11 and 2


11 weeks old. Two weeks post surgery. I think I’ve cried no less than five times today. We are home, learning how to be a family of four. Permanently. Funny, I didn’t realize how much mindshare I gave to preparing for Abigail’s death until it was gone. I built everything on the temporary, planned for “when Abigail’s gone…” And now she’s not. Amazing amazing amazing! I still feel very shell shocked. Like I can’t tell if I just dreamed up the last two weeks, like I dreamed up the last 4 months. Did we really go to Boston, cut her head open, take this thing out, and now we are home like it was no big deal? Audrey’s back to stealing baby Abby’s socks and I’m back to juggling feeding, diapers and nap time (or lack thereof!), like any normal parent. I just can’t believe it. How amazing is it that the only residual effect of the surgery is the incision on her head? You would never even know if she didn’t have a strip of hair missing! We were warned about so many things – CSF issues, infection, weakness or paralysis, the possibility of future procedures. Thankfully, as of now, all seems to be well. Her biggest issue is gas. Just like any normal baby. Again, I can’t say it enough but wow, so so amazed. I’m so overwhelmed with thanks to our God. Still living in a haze of “is this really happening?” Some things will catch me totally off guard. Like last night Stephen and I were discussing the future, my work, finances, insurance, etc. and he casually says, “And when she’s 1…” My heart literally stopped and I couldn’t breathe. When she’s 1. When. She. Is. One. Because she IS going to be 1!! Maybe even 2, 3, 28, 53, and 72!! I started tearing up and couldn’t talk. Stephen looked at me, knowing exactly what I was thinking, and said gently, “yes honey, she’s going to be 1”. So hard to wrap my head around. We were told she would die before her first birthday. I didn’t think she’d ever have another birthday. That’s why I named her Noelle. To commemorate the one birthday she’d have. But now, God willing, she’ll have many. Wow. As I’ve said all along, she and God have their own thing going on.

When Abigail looks at you, she gets to your soul. It’s like she knew all along. Those eyes, that hint of a smile, she’s totally saying, “I told you so!” Every little cute normal baby thing made me cry today. One big, toothless baby grin, a sleepy sigh, open mouth baby kisses, her wide eyed curiosity, grabbing and holding tight to mommy’s finger, working so hard to get her fingers and thumb into her mouth, her big sister kissing her “boo boo”. In awe of today. In awe of the future. There are just no words. Today we celebrate – 11 weeks of life, two weeks tumor free, and many more adventures to come as a family of four!


4 thoughts on “11 and 2

  1. Erika & Family, 

    What a magnificent story. Bless you a million times for loving Abigail and giving her a chance at life. I have done volunteer work with children like Abigail and found them among the gentlest, most warm-hearted people I’ve ever known. I felt they were doing more for me than I was doing for them. 

    I realize this can be a day by day process, but Abigail is yet one more example of the unpredictable, life-affirming nature of these children.  Abigail is a beautiful, beautiful little girl. A blessing. She would light up anyone’s life. 

    I wish you all the best.

    Steven Douglas Carr ==============


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