It was about this time two years ago that we received the boys’ diagnosis’s of Becker’s Muscular Dystrophy. Tomorrow is actually two years to the day we got the phone call, after 4 months of grueling testing, with the news about Chase. This was followed up by a 3 week wait to find out, to our surprise, that Roman has BMD as well. What does two years after a BMD diagnosis look like?
It looks like:
A lot of ups and downs.
A lot of lessons on patience.
A lot of big toothless grins after conquering big challenges
A lot of tears of frustration when the body doesn’t cooperate with what the mind wants to do.
A lot of trying to figure out what they can and can’t do, and realizing when there is shear determination in their minds and hearts, I shouldn’t let anything be off limits for trying.
What does Bob Marley have to do with all of this? More on that later.
 |
| This was their attire for the weekend last time they visited their big sister! |
They are both continuing to do really well. I am thankful to say that there has not been any noticeable progression at this point, which is truly a blessing. Chase had a rough year last year with two broken arms, pneumonia, and influenza B wreaking havoc on his little body. This year his health has taken a very positive turn. We are shooting for a full year of no broken bones, which will occur in May! With his health staying strong, the avoidance of broken bones, and the support of amazing staff and teachers, he is making a ton of progress in first grade.
His biggest adventure/challenge right now, is he has his heart set on joining a summer swim team. Of course this has been inspired by watching his super successful big sister! One of the requirements for him to do so, is to be able to swim the length of the pool. I started both him and Roman in swim lessons 4 weeks ago, in hopes that maybe he can get there. Chase’s first lesson was tough. The water was cold for him and we have found that extreme temperatures cause the muscles to work harder and want to cramp up. Swimming has always been a big challenge for him, especially the first few times he hits the pool in the summer. He ended up having to sit on the side of the pool 3-4 times during his first lesson because his body kept seizing up and his legs kept cramping. But you know what? He kept getting back in the water and trying. He made it to about a quarter length of the pool, but he ended up in tears of pain and frustration with about 5 minutes left of his lesson. Thankfully Mark was there to carry him into the locker room, put him under a hot shower, and carry him to the car. It was tough for this mama bear to watch. A part of me wanted to say, forget it. This is too hard on his little body. I can’t handle watching him end up in tears, and not be able to accomplish what he has his heart set on. One of the biggest challenges these last two years has been keeping their muscles moving and active, but within reason, and not to the extent of causing more damage. Instead of throwing in the towel, I asked him if he wanted to go back the following week and try it again, he didn’t hesitate. He was going back.
I ordered two thermal swim shirts in hopes that they would help them both stay a little warmer in the water, and we went back for lesson number 2. I believe the shirt helped keep his core warmer, and I could see the determination on his face that this lesson was going to be better. It sure was! The little guy swam half the length of the pool that time! His instructor made sure he took a few more breaks in between swims so there was no need to stop for cramps! There were no tears during this lesson, only toothless grins. His legs did start to cramp up after he got out of the water, so we had to sit down for a little bit, rest, and stretch. He needed a lot of help getting dressed afterwards and we had to walk very slowly to the car. I asked him several times if he needed help or wanted to stop and rest on the way to the car, but he kept saying “No, I’m fine.” His third and fourth lessons the following weeks went just as well, he swam half the length of the pool AND jumped off the diving board and swam to the side of the pool all by himself. I haven’t really been able to figure out an easier way to deal with the muscle fatigue afterwards, other than continuing to help him get dressed, and taking our time walking to the car. A part of me wonders if all of it is worth it, or if it is too much and I shouldn’t be letting him do it, especially when he can barely walk up the stairs and out to the car. Seeing that smile on his face though, and hearing him say he feels stronger and braver afterwards, as long as he wants to, we will keep going back.
Roman is showing very minimal symptoms. He will complain every now and then that his legs are tired after doing a lot of walking, but so far he has not necessarily had the cramping that Chase has experienced. I have noticed that swimming taxes his legs pretty good too, sometimes when he gets out of the water his calves will tighten up and he has to walk on his tip toes for a little bit until we stretch them out. He has done really well in swim lessons and seems to really enjoy it. It is hard to tell during lessons because he is SO serious. I guess he takes his instructions very seriously, but when I ask him afterwards if he likes it, and if he wants to go back, he always says “yes”. His confidence in the water is improving, he was able to jump off the diving board and swim to the side of the pool all by himself by the fourth lesson, and the boy can float like a buoy!
Roman is finishing out his last year in preschool! It is so hard to believe that he will be in Kindergarten this fall. I have absolutely no doubt he is ready. One of the biggest things that has impressed me about this guy at his ripe ole age of 5, along with his curiosity and crazy attention to detail, he has shown incredible patience when it comes to his big brother. The term “patience” isn’t usually used when describing a 5 year old, and believe me, when it comes to a lot of other things, like getting a toy he really wants, he is a very typical, impatient little boy. When it comes to his big brother, it is a whole different story. I can think back to all of the activities Roman has been drug to for his brother, where he has just sat back and watched. In the past couple of years, I think about all of the doctor’s appointments we have had for Chase, for which Roman has tagged along. More recently, I really started thinking about this after our swim lessons. I usually have the boys stand in stalls in the ladies room. (Yes they are too old to probably be in there, but as long as Chase needs help, I will not send him alone into the men’s room.) I bounce back and forth between the stalls helping them get their wet swim suits off, and their clothes on. Chase actually needs a little more help than Roman. Roman will wait for my help, or if he can do it himself, he will do it, then stand by and wait for me to help Chase. Then on our way to the car, Roman could easily run off ahead of us and get frustrated because we are walking so slow, but he doesn’t. He stays with us, maybe a little bit ahead sometimes, but he never complains and never says “hurry up!” I can think of numerous times when we have been places, and we have had to stop and let Chase sit down, and Roman sits and waits too.
It is crazy how fast two years have flown by. I have to say though, everything has been “all right.” Which brings me back to Bob Marley. Mark and I got married almost 10 years ago on the island of St. Thomas. Every day we could hear Bob Marley playing in the background at our resort and it was such a relaxing, almost comforting sound. Bob Marley, particularly his song “Three Little Birds,” (you know the one in which he sings “don’t worry, about a thing, because every little thing’s, gonna be all right”) became a thing between Mark and I when things got rough. When Chase was born prematurely and was in the hospital for 2 months, we would often listen to Bob Marley on the way to and from the hospital. As silly as it may sound, we found a lot of comfort in those words.
I can remember so vividly two years ago when we were going through the testing and waiting to find out what was going on with Chase’s body. When we were about a month into the testing and we had received the first test results showing he was experiencing muscle deterioration, we were beside ourselves with worry because we didn’t know what was causing the breakdown, but we knew it wasn’t good. My parents spent some time with the boys one night while Mark and I went out for a much needed dinner, to our favorite restaurant called Ya Ya’s, so we could talk about things without little ears around. It was a nice evening, but of course our conversation centered around all of our worries and fears for Chase, and how unfair it was, after already fighting for his life once, now he has to suffer from this? He is obviously a strong and brave little guy, but how strong and brave is he expected to be? Before we left, Mark excused himself to the restroom and I sat quietly at the table just mulling over all of this. Then a familiar beat came on overhead, a beat I could hardly hear, but it was very distinct……It was Bob Marley singing “…..every little thing’s gonna be all right…..” When Mark came back to the table, he could tell by the look on my face that something was going on. I told him to hush and listen. It took a few beats, but sure enough, he heard it too. I suppose you could say it was a coincidence, although I question why they would be playing Reggie in a Euro-bistro. Honestly, in that moment, we both felt like it was a gift from God telling us, no matter what happens, no matter what the diagnosis is, and even if there will be more pain, WE ARE GOING TO BE OKAY. We decided to leave right then to go home and hug our boys (and because we didn’t want the whole restaurant to think we were tear-streaked, blubbering idiots). It was exactly what we needed in that moment two years ago, and we still refer to Bob Marley’s wise words to this day when we need a little pick-me-up after being flooded with worries about the future.
I went ahead and provided a link below to a video of Bob Marley’s “Three Little Birds” in case anyone didn’t know what I was talking about, or in case anyone could use a little pick-me-up.
This is my message to you oooh oooh.
Team Strathman 