I think one of the most difficult things about finding out that your baby is medically sensitive is how isolating that feels. I know lots of moms. Some of my favorite people are moms. Love you mom! ;)
But I didn’t know any moms that were told that their baby might not exceed the developmental age of 3-5 months. I didn’t know any moms that had lost a child. I didn’t know any moms that had done their best to prepare older sister for being a big sister, only to have those dreams shattered. I didn’t know any moms that were meeting with several specialists instead of attending play dates. In hindsight maybe I did. I just was not aware of it.
I have never cared for the phrase “everything happens for a reason”. Pardon me, but I think that is a crock of shit and it is so overused that it really doesn’t mean anything to me.
But I do believe that some things happen the way that they are supposed to. And that is how I met Liz Reider. And my counselor. And the nurse at Violet’s new pediatrician’s office.
Liz, you were the first Mom that I connected with in the Liss FB group. I asked the group a question and you answered. You may not even remember it. But your response made me feel less alone in this new, terrifying world I had entered. And months later, when we connected again, Lucy and Luke were already gone from our arms, with Liam soon to follow. But there you were again, and the isolation eased a bit more. And thanks to you, Lucy’s birthday will be a day filled with kindness and joy.
And my counselor, you were the first mom I met that had lost a child. I’m not sure if you noticed my shoulders drop in relief when you told me that at the end of our first session together. But they did. I walked in your office tattered and tense and really sad. I walked out of your office relieved that someone else knows what this is like. Finally, someone that can imagine what this is like and can help me learn to navigate my grief journey from the heart, because you’re on one too.
And then there’s the nurse at Violet’s new doctor’s office. When you learned about Lucy, you shared some things with me about your own children. And how when you thought your youngest baby girl wasn’t going to live, you worried to yourself, “what will I say to people when they ask me how many children I have?”. You made me realize that I’m not the only person that has struggled with how to answer that question.
Not a day will go by that I don’t miss Lucy. But somehow, knowing that I am not completely alone makes it a bit more bearable. And that was supposed to happen.
Join us on July 10th, 2016 to celebrate and honor the short life of our sweet little peanut, Lucy. Lucy was born on July 10th, 2015 and we want to honor her by completing 10 random acts of kindness for others.
Your 10 acts can be as simple as holding the door for someone, buying someone a cup of coffee, leaving coins in a vending machine, or reaching out to someone you know would appreciate a little love and thoughtfulness!
Please share your 10 acts of kindness by posting them on Facebook or Instagram with the hashtag #LucysLessons.
Visit our event page or facebook #lucyslessons to get ideas and print acts of kindness cards to accompany your gestures and raise awareness about lissencephaly.
My name is Lou and I am a mom of two girls living outside of Chicago. I never would have imagined this, but our oldest daughter is at home and our youngest is not. She will be in our hearts forever. Lucy was an amazing soul and we continue to learn lessons from her today.