When we found out about Quinn's diagnosis I was afraid to have any hope at all that she would live for any extended amount of time. As I read more and met more and more people that had Trisomy children that were living for 3, 9, 11+ years I started to have a little hope but I was afraid. The odds were certainly not in our favor since "Twenty to 30 percent of babies born with trisomy 18 or 13 die in the first month of life, and 90 percent die by age 1." I always knew that Quinn's life would most likely be short and that I had to do everything I could to make my time with her enough. I didn't pray to God and ask for him to heal her, I knew that was a prayer that wouldn' be answered. I prayed and asked that He help me make what time I was blessed with be enough. As hard as I tried, it would never have been enough. I am thankful and know that we were so very blessed to get to meet Quinn and hold her here in this world for the time that we did, but it still isn't enough. I want more time with her and I always will.
I have been reading these blogs of parents who lost their children at 9 and 12 years and am jealous. They have years worth of memories to hold onto and I only have 4 short days worth. They had time to take hundreds, maybe thousands of pictures, and I only have 78 pictures of my Bean. And, most of those aren't even really OF her she is just being held in them. I want more pictures. I want more time to hold her and kiss her sweet cheeks. I want to hear her cry when she is mad and boy did she let you know when she was mad! I want to hear the little squeaks again! I want so much more and yet I know that I can never have it back. No matter how hard it is for me to come to terms with it, she isn't coming back. I am not going to wake up and this all be a terrible, horrible dream. This is real. This is my life now. I can never go back to being the carefree happy person that I once was because I will always and forever have hole in my heart. Sure I will, and do, have happy times and can smile and laugh, but I will never be the same person that I was. This is the new me and I haven't figured out yet how to live with her. I don't want to be the mother of a dead baby. This isn't a "club" that I wanted to join. I have heard it said that this is the "club" with the highest membership dues. Not something that I wanted for myself or Steve.
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I am very sorry for your sadness and frustration. Your feelings are normal. Most moms in your place felt that way at some point. Every baby is different with a unique journey for their life. It is all relative: Imagine how those whose little ones passed away just before birth must wish they had just one precious minute. It is such a difficult road. My experience is that with time, these frustrations will fade and be replaced by an appreciation for the enrichment Quinn brought to your life. How long she stayed won't be so significant. From one trisomy mom to another, sending you a big hug and prayers for continued healing. I wish so much I could take your pain away.
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