Well, I wish I knew the answer to this question. Or, maybe I don’t. If I had the option of having a crystal ball to look into the future and see what this disease will look like in my boys in 5, 10, 15 years from now, I don’t know that I would want to see it. The truth is, there is such a wide spectrum of possibilities, we are trying our hardest not to worry about “what could be.” I have been on several support group sites for families affected by BMD, I have seen small children struggling daily with weak legs, and teens who are already in wheelchairs, as well as, men who made it into their 50’s before they needed any assistance at all. I have seen men who are candidates for heart transplants due to the damage the muscle weakness has caused to their hearts, and I’ve seen people who’s hearts aren’t affected at all. We don’t know how long we can be so blessed as to have Roman stay symptom free, and Chase to only experience symptoms with excursion. Our main goal is to capitalize on their strengths Right Now, and focus on all the things they can do Right Now, and not get too caught up in what they can’t do or won’t be able to do in the future.

Don’t get me wrong, getting to and keeping in this frame of mind has not been easy. I have had a lot of conversations over the last few months with God about what in the world this is all about. What is He trying to teach us? I know God is suppose to help me find joy in the sorrow, but really? Why use my kids for this, particularly Both of my kids? Really God, one was already too much? I know there are a lot of theories about this, and I’m sure I will never know the true answer until I meet my maker some day, but right now I am very confused to say the least. Even though I am a little uncertain at this time, I will never lose hope and faith that there is a reason, a reason bigger than any of us humans can comprehend. I know that once we get past the whole shock and disbelief of the situation, we will be able to see the blessings and beauty that God has intended for us.

So, back to: What does this mean? This means, I will continue to put Chase in Tae Kwon Do and T-ball because he loves them, and he can do them Right Now.

I will continue to let the boys stack their toys up as high as they can to see how high they can jump and I will try not to cringe at the mess I will have to nag them to pick up later.

I will find delight in Chase jumping from the top step of his school bus into my arms, even when the bus driver shakes his head and tells him to stop, because there is nothing as amazing as seeing a little boy’s face light up when his sometimes achy, tired legs allow him to fly into his mom’s arms.

I will continue the same bedtime routine that I have had with the boys since they were babies. After rocking in the rocking chair and singing our usual 3 songs, Roman still insists that I carry him like a baby over to his bed, and lay him down in it as he closes his eyes and presses his precious sleep sack up to his nose. As any of you with a toddler bed knows, those darn racecar beds are basically so low they are like sleeping on the floor. My chiropractic husband, at a head level cringes every time I do it because he knows the effect that stooping low like that with 40 pounds of dead weight has on a person’s back, but at a heart level, he knows that even though it hurts, I won’t stop until the day Roman won’t let me, or I really physically can’t do it any more.

On rough days, I will carry Chase from the park or store to the car when his legs begin to cramp, and I will deal with the looks that I have gotten from people who pass us by who think I am simply an overindulgent mother carrying her 5 year old son because he ‘might be a little tired.’ I will also try really hard not to let my mama bear out too much in situations such as this, or anything else we may face when people, teachers, coaches, etc. don’t quite understand.

We will continue to look at our blessings in our situation. They are two, crazy, rambunctious, sweet, loving little boys who don’t hesitate to say “I love you” to me and my husband every single day. How incredible is that?!! We will continue to pray for peace, acceptance and strength in ourselves, and of course a cure for the millions of kids affected by one of the hundreds of neuromuscular diseases too many little ones are facing today.