Monday, May 13, 2013

That day

Our world came crashing down when I self-diagnosed Noah with Duchenne muscular dystrophy on February 4 of this year.  Devastation is an understatement.  Those first moments when I realized that he had this disease were truly horrific.  Alone in our bathroom, face on the floor, sobbing, I knew I was in the midst of a moment that was changing my life.  I told myself aloud, that this was "it", the moment of knowing, where the veil is pulled back, and you can never go back to the life you knew before.  I've been having a lot of those moments this past year.  Heaving and sobbing hours later as I told Nick and then my mom and dad, I just kept repeating "I'm so sad, I'm so sad".  I can't write this without recalling and having the same feelings bubble up, which is why I haven't written a word of this down until now.  The weeks that followed were a blur of doctors appointments, and grief.  Overwhelming grief, the kind where you don't care about much anymore.  Of course my kids are what made me go on, my love for them and the fact that they need a strong mama who can show them what it means to cling to God when walking thru fire.  Try as I might, I could not help torturing myself with every detail of this disease, and everything it would take from my son.  Sickness in my heart beyond compare.  Wanting to get away from that mental pain, but finding it a constant companion.  I cried out to God and He would give me relief, peace, sleep.  Getting out of bed crying in the middle of the night only to crawl into bed with Noah and wrap my arms around him, weeping for him, thinking about his deep peaceful breathing and imaging a time when his very breath would be hard to come by.  These moments of despair were tempered with moments of peace beyond explanation, knowing God is in control and has Noah's life in his very hand.  Knowing our God makes all things work together for good.  Believing these truths about God even more so then ever before in my life.  Storms in life do not change who God is, and knowing that He has known about this "turn" in our lives forever is of great comfort to me, he is not surprised by it.  He hems us in, he goes before and behind us, and knowing this soothes me.
And in the midst of this was our sweet children, our sweet newborn daughter.  Unspeakable joy in the midst if unspeakable pain.  The deep realization that God gives to us so freely his blessings, that we should appreciate them, and cherish each moment.  God timing is impeccable, and seeing the joy he gave to us in the middle of such a hard time spoke to me volumes about his love and compassion for us.


  1. Dia. I love you so much. I love reading your words. We are continually praying for your sweet family. You are so strong and are such a wonderful example to me. Thank you for that... :)

  2. I just want to send you big (((HUGS)))

  3. I just wanted to send you big (((HUGS)))