The Latest Test

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.

Let the Waiting Begin....Again

We're now just a few weeks away from another check-up for Miss Kemarah. We know that this next one will include another echo which gives me butterflies for weeks in advance. Seeing my baby girl who looks so happy and healthy on the outside, and then going in to the appointment and hearing how things are so messed up on the inside is always difficult. I find myself praying, hoping, each time that they are going to look at that Big, Happy Heart and tell me that it isn't looking so bad anymore--that things are better.
One of the most difficult things for me has always been waiting. Waiting for anything, big or small, has never been a favorite activity of mine. So throughout this last year, God has definitely been working on me. I have come to understand, more than ever, that I am not in control. Things in life will run their own course, although sometimes I may be foolish enough to think I have some kind of influence over them. The loss of control, or the understanding that I never had it to begin with, invoked a new weakness in my life--FEAR! The thought of possibly losing a child, and dealing with a sick child has been my biggest fear since I realized I was going to be a parent. The mere thought of something happening to one of my children simply made me cringe, and I would say that little silent prayer, "God, please don't ever let that happen to me." Then one day, it did happen. After three days in the pediatric ICU, I never shed a tear, until the doctors told us we could go home. The thought of taking my child home, away from the doctors, the nurses, the machines that were constantly there to reassure me, was completely overwhelming to me. Kenya left to get lunch, and I was left there, just me and my sleeping little girl, and I began to cry. I cried uncontrollably. I was afraid.
I lived with that fear for months after wards. How would I be able to cope if she was torn away from me? Would I be able to tell if she was getting sicker? Would I be able to do all the things she would need for me to do? I was so afraid of all of it. During those months, God began to work on my heart. I was reminded that I was not given a spirit of fear. I was reminded that He knew the very number of hairs on my baby girl's head. That while she was forming in the womb He knew her and her days were already numbered. I began to realize that there was nothing my fear could accomplish, but I had to make a CHOICE not to let it control me. I struggle everyday with my FEARS of my daughter's life, and most days I overcome it. Sometimes I don't, but I know in it all that my job as her mother is to love her--recklessly, without limit, uncontrollably. And in giving my best to her, I am giving myself more than I ever could have imagined. I have to trade the fear of what I could lose, for what I know I have. And right now, I have a beautiful, bright, amazing 3 year old little girl. I cherish everyday with her and know that through all my doubt, my fear, my uncertainty, He is not shaken, and He is in control. So I wait in peace, knowing He is in control.

Heart Break

When we found out about Kemarah's heart, I was heart broken. Of course she was the one with, quite literally, a "broken heart". Never in my life have I experienced such a broad spectrum of emotions--fear, anger, sadness, hope, desperation and helplessness all at the same time. Over the past few months, each day has brought its own set of challenges. As I watch my little girl live her life as though nothing is wrong, I sometimes question if doctors really do know what they are talking about. How can my happy little girl be "sick"? Each day I pray for her healing, for my own peace, and for patience. Some days are better than others and the day will pass without much thought about her illness. Other days, it seems to control every thought and emotion. I've found that the hardest parts of my days are in the mornings on the way to work after dropping her off. I sometimes just cry the whole way--seeking answers, feeling angry, and wanting so bad for everything in her life to be "normal". The other hard part is sometimes the night, whether I'm laying next to her in her bed as she drifts off to sleep, or lying alone in my bed, letting fear of the unknown take over. Realizing that I have no control in all of this has been my biggest obstacle. As one of my favorite songs says, "I'm so close, to what I can't control." I want to make it better, and I have to face the reality that I can't! In the meantime, I continue to take one day at a time, and deal with whatever emotions each day brings. I hope that in time we will both have our broken hearts healed.

What is Kemarah's Big Happy Heart?

For those of you who don't know me, and for some that do, you may not know that in January of 2011 my daughter, Kemarah, was diagnosed with a chronic heart condition called Dilated Cardiomyopathy. In other words, her heart is enlarged due to a lack of function in one of her ventricles. Like any other muscle, the heart grows when it is "worked out". Since Kemarah's heart is not working properly on one side, the other parts work extra hard to try and compensate for it, thus causing her heart to become larger than it should be. We are now 9 months into this diagnosis and I have realized one thing--I have no control over this situation! As a parent, we would like to think that we have some kind of control over what happens in the lives of our children, but we are only fooling ourselves. I have decided to create this blog for a couple of reasons: one, as therapy for myself, two, to help others cope with similar circumstances, and three, to keep others posted on Kemarah's progress.