In the recent months, I have not blogged, updated my facebook status, and only responded to emails when an answer was required. Life has had death grip on my very soul and my physical body was beyond exhaustion. The old adage of “get up, dress up and show up” has basically been my life motto lately. Dealing with a chronically ill child, the never ending stress at work and juggling a budget to continually pay medical bills took a harsh toll on me. I am the fixer, the wife, the mom, the house cleaner, the financial wizard, the finder of lost things….and I’m the one who cries in the car when no one else is watching. Sometimes, I’d like to slap the person who says trials make you stronger. I don’t feel strong, I feel like a whiny child who desperately needs a nap. There have been days so dark and so sad that I seriously wondered if I’d get to the other side. My prayers, my poor pitiful prayers, were reduced to groans only God can understand. I tried to pray, I really did, but no words would form on my lips or in my frazzled brain. My intentions were always so good. I would get up so early the sun was still sleeping and I would sit in the darkness with my coffee cup, journal and Bible. The only thing accomplished was drinking every last drop of my coffee. My journal has remained empty, and my Bible worn from reading the same highlighted verses over and over. Devotional books are in stacks on the side table, pens are still in the cup waiting for the heartfelt motivation to come.
Numerous tough decisions have had to be made for our son. These are decisions we never dreamed we’d be facing, but it is our reality now. Years from now, we will look back on this difficult time in our lives and will see the handprint of God. Now, I’m just hanging on for all it’s worth. There are no easy answers. I totally get it that others really don’t understand the journey of a long-term illness, especially an illness so rare that no one has ever heard of it. Still, there are days, you just want someone to wrap their arms around and tell you over and over: “It’s going to be OK”. No, his illness is not life-threatening, but it is certainly life-altering.
Still, through the tears, the moments of doubt, the endless medical appointments, and our days that revolve around how he feels there is hope. Hope glimmers when he shows his dry wit and makes us all laugh out loud. Hope hovers over us as he eats a meal and then still wants more. Hope sustains us when he has a “good” day. Hope envelopes me even when I have no words left to pray. Hope is ever present, even when I choose not to see it, it is there peeking out of every crevice of this unknown journey.
It’s really not about me or even Daniel. It’s all about God in His mercy showering His gifts daily in my life. It’s my responsibility to seek Him and see His goodness. It really doesn’t matter if others think I’m weak or a shoddy representation of a believer because I have the courage to say that life is hard. Prayers are not a performance, they are my communication with my Savior, and sometimes, the Holy Spirit intervenes to speak for me. God has us covered, even when we can’t pray or have no words left. His whispers in the dark push me onward, one foot in front of the other, until this journey is complete and His glory is shown.