Terrifying Loneliness

I'm terrified. There I've said it. As much hope as I have, there is this lingering visceral fear that lives inside me every day. I just want my little boy back. I just want our simple lives back. What? When? Millions of questions gone unanswered. How much longer can we all hang in here? A whole summer almost gone, eight weeks displaced, unknown, slow progress, terrified! I spend so much time focusing on our blessings, the bright side, grace, joy and all the really good moments we have because there is still so much to be thankful for. I guess sometimes I need to also give a bit of attention to the other sometimes unbearable side of this journey. And it's just excrutiating at times for all of us. Especially this uncertainty, that's the hardest part. There have been more than a few moments when I said to Jay "why can't it just be leukemia". It's a concrete diagnosis with a clear cut treatment path, and people know what it is. Now I am not minimizing the journey of a parent with a child suffering from leukemia, not even a little bit, only lamenting the uncertainty and rarity of the syndrome that we are dealing with. Hepatitis associated aplastic anemia is rare to say the least; aplastic anemia alone has a rate around 2 in 1 million, hepatitis associated aplastic anemia is a very rare form of aplastic anemia with only a handful of cases each year. There is likely a genetic trigger but one which may never be identified because it is just so rare. The treatments path is variable and less clear cut but can be very similar to leukemia... Which is why we are in the area of the hospital with leukemia patients which also feels lonely at times if I'm being honest. It seems like nobody else seems to understand what we are dealing with, or has ever heard of it. You have no idea how many times we've been told by well meaning family and friends, "Good thing it's not Leukemia" and it's hard not to feel a sense of dread. My point is, the big scary illness that you don't know is no less difficult than the big scary illness that you do know. In short, they both suck. Having a once vibrantly healthy child become so critically ill that he is dependent on near daily transfusions and there is a reasonable chance that he may not live through the illness (or the increasingly aggressive treatment) is mind boggling, every parents' worse nightmare... No matter the clinical diagnosis. And here we are. Making the most of it like every other family here. Breaking down at times. Falling apart when we can, sometimes even when it's least expected and inconvenient. Then I see that smile, those beautiful blue eyes with their undeniable sparkle, that little boy that brings joy to everyone around him... I can't help but hold on to hope because there it is right in front of me reminding me to hold on and trust just a little longer.