We were informed of Sweet Pea's diagnosis about an hour after she was born and I had only been able to hold her for a few minutes before she was surrounded by doctors and nurses and eventually taken from our labor room to the NICU. My husband went with her and when he returned with a doctor and shared the news of her diagnosis, my world crashed down around me. What was supposed to be the happiest day of my life just became one of the worst. The fear that I felt was unbelievable. I was completely ignorant of what Down syndrome was and what it meant for Sweet Pea. All I knew was that this wasn't the baby we had always dreamed of and I felt so sorry that Sweet Pea was going to have to live with the challenges that I was sure existed because of DS. The next hours, days, weeks and months were filled with learning everything I could about DS and trying to find the love that I knew Sweet Pea deserved. Having her in the NICU from almost the moment she was born and not being able to hold her very much or do any of the things that a brand new mother would expect to do was very hard. I believe that separation only made the bonding process harder for me. I would stare at Sweet Pea and examine her features, but wonder what was because of DS and what was just her. I refused to look at baby photos of Daddy or myself and see what similarities existed because this wasn't the way it was supposed to be. The guilt that you feel when you feel like this about your own daughter is unmeasurable. To want to be head over heels in love with your little baby, but not be is pure torture! I cried more in that first month than I probably had in my entire life up to that point! I tried really hard to enjoy her for who she was and not for the diagnosis and the fear that the diagnosis brought to me, but I failed. I slowly found small ways to enjoy her, but I always knew that it wasn't nearly as much as I should have and wished that I could have. I would smell her sweet skin, stroke her silky hair, have her grasp my fingers, but I couldn't stare for hours (or even minutes) without tears streaming down my face.
It took months for the pain to diminish and for my love for Sweet Pea to replace it. I started this blog on January 20, 2010 and I had made huge progress, but still had a long way to go. It was just a couple of weeks ago as I was preparing to welcome our new little girl into this world that I really started thinking again about Sweet Pea and how my love for her has grown. I feel as if I have finally accepted her for being who she is and loving her for it. There are definitely still times that I wish she didn't have DS, but then I have no idea who she would be without DS. Would she have her infectious smile and laugh? Would she have this unbelievable power to draw people to her? Would she be able to melt my heart with just one kiss or hug? Who knows! But I do know that she is that person today and that is the girl that I love...Down syndrome or not!
I've been trying to write this post for a few days and I never could find the words to even get started on it. Today I learned that we lost one of our own, Sweet Lois, who died peacefully at home at age 3 after a long and hard battle with Leukemia. That made me stop everything and start writing. There is a lot of chaos that comes with the diagnosis for a new parent, but there is so much love and joy that our kids bring us that I wish I could have seen 22 months ago.
Life is too short to waste a second of it and I'm making sure not to this time around. I'm cuddling, hugging, kissing, smelling, caressing and staring at this new little girl 24 hours a day 7 days a week. I'm reveling in her little squeaks and adorable little expressions. Allowing myself to be amazed at how tiny she is and how completely remarkable she is. This little girl had my heart from the moment she was born and this is the way it was supposed to be. I'm cherishing this one twice as much trying to make up for lost time with Sweet Pea even though I know that isn't possible. I know that this is the love that I was supposed to have felt from day one with Sweet Pea and although I can't make it up to her, I can at least heal some of my own pain with it. I don't expect that I will ever have this chance again and so I'm going to savor every last second of it. This blog and many other things in my life will take a backseat for a while, but I will be back as I want to continue to chronicle the life of my Sweet Pea and add to it with the joy that her little sister will bring.
One more thing...I think I will be calling our newest little edition Angel (or Angie) because that is a nickname that my dear Papa Bear came up with and it seems to fit perfectly. She is my little angel and is helping me in so many ways already and I know she will help her sister in years to come as well.