Today was a UVA day. Marissa had two appointments to get clearance before her surgery in October. As I was walking down the hall, I saw one of my friends, her husband and sweet baby girl. Her baby is about seven months old and has a deletion of chromosome 1. She and Marissa have some medical commonalities, but they are very early on in this process of understanding what is happening to their daughter. There she was so precious connected to the oxygen and a pulse-ox machine. The look in their faces was one of defeat, lonely and helplessness. As I left the room and walked towards my bouncing Marissa, I was reminded of the days when she would have to be strolled in to UVA with the same equipment feeling defeated, lonely and helpless.
I clearly remember the day Marissa was born. Once word had spread that she had medical problems, what should have been a joyful time for us, quickly turned to mourning. No one brought us balloons or flowers to celebrate in the birth of our baby girl, in fact, those that came to see us, had no idea of what to expect. I remember a few of the faces but I don't remember any words of encouragement. I also remember when Marissa was medivac to UVA at three months old. The doctor before leaving Lynchburg said "I have grave concern for your daughter". I thought that by the time Steve and I reached UVA she would have left us and became and angel in heaven. I remember every time she gets sick, panicked because I wonder if this is the time He is going to take her. I remember in each hospitalization, sickness, new diagnosis or no diagnosis at all- just and unknown, that I was in control of this situation.
I say I remember, because that is once how I felt. I lived in a world where I asked God "why me" but God gave me the greatest gift last year. Through a Beth Moore Bible study, I learned that sometimes, God has to injure us to Bless us. Even today He gave me another gift. He showed me this is where you were and now go to where you are now. I committed Marissa's life to Him way to late, but now He is in control not me.
While I wanted to sit there with them today, hold them, and give them encouragement, I couldn't. I brought Marissa in to see the baby she prays for nightly. There is nothing that I can say to them to make this situation any better, but hopefully seeing her full of happiness and joy can be encouragement enough.
I ask each of you to not only pray for Marissa but pray for this very precious baby girl. God is a BIG GOD and He reminds of us this every day. Marissa is the only one who has this Chromosome Disorder. This precious baby is one of a few. God made them, He has a purpose for them, so big of a purpose that He only created a few. So when you go to ask yourself, "why Lord, why me?", remember that He is mightier and bigger then anything here on this earth.