Circles

Progress, as a relative term, has quickly changed to dancing in circles. Initially, I would hold on to any little positive that I could find, such as discontinuing a sedation medication or an incision healing correctly. And while it is important to be grateful and hopeful for those small achievements, as a mother and an advocate for my child, my mind quickly wanders to the other side of the coin that leaves me to question the outcome of the situation; after all this is over.

To others who do not have to be in this difficult position of understanding how the details of Conley's care can affect the quality of life as he prepares for transplant, it may be easier to cling on to any small positive as a way of maintaining hope in such a devastating situation. That is what I did; for weeks. But it is unrealiatic to remain in that mindset. As we say, our blissful ignorance has been replaced with the crucial reality. The outcome of his condition continues to remain unclear because although there have been positive steps in the small, day to day tasks, Conley is still very very sick. While none of the doctors think that any medical intervention has been excessive at this point, it would be ignorant to not allow ourselves to understand the capacity of how this can potentially impact Conley's quality of life moving forward.

The heart, lungs and kidneys are all connected, and up until now, only Conley's kidneys have been significantly impacted. We have had moments of sporadic issues with his lungs and his heart, but those were always temporary in relation to maintaining a solid position with his kidneys through dialysis. The impact that his heart and lungs have received in the past two weeks is still unknown, and there is a potential for them to continue being affected as long as Conley remains in such a critical condition. The paralytic he is on can have short (and long term) affects on mobility and strength. So why we continue to fight for stability, the outcome of the situation is still unknown. Will Conley still be the happy, feisty, warrior he has always been, or will there have been some permanent damage in other areas that can affect such a spirit? As a mother, this is hard to swallow. We wait so long and work so hard to master each milestone with a chronically ill child, and knowing they may not return to what they were is a blow to my heart. The hard part of all this is the impact of the decisions we make now are not easily understood until it is all said and done. The question of will he survive is not the only question we need to ask; it now has to be what will he be like if he survives. If you would have asked me years ago about a hypothetical situation similar to the reality we are facing today, my response easily is that I would do anything to make my child survive. But as I sit here in the midst of all of this, the answer to that question becomes much more complicated.

As I mentioned before, I find myself in a position of pure surrender to the process we are in. Trust that my surrendering is not the same as giving up. I have not given up on Conley or his medical team. Actually, I've become quite impressed with how amazing they are and how much they value my opinion as a mother. But I have come to understand and appreciate that it is not my job as a mother to learn every single aspect of his medical care while he is in such a critical position. I always thought the more I knew, the better able I was to serve as his mother, but I am realizing that the fight and anxiety of too much knowledge can become more detrimental to the process. I still come and sit at the hospital all day, every day, even though there is nothing to do. Sometimes I can't even touch him or talk to him because it can be too over stimulating. But, I'm still here and he knows that.

I have noticed a slight change in Conley within the past 24 hours. I think, like me, he has finally surrendered to the process by not fighting the medication or sedation, which in turn has made him more comfortable and suffer less. While part of me feels relieved by this observation, the other part of me worries that he has lost his fight; his feisty attitude. But, then I remember my surrendering does not mean I have given up or lost the fight. It just means that I will allow the process to happen, and allow my heart and soul to be open; to be free.

For those of you who pray, I ask that you pray specifically for Conley's comfort; that he does not suffer, and that he can allow himself to be free of any burdens that he may have, so he can rest comfortably. This is what I ask. As much as I want to see Conley awake and smiling, that desire is much less important to me than his level of comfort and suffering. It would be selfish of me to ask and pray for something that would make ME feel better or comforted, or to ask for a certain outcome that I want. So in turn, I ask that we all focus our prayers around Conley, and what would make his heart be settled, regardless of the outcome.