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Five years ago an "earthquake" of immeasurable magnitude wreached havoc upon the hearts and minds of my husband and I. We had heard these words for the first time: "Your son has DUCHENNE MUSCULAR DYSTROPHY." Our earth shook violently and trembled; everything was disarranged and thrown around until settling into an ominous silence. Shock. Everything looked differently after we looked out for the first time. Things that seemed insignificant no longer did or expontentially more signifigant.
People think that the highest peak on the Richter scale would be the most scary, but it's those aftershocks that are truly more terrifying. Fear has set in from the inital devastation and any shake afterwards and the terror reverberates throughout your mind all over again. The proverbial earthquake happened so fast that we couldn't really wrap our minds around what was happening. Our son looks normal outwardly, besides obvious symptoms of Duchenne, but we see the truth on the inside. Duchenne has fully shown its self. Everyday.
It's confusing when your child seems like any other eight year old boy to everyone else, but as a parent you see glimmers of devastation waiting to happen. They are the aftershocks of which I speak, and they are worse than the initial blow. Without warning, the fault lines that previously broke open break free and new and old fissures tear open again. When I see my son fall, have difficulty with something, or not be able to do something because of DMD, this happens.
I believe these years have been one of coming in and out of reality. Some days I forget all about Duchenne and the worries that come with it, and then others, the realization comes again. Things are starting to become more real though. When I administer Dallin's medications and put his night splints on, all the doctor appointments, there is no more denying reality anymore. This is happening..and will gain momentum faster than I want to think about.
I've heard that a diagnosis like Duchenne can be described as emotionally bipolar, and that seems very fitting. Over these years I have experienced every emotion from severe rage to humbling feelings of thankfulness. I am so proud to have the children that I do and I thank God for them, but there is always a shadow looming. I slip into pangs of helplessness and fear as there is no cure; nothing I can do to slow this down. I am helpless to do anything other than be here every step beside my son while he goes through this Journey. He has parents, siblings, and family who love him very much and he will never be alone.
This isn't a completely horrorible tale void of any hope. Humans are very resilient and I have faith that these things have happened for a reason. A reason I may never know, but maybe we aren't supposed to. We have been extended too many mercies and experienced numerous coinscidences that cannot be for naught. These mercies give me absolute faith that God is working in our lives. Mysteriously and unseen, but He makes His presence known in ways you have to really look for. I "see" Him. I see light at the end of this dark tunnel. It flickers on and off some days, but my faith carries me into tomorrow.