helpless but not hopeless

I have sat many times trying to find the words to express how I am right now. My thoughts have been so incoherent that I have yet to be successful. I don't think that I can do much better at this time as far as organizing my thoughts, but I need to get this out of my head. The last couple months (okay, well the last six months) have been the biggest rollercoaster of my life. If I did not have the Holy Spirit living and active within me, I can most assuredly say that I would have been in a deep depression--especially during Chi's three-week hospitalization the last half of April.

I am so thankful for the servanthood of my husband who day in and day out picked up my slack with regard to all my duties as wife and mother. In a matter of speaking, I was apathetic. I was unmotivated. I was at a standstill. Not only was I at a standstill, but life trudged on around me. My world was spinning. I had lost my footing. John most certainly did his best to hold my pieces together. To say the least, he is amazing.

I am also very thankful for the extra acts of encouragement that I personally received during that time. Cards, letters, a listening ear, a gift basket, prayers, and meals to name a few. The littlest acts of kindness and support and encouragement mean more to our family during this time than you could imagine.

Most of the time we feel helpless. I want to be there for Malachi. I want to know what questions need to be asked. I want to be able to take care of my baby. I hate that we can't do it on our own. I know that John just wants to protect his baby and his family. And right now, we just can't. We can't do those things. We can't and we hate it.

We are also quickly reminded that the times Malachi does make it home, he will also very quickly be back in the hospital. With each hospitalization comes the risk of infection. Infection that his body simply can't fight. Each hospitalization, infection, illness has the potential to bring about the conversation regarding how aggressively do we want to pursue treatment--conversation that we loathe.

Not only that, but at times I feel like God is preparing me for Malachi's death. I am reminded over and over again how short his life most likely will be. I have dreams where I am sitting at his funeral. I hear songs regarding missing loved ones who have passed. At times I feel like I am ready to face this, knowing he will be in heaven. Knowing that he will be whole. Knowing that he will not be feeling any more pain. But I am not ready to say goodbye. We are walking a fine line between hoping for a miracle, hoping for heaven, and facing the very real reality of Malachi's situation.

(on a bright note, Malachi had a better day than yesterday--we'll take it)