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. 
​
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. 
​
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. 
​
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.