Today is the anniversary of the day our lives changed forever. Eight years ago today, we were told that T.J. is “a Duchenne boy.” Eight years ago today we heard the word “terminal” in relation to our child.
As I was getting ready to post this, I briefly thought about updating my original post from 2015. I even thought about just updating the picture. But for some reason, I feel the need to repost just as it was five years ago.
It reminds me of how quickly some things change yet how steadfast other things remain. My boys are older. Connor isn’t even at home anymore and T.J. is in highschool. But eight years post-diagnosis, this day still stings. The pain isn’t as sharp, but it’s pain none the less.
But today is just that, another day. Another day of love. Another day of blessings. And another day to show my boys just how much better they have made my life.
(Facebook: @tjstriumph, February 8, 2015)
Depending on how you calculate it, there are 36 months, 156 weeks, 1,095 days or 26,280 hours in three years. What would you say if someone told you that they thought of something terrible every single one of those hours, days, weeks and years? Would you say they are dwelling? Would you say that they need to move on? Would you say they need to “suck it up” and look at the glass half full? Would you say that it was three years wasted? On February 7, 2012, I probably would have. But on February 8, 2012, my entire view of the world was put to the test.
Three years ago today, we were told that our then 7-year-old is terminal. We were told that there currently is no cure. And without that cure, there is a 0% chance of surviving this disease. ZERO percent. Zero. We were told that no matter what we did or what we sacrificed, our little boy’s body would slowly deteriorate. We might…”might”…be able to slow the effects of the disease through medication and daily stretching/therapy. But ultimately there is no treatment. He will be in pain. He will suffer. Every muscle in his body will turn to fat, ultimately his heart and lungs, killing him way before his time. That could be at any age. The “average” life expectancy is 23 on some websites or some are more optimistic and say even up to 25 or 26. Since TJ’s diagnosis though, I have witnessed others in the Duchenne community bury their sons at the age of 9 all the way up to the very rare cases of men who survived to their 30s. So when we say that we live for today, we mean it. There isn’t a day or a waking hour that goes by that I don’t think about Duchenne. Granted, the pain isn’t as sharp and most of the time it is simply thoughts as to what needs to be done next. What meds are we running low on? What doctor visits are coming up this week? What needs to be documented for which doctors or clinicians? TJ has a headache and gets pain relief medicine, it gets logged for his clinical trial physicians. So even in the wee hours of the morning, I can be found sorting meds and making journal entries. Most of the time, I wake up to a scribble and I have to take a moment to try and remember what happened. So yes, we are faced with the harsh side of parenting every single day. There is no way to sugar coat it.
For instance, the other day I watched my son struggle to get into the front seat of my car on his own. Typically, I wrap my arms around his chest from behind his back and lift him into his seat. Even though I don’t drive a big SUV or a truck, something as simple as sitting in the seat of a car is a monumental effort for TJ. So on that day when he said “Mom, I think I can do this.”, I had to let him try. And he did it. Eventually. He started by crawling into the floorboard. He then put his forearms on the seat, got one leg shakily to the side of him for leverage and pushed up from the seat with all of his might. His entire body was shaking and he was winded after he was done. But he did it. He didn’t cry. He didn’t complain. He simply smiled at me and said “Phew.” And my heart broke a little bit more.
There are so many of these types of moments that make it crystal clear that the disease is taking a stronger hold with each passing day. We can see how the disease, the medications, and the daily struggles change him physically. And even when I want to hide from it all, and believe me I do try, the disease simply won’t allow me to turn a blind eye. Those of us in the Duchenne world call the phases of this disease “mini deaths.” I know we will have to mourn things little by little…when he stops walking, when he stops being able to use his arms, when he is unable to feed himself or to breathe on his own, etc, etc, etc… Knowing that these mini deaths will happen, doesn’t mean we have to dwell on them today though. Well, we try not to at least. Because even in the midst of our “new normal” day-to-day lives, we are granted so many glimpses of grace. If we allow ourselves to get stuck down into that dark pit of negativity and fear, we wouldn’t be able to lift our heads up to see those glimpses of light and hope. We wouldn’t be able to see those glimpses for the beauty that they are if we weren’t in such desperate need of something good to grasp onto. The ironic thing is that we now appreciate the smallest things in ways we just couldn’t without the daily struggles of having a “terminal” child.
We have had family, friends, and friends-we-have-yet-to-meet donate money to help find a cure or to help offset medical expenses. We have had complete strangers send homemade pillowcases, army memorabilia, pictures, cards, and emails. We have received uplifting gifts in many different forms. We have had meals brought to us. When we moved into a more accessible home, we had 13 trucks lining up around our neighborhood. We have had multiple groups of elders, church family and friends literally surround us bodily in prayer time and time again. We have had entire communities, even those to which we don’t live in, adopt TJ and our family in ways that I don’t know if I’ll ever be able to process. I have personally had complete strangers stop me and ask me if I’m TJ’s mom. One lovely woman stopped me in a local store to let me know that she was praying for us and asked if she could give me a hug, mom to mom. And nothing could replace all of the prayers, well wishes and positive vibes being sent for us daily. The list of blessings our family has received and continues to receive could go on and on. I have just touched on a few of many. I know without a shadow of a doubt I have failed to properly thank those that have been so generous to us. For that, I am sorry. And I thank you. From the bottom of our hearts, we thank you.
Even though I will never be grateful for the disease itself, and I will fight it until there is a cure (and there IS one!) or until I breathe my last breath, I can only be thankful for the profound lessons that continue to be learned. We slow down and are simply in the moment more. We live more. We forgive more. And we love more. Beyond anything though, we thank God for showing us 3 years of blessings, 36 months of friendships, 1,095 days of humble gratitude, and 26,280 hours filled with simple glimpses of grace.
“It’s not how much you give, but how much love you put into giving.” ~ Mother Teresa
“Everybody can be great…because anybody can serve. You don’t have to have a college degree to serve. You don’t have to make your subject and verb agree to serve. You only need a heart full of grace, a soul generated by love.” ~ Martin Luther King, Jr.