It is so crazy to think that this time last year my two boys were diagnosed with Muscular Dystrophy. We got Chase’s news on March 17th and Roman’s on April 3rd. I still remember exactly what I was doing both times when I received those phone calls. I recently looked back on Facebook and read the posts I wrote to let my family and friends know about the devastating news and it brought me to tears. It definitely brought back those raw emotions I experienced at the time, but what also really stood out to me was the love and support we received from everyone. Seriously, I read through each and every one of the words sent to us and was blown away all over again. From day one God has placed people in our lives who continue to lift us up. About a month ago we were surprised by some guardian angels who, with love and generosity, unloaded a huge burden off of our family’s shoulders. I will never be able to thank them enough (I hope they are all reading this and know I am talking to them).

Overall, I would say the boys are doing really well. I wouldn’t say I have seen any progression over this past year. There was one day about a month ago, after playing pretty hard outside, I was taking Roman upstairs to take a bath and he started complaining that his legs hurt. He used the specific word “cramping” and my heart dropped to my stomach. I’m hoping this was just typical fatigue that a 4 year old can get after playing outside after a long, cold winter. I’m also hoping that he just chose that word because he has heard his brother say it so many times. Of course, my mind will always go to  the question “is he starting to experience symptoms?” I’m trying not to jump to conclusions yet with this one incident. We are still trying to work on him not walking on his tip toes. A lot of children do this when they are young, but the issue with him doing it with BMD is that those muscles in his Achilles and calves can actually shorten if he continues. This can lead to leg braces at night to lengthen them out, or worst case scenario, surgery. He is really good at reminding us to “do his stretches” before bed, and when we catch him walking on his tip toes we just say, “hey Roman, off your toes” and he USUALLY listens.

While Chase continues to do great socially, the academic side of Kindergarten has proven to be tough for him. We just found out after some testing done by the school, that he has a learning disability. He has difficulty with visual expression, which means he has a hard time putting what he knows in his head down on paper. He qualified to receive some extra help and I just met with the IEP team this week. I think one of his biggest struggles right now though, is getting older and noticing his differences. As I have mentioned in previous posts, he has had trouble with his legs since the day he began walking, but being so little, he had no idea that it was abnormal and most of his friends don’t have cramping and fatigue. He just went with it, rested when he needed to, and never said a word. Now he realizes his friends do not struggle with this and is very frustrated. We had a particularly tough day a few days ago when he wanted to play, but his legs began cramping right away and he said to me with tears in his eyes, “I hate that my legs do this. Other people’s legs don’t do this. It never goes away.” Then later that day, he got frustrated again and was crying and asking me “Why did God make it so that I have a bad day? Why is God doing this to me if He can do anything? I am behind all of my friends. They are better at things than me.” One of my biggest nightmares, trying to explain this stuff to him when I have no good answers. I tried my best to explain to him that God is there to help him make it through his tough day. This is all hard for me to grasp and understand at times, so I can only imagine how hard it is for a 6 year old to process. I was pleased though, even though he was angry and frustrated towards God in that moment, 10 minutes later he chose for me to read his picture Bible to him at bedtime.

I don’t want to mark this one year anniversary by only writing about their struggles though. We want to really focus on and celebrate their accomplishments, big and small. We were so excited that Madison got a scholarship and has chosen to swim for University of Arkansas this fall. What an amazing accomplishment and a testament to all of her hard work paying off. On top of that, watching her win State Championships a few weeks ago……. it still gives me goosebumps thinking about that moment when she touched the wall and we saw a ‘1’ on the scoreboard next to her name. The most amazing thing about that race was the fact that she was NOT ahead most of the race. Towards the end, she told us, she noticed the other girls ahead of her and decided there was no way she was going to let that happen. Most of us have experienced that feeling towards the end of a race when we have given it our all, but we feel like our bodies just can’t possibly be pushed any harder. Even when experiencing this, she was able to dig a level deeper and give it all that she had up until the end!! I am so glad that the boys have a sister that they can look up to and not just see success, but also the hard work and sheer determination that she has demonstrated time after time. Because of her determination, we know that no matter what she chooses for her future, she will succeed. She has so many great things ahead.

Chase is the same loving, thoughtful, charismatic (I should say ladies man……more about that later), courageous guy he has always been. I have loved going and eating lunch with him and his friends at school and seeing his little personality shine. I can’t get over how he is friends with everybody, and he LOVES to make people laugh. It was so great to hear in my meeting with his teacher and IEP team that he is a delightful child and he has social skills beyond what other kids have at his age. A big accomplishment for him occurred just the other day, although this might seem small to some, this was a pretty big deal for us. He was actually able to buckle his own seatbelt!! We have really struggled with this due to the weakness in his hands. Normally it wouldn’t be a big deal and I would just do it for him while we all get in the car, When I pick him up after school, however, if the person helping him into the car does not know he struggles with this, it causes some major delays in the car rider line. I have to unbuckle myself and twist around to the back and yank his seatbelt far enough so I can reach it and push it into place. This is actually a very anxiety filled moment. As any of you who have experienced the car rider lines at school know, being the one holding up the line is never a good feeling. We have been working on it from time to time and the other day when I picked him up from school, he said, “No, I can do it” and he did it!! I still sit and wait for him to do it before I start driving, and yes, I still hold up the line a bit, but he will get the hang of it and we will be able to peel out of there in no time.

Then there is Roman. I have loved seeing this guy’s personality develop over this past year. He is so physical and is still quite destructive at times. He is very inquisitive and wants to know how everything works, and even if you tell him something, he has to figure it out on his own. We laugh about how he is an “evil genius” and that we hope that later in life he will use his powers for good. The crazy thing is, as independent and destructive as he can be, he LOVES stuffed animals and asks me to sit with him so we can cuddle every chance he gets. I was a little concerned at the beginning of preschool this year because his teacher kept telling me he was so serious and didn’t laugh, sing, and dance with the other kids. Just after Christmas break he started to really come out of his shell and has become the leader in the classroom that they thought he would be. He can already write his name, and he has caught on to certain routines in the classroom that other kids have not. For example, if he puts his folder in front of the rest of the folders when he enters the classroom in the morning, he will be the first to get a hand stamp at the end of the day, so the teacher has said she tries to change things up on him to keep him guessing.

It has been a roller-coaster year, to say the least. I can’t complain though. We all experience heartache for our children at various times throughout their lives. Yes, I hurt when they hurt. That is one of the side effects of becoming a parent. I have absolutely no regrets. When they feel good or do good things, it feel sooooo good, doesn’t it?!? One little “I love you” from your child, or watching a smile spread across their face when they have accomplished something you know they worked hard for can sometimes negate everything bad that has ever happened. I still stand by my belief that God has huge plans for my kids. I have come to realize even more so over this past year, that even though we have certain pictures in our heads of what our children’s lives are going to look like as they grow up, their lives most likely won’t look anything like that picture. With and/or without a life-changing diagnosis, we have to be open to God’s plan for them, not ours.