That silent walk down the hallway, I knew we were entering uncharted territory. It was a meeting in a closed door conference room down the hall from the NICU that I can’t erase from my memory. The trauma is still lurking in the cells of my body almost three years later. I can only hope that it was the worst day of our lives, the most difficult conversation we will ever have to bear.
When a neurologist and a social worker close the door and ask you to have a seat, you get the sense that they do not have good news. The silence in between the sentences was deafening. I still get short of breath and an increased heart rate when I recall.
Then the neurologist says the name of your daughter’s terminal condition and he is a speaking an unfamiliar language. My brain could not hold onto the terminology as my world was being devastated. When you hear the words severe cognitive disability, problems with mobility, seizures that are difficult to manage, and a low life expectancy, each one hits you like a blast with intensifying force.
We were being suffocated. The walls were closing in. And all I could say was, “What is it called again?” If only I can learn the name, learn about the condition, and figure out how to overcome this diagnosis. But that was not a possibility in this case.
I had just delivered our sweet Lucy two weeks before and on that day, in the small, suffocating room my greatest fears were delivered to me to live.
Lissencephaly. It occurs in 1 in 100,000 births and 20% of those are caused by Miller Dieker Syndrome. Spell check does not recognize the word. MDS is also unrecognizable by spell check, most physicians, nurses, EMT’s and clinicians. And what felt like the entire world. How could I now be speaking this foreign language that not even the medical world seemed familiar with?
And as we continued on through the following days, forced to learn a new existence that we felt prisoner to because life decided this, not us, we learned that there was more. There were even more obstacles for little Lucy to overcome. How could there be even more ways that her body would struggle in the day to day?
We experienced a range of emotions as it began to sink in that we would be outliving our daughter. It is so very complicated grieving a loved one that is still alive, especially when it’s your child. And learning everything that we could about supporting Lucy with therapies, meeting with several types of specialists, and caring for her complex medical needs at home consumed us. Our entire reality had changed, seemingly overnight.
Having said all of that, I’d live every second of it again just to be with Lucy.
But as you can imagine, all of this felt incredibly isolating. Who else could I possibly talk to about all of this? What mom that I knew could answer my most feared questions? I had always had my tribe of girlfriends to rely on. But now I needed another tribe. Not one to replace my existing tribe, because trust me, they’ve carried me through all of this. But I did need another tribe now, a new tribe that understands what this is like because they were living it to.
I began to see that even though 1 in 100,000 felt like we were alone, we were not. I had avoided social media for years. As a teacher, I wanted to preserve my anonymity a bit. Then, two days before Lucy was born, I created my FB account. The real reason, Violet’s preschool had posted some pictures of the kids, and I wanted to see my little beauty in action in her new environment. Little did I know, that social media would allow me to find my new tribe.
I joined a lissencephaly FB group. It was extremely overwhelming at first. However, there I found a spark of hope. In one simple comment to a question I’d asked, I found a family with beautiful twin boys also with lissencephaly that shared a similar approach to their care.
I believe that every family has the right to choose how to parent. And my way is not the right way. My way is the right way for my family. Your way is the right way for your family. When my eyes were opened to the world of parenting a child with complex medical needs, I came to believe this beyond a shadow of doubt.
And the strength, determination, grit, tenderness, love, and grace that I started to see from families with little warriors, gave me the strength to do what I believed was right for both of my girls. I could move past the “why the hell is this happening to us?” I was able to become a scheduler, a nurse, a therapist, and still be a mom, soaking in every second, creating beautiful memories with my daughters together.
After our little peanut left this world, and the twins did too, their family created a lovely tribute to their boys. They created an opportunity for people to do 12 acts of kindness on their birthday, May 12th. I wanted to participate to send joy to the family on a day that would be very difficult. I wanted to take my then 4 year old on this kindness spreading adventure. I was inspired with how Liz and Chris were able to put a positive spin on a day that would be a painful reminder that their sweet boys were taken from this world way too soon.
I loved the experience of a burst of kindness so much, that I asked Liz if I could do the same thing on Lucy’s birthday. Of course, she said yes. With that, I set out to create a blog to spread the word about the kindness campaign on what should have been Lucy’s first birthday. Next, I created an IG account to share the acts of kindness.
I also started to write about my grief experience on this blog. As I began to share what I was learning from our tragedy, not only was it healing for me, but other moms with liss and MDS babies read and contacted me. They asked the same questions I wanted to ask someone when Lucy was still in my arms. And even though I didn’t always have the answers, we were there for each other. There was someone to reach out to, even if we were separated by miles of land and water. What brought us together was much stronger than our proximity to each other.
In some ways, I feel closer to these moms than the moms I can reach out and hug. This is the tribe that knows what’s it’s like to be asked, “How many children do you have?” and have to decide how you will answer that question on that particular day. These are the ladies that also became nurses and therapists for their babies without question. These are the moms that had to wonder what the final days of their child’s life would be like and then live them. These are the moms that grieved their living child and now are faced with a lifetime of longing.
To my tribe, as we approach Mothers Day, thank you. I celebrate you this Mother’s Day.
Liz, Priyanka, Kirsten, and Lori, I feel your longing to hold Luke and Liam, Lily, Maeve, and Eva as I long to hold my sweet Lucy. Thank you for sharing your little sweethearts and the ups and downs of your life and your grief journey with the world. I feel your pain everyday as we miss our sweet babes and daydream of what was to be. I also feel immense joy as you honor your children, each in your own special way.
For it is you, my tribe, that gets me through my dark days. You have eased my isolation and taught me so much about what being a warrior mom is. Though we may never share a hug or set our eyes on each other in person, it doesn’t matter. You are my tribe and we share a sisterhood like no other.
And to all moms, no matter what you are going through with your children find your tribe. Your tribe will hold you and lift you up when you need it most. Your tribe will allow you to grow, as you do the same for them we they need it too.
Always find your tribe.
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.