There is nothing more important than family. And thank God we have a good one because the last few days have been very hard and challenging. I am trying to find the positive but it keeps getting lost on me as I see my little ladybug in constant pain. What is pain? What is discomfort? I have a renewed appreciation for those words. I am devestated by Cecily's pain and I want to take it all away and give her a million kisses and hugs to make her feel better. But I am helpless. I can't help her. I am advocating for her but I can't take her pain away.
Today I was talking to myself (an all to frequent habit) when Noah heard me... He said, "Mama - you lost your marbles? Where did they go? Is it because I have too many balls?" I smiled. "No honey. I just lost them and I don't think they are coming back!" He looked at me with his big blue eyes and said, "Don't worry Mom - I'll find them for you!" If only he could. If only he could pick up the marbles that I lost and replace them in my very tiny head. I am pretty sure that there may be one or two rolling around but they are tired and confused. They are full of self-doubt and fear. We are waiting by the phone as I type for a call from Children's. We are going to the hospital for another procedure tomorrow. We are hoping that this may make a difference for Cecily. She deserves better. I must admit I had a small, party for one, pity party today. I don't usually cry but Cecily's pain reached an all-time high and I couldn't hold it back. Noah saw me and this made me feel horrible. I don't want him to worry or to be consoling me. I am the Mommy! He asked me why I was crying and I told him that I loved him and I gave him a big hug. He asked again and I just replied quickly that I was sad that I couldn't make Cecily feel better. He smiled. He grabbed his little step stool (a wonderful puchase from Target) and said he knew how to do it! Sure enough he climbed up onto Cecily's table and grabbed her syringe and showed me how to vent her... this typically provides Cecily some comfort from her pain. I smiled. he is three! I smiled. I realized how lucky I am. Cecily is lucky. And she knows it. When she sees Noah her pain seems to subside, if only for a minute. What a blessing!
I know tonight when I am awake in the hospital that I will once again feel so very grateful. I know there will be Moms and Dads just like me - pacing the halls or praying for answers. I know that we will get through this because we have a great family. Family is everything. Tomorrow our family will make a fresh start - and we hope that this is the first step towards pain free days for Cecily. Onwards and upwards!