The days are such a blur. It’s crazy to think of what my body has just endured, not only in the last two months since the cancer was discovered, but in all the months leading to its diagnosis when cancer was growing in my body, but I was not yet aware.
Yesterday a friend sent a link to some interviews that I did in January and it confirmed what I thought to be true, cancer had been in my body for quite some time. I could see my lymph node protruding from my neck as I moved my head in the video. I can’t tell you exactly when this cancer arrived, but I can tell you when I noticed something was “off”.
A year ago I had just published my first book and was excitedly working on the next. As publication neared, I noticed my energy waning. Now for the average energetic person that may seem to make sense. I had two small boys, a full-time teaching job, balancing my passion of advocacy, as well as maintaining my relationship with my husband, family, and friends. It makes sense that I would feel tired.
But, that didn’t make sense for me. I don't get tired. EVER.
So, I did what I don’t often do-I listened to my body and rested. I made a promise to myself and to my husband that as soon as the book published in November, I would take a break from my other projects. I would be satisfied to go to work and come home, that that would be enough for my soul.
And it was. Enough.
But, I was still SO TIRED.
I ate healthy meals. I went to bed early with the boys. I didn’t do extra stuff.
I am a school teacher. My immune system is amazing. I rarely get sick. But this year I did- a few times. Which is why when my lymph node swelled, I noticed but didn’t take notice. That’s what lymph nodes do, they swell when they’re doing their job. I had had a sore throat for some time, but along with that swollen node, I assumed I was successfully fighting a cold or allergies or both.
Little did I know…
Here’s the thing, I can sit and analyze the how, the when, the why, but it won’t change anything other than perhaps answer some curiosity. The important thing is that I went to the doctor. Eventually when I realized this wasn’t a run of the mill cold, I went to the doctor and demanded a biopsy. I had already watched that lymph node long enough, I was unwilling to watch it a day longer. And then the roller coaster began leading us to where I am now.
Sitting on my bed, day 12 from my first surgery and day 5 from my second surgery. One less tonsil and 50 less lymph nodes with an enormous scar and a pretty big empty space in my throat. And I am in pain. It’s managed pain, but pain nonetheless. My jaw is sore from being manipulated, my teeth hurt from grinding through stress, my tongue is numb in some places and raw in others from being clamped during surgery, my shoulder is sore from carrying my arm through nerve damage, my incision feels like my skin is being pulled, my throat hurts each time I swallow, and my skull hurts from all the pain radiating into one central spot. Not to mention that eating and talking are my biggest obstacles right now.
But, I am alive.
This is temporary.
And, I believe it will be worth it.
I don’t feel sorry for myself and I don’t want you to either. But in full transparency (as I try to live my life) this is the real deal. This is hard and it hurts.
I am still strong.
I am still a warrior.
I am still ME.
But, I encourage you to always listen to your body. Go to the doctor and don’t delay. Demand that you get seen and don’t accept being placated. I saw 3 doctors before this cancer was discovered, each doctor reassuring me that it was probably “nothing”. I knew better and you do too. You know your body and you are in charge of you. Pay attention and make others pay attention, too.
I don’t even allow myself to think about what would have happened if those cells were given a little more time to play in my lymph nodes, those little messengers being sent all over my body.
So listen to yourself.
Know that it’s not normal to feel “off”.
And when you do, find the reason why.
Chances are you only need a little more exercise, nourishing food, and fresh air. But, in the case it’s something more, I love you too much to wait. Get healthy. I plan on being here way too long, I want you here too. (I am not really sure who needs to hear that today, but if it’s speaking to you- then it must be you.)
I’m heading back to sleep now. Or to watch TV. Or to listen your playlist. That’s really helping me stay present. I love you friends. SO MUCH.
This is really hard, but easier with you beside me. Please keep showing up. We are still at the beginning of this road.
To follow my medical progress and the needs of my family: https://www.giveinkind.com/inkinds/324/lands-family-love
Five years ago I sat bedside my daughter and two of our closest friends, the family that we were supposed to raise our little girl with, the mama who in her belly was growing my daughter's best girlfriend, the girl who I now love watching grow older while my daughter does not.
It was an amazing visit to introduce them to our sweet girl, to meet her, to love on her, to gift her their son's teddy. It was the most awful visit because it was the only one they would ever get with her. It was beautifully heartbreaking.
We sat, we talked, we laughed, I am sure we cried and in that conversation, I proclaimed, "I am going to write a book someday." I had been filled with so much love, so much amazement at the strength of my daughter, my husband, the community that surrounded us, I was sure that I needed to share this story with the world.
It was during this time that I started writing. I wrote about everything. I wrote about our days in the hospital and our long nights away. I wrote when we learned that our daughter would not be coming home, I wrote when we moved her to "her" home at George Mark. I wrote about all the beauty that surrounded this tragic time. I wrote when my heart was torn from my chest and we had to hand our baby over, for the very last time. I wrote in the years following; of intense grief, sadness, despair, hope, a new pregnancy, a little brother, joy, life moving forward, writing, writing, writing.
And in the midst of writing, my life has continued to shape what has grown to be my passion; educating others about infant loss and grief, providing hope for recovery and healing, and supporting bereaved parents. I started the Ruthie Lou Foundation providing Comfort Boxes to families when their baby passes away in the hospital. I was educated as a Certified Grief Recovery Specialist and began working with grievers to help heal their broken hearts. And along the way, I became the face of infant loss in our community, and an advocate for grieving parents; answering any email, text or phone call from other mamas missing their baby.
While the story of Ruthie Lou's life has yet to be written anywhere other than these pages as of yet, I saw a need that I could fill. When we left the hospital, when we left George Mark, we left without our baby and we left without many resources. I now know that there are resources available, but 5 years ago, the conversation of babies dying was deep in the internet hidden in blogs and had not become mainstream conversation-yet. I scoured the internet, it left me scared and frightened of the lifelong grief I was facing. I checked every library & bookstore, it left me feeling alone. In the meantime, I continued to get questions from other bereaved moms, asking the same questions tryin to navigate this unknown journey of grief.
I started writing the answers to the questions I was receiving from friends, the very same questions that I had asked of others during my early days of grief; the logistical pieces of this journey and what to expect as the days led to weeks and then months after our daughter died. Slowly, Navigating the Unknown was created.
This book became a labor of love, one that I wrote as if speaking to my very dear friend. If you are in this community of bereaved parents, I immediately love you. We understand eachother in a way that (thankfully) many parents never have to experience, but we know a secret language-the language of losing part of our self when our child has died.
I wrote this book, kindly, respectfully, lovingly yet direct. There are hard topics in this book, things that "normal" parents will never have to consider-but we do. Choices that we have had to make; autopsy, burials, funerals, thoughts that give any parent nightmares at night. But when your child has died, this is our reality and I wrote this book to guide bereaved parents through the most devastating time in their life and help move them through the days that follow and how to re-join the world again. As the book follows through the first year after death, my intent is that it creates a community of support and offers hope that although our baby is not physically with us, there is hope for healing. There is hope to feel joy and have a purpose driven life, once again.
So while I have yet to write the book that I promised that night in the hospital room, this book poured from my heart and could not have been stopped. This book is my heart on paper, loving any parent who has the devastatingly need to read it.
Unfortunately, this book is needed. I hope that when you hear of a family who has learned that their baby has died whose life will be brief that you immediately give them this book. There is no time for hesitation, they only get a short time with their baby-please let them make the most of every moment. This book will help guide them through this heartbreaking loss.
"I see those shirts everywhere!" she said to me as I walked into the staffroom for lunch. It took me a moment to even remember what shirt I had put on that morning but quickly remembered I wore my Ruthie Lou Crew shirt in celebration of the upcoming Human Race. I told her it was probably at a past Human Race event but no, nonchalantly she continued to tell me, "I think it was in Cloverdale. Those ladies are always dressed in costume, sometimes they have kids with them and there are usually ladybugs everywhere!" I laughed as so many images and memories came to mind of times when my crazy (lovely and supportive) friends displayed their love for Ruthie Lou in the most unlikeliest of ways. "So sad about that baby." Her voice reminding me we were still having a conversation, she continued to tell me, "Her name was Ruthie Lou." And then I realized, she didn't know. So many times I have answered that question and how painful it was in the beginning. Now I am able to answer with love and pride as I told her, "That's MY baby, Ruthie Lou." We continued talking and I told her about the Press Democrat article hanging in our school office (thanks WMS!!) and after we finished chatting, she went to go read the article. That conversation stuck with me all day, and it got me thinking about the last few years and the impact my daughter has had and how much we have been supported in the last 3 1/2 years.
We have had so much love shown to our family from the start; organizing Ruthie Lou's Celebration of Life, feeding us after we returned home, grocery shopping for us when we couldn't leave the house, sharing our story when it was too new for us to tell, welcoming us for holidays in their homes, showing up at our fundraising events, walking one of the many races that we do for Ruthie Lou, I could go on and on...One thing is for sure though, I do have some crazy friends, in the absolutely best way possible of course; from hanging ladybugs on every lamppost of the Cloverdale Half Marathon, to decorating our front yard with daisies and ladybugs on her birthday, to dressing in full ladybug costumes in public including their dogs and children, those ladies ARE crazy!
The first Thanksgiving after Ruthie Lou died (or maybe it was Christmas) as my friends walked in our home, they unexpectedly had on their RL shirts on. They know I love the Ruthie Lou Crew shirts because I love the image of "walking for you, Ruthie Lou." However on this day, instead of the word "walking" on their backs they had each taped something that they did in honor of Ruthie Lou. Words such as dancing, singing, laughing or believing for you Ruthie Lou appeared. Quickly not wanting to be left out, I ran to my room, changed my shirt and in bold letters taped "LIVING LIFE" for you Ruthie Lou on my back. It felt so good to see how much my daughter, this little baby had touched hearts of those who loved her.
When everyone left, I collected all those pieces of paper and posted them on my fridge to remind myself of how much life was left to live. In those days getting out of bed was still such a challenge, I am so glad the weight of that grief has lessened it's hold now. Living without my daughter is still unbelievable, it is never easy, and it is a constant choice everyday. Some days that choice is harder than others, but everyday I vow to LIVE because she cannot. To some, these Ruthie Lou Crew shirts are merely a fundraiser (and for that I am so grateful) but for me, these shirts represent all the expressions of love for my daughter, the beauty that remains and the reasons that I choose LIFE everyday; the dancing, singing, laughing, believing and LIVING LIFE are all for you, Ruthie Lou.
I am so grateful for all the little ways in which we have been supported, the thousands of little things that people have loved us through. From the smallest gesture to the largest expression of love, they have held us through this, not one thing has been unnoticed. And I am SO excited for the next few weeks to make way for the Human Race. I may not be able to plan an annual birthday party for my daughter but the Human Race is such a special day, I get to see her name across the backs of amazing people in the world, as we help raise awareness and support for other hurting bereaved families who are just entering their world of grief. This is yet another legacy that my daughter has left behind. I am so proud to be her mother.
I am mama of three beautiful babes; two sons whom I have the privilege of raising and my daughter who lived for 33 sacred days.