When I was diagnosed with Myotonic Dystrophy in 2016, I didn’t really give it much thought. I didn’t ask the doctor a myriad of questions; I didn’t run home and Google it. No tears were shed and I didn’t even mention it to my family for several days.
Yes, I was told it was fatal, that I might have some outward signs of disease particularly in my face as the muscles would weaken and waste away, but the real threat was the muscles that could not be seen from the outside. In time, my heart would weaken and my lungs would become too weak to support life. This was the progression of the disease until life would no longer be viable.
My life expectancy was cut in half as I was told that I may have more fingers on one hand than years left on the earth. However, I didn’t let these words sink in. I processed it but never felt like it would be my death sentence so I didn’t waste time worrying about it, until a few months later when I realized that I could have passed it on to my two biological children, Luke and Cruz.
Utter fear set in when Cruz’s doctor said that Cruz exhibited all of the symptoms of Congenital Myotonic Dystrophy. It was then that I Googled it and dug up the photocopied articles my doctor made at the time of my diagnosis. I remember putting Cruz to bed each night and crying over him and praying for him. Then, when everyone else was asleep, I would open my laptop or the growing file of information and would educate myself about this disease. I begged God to spare Cruz.
It was several months before Cruz’s test came back negative and then Luke’s as well (I staggered their tests because the thought of getting two positive results at the same time was overwhelming). The relief that went along with it was probably the most joyful experience I have had in my life so far.
Even then, the reality that I had it was not something that scared me. It was ironic that I was the one with the muscle wasting disease yet I felt I had to be strong for my family who was having a much more difficult time accepting it. My husband, Ryan’s thoughts went to the future wondering if we would lose our home so that I could get the care I may need in a nursing home. My mom’s fears went to the past because she blamed herself that I inherited this genetic condition from my dad. Yet I felt like I took it in stride. I knew the statistics and my prognosis, yet I never felt like I would lose the battle. The thought that I would not make it until there was a cure never fully entered my mind… until this weekend.
I have to do a lot of physical therapy at home to optimize my physical abilities. I was on the kitchen floor just completing about 40 minutes of traction on my neck when it hit me. This disease is progressing faster than I had hoped. I looked at what I could do a year ago and what I can do now and I realized that Myotonic Dystrophy seems to be defining me and may swallow me up. I might not live to see the cure.
I rolled over onto my side and, for the first time since being diagnosed, I sobbed for myself. Ryan came over and held me and I told him that I was scared that I wouldn’t see my young children grow up. I told him that he and Luke are best buds but Cruz is like a part of me from deep within. I love all of my children the same and most are grown and have their own loves, but Cruz draws his strength from me (and me from him). I could not bear the thought that he may lose me before he is grown.
Through tears I asked Ryan to pray with me and I put my hands in his. One by one the tears fell from my cheeks and collected like a pool on top of our praying hands. The words fell from my lips and rose to my Lord as I plead with my Abba Father. Lord, in Your mercy, hear my prayer.
Heavenly Father, You did not create disease but You are the Divine Physician who can cure all illness. You are the Way, the Truth and the Life and I submit every ounce of my being to you.
If it is Your will, let me live to see my young sons become men. May they be men of faith. Let me live to see my grand daughters and future grand children become the women and men You created them to be. May they love You as I love You. And may I be a living testimony of Your grace as I fulfill Your purpose for my life on earth..
Please, Lord, may I touch Your robe? Can You hold me in Your hand and carry me from disease, from fear, from uncertainty, from pain and from darkness into Your light?
Lord, I give You my fear because it is too much for me. It is not my cross to bear because You have already won the battle. Please let me live in the light of that victory on this side of Heaven before I live in the glory of eternity with You. I promised Ryan 60 years together. I pray it is Your will that I can fulfill this.
After my prayer, I danced. Not a beautiful, flowing dance for My Lord, but I put away my neck traction and cranked Soulja Boy and tore it up on the kitchen floor. I hadn’t danced in a long time because it had become too physically hard, but my soul needed to in that moment.
Soulja Boy off in this oh
Watch me crank it, watch me roll.
Watch me crank dat, Soulja Boy
Then Superman dat oh
Now watch me you….
I even turned the volume up because I figured this was my one chance to shake the roof without Ryan telling me to “turn that sh!# down!” That night, I slept better than I had in months. I even had dreams. In the morning I thanked God for sweet sleep in Jesus.
Then when I read my devotional, these words provided the sweet assurance that God heard my prayer.
‘Do you not know that your body is a temple of the Holy Spirit, who is in you, whom you received from God? You are not Your own; you were bought with a price. Therefore honor God with your body.”
1 Corinthians 6:19
He heard my whisper and He spoke to me with a roar. Watch me crank it, watch me roll…