When our oldest daughter Violet was born, that’s when we found out she was a girl. What a lovely surprise! I was secretly hoping for a girl. Mostly because that’s what I know. With our second, we decided to find out early. And when we found out we were having another little girl, we were delighted!
When the walls came crashing down, all we could think about was Violet. All of our dreams of Violet and Lucy chasing each other in the back yard, stealing each other’s clothes, telling each other secrets, shattered.
And it’s not just the sister stuff from childhood that I worried Violet would miss out on. But the adult relationship that sisters share.
Things like exploring the world and yourself through travel. Sharing big accomplishments like graduations, forging careers as women, finding love, getting married, having children. Then of course, there are the hardships in life. My sister and I have been fortunate enough to share those things with each other and support one other.
Violet doesn’t know that all of those things could have been for her and Lucy. She will know what we tell her and show her about her sister.
She will know she was an amazing big sister. That on school days she would run in the house and go straight to Lucy and tell her all about her day. That when Lucy needed a clean diaper, V was right there, ready to help. That she used to sing to her in the cutest little voice “Lucy Lucy Lou”. And that Lucy loved all of this attention, love, and tenderness from her big sis.
It’s heartbreaking. But I have found a silver lining. And that extremely bright silver lining is my sister friends. My ride or die bitches, if you will.
I have a few groups of girlfriends, one dating back to grade school-high school that are so close, they are like sisters. I didn’t think I would find friends like these in college and adulthood, but I have. Friends that I met when I moved to the city, that were also creating their identities as teachers. I quickly learned that they were just as fun, trustworthy, and determined as the girlfriends I had from back home. And I am so grateful for all of these women!
These are women that can be trusted. And know how to laugh. And have respect, integrity, and grit. And know so much about me that I can’t de-friend them.
Even back in high school, there was no drama. I think that ‘s why we all got on so well. None of us really cared for drama. We were too busy setting our goals, doing what we had to do, and having a hell of a lot of fun along the way.
As the years have gone by we have kept in touch. Some of us might not see each other or speak for months, but that doesn’t matter. We simply pick up where we left off, with ease.
And so one day, this hit me. While Violet and Lucy won’t get to grow up together as sisters, I certainly hope that Violet learns to cultivate friendships that still allow her to love like they are sisters.
And now I have Lucy to thank for bringing my sister and I closer together. Not just in terms of our relationship, but also geographically. When Lucy was sick, our condo sold, and given the circumstances and a little twist of fate, we moved down the street from my sister.
My sis has always been by my side, especially for the last year and half. And now that I live down the street from her, we can be there for each other every day.
Thank you Lucy.
With my utmost gratitude, thank you to everyone that participated in 10 Acts of Kindness for Lucy on July 10th. That includes all of you that I know about, and those that I don’t! I love how everyone took the time to choose who they wanted to reach out to and exactly what that kindness would look like. Both planned and spontaneous! There were many tears of joy shed in the past week. Thank you again from the bottom of my heart!
And speaking of gratitude, I have never been more grateful for the family and friends that we have in our lives.
I’ve been grateful for my family and friends for some time now. I would say always, but I’m not entirely sure that was true during short and mostly harmless rebellious stints in jr. high or high school. So besides that, I’ve always valued the love, support, and work ethic of my parents and their parents. I’ve known for years that I have the best friends you can have. And my in-laws are amazing too! (Very lucky, I know!!)
However, I’m not sure that I realized the depth of that gratitude until this past year. And the person that I am now strives to acknowledge my gratitude.
I’ll be honest, I didn’t always. Especially with those closest to me, like my Mom. Or my husband. Or sometimes even closest friends. It’s not that I didn’t feel thankful for them and the things that they did for me. But I didn’t speak my appreciation for them nearly as often as I felt it.
When you go through something like we have been through this past year, you can’t stand alone. It is not possible to do everything all by yourself. And then the gratitude gets deeper and deeper.
We have family and friends that are willing to drop everything to come and help. We have family that moved, yes moved, to support us and the care of our daughters. We have family that insisted on giving to us generously so that we could focus on Lucy’s health and Violet’s well being. We have friends that helped us feel typical, by visiting the hospital and house to see our newborn. We have neighbors that made meals and volunteered to watch Violet. We have folks that reached out to say they were thinking about us and asked how we were doing and how they could help. We have loved ones that did exactly what we needed, without needing to ask what that was. Again, thank you all!
And the more I think about it, the more I realize that it wasn’t just the gratitude that I was keeping to myself at times. Lots of other things too. Like what to say when someone I care for is struggling, or doing really well, or when there is something bothering me. I think one of the reasons for this was worrying about what the right thing to say to was.
All of the kind acts that happened in the past week and that continue in memory of Lucy have me thinking about how powerful that is. All of that kindness rippling through our lives, at a time when we need it the most.
What impact then would speaking from heart have? You can‘t make someone feel grateful, or empathetic, or feel any kind of way for that matter. But I do believe you can encourage gratitude, kindness, empathy, acceptance or any other positive quality, by speaking from the heart.
Even when we need to express thoughts or feelings that might not be well received, speaking from the heart acknowledges and affirms those feelings. Which sets them free.
And now I know that when you speak from the heart, it’s always right.
I’ll never forget the day we got Lucy’s diagnosis. We were in the NICU, preparing to take Lucy home the next day. A neurologist showed up at our curtain in the NICU and asked us to join him in the conference room. With our attending physician and a social worker accompanying him, we knew we were not going to hear good news. However, we had no idea how serious it could be.
After hearing the words: difficulty with feeding and mobility, seizures that are difficult to manage, and a short life expectancy, all the walls caved in. Words were being said, but meaning was difficult to extract. My heart ripped in two, my stomach dropped, I felt light headed and nauseous. I asked the neurologist, “What is it called again?” “Lissencephaly.”
A short time later we were asked if we wanted to meet with a doctor from the palliative care team. Another unfamiliar term…..We were told that families with medically sensitive children almost always share that they wish they would have gotten the support from the palliative care team from the beginning. “Ok, sure…..”
The doctor that we met with could not have been more compassionate. She reassured us that typical siblings love and accept their atypical siblings just the same. That kids with this condition are able to communicate in other ways. Without knowing exactly the kind of support we would be receiving, but knowing that we were going to need help, we set up an appointment to meet with our care team at home in two days.
The palliative care physician arranged for JourneyCare to contact us for the home visit. JourneyCare and the Palliative Care Team at Lurie Children’s Hospital of Chicago saved us. I honestly don’t know where we would be right now without their care for Lucy and support of us in the difficult decisions we would be faced with.
Starting right away, we had an amazing nurse coming to the house once a week. I cannot put into words how helpful and reassuring this was. It’s pretty common to be watching your newborn at home like a hawk. Even more so when you are waiting for seizures to start.
Once a week our nurse came to see Lucy. She was compassionate and caring. And treated Lucy just like any other newborn, instead of just her patient. Most of our focus was on her weight. Lucy was born at 4 lbs 5 oz, had an incomplete soft palate, acid reflux, and failure to thrive. So feeding and weight gain were always a bit of a struggle.
Our nurse always took time to ask me how I was doing. And she listened in a way that she could always offer some sort of help. I was able to ask her questions all along the way about what was happening and what was to come. And she was honest with me. And compassionate. And empathetic. And consistent. And responsive.
And what about our oldest daughter? I was terrified of her seeing Lucy have seizures. I was worried about being able to give her what she needs, while caring for a medically sensitive baby. JourneyCare provided a child life specialist that met with V one on one, and she loved that attention. The child life specialist helped talk with V about what was going on with her little sister through play.
Besides worrying about Lucy’s health, and V’s well being, I was worried about how we would get by with only one income now. How could I leave her and go back to work? Who would care for her if I did? JourneyCare provided a social worker that made sure I was doing okay and tried to help me find sources of nursing and financial support. Unfortunately, living in a state with no current budget and income restrictions meant zero financial support for us.
I’ve thought a lot about how courageous you have to be to work in the palliative and hospice care field. It takes a special person to care for the sick that aren’t going to get better, especially the babies. Ultimately, you know what each family is going through and how things will end. And it’s not pretty. It’s downright the most difficult time in a family’s life. And yet they choose to put themselves there. Palliative and hospice care folks do the work of angels, living angels, that is. And I am forever grateful to all of them.
Our first acts of kindness on May 12 #forlandl were to JourneyCare. And the same will be true on Lucy’s birthday on July 10. #lucyslessons
Here’s how you can support JourneyCare as one of your acts of kindness, if you choose!
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.