Over 10 years ago when I first started Caed's blog, writing quickly became my "therapy" as I sat down at the computer each night to recap the day's events. It was literal, as though I needed to write down the words the Lord was pressing into my heart for them to become real and clear to me. I have found myself today desperately needing to release my heart. I have bottled things up, trying to remain strong and positive. To be the glue. To keep things running as "smooth" as possible....as a wife, mom, nurse, teacher, daughter, and friend. The truth is, most days I am on the verge of unraveling.
The past 4 1/2 months have not been the hardest days we have lived through with Caed. The years (particularly) of 2008-2010 do not compare. Yes, Caed has been admitted to the hospital 8 times with HSP, thus far, yet nothing comes close to actually having to LIVE in the hospital. Those months, both in Lubbock and Omaha, knocked the life out of us all. I am reminded of that very fact every single day. Caed is home. He is "good." He is attending school and doing lots of things any normal teenager would do. Yes, his daily medical needs are exhaustive and he has his limits, but...we have been forced to endure much worse days, much worse. In comparison, I would take these days of HSP 1000x over, compared to the early days of Short Gut. For this I am so very thankful. God has been good to us...to Caed.
Yet, being transparent, I will admit to the tremendous fear, overall sadness, and a mind/body/spirit which is beyond exhausted. Grief crept into my life on June 1, with Caed and Marilyn's diagnoses. All summer, I battled trying to be the mom and friend to both of them. Guilt consumed me. Caed's illness, auto-immune disease. Marilyn's, terminal cancer. My child needed a (chemotherapy) infusion the same day as her funeral, 300 miles away. How could I abandon my child....how could I abandon my friend?
For the past 4 months, event after event after event have entered our lives. They have been huge. I have found myself asking on more than one occasion, "What next God?...I just can't anymore...PLEASE make it all stop!" And in the same breath, so very thankful for this road, this season in our lives. I know beyond a shadow of a doubt, and from experience, it's in THESE times! These are the times the Lord uses to bend us, to mold us, and to shape us to be more like Jesus. As much as it hurts, and as much as I (humanly) want to take any pain away from my family...I know the Lord is at work within us all. As much as I sit in the stands during a football game and wish Caed's life looked like that of his friends, I know He is working in and through him. I know there are things He wants to show him, that Caed might not be as receptive to, if his life was "good and perfect and normal."
This afternoon I heard a preacher on the radio say "being thankful after your storm has passed is gratitude.....but being thankful during your storm is FAITH!" Yes! I believe it. I have lived it so many times, and yet...why is it so hard every time? My heart is guarded and full of fear. Yes, God miraculously healed Caed before...but will He choose to do so again? I don't have the answer to that question. I know God can! But I don't know His ultimate will.
I realize this post is all over the place. Just like the thoughts inside my head. Positive one minute. Full of fear the next. I am boldly asking for very specific prayer. Of course, Caed's healing is at the top! But we desperately need prayer as we wait, as we continue on this journey, through all the twists, turns and bumps in the road. That physically, mentally, and spiritually we will be renewed. We are very weak. I personally, am walking each day in a thick fog of grief. I am NOT without hope, but my body and heart are equally very sad and utterly exhausted. Please pray that the Lord will not only show us His new mercies every morning (I know they are numerous!)...but that He will also lift the fog of sorrow that has consumed my heart.
