Worth the Wait

When Evie was first diagnosed with CHARGE syndrome and we were told she was more than likely deaf and blind, one of the things I wondered was whether or not I would ever hear her call me Mommy. Maybe that’s silly, but I grieved all sorts of little things that definitely didn’t feel silly at the time. When she was a trached a few days later and could no longer vocalize, I struggled with holding on to hope.  Then when we brought her home after another month in the NICU, she didn’t make eye contact or want to be held and I wasn’t sure we would even have a relationship recognizable as mother and daughter. She only wanted to be back in her crib alone for over 20 hours each day and we spent our days causing her distress with suctioning her trach and nose every few minutes. Another two months at home and she started interacting more and, after we resolved some issues causing her pain, she wanted to be held more and more.  In fact, she started expecting to be snuggled for both of her naps and I was more than happy to oblige. I’m STILL more than happy to oblige. She started making eye contact and letting her personality shine through and we finally felt like parents to Evie instead of just her nurses. It was clear that she could see and hear, at least to some extent, and I started to let hope grow that I would still get that ‘Mommy’ moment.

Evie starts come alive!
Evie starts to come alive!

But of course, Evie is Evie and she likes to throw curveballs. When we learned that her trachea was full of scar tissue that would prevent her using a speaking valve, we were understandably upset, not so much for us (we had grown to love the way she blew raspberries to babble and her laugh that was audible to us), but we knew that this would make things harder for our little girl. We’d been working on sign language for a while at that point, but she still had not done any signs. I was less concerned about getting the mommy moment than I was that she would communicate at all.

About a month later, Evie did her first sign. Playing with her baby doll, she signed ‘baby’ (like you’re rocking a baby) over and over and her language has grown steadily since then. My dreams of hearing her vocalize ‘mommy’ are on hold for now, but the hope of her saying it in her own language grew and grew.

Well it finally happened! After MONTHS of signing ‘Daddy’ (Aleyna said ‘Daddy’ first, too. Why do kids do that? It’s just cruel!), last night Evie signed ‘Mommy’ for me! She has signed Mommy when watching her Baby Signing Time videos a few times and both my husband and Evie’s nurse have seen her do it once or twice, but she would never sign it for me! But last night! Last night she signed ‘Mommy’ to Ty to ask for me and then when they found me, she did it again! Cue girlish giggle. 🙂 It’s been quite an up and down kind of journey to get to this moment, but oh man, was it worth the wait!

I wanted to share a picture of Evie and me, but realized I didn’t have ANY recent ones!  After a quick photo shoot in which Evie wanted to watch Baby Signing Time and make silly faces, we got some keepers, though!


And because this post seems relevant for EVERY milestone Evie hits, I’ll share it again: We’re More Thankful Than You Are. I don’t see anytime in the near or distant future where this will get ho-hum and routine. I’m still amazed and giddy every time she signs ‘baby’ and she’s been doing that for six months!

Praising God for the little-things-that-aren’t-so-little that make this journey so incredible!


4 thoughts on “Worth the Wait

  1. Love that sweet little one! What a blessing! We are so blessed to have these sweet little ones.
    I also wanted to comment – Crailey had terrible UTI issues her first year and she was the same way- slept a lot and preferred her own bed. Now that that is resolved, can’t get her out of my bed :), which while its frustrating occasionally – I too, am SO thankful.

  2. I’m so thankful I found your blog (it was via a share of one of your recent posts on Facebook). My daughter’s challenges are very different but we share so many similar emotions. I loved these photos! She is so beautiful. And I am so, so glad that you’ve had the joy of seeing your Evie sign your name. 😀

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