Gratitude

This one’s for my sister.


Every inch of my body screamed, "I can't do this again. I need to leave. I can’t handle One. More. Moment.” I felt agitation running through my veins, anxiety rising in my chest. Resentment and anger came bubbling up as I thought of all the families sitting down to their Thanksgiving dinners while I found myself in a room alone with my mom, inside of the assisted living facility we had moved her into two weeks prior. She was downright refusing to get dressed and come with me to join the rest of our family for the meal. Or maybe it was her disease, the PCA, that was refusing to come.

I took a step back and tried to breathe to stop myself from yelling. I wanted to yell all the time, at anything and anyone. At the squirrels who got in my way on the sidewalk, at the aide who should’ve had my mom dressed already, at my kids to put their shoes on. In that moment I wanted to yell at my mom. Then my sister, Dani. “It isn’t fair that you get healthy grandparents”, I would scream. “You get to leave for the holiday and go on date nights with free babysitters and have someone cook for you while here I am, stuck in this room.”

The thing was, I really couldn’t convince my mom to come with me. While I was seeing red inside of my reptilian fight or flight brain, I knew enough to know that I was not mentally in a place where I was going to be able to connect with my mom, get on her level, empathize. Get her dressed so I could be with the rest of my family who were already together, waiting on us. So I called Dani.

Isn’t this what we do as siblings? I would do this to no one else on earth (well, except maybe my husband - sorry babe). I’m so resentful in this moment, I’m letting my emotions get the best of me by attacking my sister in my mind, I know she already feels horribly guilty about leaving me alone to deal with the situation, and I decide to call her?

And, you know what? She answered.

Thinking back on it now, I have tears in my eyes. Tears of deep gratitude for Dani. Put yourself in her shoes for a moment. After months of crisis, I mean crisis every damn day for weeks on end where you are pulled from meetings at work and bedtime with the kids to take care of our mom. Off to the neurologist, the psychiatrist, the ENT. Off to the emergency room. Off to a meeting you’ve been called to with the director of the facility. It is only us. Her and I. We moved her here away from her village and so it is us and only us who are responsible. Dani has finally gotten an opportunity to take a moment to breathe. A few days where she can be with her two little kids and focus on them with her full attention because she knows that even if she gets called she can’t physically come. It’s a huge weight lifted for a few precious days. And I evidently wanted to sabotage it for her.

Not only did she answer the phone, but she answered it free of hostility, even though she had to know it was an SOS call from me before she picked up. We had been answering each other’s calls with, “What happened?” for the past two months. But on Thanksgiving she sounded happy and peaceful when she said hello. Immediately upon hearing her voice I started to relax. I put her on speaker and she spoke to our mom in the way that I wasn’t able. She soothed and listened and comforted. After we hung up, I got mom dressed and off we went. 

For years people have told me, “It’s good that you have your sister.” For a long time, I wanted to respond by saying that having a sister doesn’t make the pain go away, you know. It’s still the hardest thing I’ve ever faced. “You’re reminding me of my sister because you want to create distance between yourself and this hardship I’m in; it’s easier to sugarcoat it with my sister rather than acknowledge the pain, isn’t it?” I wanted to say.

This year though, a deeper level of gratitude than I have ever felt before, came into my life. We have walked through the hardest days together, Dani and I. Facing the depth of this disease together, the stripping away of the woman we both love dearly has bound us together in the most beautiful way. We have chosen, time and again, not to scream at each other. Not to take our pain out on each other. But to support. To be the other person’s person. To love.

Now when people tell me how lucky I am to have my sister I close my eyes and say a prayer. Thank you for Dani. Please keep her safe. Please protect her energy and bring her peace.

This brave person shared her story with me.

Remember the prompt I sent out a few weeks ago: What is one thing that motherhood has taught you this month? Our friend Michelle wrote on the prompt and sent it to me! You guys - this is what I have been asking of you and one of you actually did it - YAY!! Please use Michelle as an example and try it. You don't have to send it to me, but if it's as awesome as I think it will be, I would love to share it. I really hope to add other voices to this newsletter on more of a regular basis. 


Questions by Michelle Small

The other night I saw something that just didn't seem right.  I ask, "What happened today?"  Silence follows.  I ask, "Did this happen at recess?  Who were you with?" She stares at me with her lips as straight as a line and her eyes completely glossed over.  I tell her I love her and I am only trying to help and she holds her hands up to her ears and walks away.  Exhausted, I want to just yell after her “Fine! Forget it!!”  I look down and there is my five year old, laying on the ground incredibly lethargic - an instant sign sickness is coming since he rarely ever is still for more than 20 seconds. 
 
I give my daughter some space for a moment while I try to get my son to get up and put on his pajamas, knowing tomorrow I will likely be taking him to the doctor’s office.  He refuses so I ask him “What hurts?”  “How do you feel?”  “Are you hungry?”  He stretches his arms out and whines, “Momma.  I want momma.”  I give him a hug and then he lays back down.  I let him lay there while I go search for the thermometer and check on my daughter. She is in tears and yells, “Don’t ask me anymore questions!!!  It is too hard to talk about it!!!”  

Reflection on my quest to help them both, I am realizing that asking a bunch of questions - a strategy that always helps me and also my students with their comprehension - is not always helpful.  In motherhood, I am learning, sometimes silence can produce the answers.  Sitting quietly with my son after taking his temperature (he didn’t have one at the time), I was able to check in with my gut feeling to know he needed to go to the doctor (he wound up having a high fever the next morning and an inflamed throat that needed medicine).  Since the blow up with my daughter, I have stopped the constant peppering of questions and wait for her to cue me she is ready to talk.  Amazingly, last night, she asked if she could read to me a part from a book she was reading.  This book is one I actually recommended to her and, for the first time EVER, she took me up on the recommendation, AND now she wants to show me a part she likes and connects with.  I feel like I finally have a win.  

I learn and grow by questioning, but I am learning that isn’t how my kids necessarily learn or grow.  It also does not seem to be a method to helps them to open up to me about what is going on in their lives.  For my kids, the more questions I ask, the more unwilling to share they become.  My daughter gets tense and stressed and my son just flat out ignores me and/or dances around (sometimes with underwear on his head) repeating my question or words in a sing song voice and refusing to answer them (He is feeling better today!).  

It is SO hard for me, but I am learning to look for those opportunities to sit in silence or just side by side, waiting for them to be ready to share.  I won't stop asking questions, but I will start pausing more before I do.  It will help me decide if the questions I am bombarding them with will produce the answers I am hoping for.   

A Frowning Smile

I've had a rough week full of disconnection with my nine year old daughter. Today I noticed she was getting dressed without prodding, brushing her hair and doing what she needed to do to get out the door on time for school. I was so proud of her and she seemed so beautiful and precious to me in that moment. I made eye contact with her and smiled. Not a huge wide-toothed smile, but I felt my facial muscles move into the place they go when I smile.

She stopped in her tracks when she saw me staring at her and said, "What?" Let's just say I sensed some venom in her voice.

I just love you and I'm proud of you.

Then why are you giving me that look?

I'm smiling at you babe.

That's a frown trying to be a smile.

Here I was showing up with the absolute best of intentions trying to connect and she still didn't see it this way. How bad must it feel when I'm reacting out of a place of anger or irritation? It was a reminder of perception and how much our kids feed off of our energy. We have to literally ask them the question to make sure we are on the same page.

This applies to all relationships in our life. With our partner, at work, with our friends. Unless we have the courage to check in, "You seem a bit off today, did I say something that upset you?" we could be two ships sailing on different rivers, in opposite directions.

I wrote today's post in response to a podcast interview question from the amazing Maria Alcoke of The Engine Mom podcast. Use this question that Maria asks all her guests as your writing prompt for this week:

What is one thing that motherhood has taught you this month?

For those of you without kids, simply substitute partnership or yoga or nature or life for "motherhood". I’d love to read your response - email it to me!

My Title

I posed the question: In the story of your life, what is the title of the chapter on Mom? Here is mine.

my title.png

For most of my life, my mom was my best friend, closest confidante and strongest advocate. After dementia entered our lives eight years ago, this relationship began to shift. Slowly at first. Almost imperceptible changes. Strange handwriting began showing up on the kids' birthday cards. She stopped driving at night. Once a phenomenal cook and home entertainer, she stopped taking down her favorite recipe books and spending days in the kitchen. 

You know how you can't remember when your three year old was an infant? And then when she's six you can't remember three? Dementia is like that too. It's hard to remember what my mom was like before something strange and unknown took hold of her brain. 

My therapist gave me a tool that's really helped. She asked me to find mementos of the "before" days to remind me of who she was as a person and a mom. I dug out an old card she sent to me in college. It was full of sweet love and support. Full confidence in me. The familiar and cozy feeling of being taken care of flooded me. That comfort that someone believes in you no matter how many stumbles. 

This was the place I brought myself back to in order to come up with this title of my life story chapter on my mom. Distilled, this is what she taught me. She had no family near the town where we lived. Instead, she built her family with friends. She cooked for them, she took care of their kids, she spent time with them, regularly. And when things got hard, she didn't hesitate. Two of her best friends were diagnosed with cancer and died in their forties, when I was in high school. My mom didn't wonder what to say or how to take care of them. She marched herself into their homes to check on her girlfriends and to see what help their kids needed.

She taught me that showing up as yourself is love. 

Marathon Monday

On April 16th my husband, Curt, ran the Boston Marathon. Throughout the entire training process, every time I talked about the marathon I said "we," as in both Curt and me, as if I was running the marathon too. It just came out. I am not a runner and in fact I can't quite stand running. I think it's because when our partners decide to commit to something big, we feel a stake in it too. We want it badly for the person we love and we often have a significant shift in our daily schedules too.

Because he was running for a charity, Team Frannie of the Ethan Lindberg Foundation, this added to my feelings of connectedness to the race. I wanted to give back to this organization that had been alongside us since my son Griffin was diagnosed in utero with congenital heart disease (CHD) seven years ago. 

Also, the lives of several children who had died of CHD were integrally woven into this race: Ari, Chase, Ethan, Frannie. Their moms, dads, and siblings would all be present on race day. 

On race day, Curt got up early and headed out. The weather was as bad as predicted. The kids and I sat in the hotel restaurant watching the elite runners and wheelchair athletes at the starting line.  The rain was already gushing in torrents over the hotel entrance, soaking passersby. I was anxious about Curt having to stand in the wet and cold for hours before he started. I was anxious about all of the runners having trained so intensely to show up for this weather. Then they did a tribute on tv to the five year anniversary of the Boston Marathon bombing and my kids starting asking what had happened. Yes, I was anxious about that too.

We headed up to the hotel pool and I watched Carly and Griffin play. My heart was hurting, confused and joyful. Hurting for the pain that CHD has caused these families and my own. Confused about how some kids make it and other kids don't. Joyful that we had the once in a lifetime opportunity to be in Boston that day and participate, in our own way, in the race. 

A little while later, we arrived downtown. We stepped out of the uber and within ten second we were drenched. The kids starting complaining immediately but we went up to Beacon St. to watch the elite women pass. At mile 25, they were almost done. 

We stayed inside for a while, keeping warm. But, I had only one chance to see Curt and I didn't want to miss him. So, the Team Frannie crew headed out to Beacon St. Again, fully drenched within seconds. The rain was coming in sheets, sideways. By now the runners were slowing down. Many were walking. Several were already wrapped in the silver thermal blankets they normally receive at the end. Some were in between two runners who had their arms wrapped around the middle runner, almost carrying the person along. A double amputee made his way by on his prosthetics. I could see the pain in his clenched face.

About 15 minutes before we expected Curt, I took my hand out of my glove and held my phone, with the camera open. I wanted to capture the moment on video. This meant that my hand and arm were sopping wet and frozen and that I couldn't follow Curt on the tracker app because I wanted to keep the camera ready. 

The 15 minutes came and went. By this time Griffin was crying hysterically. He was freezing and wanted to go inside. Carly was ready to give up on seeing Daddy too. I couldn't hug them because we were too wet and I was holding an umbrella and the Team Frannie sign we made and the phone. I tried picking Griffin up and putting the umbrella down but that made things worse. 

I needed to make a decision and quick. Should I let them go inside and get warm? My mother's instinct said yes, especially for Griffin whose health could really be affected by this weather. But my human instinct said no. Their dad had undergone a grueling training for this day. The families standing next to me had undergone weeks and months of hospitals stays for their sick children. And, even if they didn't feel it right then, my kids would always want to have the memory of seeing their dad at mile 25 of the Boston Marathon. So we stayed out.

I started wondering if we missed him. What is he wearing? the Team Frannie supporters wanted to know. I didn't know or couldn't remember, the anxiety getting the best of me by this point. Is Griffin ok? they asked. I wasn't sure.

Finally, we spotted him through the driving rain. He looked fantastic - a big smile on his face and a great energy in his stride. I instantly felt ten pounds lighter. The kids switched from crying to cheering. I pushed the red video button on my outstretched hand. 

He gave us a each a kiss and then he was gone. I looked at my phone and realized it hadn't recorded the moment. I tried again as he ran off towards Boylston St, the final stretch the runners dream of. 


All the struggle and pain and beauty and transformation of life was happening right in front of us that day. Feeling so many emotions at the same time IS life. I was filled with pride and love as I watched Curt run past. Then I turned to take the kids in and caught the eye of my friend Jessica, mom of Ethan, and became filled with sadness for the loss of his life. 

Life is not black and white. It's not either or. It's messy and gray, confused and beautiful. I'm lucky to be here, right in the middle of it.

Help me decide!

I'm squirreled away hard at work getting my class content into a new format for my online class coming this spring! I'm making great progress and would love your insight. 

Which of these versions do you like best for the title slide? Let me know in the comments. Find out more about class here. Hope to see you there in a couple of weeks.