It’s been three months since we found out Joey has a lysosomal storage disorder, two since the official diagnosis. My concept of time has changed completely. In some ways it’s been three very long months – many, many sleepless nights, a gazillion doctor appointments, meetings upon meetings with various agencies including two with Hospice of the Western Reserve. However, I also can’t believe it’s been three months already. Where does time go?
Many days I just want to go back, turn back the hands of time to when we didn’t know, when life was “normal” and our challenges were limited to diaper rashes and possible food allergies. Other days I just want to fast forward to the day we all will be united in heaven, to when we get to spend eternity together….when pain and suffering will be no more.
Living in the present is hard because it means we have to sit in our pain. We have to befriend it or it will consume us. Yes, I’m grateful beyond words for each and every day we have with Josiah. We cherish every single moment with our precious boy and take none of it for granted. Our joy is rich and our love is deep, richer and deeper than I ever could have imagined. Yet, every moment of bliss and joy is countered with tremendous grief. Unless God intervenes, our days with our son are numbered. Limited. Our hearts are constantly tossed from one extreme to another: from joy to pain, from hope to grief… Back and forth and back and forth.
When we first started out on this journey my perception of hope and pain was limited. I thought it’d be one or the other. Either you hold on to hope and feel no pain, or you allow yourself to be so consumed with pain there’s no room for hope. Now I know the two can coexist. It is the same with faith. Faith doesn’t take away the pain, but it gives you hope and perspective. We are hurting with hope because we know there is more than this. This is not our home. We know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven. In the words of Levi Lusko, “Because of Jesus we have hope, even in the midst of the worst storms of this life, we have an anchor for our souls.” So as our hearts are being tossed back and forth, as the waves of pain and grief sometimes sweep us off our feet, we hold on to our living hope – the anchor of our souls, firm and secure. “For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but what is unseen.” (2 Cor. 4:17-18)
Our concept of time has changed and so have we, but He is the same yesterday, today and forever.
%d bloggers like this: