After lunch we went back to the NICU but didn�t go over to Sydney�s bed. That was hard. It was too close to 3:00 and there wasn�t time before the meeting. I blew her kisses instead. Brian and I had asked our pastor and wife to be with us during the meeting. We were led to a small conference room. Besides Dr. K, there was another doctor and five or six other people. I know they were introduced but it just did not register in my mind. Dr. K proceeded to explain Sydney�s condition to us. He did not have her x-rays with her and I was grateful for that. I don�t think I could have handled seeing them, seeing her broken bones. The meeting lasted about thirty minutes with various people talking. I cannot remember any details at all. I was focusing on keeping my composure, fighting back the tears. All I remember is the doctor saying Sydney�s prognosis was very grim. He could not tell us how long she might live. If kept on the ventilator, possibly weeks or even months. However, if removed, the time would be very short. There is no cure for OI. And Sydney�s case was extreme. He apologized but said they had done everything they could for her. There was nothing left to do. Our baby girl was going to die. We would not get to take her home, not that day, not ever.
I was able to hold myself together until everyone had left the room except Brian, the pastor, and his wife. As soon as the door closed, the tears began flowing. I bawled like I had never bawled before. I gave no thought to the huge tears I was crying or the loud sobs. I held nothing back. A minute or two later, one of the doctors returned with a box of tissues and then quietly left again. Brian and I sat there, holding one another, tears soaking our shirts. Our pastor and his wife cried along with us, praying softly. I don�t remember if I actually spoke outloud or not. Why was this happening? We had prayed so hard and believed God would perform a miracle. Why didn�t He? Why would Sydney never be allowed to sleep in her room? To play with her toys? To wear her new clothes? To chase after her big sister? To tell her mommy and daddy she loved them? Why was she being denied these things? Why were we? What had we done to deserve this heartbreak? I cried until I couldn�t catch my breath. I�m sure I had never cried so hard in my life. After I finally calmed down, we asked the pastor to lead us in prayer. I do not remember a single word of what he said, but I do remember that his prayer brought me such peace. Looking back, from the very moment I saw the positive pregnancy test, I knew something was wrong. I tried to deny it and tell myself that I was just being paranoid, but I had been filled with a vague sense of dread from the very beginning. However, I refused to admit because if I admitted it, then it would be true. It took the meeting with the doctors for me to finally face the truth. We would not have the pleasure of raising Sydney as our daughter. However, she was with us at that time and I needed to make the most of it and cherish each and every moment to the fullest extent possible. I would have to cram a lifetime of love into a few short days.
We left the conference room and looked for our family. Our faces were blotchy and red but we just couldn�t bring ourselves to say the words. They knew anyway. We went back to the NICU to see our precious little girl. I was determined, as I had been from the beginning, to be happy around Sydney. I did not want her memories of her mommy to be filled with sadness. I was determined to do everything in my power to make each of her memories nothing but happiness. I did shed a few tears when I was with her, but I never did break down. I did not want to spend the little bit of time I had with her being all depressed and sad. It was hard for our family to understand. How could we be so happy"? Were we in denial? No, we just wanted to enjoy our time with our daughter.
Kelsea was absolutely worn out, as were the rest of us, so we returned to the hotel to nap. Kelsea laid between Brian and me, sucking her arm and stroking Daddy�s hair. That was the first time she had ever slept with us. After we awoke, it was time to get ready for dinner. I went into the bathroom to get ready and when I came out Brian was crying. I asked him what was wrong and he said Sydney had talked to him. She told him she was going to be okay. That the angels were going to take care of her. It was not what we wanted but we knew she was truly going to be okay and much happier.
While at the restaurant it was so hard for me to understand how life could go on. How dare we be eating out when Sydney was fighting for her life! I ate a few bites and spent the rest of the meal staring straight ahead or responding to questions the others asked. I could not look around the restaurant. I could not bear to see the other families, the other babies, so perfect, when my own family, my own life was nothing but devastation. Why couldn�t it be them? Why did it have to be me? My baby? On the way back to the hospital we listened to one of Kelsea�s favorite tapes and she sang along as usual. Tears came to my eyes as I realized I would never have the opportunity to hear Sydney sing.
Sydney was sleeping when we arrived so I tried to be quiet. I gently stroked her legs and fingers. Kelsea had gone back to the hotel to go to bed so we didn�t have to worry about her being too noisy. We were able to completely focus on Sydney. We didn�t stay very long, maybe about an hour, and decided we better go back and get some rest. As we were leaving I discovered that the sides of Sydney�s bed could be lowered. I could kiss her! Before, since I couldn�t bend over, I had just been kissing my hand and placing it on her forehead. Now I could actually kiss her! I regret that I had not made the discovery sooner because I could have given her a million more kisses. |
