effort into this decision, but having the flexibility to choose curriculum and a schedule that works best for her taking into account her medical issues and learning disabilities were the ultimate deciding factors. Maddy and I are excited to begin this next chapter. It was very hard to tell her school. They have been so good to us and we have loved being a part of Trinity Prep for the past 4 years. The Beckwith Academy of Excellence is back in business!

Therapeutic Riding is about so much more than horseback riding and competing. Horses and our barn family have given Maddy confidence, community, and allowed her to feel comfortable to speak. It is because of our time at Stable Strides that I could change her educational setting without fear of her not learning how to speak to others and advocate for herself.

So about our show...we traveled to Jackson, Mississippi for Dixie Nationals Quarter Horse Show. It is a show Maddy and I have never attended before and has a very high level of competition. We arrived on Sunday and just got the horses settled. Monday was a prep day. In the morning we worked with the horses lunging and giving baths before heading to a team lunch! One of my favorite parts of the show was Jackie teaching Maddy how to band a mane. Watching Maddy want to learn all the parts of caring for a horse, prepping for a show and making her horse better is really neat to see. The afternoon was practice time and then a large group of us headed out to dinner. 

Maddy learning to band. I love the look on her face!

Maddy learning to crochet during down time

Practice

Tuesday was the start of the competition. First up was the Western Classes: Western Pleasure and Horsemanship. These are the two classes that Maddy had to scratch in January at our last show so I was excited to see how they would do. I was extremely proud of them. Quigley is an English horse and has never been exposed to what he is being asked to do. They finished 11th in Western Pleasure (on the rail) and 8th in Horsemanship (pattern). After lunch it was time for trail. Maddy was riding twice in trail. Once on Lila and once on Quigley. She did amazing in both rides and finished 6th with Lila and 9th with Quigley. It was so fun for her to get to show Lila one more time before she is returned to her owners. Of every class at the show her trail run with Quigley was the one that I was most proud of. The course was TINY. Quigley is HUGE. I wasn't sure they would even be able to get the trail the way it was set up. Their trail was SO good. Tuesday night we once again had dinner with a big group of teammates and family. 

Wednesday was the last day of the show. It started with Halter. At Chisholm, Quigley gave Mad a hard time during this class so Maddy was a little worried. He behaved perfectly. They finished 7th. It is not my favorite class as they pretty much just stand around while the judges look at the horse. Next was showmanship. Maddy is very good at showmanship and really enjoys it. But it is yet another class that is brand new to Quigley. They did great in the warmup, but didn't do quite as well. Sweet Quigley is trying so hard and actually learning pretty quickly. They just need some more time to continue practicing. They ended up finishing 6th.

Maddy and Cassandra starting the day

Showmanship Awards

Jackie was an AMAZING volunteer! These two had so much fun.

Wednesday afternoon was what Maddy had been waiting for. She is loving riding English since being at Stable Strides. And Quigley is an English horse with a gorgeous English trot. It is a joke around the barn that Maddy just smiles bigger when she rides English. Maddy and Quigley had two great English classes. The first was Hunter Under Saddle and all 4 judges awarded them first place. I was pretty sure she was grinning ear to ear. The last class of the day was English Equitation. Maddy did the best pattern she has ever done in Equitation and finished 3rd. It is so fun to watch this gentle giant work so hard to do what his little girl is asking and to see this tiny rider control this huge beast. 

Lila love before starting English

Getting ready

English Equitation Awards

Maddy and Reyna were the high point winners in their divisions!

We are home and although we are exhausted our hearts are full from time doing what we love with people who have welcomed us and loved us brought joy back to our time at the barn and shows. Mandy has created such a supportive, loving community at Stable Strides and we are so happy we have found a new "home" and family that we love so much!

Ali

Cuddles and scratches for Lila before heading home

The show photographer captured this candid of Maddy with this caption:
"This adorable exhibitor was showing the biggest horse in the show. She swept the walk-trot HUS with wins under all 4 judges!"

Home sweet Home

Medical update and Pictures

 I need to provide an update on Maddy and her labs that I received earlier this week. But as we have some new friends in our life I want to back up and give a little history. By the time Maddy was born we knew it was possible that she would also have Mitochondrial Disease like Alex (there was a mistake made in our genetic testing, so we got pregnant and then found out Bruce and I both carry a mutation for Mito). At 2 months old, Maddy had a high fever and a bacterial infection. At 6 months, she had an abscess and a second bacterial infection. At that point our pediatrician told us it is extremely rare for an infant to have two different bacterial infections in their first six months, and he was pretty sure her immune system was not functioning correctly. That coupled with her already apparent developmental delays made us aware that it was likely she also would be diagnosed with Mito. At 9 months old, she became extremely ill and was hospitalized. That hospitalization and a follow-up with our pediatrician quickly became scary when we realized that Maddy's body was not making Neutrophils. Your neutrophils are one of your white blood cells that help fight infection. They should be over 1500 and Maddy's were 20. For the next several years Maddy was very closely followed by Hematology and had to go to the hospital for any fever over 100.4 as she was at a very high risk for sepsis. Her body just couldn't keep up and we started her on an injection three times a week to "force her body to make neutrophils". We were eventually able to wean off those shots, but other parts of her immune system were also not functioning, and she was started on a weekly infusion which involves two needles in her legs that runs for 2-3 hours every week. A number of years ago our immunologist checked some more specific immune labs and called me very concerned as Maddy was still not making many of the cells necessary to fight illness. Those labs were repeated earlier in January and her immune system continues to show severe deficits. We are still waiting on a few more labs, but so far out of 16 tests, 13 were significantly out of range and two of the "normal" ones don't have a reference range for her age but based on Alex's reference ranges those would also not be great. In the grand scheme it doesn't change much as we have known she has an immune deficiency. But sometimes it is a hard pill to see the stark reality in black and white. We will continue to do all we can to help her live her best life and be incredibly grateful for our time doing what we love and do we all we can to support her body. I am constantly reminded what an incredible fighter this little girl is. She lives her life with a perseverance, a determination, and a strength that most could only aspire to. She is the hardest worker in all areas and continues to accomplish more than she should be able to. 

Now to the fun...her accomplishments as an equestrian are one of the greatest examples of what can be achieved even when all odds are stacked against you. These amazing photos are from the professional photographers who are so generous to take their time to capture these moments for us at the Chisholm Challenge 2 weeks ago!

Showmanship

Hunter Under Saddle

Hunt Seat Equitation

Halter

I would ask for your continued prayers for Maddy and Alex. They are both loving this stage of life and want desperately to stay as healthy as possible so they can keep living life and chasing dreams. I would also ask that you pray for Bruce and I and the kids doctors as we continue to make decisions in treatment and care that supports their struggling bodies' while also providing them the best quality of life.

Ali