One thing that I have to be much more mindful of now is self care.  I’ve always believed in the importance of self care but have found that I don’t have a choice in the matter anymore.  The cost is way too high if I don’t spend some intentional time out of my day just for me. 

Another thing I’ve realized is that improving and managing my own self care isn’t as hard as I had perceived it to be.  In fact, I’m finding that small, simple changes can bring the highest reward.  So just by shifting my mindset about self care, I’m doing a much better job of it. 

And here’s how I’ve discovered this lesson.

Winter in Illinois is tough, I have to say.  Not only is it dark and gray and brown, it’s really cold and some days are rather unpleasant. It is also the time of year that I find myself really mourning Lucy because it was in December that she took her final journey home. 

​So coming out of that, plus mourning my dear friend Emily on her birthday, four years since she’s passed, March proved to be a tough month to get through as well. Thanks to a loooooong road trip to some sunshine with my family and the seasonal change to spring and summer, I’ve turned the corner and the worst of it is over for now. And I’ve discovered some things that I know can help me stay more focused on my own self care.

Once I started to really reflect on how hard it is for me to get through winter, mourning Lucy, and how sad I still feel sometimes, missing my dear friend Emily, I was able to accept the pain and forgive myself.  I forgave myself for not being able to do the things I needed to because losing your daughter and your best friend is tough stuff to live every day.  I forgave myself for feeling angry.   I forgave myself for my mistakes. 
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Self compassion is the muscle I’m still learning to flex.  

But before I could see the light, mostly because I hadn’t reflected on all of the things that I was struggling with, I received a sign.  I was thumbing through a magazine rack in a waiting room.  I shuffled through the trashy entertainment news mags and there it was. It was the cover of Yoga Journal April 2018.  It was a headline that seemed to be written just for me.  It read ‘Simple Steps for Positive Change’.  And instantly, something clicked. 

Did I start doing yoga every day, no!  But I did realize that I could start taking simple steps for positive change in my life. 

Less can be more.  So, what if I tried to apply this to my own self care?  Not that doing less self care would result in more reward for me.  Instead, what small, manageable steps could I start to take consistently so that I’m able to handle the stress from daily life and stay true to my journey for self improvement? 

Perhaps most important, I’ve been paying close attention to my mindset, which is largely controlled by my own self talk.  The things that we tell ourselves become true to us.  I’m able to coach students on this everyday and realized I needed to do the same kind of work for myself. 

If students are struggling and saying things like,” I can’t do that” or “This is really hard”.  I say, “Maybe you could talk back to that with I’m going to give it my best shot or if I do my best I’ll get through it”.  Instead of saying “I’m really bad at this”, it’s “I wonder what I can learn about ________ or myself by trying this today?”

When we are compassionate with ourselves, our self talk starts to change.  Because I was having a hard time emotionally, I was unmotivated.  And then I started feeling some shame in that.  And that can become a vicious cycle.  You repeat the negative self talk and become even less motivated. 

So rather than continuing to beat myself up about scratching nothing off my to-do list or finding time for self care, I told myself that I would try again later that day or tomorrow.  Rather than letting negative thoughts prevail, I started telling myself to talk back to those dark words.  And then surprisingly, I was able to start taking the small steps toward self care and self improvement that had been missing from my day to day and are now becoming habit again.

I’ve written before about wanting to explore meditation.  I’ve finally found a way to make that happen on a regular basis.  Five minutes is all I need and I’ve found it’s a lovely way to start the day.  I think the reason I wasn’t able to meditate regularly before was that ten, fifteen, or twenty minutes uninterrupted was difficult for me to find in the day.  But five minutes just before or after my shower in the morning, totally doable. 
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And some days my six year old is already awake, so she joins me.  One morning, I knew it was going to be a great day when she skipped into our bedroom proclaiming, “Mom, it’s time to meditate”.  And from there she found us a 20 day meditation course through the app I’d been using.  

What I’m learning is that the most important thing about meditation is the make sure you sit, everyday if you can.  Sometimes weekends get hectic and with it being summer, we are travelling a lot, so I may miss a day or two here and there.  But I’m drawn back to it, almost without it being a deliberate decision.  Some days I just find myself there, because that is exactly where I need to be. 

I would say I’ve been meditating, usually daily, for three to four months now.  And I can feel a significant difference.  I haven’t felt anxious at all.  At all.  My eMotIOnaL reGuLatiOn has greatly improved.  I’m able to handle little ups and downs in my day feeling calm and grounded.   My focus and attention to task have increased. My ability to stay present is better, almost inherent.    

​These have been the most difficult symptoms of PTSD for me to manage the last three years. While I’ve learned the lessons, living them is the tough part.  Some days are better than others, but I finally have the emotional stability to just be and live the lessons. 

When managing my time, I also try not to let a lack of it interfere.  On the days that I workout, I often only have twenty to thirty minutes for cardio and a few weights.  And instead of scrapping it because it’s not enough time, I steal those moments because I know that twenty minutes of cardio is better for my mind and my body than zero minutes. 

Instead of dreading or putting off going to the gym, I try to think about what new things I will try there or simply look forward to going there alone.  Alone time is hard to come by and I crave it sometimes. 

Another thing I realized I had to do was take some of my time back from things that don’t really contribute to my self care.  Do I want to spend five or twenty minutes on my phone, scrolling through social media, or do I want to use that amount of time to meditate, run, stretch, or read a book?

And once you start setting social media aside, like any other addiction, you find yourself being able to go without it more often.  The less you get on FB or IG, the less you have to get on.  Now, I will say that I’m relatively new to social media, so I will defend my habit a bit.  The point being, I see how addictive it is and am learning to set it aside so that I can spend that time on me, doing things that make me feel content, calm, and grounded.

I promise myself to meditate daily for at least five minutes and be mindful of my self-talk so that I can be more compassionate with myself.  As often as I can, I will read books, workout, and drink coffee in the sunshine on my back porch.  I’ll spend time in my garden, go on adventures with my family and every once in awhile, I’ll even go without them. Yes, I am a mom, a wife, and a teacher but if I don’t take care of me, I certainly can’t take care of all those people. 

Taking care of me doesn’t have to be complicated or take up a lot of time.  It just needs to happen. 

So, ask yourself, where can you find time just for YOU today?

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. 
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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.  

December. Well.  I’m glad that’s over.  It’s taken me awhile to get back in this seat at my computer where I do my writing.  I really didn’t have the strength while I was living it and also thought I wouldn’t completely be able to process everything until I had gotten through it.

After all, I was in survival mode. 

December 12th of this past year marked two years of my youngest daughter Lucy’s passing.  And I’ve already shared that for me, last year was dramatically different then the first year of grieving.  It was distinctive in a positive way, less raw then the first. 

But man, did I underestimate the range of my grief.  Looking back I’ve realized I was even a bit overconfident heading into the month, thinking that it wasn’t going to be so bad.  I was hugely mistaken. 

Without warning, one day in early December heartache set up occupancy inside my soul.  But it didn’t bother to call or text first.  No, heartache left me to figure out on my own that it had dropped in for a visit. 

It arrived first in the form of pain and anxiety.  Physical pain in my body.  This was pain that seemed to come out of nowhere.  Same with the anxiety.  What should have been an ordinary Thursday was disrupted with butterflies in my stomach and an overall uneasiness. 

I found myself relying on my “just get to the car” strategy quite a few times that day. 

“Just get the students to lunch and get back to the empty classroom. “ 
“Just make it to the car.”
“Just make it to the shower.”
“Just breathe deeply and try to fall asleep.”

At the end of the work day, I arrived safely home, in my refuge, and it was time to meet my oldest daughter getting off the school bus.  Like a deflating balloon, the pain and anxiety gave way to sheer exhaustion.  This is the type of fatigue that you feel all over your body, a heaviness.  We were supposed run a few errands before dinner and in a moment of clarity I scrapped those plans. 

I think to myself, “I remember this feeling”.  And I know that I am going to have to survive now, one day at a time until the calendar flips to the next year.  This evening is first.  I know it is time to take it easy on myself. 
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I turn on the Christmas tree lights and light the fire.  I put a Christmas show on TV for V.  I lie on the couch and just sort of gaze at the lights on our tree.  

After some time my mind wanders back and I try to reflect on the day.  I’m trying to put into words what I’ve just experienced that first dark day in December. 
 
I write four words on a post it note (pretty sophisticated note taking system, I know): 
pain, anxiety, exhaustion, anticipation.

Those four feelings had hijacked my day.
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I draw a line down the middle of the note and try to think of the opposite of each thing that I felt that day: joy, contentment, rested, presence.

​​Then I remember I didn’t sleep well the night before.  I had trouble falling asleep and then tossed and turned all night, only to doze off moments before I had to wake up.  For me, rest will be most important this month.  I’ll work on that after dinner and a little time with V. 

In that moment though, I needed to relax and unwind.  Do I normally allow TV before dinner on a school night?  No.  Do I normally order take out on a weeknight?  No.  But Dad is working late and as of today, I am officially in survival mode. 

So while someone else was making and delivering our dinner, we changed into the coziest clothes we had and enjoyed the magic of winter for a few hours.  By the end of the night Violet was running around in her underwear with reindeer antlers on singing (screaming) Rudolph the red nosed reindeer.  And I enjoyed every second of it. 

After getting V tucked into bed, my thinking was, that if I can do my best to stay well rested and present, then the pain and anticipation will subside.  And I will throw out my expectations.  For everything.  Until December is over. 

Survival mode for me means avoiding things that may drain my emotional reserves.  Sometimes it means saying no to invitations.  Other times it means showing up with a smile on my face.  It  means a few glasses of wine, brownies, or a marathon of horrible TV on BRAVO.  It means putting on the gym clothes and heading to the gym when I can, and not beating myself up about it when I don’t. 

Survival mode means calling someone that I know will listen and sending a call to voicemail when it is not the right time for me.  It’s about crying in the shower or my pillow or wherever I am as often as I need to.  It’s about asking for help and taking naps.  It is not even about picking battles, it is about becoming a pacifist. 

December was a harsh reminder that this part of our journey is always going to painful.  The anniversary of Lucy’s passing and Christmas without her will always hurt.  Like my dear friend said to me, “December is not your month”.  And she’s exactly right.  And I have to both accept and remember that. 
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This past December showed me that time eases the frequency of the pain but that the pain will never go away.  And some days or weeks or maybe longer will be more difficult than others.  

These days, the most difficult ones, shine a spotlight on my grief.

The agony feels like no other again.  The spotlight is on the pain and torment of our reality that Lucy’s not here. And she should be.  And there is nothing that we can do to make that happen.  Ever.

And it’s not just Lucy’s birthday or the anniversary of her passing or Christmas day that are difficult.  For me, it is often the days leading up to those that are the most trying.  Then sometimes it’s the days after.  Or it can be a seemingly random moment where I stare at the empty swing next to Violet while she is playing in the yard.  And it all feels unbearable again. 

I’m happy that I’ve stepped out of the spotlight for now.  I know it will shine on my grief again but I also know that I have my survival skills to make it through.  And with those survival skills, I can also experience the joy of new memories with my family in December.  Joy and pain side by side is all I know on this journey.  And I’m grateful for that. 

​How do you survive when grief shines its spotlight on your pain?  

To say that I am enjoying having a yard and space to grow plants is an understatement.  I’ve been gardening since I was a kid.  My parents always had a vegetable garden and my grandparents had a sizable one.  My aunt still does on the same land.  It was in that very soil that a tomato legacy was born.
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I have memories of pulling up to my grandma’s house and she would be picking Lima beans.  She was blind.  The only thing I never saw her do was drive a car, though my sister dreamed she did.  Grandma was behind that wheel and we were saying things like “A little to the right.  Straighten out the wheel”. And I wouldn’t have been surprised if she had pulled it off.  My grandmother was amazing.  

So I guess you could say that gardening is my genes, though I’ll never claim to be much good at it. 

When I lived in the city, I managed to pull off some satisfying container plants at apartments and our condo.   I also built a few school gardens over the years as a teacher.  But without those gardens being right outside my door, it was difficult to tend to them in the summer when it was flourishing. I always felt a bit like a neglectful gardener when the garden was at school.  And I’m finding that I missed out on a lot too, some of the most interesting things that happen over an entire growing season. 

For me, there is nothing quite like getting my hands dirty. Clearing a piece of ground and planting seeds always makes me feel hopeful.  I love moving around in the space and letting my mind wander while I work.  I also love standing back and being able to see the fruits of my labor.  I feel a connection to my grandparents that are no longer here but taught me how to garden. 

I usually start planning my garden in February or early March.  I’ve been kicking around ideas since the previous growing season.  But once I start putting my ideas on paper, mapping out different spaces in the yard, I start to feel alive again.  It actually helps me emerge from my winter hibernation.  Days start getting longer; temperatures become bearable again.  And the thought and promise of green vegetation, pretty flowers, and fresh veggies begins to awaken my soul. 

I’ve also come to realize that what happens in the garden over the course of the growing season contains little bits of wisdom for me.  Seeds.   As my mind has wandered in my blissful work this season, I’ve discovered that my life, particularly my grief journey, resembles that of life right inside my garden. 

It all starts with a plan.  I make choices about what I want to plant, take measurements, and even premeditate a battle strategy against pests.  And once the earth revolves a bit more around the sun, making the soil come to life again, I begin to implement what appears to be my full proof plan. 

And then, well, nature begins to manipulate.  Almost immediately, my plan begins to feel a bit out of my control.  

This year in mid April, I started my seeds.  And even though I was ready, the soil temperature didn’t become warm enough for germination for many more days. Even though I had waited nearly 7 months to tend to my seedlings, that didn’t matter to them.  It continued to stay cool, until one day in the end of May when it finally was warm for several days in a row.  

After all that anticipation, our seedlings emerged so we began to prepare for war. I know from last year that left unprotected, the only ones that would enjoy our crops would be the bunnies. I also know from growing in the city, that you don’t need a huge space to grow adequate amounts of veggies. So we built the wall.  

We managed to enclose our seedlings to avoid being gobbled by the rabbits, and low and behold, a nasty little chipmunk found a weakness in the bamboo fence.  There went the watermelon blossoms and a few tiny melons to boot.   

Time to mend the fence. 

June was hot and bone dry and then bam!  The floodgates opened in July and it was like a monsoon season.  Too much moisture meant an opportunity for a fungal blight to infect my tomatoes. 

Not my tomatoes! My precious heirloom seed that has been in the family for 50 years or so.  The same tomatoes that my grandparents and my aunt have so lovingly grown all these years.  I managed to fight off the chipmunks from eating the fruit like last year, and now this.   The leaves start to yellow and then brown. 
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Time for damage control.  

However, in between these unexpected fluctuations in temperature and precipitation that result in tragedy, I enjoy the beauty that is starting to turn up.  I begin to notice that I have inadvertently created a red garden.  I have red canna bulbs that the hummingbirds love, red Thai chili peppers, tomatoes, and lovely crimson begonias on my front porch.  My delicate white pea blossoms and lavender flowers add a subtle but satisfying contrast.  

​The veggies start producing and I determine that we have won the bunny war.  My daughter tempts some of the older neighbor kids to try a sugar snap pea or a cherry tomato.  And they all wait patiently and watch the one watermelon that managed to survive as it matures.  It’s enjoyable hearing them share their observations and wonder how sweet it will be, how much bigger it will get, and what color it will be on the inside.  

In another dramatic episode, my serrano pepper plant which was loaded with peppers, started to defoliate.  I harvested all the peppers and got busy in the kitchen.  A few weeks later I noticed that new leaves had emerged and blossoms were appearing.  The plant which I thought was a goner for the season, revived itself and surprised me with more beauty and more peppers to harvest. 
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My garden at the end of the season is a sum of all the things that occurred over the last two growing seasons.  Perfect, no.  Without tragedy, absolutely not.  But beautiful, purposeful, and nutrient rich.   It is the provider of fresh veggies for my family and neighborhood kids that are brave enough to eat them.  It is the source of complete satisfaction when I have an evening harvest and then prepare a fresh meal for my family.  

Life in my garden is a continuum.  It keeps on going, yet changing over time.   There is always a bit of range.  From the beauty and worth of the harvest to the loss from devastation which surprisingly can cause more growth, my garden is the sum of all its parts. 

So here I am now. At this moment in my life, I am the sum of all my parts too.  Perfect, hardly.  Without injury or hardship, no.  But growing.  And understanding that the most challenging of circumstances foster the most growth.  Seems kind of ironic.  Even harsh, and cruel.   But I can accept this now.

I can still wish it wasn’t this way as I weep for other moms that are living the same thing that I have.  But the beauty in their strength as they advocate for their children while they are alive and after they’ve passed will not be lost on me. 

And as I reflect on my second season of grief for Lucy, I’m noticing some things.  Last year was painful.  Reliving memories when Lucy was still with us was heart wrenching.  I think mostly because she should have still been with us.   And my heart just ached for her to be.  Not that it still doesn't, it always will.  But getting through all my firsts have allowed the gratitude and love to sort of encapsulate that pain in a way that makes it more bearable.  

This year feels dramatically different to me.  I feel joy when I remember the days when I held both of my girls.  My heart has been warmed by others acknowledging and honoring Lucy in special ways.  It feels good to start new family traditions, like carving a pumpkin for her too.  Last year it was just too painful.  A reminder that she was gone.  This year there was beauty and warmth in honoring her that way.  

​I’ve discovered grief gifts.  Little things that speak me as I wander around in my day to day life that remind me of Lucy.  It can be a special song that plays at just the right time, meeting a new Lucy at school, or more significant events like my oldest daughter drawing our family with 4 people in it.  To me, these are all gifts that allow me to pause and feel all the love that I still have and always will have for Lucy.  I always make sure to acknowledge those gifts with gratitude and hope that they continue to comfort me.  

About one year ago, while on a family vacation in Catalina Island, I discovered the heart2heartproject.  Angela Miller has a blog for grieving families called A Bed For My Heart.  Her grief gifts from her son are hearts.  She finds them everywhere, in nature and in food.  And she has a gallery where she posts pictures of hearts found by families in honor of their loved ones.  You can also post directly on her FB page. 
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After learning about this wonderful project, the very next day, I was humbled when my husband pointed out a cactus shaped like a heart while we were on a hike.   After going almost a year without noticing a heart, I received  more hearts this October.  A radish from my garden, two seeds joined together from Lucy’s pumpkin, and a few others.    

I do have to be fair to myself though and acknowledge what lies ahead.  I can sort of feel a shift as the calendar heads into November.  Trauma can be tricky.  It gets stored in the cells of your body.  And without being aware of it, the effects can sort of sneak up on you.  Kind of like the fungal blight that lies dormant in the soil until the next growing season. 
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So no doubt my body remembers how difficult it was to ride in the ambulance after resuscitating Lucy when she stopped breathing at home.  No doubt the cells in my body stored the strong emotion from making the decision to sign the DNR and head home with our sweetheart in hospice care.  No doubt the trauma of our little girl leaving our arms is still imprinted in the physiology of my being and it always will be. 

However, despite all of that, I can find some comfort in knowing that my grief is a continuum.  I accept that it will keep going, yet changing over time.  From the beauty of my grief gifts to the devastation of those difficult moments where my body does still ache for Lucy to be in my arms, I’ve learned to feel and be present in both so that I can foster new growth. 

So by allowing myself to grieve, I’m going to strive to be like my garden, and grow where I’m planted. 

I’ve been thinking about and writing this post off and on for months now.  One day at school, I was in a classroom that had their “I Am” poems on display.  This is a formulaic poem that teachers often share with their students at the beginning of the year to build community.  It fosters self realization but also gives others a chance to get to know you.  Here’s what I came up with that day:

​ 
I AM
I am thick skinned like my family heirloom tomato.
I wonder how life will challenge my resilience again.
I hear the wind shaking my Thai chili peppers like maracas.
I see the dark pink radishes poking out from the soil.
I want to feed my soul with the fruits of my garden.
 I am thick skinned like my family heirloom tomato.

I pretend she’s still here, now learning to talk.
I feel an angel’s wings.
I touch the warm memories.
I worry she will be forgotten.
I cry for my Lucy.
 I am thick skinned like my family heirloom tomato.
 
I understand our love for you will never die.
I say you are the light.
I dream that you still feel our love.
I try to honor you.
I hope that you know how much I’ve learned from you.
I am thick skinned like my family heirloom tomato. ​

Being  a mom today is hard for so many reasons.  I don’t think that it was ever easy.  Mom’s end up sacrificing, no matter what year the calendar says.  But let’s face it, a lot has changed about being a mom since I was a kid or even since my mom was. 

I’ve talked with several of my girlfriends about this, at times it feels like we have too many choices.  Do you breast feed or bottle feed?  Disposable or cloth diapers?  Co-sleep, sleep train?  Nanny, nanny share, day care?  Screen time or no? When it comes to preschool:  play based, public, Montessori, dual language?  Full day or half day kindergarten?  When I was a kid there was one school and my Mom said, “There’s the school, go on in”. And I went. 

I know that these are first world problems that I was fortunate to be frazzled by with the birth of my oldest daughter.  My point being, it can feel overwhelming. Even before Lucy was born, when Lucy we learned the reality of making what could be life and death decisions.  

Then there is the pressure that society puts on us.  Some of us are working moms , others are work at home moms, and still more stay at home moms, which for some reason society doesn’t seem to count as “work”. ??. The Pinterest worthy birthday parties and extra-curricular schedules.  Oh, and don’t forget to take care of your partner.  And while you’re at it, eat healthy, exercise, and organize your house. 

So how does one navigate life as a mom today? 

When I was pregnant the first time around, and when Violet was an infant, I read a TON and researched almost everything. 

And now I would have to say my philosophy is mostly that, we are learning as we go.  When we are in the thick of something new, I still may do a little bit of googling, ask girlfriends for advice or book recommendations. But mostly I try to keep in mind who my daughter is, what she is going through, and day by day, we get through whatever new milestone or developmental phase we are in the midst of.

I’ve learned it’s most important though, to follow my instincts.  Follow my gut.  For me, that means using my head and my heart.  And turn all that other noise off.   Eliminate Mom guilt.  Do what I feel is adequate for myself, my children, my family. 

No harm in doing some research, talk to friends, but most importantly use your head and your heart to guide you.  Use your instincts. 

This is one of the most valuable lessons I’ve learned in the last two years.  It has helped me sleep better, it has (mostly) eliminated anxiety, and overall, it has helped me feel more content in my day to day. 

As I sit to begin this entry, I’ve just returned from the post office to pick up some certified mail.  I wasn’t expecting anything in the mail so I really had no idea what it was.  My hunch though was that it was a package from my lawyer.  And I was right.

I arrive home with a large package containing all of my medical records and a letter stating that, unfortunately, we don’t have a case.  The clinical record, the medical story of me and Lucy staring back at me.  It’s intimidating. 

I’m beyond grateful that  I’ve rewritten our story.   

I know I didn’t receive the medical advocacy I deserved during my pregnancy, so we were trying to determine if everything was properly handled.  As far as the law was concerned, it was.  As far as I am concerned, it was not.  

What I do know is that nothing we could have done during that time would have changed how Lucy’s body was made.  So some closure came in the mail that day and another very important reminder for me to listen to my instincts. 

My instincts knew not to put any hope or energy on a potential lawsuit and on what that incredibly thick and unexpected package contained.

As I’ve been able to reflect and piece together our dark days, I’ve found that there were plenty of times that my instincts were veracious.

We never got any clear answers or even possible diagnosis during my pregnancy with Lucy.  I had switched doctors after my first trimester because my previous practice was no longer delivering babies. There were meetings held behind closed doors with specialists, but we were never invited in. 

During my 20 week ultra sound the dread began.  I could tell the tech was looking at something very closely.  I had a strong feeling that something was not right.  She said the baby was awfully active, so she was having a difficult time getting the images she needed.  She would send us to see the doctor and then try again. 

 I figured our doctor would fill us in if there was concern.  And my gut tells me she knew. She knew they suspected a hole in Lucy’s heart.  And she didn’t say a thing.  She just sort of rushed us along. As we headed back across the hall to return to ultra sound, to get what we were told would be images they could not previously get due to our baby’s movement, I sent my husband on his way to pick our oldest daughter up, as it was getting late.  Surely the doctor would have said something, if there was concern? 

So I would get the news alone.  “We think your baby has a hole in her heart so we are going to send you over to Northwestern.” I will never forget that cold walk back to my car along Lake Shore Drive in March, March 4th to be exact.  My fingers pained from the cold as I talked to my husband on the phone, telling him I would be delayed. 

As you can imagine, lots of sleepless nights ensued.  Terrifying google searches.  All the while trying to hope and even pray that all of this was would end up being about nothing. 

And then again around 30 weeks, when new concerns about Lucy’s heart arose I knew.  That’s when I knew from the depths of my soul that Lucy was going to die.  At the time I thought it would be before birth, but I knew.  My head was keeping track of the tests, their results, and their lack of results, and all the while my heart knew that something was drastically wrong. 

So I revisit this dark time in our lives to remind myself how important it is for me to follow my instincts. 

And also because I think that lots of people, moms in particular, can forget that everything we need is within us.

When a decision becomes too difficult to make we need to take a step back and access that part of us that knows what is the best decision for us, our kids, our families at that time.   And then make a decision and go with it.  No more going back and forth, no more mom guilt, just trust in what we know is right. 

I can think back to plenty of times where if I would have listened to my instincts, I’m pretty sure I would have been better off.  Maybe I was worried about what someone else would think, was scared to do what was required at the time, or wasn’t able to block out all the noise and distractions.

But not anymore.  And I’m finding that once you turn on that ability to listen to your instincts, it’s all that you hear. 

Because now I know, everything I need is within me.  

Time.  It’s how we quantify our day, our lives.  And as I’ve gotten older, for some reason it seems to be moving faster.  Our children remind of us of this as we, literally, watch them grow into themselves. 

Time not only changes us from children to adults.  As time passes our experiences can change how we view the world and how we feel about the people in our lives.  And it can dramatically change our feelings on a grief journey. 

Shortly after Lucy passed away, people that have lived grief told me that time will help to ease the pain.  And at that time, in agony, I couldn’t believe them.  I wanted to, but I didn’t. 

It turns out they were right. 

Does it take away the heartache?  Never.  But what I ‘m learning, is that as time passes, it makes the hard days less frequent.  And it allows you to feel joy again in places that were once extremely painful.

As we approach Lucy’s 2nd birthday, I’ve been reflecting a lot, as you can imagine.  Getting through the first year, to the date, of her passing was a turning point for me.  That doesn’t mean the pain was gone or that the long lasting effects of the trauma was gone.  And time will never change how our family was affected by the loss of Lucy. 

​But I’m happy to say that it is right with my soul.  So how did I get here?  Besides time, what has allowed me to heal in a way that I am at peace with the death of my youngest daughter?  While time happens on its own that’s not all that has allowed me to heal.   I’ve had to push myself and do some heavy lifting in areas of my life that required it. 

I’ve said this many times before; my oldest daughter has been my savior.  Without her, I don’t know how I would have put one foot in front of the other again.  She has been my hope.  My ray of light, guiding me towards the future.  

Art has also had a healing effect on my sadness and trauma.  Music in particular has been a tremendous help for me.  It has been a way for me to connect with what I feel and also ease the isolation that I felt in my pain. 

I’ve always had an appreciation for music.  Even as a young kid, I remember playing tapes in my room on Saturdays while I cleaned.  I guess that was my Saturday chore? When I could finally drive, there was always music blasting and I remember making mixes, trading bootlegs, going to concerts.  I ended up listening to the same tapes and over and over again, getting to know the lyrics and being touched by their meaning. 

Also in the spring following Lucy's passing , rather than going back into the classroom, I got a job at a plant nursery.   The job itself was therapeutic in many ways.  I’ve understood for awhile the healing power of plants and worked with plants before I became a teacher.  I remember reading about studies that showed patients in hospitals with a view of a park or even trees went home sooner than patients looking out to a parking lot or a street.  I’ve worked in school gardens with at risk youth and seen firsthand the power that plants can have in providing developmental assets to kids.  So just getting my hands dirty, doing physical labor, enjoying the ascetic beauty of plants again was healing. 

On days that I worked in my department alone, I would play music on a blue tooth speaker.   I didn’t have much music on my phone and not much data to use Wi-Fi, so I ended up listening to one album in particular over and over again.  I got to know the songs, and connected with their message or at least their message for me.    
​
That album was True Sadness by The Avett Brothers.  This album has so many great songs, but right away the title track resonated with me.    The song made me realize that everyone experiences extreme pain in their lives.  And that helped me move away from the “Why us?” mindset.  Why did this happen to us?  Why were all our dreams shattered when this was supposed to be the happiest time of our lives? 

​The song also reminds me of the gratitude that I have for the people that supported us and how important it is to support the ones that we love.  

​I saw a short clip of an interview with Seth Avett talking about the album.   And he said something like, If you wait long enough, the sadness will show up in your life.  And he’s right.

I know plenty of people that have suffered pain and loss.  Some at a young age, dealing with tragedy that no one, especially a child should have to live.  Others later in life, the point being, when I stop and think, there’s not many people that I can think of that have not experienced true sadness. 

His brother Scott, explaining the meaning of True Sadness said that we can’t really celebrate the joys of life without knowing true sadness and tragedy.

 “I’m not saying you can’t be happy until you’ve felt hard pain, for sure you can be.  I’m living evidence of that. But after, you understand that gratitude is beyond painful life-changing events.  I witnessed people around me who utilized that.  I see them enjoying life and utilizing life in a much more sincere way.  So that being said, true sadness is possibly fuel for the gratitude of life, which is part of the joy.”

Yes. Yes!  When we were at our worst, our loved ones supported us and got us through the true sadness.  So our tragedy shined a light on everything we have to be grateful for in our lives.  And it taught us to appreciate the normal days and to live life again making new memories. 

Link to True Sadness Video

​Another song on the album, "No Hard Feelings", made it difficult to water plants without shedding tears.  

​This is a beautiful song about leaving this world harboring no hard feelings and having no enemies.  More inspiration for me to be better and not bitter. 

Link to No Hard Feelings Video
​

Last night I started watching The Grateful Dead documentary Long Strange Trip and Jerry Garcia was explaining how that band got the name and what it meant.  At the time they were the Warlocks and they discovered there was another band, who later became the Velvet Underground, with the same name. 

In their search for a new name, Jerry ended up opening a dictionary and the first thing he saw was “Grateful Dead”.  The entry was a folk tale motif about a wandering man that pays for the burial of a stranger with his last penny.  The the man is then helped by the spirit of the dead.  After losing his father at a young age, Jerry understood that once you confront death, you know how to live. 

And then last summer, at the Phish show.  I was hoping for a Lucy in the Sky with Diamonds, still am, from anyone live! I didn’t get that, but I was touched by “Miss You”, followed shortly after by “Free”. Like those songs were hand picked for me on that warm summer night at Wrigley Field. 

And then on the one year anniversary of Lucy’s freedom, music spoke to me again.  I was on my way out the door to the gym and stopped myself.  Although I had planned on writing later that day, I sat down and shared the lyrics to “If You Want To Sing Out”, by Cat Stevens.  This song captures all that I wanted for my sweet Lucy and all that I want for my sweet Violet, freedom.   Skeptics would say it was a coincidence when this song popped up on my Pandora feed 20 minutes later at the gym.  I almost fell off my treadmill and ran over to my sister pointing to the song playing on my phone.  She looked at me like I was a crazy person at first, but I told her I had just shared this song on my blog in honor of Lucy.  And this song was one of the last that played for Lucy as she started her journey home. Again, a Pandora selection.  Did it randomly play for me on those days? Not what I believe.   

Never underestimate the power of art in healing.  Artists put their heart and soul into their work, so of course it has the power to evoke emotion in us.  There is nothing greater that I think of than touching someone on an emotional level.  And that is what music does for me. 

So as Lucy’s 2nd birthday approaches, we are planning our 2nd “ 10 Acts of Kindness Event”.  While we try to show kindness every day, deliberately spreading kindness on Lucy’s birthday is our way of honoring Lucy and her lessons and spreading the kindness that was shown to us, with gratitude. 

You never know what someone is going through so please be kind!  And as you do, you may be surprised at how that kindness spreads.

Cue all Avett Brothers fans “And It Spread”. 

Please join us on Lucy’s birthday, July 10th, as we honor her sweet memory with 10 acts of kindness.

​Drum roll…….I’m excited to say that some of our acts of kindness will take place at The Avett Brothers shows at Red Rocks in a few days, just days before Lucy day!!  

Being on a grief journey is tricky, to say the least. . In some ways I feel like the dark cloud is lifting.  But then, at times out of nowhere it seems, it’s difficult again.

​And I’m not sure if it’s my coping mechanism, but sometimes I don't anticipate just how difficult some situations will be. 

A few weeks ago, there was an open house at V’s school.  The day of the event, she was super excited.  Telling me all about the activities we would be doing together that night.  How precious. 

She and I went to her school and as soon as we arrived, my sadness did too.  Almost every family there has a child Violet’s age, and a child Lucy’s age.  We ended up leap-frogging a lovely family with a Lucy.  So we heard her name, easily 25 times.  While I enjoyed seeing V in her daily environment, my mantra was “just get to the car, just get to the car”. 

I guess my coping mechanism is working.  If I had anticipated that this might be difficult, I may have dreaded going or even avoided it.  And I would have missed out on sharing something incredibly special with my daughter. An event that she felt really proud about.  And so did I. 

Mother’s Day.  Similar situation.  My oldest daughter is the light of my life, and thankfully, she is here. I can hold her in my arms.  My youngest daughter is not.  The only Mother’s Day Lucy was with me was before she was born.   So Mother’s Day for me is a paradox of joy and pain, gratitude and sadness. 

Leading up to Mother’s Day had been fine.  I'd say I’d been overall happy when I thought about the day.  I’d been busy making plans for gifts for the Mom’s in our lives.  And I’d committed to working at the plant nursery for most of the day. 

Then the other day I pushed into a 3rd grade classroom as a resource teacher and they were publishing their Mother’s Day poems on laptops.  The first (and only) poem I read stopped me in my tracks.  I wish I would have taken a photograph, but it was something along the lines of:

Instantly, my eyes filled with tears as my heart sank for this little boy.  I know how hard Mother’s Day was for me last year, as an adult, grieving my youngest daughter.  How hard is Mother’s Day, and all the days in between, for this little guy and all the other kiddos out there who have lost their mom?  Or adults, that have already lost their mothers?

And it made me reflect on a few things.  The first was one of the things that I love so much about kids.  They have an inherent ability to accept. To accept even the most difficult things in their lives. Most of the time they simply need an answer or clarification, and then they gracefully move on.  

And then I remembered how much acceptance helped us to be present and make memories with our family while Lucy was in our arms.  We could have denied, ignored, angrily disagreed with doctor's that had devastating news to deliver. Instead, we accepted.  And to the best of our ability we enjoyed our precious time with her.  

You see when we accept, we free ourselves. We allow ourselves to be present.  And even in the most difficult times, we free ourselves to see the silver linings.  

So if this little guy, the 3rd grader with the awesome poem, is ready to accept his Mom the way she is and celebrate her on Mother’s Day, I can too with my Lucy. As difficult as it is to not be able to hug and kiss my little Lucy on Mother’s Day, I love her just the way she is. And I still have her big sis here with me to hug and kiss.  And I still have my Mom to chat with and remind her how much I love her.  
​
I love Lucy just the way she is.  She is the light.  She is the soul that taught us how special the ordinary days are.  She is the soul that showed us what a great big sister she has.  She is the soul that showed us just how tender love is and how strong we really are.
​
And that big sister has been bringing home cute little Mother’s Day gifts all week.  Violet was so proud when she told me she picked the purple tissue paper to wrap my gift because she knows it’s my favorite color. And I just love that.  What a gift. And when she says "Happy Mudder's Day", I want to freeze time because her voice is cute and the way she says it is just perfect.  

Maybe this is me relying on my coping mechanism.  But I'm feeling hopeful about this Mother's Day. I will not overlook or miss out on feeling all the love for both of my daughters and my Mom because of the sadness.

Because I love them all, just the way they are. 
​
Happy Mother’s Day to all Mom’s out there!  To those that still have their kiddos with them, and especially to those that don’t because I know how you are feeling. A big hug to those that are missing their own Moms too.  And a very special Happy Mother’s Day to my Mom, who has always been there for me and who, thankfully, still is today.   

In fact, it’s necessary. 
​
It has been awhile since I’ve been motivated to sit down and write.  That doesn’t mean the lessons are over.  I’ve got plenty of them rolling around in my head and my heart.  And what feels extremely liberating about my blog is that I have total control of what I share and when I share it.  And what makes Lucy’s lessons so profound to me is that they speak to me, she speaks to me, in real time, even though she is gone.  And this blog would not exist without a little help from my friends.  

Recent events have inspired me to sit down and share another lesson that is long overdue.  I don’t know why life is like this, but difficult things seem to happen in clusters.  And lately, some really difficult life events have occurred to people that we know and love.  And they need help.  And that’s okay. 

Why in the hell is it so difficult to ask for help when we need it?  The first thing that we ask our friends, family, spouse, children, students when they are struggling is, “How can I help?”  But yet, when we ourselves need help, it feels a bit shameful to ask for it.  Maybe we feel a little guilt, like we are putting someone out or overstepping our boundaries.  

We feel this way even though we usually don’t feel the same when we are the helper.  We don’t feel like we are being taken advantage of.  No, we just notice that someone else needs help, so we help them.    

I shared a bit of this in one my first posts “If it’s in your heart, say it”.   Our family and friends surrounded us once they knew about Lucy’s diagnosis.  Actually, even before they knew they surrounded us with love and support, like we do for each other when a baby is born.  Babies have that super power.  They actually pull love out of people and then that love is magnified right before your eyes. 
​
After we broke their hearts with the details of Lucy’s medical conditions, they literally ascended upon us with even more love and support.  And what was strange to me at first, was struggling to accept that help.  It’s so easy to say “no thanks” or “don’t worry about it” even “that’s okay”.  But why?  For what? 
​
When I could no longer say “no thank you” because the load that I was carrying was too heavy to bear alone, I learned that it was okay.  What we forget or don’t know yet, is that sometimes with just a little bit of help, we are able to do things that would otherwise have been impossible.  Impossible and necessary at the same time.  

And here’s the thing, we all need help at some point in our lives.  And I would argue that if we asked for it more often when we needed it, we would all be better off.  Because then we could truly reach our potential.  Learn new things.  Be more present.  Share more memories.  Get through this god forsaken life that is filled with pain, together.  And with that help, we can experience joy in life.  In a life that is complex and difficult. 

Another thing that I’ve learned about asking for help is that you can also ask for it with little day to day things.  It doesn’t always have to be when you are in the thick of one of life’s disasters. 

​Asking for help can improve your relationships. I think we’ve all experienced feeling a little resentful when a spouse or a child doesn’t do something we think they should do. We can harbor that resentment and “just do it ourselves” or we can just ask for help.  It’s so simple.  “Honey, would you mind _________?”  “Child, please put your shoes in the closet where they belong”. 

​I know these are tiny little everyday examples, but they sure make my house happier.  Just by asking for help.  I’ve been teaching my daughter to do this since before she could talk, so why wouldn’t I live this lesson too? 

Now I do.  And it is still difficult sometimes.  But I accept help and acknowledge with gratitude.  And look for the chance to reciprocate. 

So the next time you find yourself needing help, whether it’s for something big or small, just ask.  And who knows what you will be able to do then?! 

This memory is a perfect example.  If you had any idea what we went through this day.  I woke up with the crazy idea of taking everyone to the zoo!  Just to have the experience and memory of a walk around the zoo with both of my daughters.  

​My aunt rode in the backy-back of my SUV.  (she's over 60) My mom rescued my 3 year old from being trapped in a 3 dimensional maze crawling with 3rd graders in a summer camp program.  And then her shoes.  Someone paid for parking.  Someone else rescued my three old from trying to jump in the "pool" with the sea lions.  There's more but I will spare the innocent involved too much embarrassment.

​Could I have managed this day alone, no way!  So I asked for help, and we did it.  And this is the only day of my life where I got to take both my girls to the zoo.  I will never forget it.  

​All because I asked for help.  

I think the first time I heard Violet say this was at the playground.  You know those toys at playgrounds that allow you to play “telephone”? They usually  resemble a funnel and have little speaker holes in them.  One person says something in one end, while the other listens on their end in another part of the playground to hear the message. 

She also says this when looking through the end of one her paper towel roll telescopes or when investigating how her voice echoes in a setting that allows for it. 

Hellooooooooooooo In Theeeeeeerrre! 

And I think the worst is over for now.  And that feels like a relief.  For now. 

I know the waves of grief are going to knock me off my piece of shipwreck again.  But I hope that in the next year after they do, it won’t all feel like “I got through it”.  But I also wonder if that is just my new reality. 

I have been able to experience joy and pain together.  And my hope is that the pain becomes less and less.  I know it will never go away.  And I know that it will rear it’s ugly head again when anticipated and then again totally out of the blue. 

​​Hellooooooooooooo In Theeeeeeerrre! 

There has been much darkness. There has been much light.  And I’m learning that painful life lesson still.  You can’t have the pain, without the love.  And I won’t lose the love.  I refuse to lose the love. So I have to accept the pain. 

I’m looking forward to what is next.  What does the next year have in store for my own personal growth?  What does the next year have in store for my family?  Now that I’m able to access myself again, I can’t wait to find out.  

And if you want to be free, be free

'Cause there's a million things to be
You know that there are

And if you want to live high, live high
And if you want to live low, live low
'Cause there's a million ways to go
You know that there are

You can do what you want
The opportunity's on
And if you can find a new way
You can do it today
You can make it all true
And you can make it undo
You see, ah ah ah
It's easy, ah ah ah
You only need to know

Well, if you want to say yes, say yes
And if you want to say no, say no
'Cause there's a million ways to go
You know that there are

And if you want to be me, be me
And if you want to be you, be you
'Cause there's a million things to do
You know that there are

You can do what you want
The opportunity's on
And if you can find a new way
You can do it today
You can make it all true
And you can make it undo
You see, ah ah ah
It's easy, ah ah ah
You only need to know

Well, if you want to sing out, sing out
And if you want to be free, be free
'Cause there's a million things to be

You know that there are
You know that there are
You know that there are
You know that there are
You know that there are

~Cat Stevens 

Today we honor your soul Lucy, on the one year anniversary of your freedom.  Thank you for brightening this world and making it better place.  Thank you for watching over your big sister. Thank you for the lessons I’ve already learned from you and for those that are still to come.