So back in January I really didn’t know what to do with myself.
V was in school three days a week and Lucy was gone from my arms. The only time I had spent away from sweet Lucy was a few hours here and there when I left the house (not often) and overnight when she was in the NICU for the two weeks just after she was born.
And it was January in Illinois, yuk. We had just moved out of the city so I knew exactly eight people, my sister’s family and their neighbors across the street. And I was in no condition to work.
When I think back to that time, the memories are very hazy and some stuff I just don’t remember.
But I knew I had to do something with myself. As ridiculous as it sounds to me now given the heartache we were experiencing, I decided it was the right time of the year for me to set some goals. So I started a bullet journal and did just that.
I ran across my “Goals for 2016” page in my bullet journal the other day. And I have managed to maintain a few of them. I make it to the gym regularly, cook more, and found a new job.
My other goals for 2016….well not so much. I have started several books, but I’ll admit it, didn’t even come close to finishing any of them.
Another thing I wanted to do regularly was meditate. At first, I tried to make time to meditate for ten minutes , four or five days a week. That quickly became two or three days a week and then, well you know how that goes…….
I haven’t managed to make meditation a habit yet. But the bit that I did do was calming and I learned a few things that are helping me navigate my grief journey.
I started reading a bit about meditation and its power to heal pain, both physical and emotional. The potential to heal physical pain absolutely amazes me. People that have struggled with back pain, for example, for years finally experience relief after regular meditation practice. Besides the relief from pain, imagine how empowering that would feel? To be able to conquer your own pain.
I also looked into some guided meditation videos and stumbled upon Susan Piver. Susan is a writer and a meditation coach. She started the Open Heart Project, which is a virtual meditation center.
One of her videos ,“Meditation, Depression, and Sadness” caught my eye. The topic seemed appropriate, so I listened.
Susan explains the difference between depression and sadness. Depression feels like your trapped and the world is unworkable. It’s like the world is dead and you feel nothing. Sadness however is soft, tender, and feels workable. Everything seems full of meaning and touches you.
And the best response to sadness, or any feeling you have really, is to be open to what you are feeling. Relax and let yourself feel what you feel. Lean into your feelings. Instead of pushing sadness away, hold onto it, watch it arise, and feel that feeling.
Living with a four year old offers many opportunities to practice leaning into feelings. Such strong feelings… So we’ve had lots of opportunities to practice.
I’ve always felt like Violet was young enough to not fully understand what happened to her sister, and just go along with what we told her. But I love that she was old enough to remember her. And it is becoming clearer, as she gets more articulate about her feelings that she does. She remembers her sister. She loves her sister.
In the past few weeks, Violet tells me that she misses Lucy. And it is a gift when she says that. Because all I want is to keep her memory alive, especially to Violet. Even though she misses her and doesn’t fully understand what happened to Lucy, she remembers her.
And so I lean into that painful happiness. And Violet does too.
I’ve been told and have read that the first year after you lose a loved one is the hardest. And I am beginning to feel how time does heal a bit of the pain. We’ve made it through what would have been Lucy’s first birthday. And in my head, I’ve mostly stopped counting the months, like you do with your baby.
There are lots of memories popping up though. Last fall, when Lucy was still with us, her sister picked out a pumpkin for her. They dressed together as “Thing 1” and “Thing 2” for Halloween. One day, right around the time Lucy started to smile, she and I were quietly enjoying some cuddle time when I got a call from V’s school and we ended up at the ER for stitches on her chin. And the two girls spent the weekend cuddling on the couch while V got to eat lots of ice cream.
While I do feel sadness and pain sometimes, most of these memories make me extremely happy. And what I am learning to do is lean into them and the feelings that arise with them. As I lean into the warm moments, I’m noticing that we cry big tears and share big smiles and sometimes even deep belly laughs. And those are gifts too.
Now I’m wondering what other gifts meditation holds for me. I guess it’s time to find out.
Living with a four year old can be a wild ride. One minute everything is fine, and the next it is as if the world is ending.
Last week, I was telling V that I was going to make spaghetti for dinner. Meal times are always a struggle with a picky eater and little one that loves to be in control, so the day before I let it be known that spaghetti and meatballs was for dinner tomorrow.
Protest ensued. V made it clear that she didn’t want sketti and meatballs, she wanted macaroni and cheese (again), as that is always the first preference. I tried the strategy “I understand it’s frustrating that I’m making spaghetti and you want macaroni again”. Protest intensified.
At this point, I’m reminding myself in my head to stay calm. Breathe, count to 5. While my little internal calming session is going on, V takes it upon herself to reach for the sketti noodles to put them back into the pantry. What she doesn’t know is that the end of the box is open.
You can imagine what’s next………yep, sketti noodles flying everywhere!! At this point the deep breathing and counting is blocked by the color red.
I pick her up and head to her room. It’s time for her to calm down. It’s time for me to calm down. What we are doing now isn’t working. And for me, that was the sketti noodle that broke this camel’s back.
My mom was fortunate enough (sarcasm) to witness sketti-gate. She says “You’re going to be picking up sketti noodles forever”. Yep. She’s right. At that point she goes upstairs to be with highly upset 4 year old.
I scoop up some of the noodles, leaving some for V to clean up. I calm down, she calms down and then she helps clean up the rest of the noodles. Suddenly sketti and meatballs is the best thing ever for dinner. Well, except mac & cheese but I don’t dare remind her of that.
About half an hour later, over a glass of wine, my Mom and I have a real good laugh over the flying spaghetti noodles. I decide that every piece of spaghetti noodle that I find in the coming days will be my reminder to find the humor in these intense moments while they are happening.
And then I think back to how laughter was what kept us going last year. With Lucy’s diagnosis we had so many unknowns. Would she need a feeding tube? Surgery for her incomplete palate? When will seizures start? Will seizure medication wipe out development that she worked so hard to achieve in therapy? We had 6 specialists to follow up with. We had very little uninterrupted sleep.
Stress does things to you that you have very little control over. And time was so precious to us. We wanted to make positive memories as a family. We wanted to experience the joy of having another baby and a little sister for V. Stress got in the way sometimes. And there were some very dark days on our journey.
But, there were also some really great moments that I will never forget. In fact, I will hold those moments in my heart and soul forever. And I never would have been able to have those moments without keeping my sense of humor.
Our condo was a duplex down, kitchen/living room/den on the main floor, bedrooms and both bathrooms downstairs. Bathrooms downstairs made potty training even more of a nightmare. We relied a lot on a free standing potty on the main floor.
One morning after getting V out the door with her Dad for school, I sat down holding Lucy and sighed. I looked down at the floor, and what did I see, a turd. Yep, turd on the living room floor. And in that moment, I laughed hysterically and said to my Mom, “Wow, you know it’s going to be a great day when you look down see a turd on the living room floor”.
I was tired, scared, uncertain, already grieving, and in that moment, all I needed was a good laugh. I learned that choosing to see the humor in things is something that I do have control over.
Grieving with PTSD and trying to function in this world again is a challenge. What keeps me going? One thing is laughter. It always has.
I inherited sarcasm from both sides of the family. I’m a people person and every once in awhile I meet someone that I don’t click with. It always takes me a bit to figure out why, but then it hits me, no sense of humor. And I think, what am I going to do with that? Then I make it my mission to get a good laugh out of them.
I’m lucky to have a 4 year old that provides multiple opportunities a day to laugh!! And I think she has my sense of humor, HA!
So if you find yourself stressed, annoyed, angry, remember to slow down, stop taking yourself so seriously, and laugh! It truly is the best medicine.
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.