The silver lining

 I have always been able to find the silver lining no matter what life throws at me. And for that I am always grateful for the way God made me. But despite staying positive there are times that the constant strain of our life takes a toll and leaves me weary. During those times I try to lean into my faith and the love of friends and know that I always find a way to see blessings somehow.

Overall, Alex is doing really well. I continue to watch him grow and get better and better at managing his time and organization and balance his extensive medical care with his schoolwork and activities. I think my favorite thing about DBU is that the professors truly see him and his work ethic and his positive attitude despite everything. As a mom, it melts my heart to know he is loved and seen. Some of the professors act like second mothers and remind him to put his health before school work even if it means he needs an extension on an assignment. DBU would not be the right school for a lot of kids, but for Alex it has been the perfect choice. Alex has had a hard time with his advisor since the first semester. She is a lovely, kind woman, but has made mistakes almost every semester so Alex has had to take extra classes and change his plan. he had reached out to higher ups a few times, but they have been unwilling to change. After another mistake as he was registering for next semester, he emailed multiple people and as of last week has a new advisor which makes him feel better as he moves into his senior year.

My sweet Maddy Moo... we girls stay SO busy! We are at the barn 3 days a week, dance twice a week, tutoring once a week and try and fit school and doctors appointments in somewhere! poor mad has had a time medically for the past year and it feels relentless at times. She has so much going on, but most people have no idea because she never complains, never makes excuses, or shows how bad she feels. Our last medication adjustments mean her blood pressure, heartrate, and kidney issues are doing a bit better. Although we are coming into the time of year where her dysautonomia rears its head the worst. Unfortunately her hypermobility is very severe and she has joints that are popping and slipping out of joint almost constantly. She is the proud owner of two new pairs of ankle braces for different reasons and the first knee surgery is this fall, but you can't brace a lot of the joints so it is an ongoing battle. She just had an MRI of her spine with some surprising results that I am not sure of the ramifications just yet. Add to that struggles with her vision and hearing and that little girl carries a lot each and every day. I am so grateful for her love of horses and animals that keeps her motivated to continue pushing herself. She is head over heels in love with Newman! He is such a good boy. he is easy going, loves to work (especially jump) and has amazing ground manners. They are such a sweet pair. This week we also gave Quigley some love as the trainers who share our property and who have Q in training are moving this week to a new property. That giant goofball was so happy to see us!

After 3 years of health problems myself I am trying to get myself into a healthier state as well. It has been hard as I am still struggling with some GI issues and hypothyroidism. But I am trying to start exercising a tiny bit and see if I can do any better. Maddy is a good motivator and pushes me when I would rather be lazy. 

Please keep us in your prayers, especially Maddy as we try and sort out an ever growing list of complications and find solutions that allow her to do what she loves.

Ali

My Little helper

 Not much is new...

Alex is back to classes today. He definitely enjoyed his break and having time to just rest and recoup. He is finishing up his junior year over the next few months. I can't believe he only has one year left as an undergrad! He had a flare up of some old issues over the past 6 months so he had an MRI while he was home to check on his spinal cord and we will have more testing done over the summer. Alex's greatest wish is to be able to travel overseas. DBU has multiple trips over seas each year, but we haven't been able to figure out how to make it work medically yet. So we also took the extra tie this week to trial some shelf stable TPN. Alex felt fine, but his labs after didn't look great so I'm guessing we will have to come up with plan B.

This has been a fun time with my Maddy Moo. I love to watch her heart for her friends and especially for her horses. Over the past few weeks she has twice asked Mandy if she could help at shows where she doesn't want to show. The first show she helped "run" the tack room and make sure all the horses and riders were ready with their equipment for their classes. It was hard work, but she did a really good job. This weekend she asked if we could travel to Austin to help again. Maddy has a full lease on Newman which means that technically she is the only rider. But when we decided to lease Newman Mandy let us know that he had an older girl who rides Newman and has a special connection with him. Maddy agreed to allow Alex to still ride Newman because she knows the hurt of having your horse taken away from you. Alex was showing in Austin and maddy wanted to be there to cheer them on and help get Newman ready. I really enjoyed watching her help Alex and Newman and be their biggest cheerleaders. Maddy also helped as horses finished to prepare them for their ride home. I love that maddy is wanting to give back by helping and still enjoy time with her friends and teammates. Her words are often few,  but her actions display her sweet, caring heart. She had a little disappointment last week as she was registered for her very first hunter jumper show which has been a goal and a dream for the past year. Unfortunately it got rained out so we have to wait a bit longer for that dream to come true. Maddy has some testing and appointments coming up before we head to Florida to visit Mimi and Aunt Jenn Jenn and show at the World Equestrian Center. 

Loving Newmie this morning

Taking out Sal's bands

Taking out Mia's bands

Newman was just melting into her

Taking out Newman's bands

Taylor and Maddy with Newman

Putting Newman's halter on

Maddy and Emerson

Thank you for following along and loving our family!

Ali

So much to be proud of!

 I am sure y'all get tired of me bragging about my kiddos, but they amaze me so often with their determination and perseverance to succeed regardless of the many obstacles they face.

My Bug...he is such a good kid. And he doesn't ever give himself enough credit for what he has endured and for the impact he continues to have on the people in his life and in this world. His smile, his love of life and his faith touch almost every one he comes into contact with. But he has days where he struggles emotionally. Never-ending fatigue and chronic pain are not easy when you only allow yourself to perform at the highest levels in all you do. Oh how I wish that he was given an easier life. As a mom it is so hard to watch your child suffer day in and day out. And yet I know he was given this life and this call for a reason. If he was just a "normal" kid I don't know that his impact would be as great. What makes it a bit easier for me is knowing that others see the same incredible young man that I see. I have been moved to tears multiple times this week as he has forwarded me recommendation letters written on his behalf as we try to find more scholarships to help ease the financial burden. There is no doubt that he is in the exact right school for him. The very small class sizes allow his professors to truly know who he is. And to love him well. Many of his professors pull him aside and encourage him as they see his heart to serve this world and especially other children who live with chronic illness and pain. Despite taking 18 credit hours in the Fall, Alex made the honor roll and was only .04 from making the Dean's list. I pray that one day he will realize how special he is and see himself as others see him.

My Maddy Moo... it is so interesting to me how very different my kids are. Alex is so much like me. He has never met a stranger and is happy to conversate with anyone and everyone. Maddy's words are few and she would pretty much rather do anything than talk to a stranger. She is naturally quiet and a little reserved, but when you earn her trust and love she is so loving and so much fun. And while people don't always get to break through her shell, animals seem to instinctively know she is sweet and gentle. They all gravitate to her and trust her. The animals in her life are so well loved and cared for. I love to watch her with them because that is when she is most at home. She is growing into such a teen. She loves fashion and music and spending time with me. While Alex is so vocal with his faith, like most things Maddy is much quieter in her faith. When she was younger she would tell us she was a "private prayer". Alex and I call her our prophet because whenever we ask her to pray it seems like our prayers are truly heard. Maddy hates when I share anything about her and her showing because she "doesn't like to brag" and "doesn't care how she places." And while I know she doesn't care it matters to me because I watch her struggle physically and medically day in and day out and work incredibly hard to do her best. To me when she does well it is a reward for all of her hard work and dedication and should be celebrated. You would be hard pressed to ever hear a complaint out of her no matter how bad she feels and she never gives up on her goals and dreams. Some days she will get in the car to drive home from the barn and tell me how bad she is hurting or how bad she feels, but it never keeps her from trying her best. This week we received a large envelope from NSBA that she was the year end Champion in Walk only showmanship and Hunter under Saddle and Reserve Champion in Hunt Seat Equitation. She was also the 4th place points earner in year end walk jog trail and 5th overall in points for EWD Rider. And that was during a year that was very hard on her medically. I am proud of her relentless pursuit of her goals and living the life she chooses despite mito. But without a doubt my favorite thing is watching her with her horse, her teammates and her coaches. She is finally in a place where she feels safe and loved and uses her voice to say what she wants and to joke around with her friends. I am forever grateful for a barn family that has welcomed and loved her and allowed her to be herself. 

My greatest joy in life is watching the relationship between my kiddos. They love each other so well. They help each other through the hard days and share each others joy on the good days. They are truly each others best friends and it is so special for me to watch. The kids are happy that this week Alex doesn't have school so they can hang out and enjoy time together.

Ali