Here we are just days before Christmas and instead of the usual excitement of the holidays, I am conflicted with feelings of anxiety, fear and a bit of uncertainty. Kemarah was scheduled for a regular check-up with her cardiologist on December 1. As I was eagerly anticipating this appointment ( as I do all of her appointments), I began to notice something about my daughter's face that didn't look quite right. She looked a little swollen around her eyes, and I also started to notice some swelling in her belly. I knew we had an appointment coming up, so I decided to wait and ask the doctor when we saw him. 3 days before the scheduled appointment, we received a call that it had to be rescheduled because the doctor was going to be leaving town. I decided I could not wait until the next appointment to address the issues I had been noticing, so I called her pediatrician. He had me bring Kemarah in right away, and immediately assessed her and determined something was very wrong. Kemarah was admitted to Providence Memorial Hospital and began to undergo a battery of tests. One of the tests was another echocardiogram. She had this test done in June and we were told her heart was functioning at about 38%. On December 1, it was at 28%. I immediately panicked when I heard that number. How could things be getting worse? She was taking all sorts of medication to at least help stabilize her, if not help make her better. The doctors also determined that her belly was enlarged due to an enlargement of her liver. Her liver was not functioning well due to the inadequate circulation of blood from her poor little worn-out heart. After all this presented itself, we were first confronted with the "T" word--"transplant". Amongst all of my fears the past year, that was perhaps the biggest. It was what I hoped we would never have to face, and if so, at least not now, with my tiny 3-year-old little girl. Yet, here we were--staring it right in the face. We no have another appointment in Houston on December 20 to get their take on the situation and see what they suggest. Once again, we are playing the waiting game with so many questions and so few answers.
After the initial shock of this news, I began to feel very sad. I felt as if I were grieving some great loss, and in a sense, I guess I was. I was grieving the loss of the normalcy of life. My child may never be "normal" and that is devastating for any parent. I was also angry at the injustice I feel she is facing. Being a woman of faith, I asked God why He was allowing this to happen to my child and over the past couple of weeks I have received a few different, yet consistent answers. The first one is simple: God is God, and we are not. His ways are not our ways, and His thoughts are not our thoughts. The very fiber of my being is to TRUST God always, even when the answers are not right in front of me and I can't understand what is going on. That's what FAITH is, right? Believing in things that are not seen. God does not owe me an explanation, nor does He need my approval for His work to be done. Secondly, I have come to realize with great clarity that there is far more to this life than what we do here on earth. As my husband so courageously shared with me several days ago, if this trial for us brings one more person closer to the Kingdom of God, then isn't that worth any earthly life? Wouldn't it be worth the sacrifice of one temporary, physical, earthly life for someone to gain eternity, even if that earthly life belongs to my child? What better witness could one have? And lastly, I believe now, more than ever that my God is able to heal my child if He ever chooses to do so, yet that is likely not His priority. Like I said early, the verse that keeps coming to mind is that His ways are not our ways. I may never understand what seems like the idleness of God. Why doesn't He intervene when He could so easily? But I now know that my faith in God is not based on what He does or doesn't do, but solely because He is God. Just because He may not choose to act the way I think He should, does not mean He is not able. My job is to Trust. Believe in what I cannot see, and have faith in what I don't understand.
