Alex and Maddy

Saturday, August 31, 2024

Not much to report

 This week has been a pretty normal week for us. Everyone is back in school, and activities and we are just cruising through trying to keep our heads above water!

Medically the kids are stable. Unfortunately, I did not get the answers I had hoped for this week. First for the good news...a few weeks ago I had mentioned a test that came back that led to more questions. That was a brain MRI, and it came back showing areas of inflammation in my brain. My PCP was unsure if this could explain any or all of the symptoms, I have been having so asked that I follow up with Neurology. I did see the neurologist on Thursday, and he felt very confident that these spots were not the cause of any of my symptoms as they are very small. So, praise God for no brain involvement!!! Now for the not so good news. There was in issue with the camera study and after waiting for 2 months hoping and believing it would finally give me answers the results were inconclusive as the lens of the camera was covered from the time it was in my stomach and they could see nothing of the small or large intestine. My PCP was pretty upset with the GI when I saw her and has sent two referrals to different practices as she believes we need a fresh set of eyes and someone who is invested in helping find answers. My thyroid and hematology labs continue to be out of range so we made some adjustments to my thyroid medication, and we continue to hope we can find an explanation for my myriad of symptoms. I have spoken to Dr. K and at this point we are also considering that a medication early on in my treatment of RA may have sparked mitochondrial dysfunction as an explanation for what is going on. I am just accepting that this is my new norm and choosing joy and putting one foot in front of the other. If at some point, we find another answer with treatment options I will rejoice in that news!

Last Saturday the kids went to a movie and ice cream and then we attended a fair and had so much fun as a family!






Alex's Room at DBU


Maddy enjoyed Fellowship at church!









Alex dressed up for his house meeting


Maddy in her happy place!

Thank you for your continued thoughts and prayers!
Ali

Saturday, August 24, 2024

So Much Good

 There are certain times in life when you just realize how much good you are surrounded by, and you can't help but be grateful for the people and experiences in life that make each day better.

In the Beckwith household these last few weeks have been like this. Both kids are back in school, we are back to our regular schedule and there has been much to be thankful for.

Alex officially moved back to campus while Maddy and I were in Tulsa, but this week was the first week to resume classes. I have to stop sometimes and think about what a true miracle this time is for Alex. There were so many days, months, and years where even keeping Alex alive seemed like such a daunting task. Having lived through so much struggle and so much sickness makes this time mean so much more. Not only is Alex SO happy at DBU, but I am watching him grow in independence and maturity all the time. Alex has always been a people person. Like me, connecting with people and finding people to live life with fills his soul. He is really enjoying his new roommate; he loves his classes (even math which he was dreading) and he gets to know all of his professors and classmates. I don't know anyone who loves learning like Alex does. He thrives on digging deep into topics that interest him and asking hard, philosophical questions. His professors have all gotten to know Alex and appreciate his intellect, his curiosity, and mostly his joy for life which is apparent in everything he does. He continues to grow in his faith and has surpassed me in his knowledge of the bible and biblical times. Alex has always been so true to his authentic self and that continues. He is excited to continue his major in Psychology and has decided to pursue two minors: History and Biblical Studies. He knows what he wants and what is important to him, and he goes after if without feeling the need to explain himself or be accepted by others. I always say he was born without the gene to care what others think and it is so special to watch. Last year, first semester was a challenge as he tried to navigate a foreign world having never been in a traditional classroom. He struggled with organization and time management and needed my help to stay on top of things. We saw huge improvement second semester as he made huge improvements in staying on top of his work and figuring out a schedule that worked for him, but there were still areas where he had some struggles like getting all of his reading done and keeping his room from turning into a disaster zone (I cannot begin to explain how much space all of his medical supplies take and the trash that builds up as you use supplies). As this semester started, we talked about trying to do a better job in these areas and he has stepped up amazingly well. He actually started reading for his classes before the semester began and Bruce said his room is very neat for a college male! I continue to be incredibly proud of him in all areas.

Alex and one of his favorite Professors

Oh my Moo...I am equally as proud of her. She is so very different from her brother, but equally as special. What started as heartbreak and devastation two and a half months ago has turned into so much growth and so much joy. I am watching my sweet girl overcome so many challenges and absolutely thrive in our new barn. Her riding skills are improving each lesson, but it is so much more than that. For the first time I am watching her ride without debilitating anxiety. I am watching her form connections and push through the shyness to speak to others, to make friends and even to throw some sass at a few.  She is conquering challenges that used to result in tears and so much fear she had to stop at times, and she is doing it all with a huge grin on her face. The best example I can think of was earlier this week. She used to panic if more than 2 other riders she knew and trusted were in the arena with her. She HATED it and would often cry or ask to be done riding. She would dread going to the barn if she thought she might have to ride with others. The fear kept her from enjoying what she loves most in the world. On Tuesday the heat was horrific. So, three trainers and about 8 riders were all sharing the covered arena. Maddy rode both English and Western, learned some new skills, navigated the traffic of other riders and multiple times yelled "this is so fun" as she came by me! She trusts her coach, she trusts her horse and she loves the calm, positive environment where she is constantly encouraged and pushed in a way that builds her up. I have been brought to tears multiple times seeing the joy in her and knowing how hard it has been for her at times. She is constantly telling me how happy she is and how much she loves Lila and all the people that are a part of Stable Strides. 







She also started school this week. She has a seasoned teacher with exceptional classroom management which she loves. The kids are allowed to choose their own seats so she sits next to her best friend, and they are working towards study skills and independence that will prepare them for Middle School and beyond. Maddy's school is the perfect fit for her. From the small classes to the schedule, to the focus on faith and learning in a way that honors God, and to the staff who love Maddy and understand her challenges and work with her to make her successful. She was also happy to jump back in Dace and Art with her beloved Ms. Joli and Children's Choir. Have I mentioned this child keeps me busy? But what a gift it is that I have been able to be so involved in the lives of both of my children. I love spending time with them and helping them grow into the amazing humans God created them to be. 




I have had multiple people reach out to ask about my health. There is really no change or any results to report. I have two appointments this week and am hoping to maybe start getting some answers, but I am choosing to accept that this is my new normal and while I wish I felt better physically, I have two perfect examples of Choosing Joy and to push through and live even when you don't feel great. I am also trying to do a better job of taking time for me...to rest, to fill my cup and to do what I can to manage my health. For most of my life I have given and given to everyone else and taken care of so many and I believe this is a time for me to take of myself. In some ways, I think my health has tanked because I was constantly doing for others. At this point my body gives me no choice but to take care of me too.

I am so very grateful for our village. Thank you to those who have wiped my tears, those who continue to pray for us and those who are so genuinely happy for us when times are good. My life is better because of the people who walk this journey with me.

Ali

Thursday, August 15, 2024

NSBA World Show 2024

 What a week this was for my Maddy Moo! As I have mentioned she set the goal for herself to compete in the Independent Division this year. And she did an amazing job, showing Lila with grace and composure and crushing her goals. She placed 4th in Showmanship, 11th in English Equitation and 13th in Trail. But as I reflect on this week it is not just the time in the arena that warms my heart, but a million tiny moments that I captured that tell the story of love and support from a barn family.



















It starts at the top with a director and coach who loves her riders fiercely. A woman who knows that social skills and friendship and making sure her riders know they are loved and not anxious far outweighs trophies and ribbons. More times than I can count I watched Mandy stop the never ending "work" of preparing the horses to show to chat with her riders or answer questions or just encourage them. I watched as she took the time to be sure that each rider felt prepared and went over patterns extra times for those who felt unsure. I watched as she checked in with the parents to be sure they were good and knew the plan. I watched as Maddy felt comfortable to speak up for her and her horse knowing her opinion would be heard and valued. I see her passion being fueled and an excitement for what is to come. And I watched as Maddy felt so comfortable with Mandy that they have a bunch of inside jokes after only two months working together. 
Mandy talking to the team before trail

Mandy walking trail with some of the riders




Mandy's beautiful braiding of Lila's tail for English


It is her two selfless daughters who work tirelessly to help the horses and riders. Katie and Caroline have both grown up with horses and at horse shows, but instead of rushing through their jobs they stopped to grab Maddy and show her every part of preparing her horse. They took the time to teach and help and allow her to be a part of every aspect of the preparation and care when it would have been so much easier to just get it done. They are by her side to help with riding and learning and encouraging and to make sure she is comfortable and protected. 

Katie and Amy helping Maddy lunge Lila

bath time

Katie was by Maddy's side every step of the way



Grooming



Mucking



It is the other staff and volunteers who all jump in to help in any way possible to lighten the load of all. The coaches took the time to thoughtfully award each rider a medal that was personalized for them. 


Maddy's medal for bravery in and out of the arena




Maddy helping Stacie feed



It is the parents who all look after all the riders. The dads who make countless trips on the golf cart, so no riders need to walk a long way before their classes. The parents who all help the riders get ready. The parents who sit with riders while other handle horses. The parents who cheer on every rider whether they met their goals or not and console those who are upset when they didn't get the results they hoped for. The parents who take pictures of all the kids so we can remember these special moments. It is the parents all chipping in to provide lunch each day so everyone has time to eat and enjoy fellowship.

Maddy and Roxy

But most of all it is the riders who truly love one another. The little conversations, the games played together, the laughter, the smiles, the jokes, the encouragement. It was Aiden arriving each morning and asking Maddy how she was. It was Mason grabbing Maddy's hand to help her get back into the arena for callbacks when she placed. It was the older riders looking out for her and making sure she was included. It was Maddy feeling comfortable to ask questions and speak to all. It was the riders genuinely excited for each other when they did well. It was Maddy showing her past dance videos to another rider who is also a dancer. It is a group where differences fade away and all that is left is a mutual love of horses and respect for the work they put in to be equestrians.  It is all the ways they are there for one another to create a family where everyone knows they are loved and valued exactly as they are. 

Maddy and Emerson


Maddy and Stacey

Maddy and Mason

Maddy and Reyna

Maddy and Aiden

The riders playing cards



Maddy and Ana

The riders dancing

Maddy and Abigail looking at memes

The riders before showmanship


Maddy and Abigail spent so much time talking and laughing

Some of the riders before English




Horse shows are exhausting and long, but as we arrived home today my heart is so very full. I am so grateful to have found a place where joy and laughter and love are the overriding emotions of these special memories we create.