hush little baby

I am in the middle of a nine day stretch on my own while Jay travels for work. ¬†As much as we all miss him and look forward to his morning and nightly calls, I am really happy that I can do this again. ¬†You see, Jay’s job has always involved travel and the boys are used to him “flying” to meetings in other countries. ¬†Over the past year my parents have come down when Jay travels and we are appreciative of the help. ¬†But, this week I wanted to do it on my own. ¬†This is a slice of our old normal that I used to be frustrated about and this week am simply loving… in a semi-exhausted way.

When Jay travels we haul the little trundle bed mattress into the master bedroom and the boys alternate sleeping in the big bed and the little bed on the floor below. ¬† We fall asleep together talking in the dark about basketball, frogs and the country of Chad, which Bennett told me is also a river. Giggles. ¬†It’s a sleepover every night. ¬†I love it and I love that they do too. ¬†After they close their eyes I¬†read late into the night as I listen to them breath and dream. ¬†Some nights I¬†just stare at them in love.

I hold them close and whisper how much I love them. ¬†Hoping these words will sink deep into their sub conscience. ¬†Locked away in the deepest part of their being to become something they feel in their soul without having to actually hear. ¬†I love you with all my heart and all my soul… forever.

Last night Bennett woke up with a night terror. ¬†You know, when they cry out with their eyes open but they aren’t really there. He was sobbing and confused. ¬†I held his shaking body close and sang “Hush little Baby” ¬†like I did when he was tiny. ¬†His body relaxed in my arms and he held my hand as his blank eyes closed and the calm breathing of sleep returned. ¬†I held him until my arm fell asleep- whispering how much I loved him over and over and over. ¬† Like all parents,¬†I can’t stand to see our kids sad or hurt. As I held him last night I was sick to my stomach thinking about how this damn cancer was going to bring sadness we can’t hush. ¬†¬†And that one day I am going to cause my sweet boy this same kind of out of body sadness by leaving this earth. ¬†¬† Squeeze tighter. ¬†Hold on to right now.

When I think about the sadness cancer is going to cause my three boys that’s when I get the maddest of all. ¬†That’s when I get really pissed off. ¬† When I think about what it has already robbed from our family and what it is going to take away from us in the future I am infuriated. ¬†But, I have to let go of the anger and the pain of tomorrow before it consumes me with paralyzing fear. ¬†I¬†hold on to today. ¬†Literally hold on… to the ones I love, to the leash as I run with our dog keeper, I hold on to the “crow pose” in yoga. “Hold on!” I yell at the boys¬†when I just want one private moment in the bathroom. ¬†Holding on for dear life. ¬†¬† Clinging so tight to my dear life that I don’t take one moment, day or¬†week on my own with the boys for granted.

Hush little baby. ¬†Know that mama is here… For now my physical hug surrounds you, but you have my heart and soul forever.

Hold on.
Lara

One year and counting…

The median survival for metastatic breast cancer is 3 years.  I have probably been living with the disease for awhile since my tumor was so big when discovered, but by the books it has now been one year since my diagnosis.  Sit with that for a moment.  1 year into a three year median survival.

Unfair.

I look at pictures on facebook of friends who are no longer with us because of this damn disease.  I look at pictures of them 2 years before they died.  They are beautiful, radiant. happy.

So as I live in the moment and laugh and consume myself with all the amazing “normalness”¬†of our life these days. ¬†I drive my kids to school, sports and playdates.¬†¬†I move my body every day – yoga, trail running, bootcamp. ¬†I love how strong my body feels right now and how I can push myself to get stronger. ¬†I love how I feel when I hold a backbend in yoga. ¬†But, as the blood rushes to my head and my arms shake, I wonder how long I will be able to do this…

54b9ac79f02065e36e0e2592I found myself shopping and thinking about house projects again. ¬†Every day things I used to love, but haven’t seen any point to for the past year. ¬†It’s fun to be “normal” and happy. But I think about that three year statistic as I walk around Anthropologie and I think about who would look cute in the dress I buy so it doesn’t go to waste.

Cancer isn’t right in front of my face all day. ¬†Before it was all I could see. ¬†Now it sits in my peripheral vision… always looming there, but not in my face.

I’m grateful to be able to laugh and plan and do everything I want to physically. ¬†Some people with this disease don’t have that chance. ¬†So, I face down the fear of what is to come every day. ¬†I focus on the simple joys of our beautiful life. ¬†I look back on all we faced this past year and am so thankful to be where we are today. ¬†I would give anything to make it all go away and to be able to think about my children’s future without fear. ¬†To dream again about all the plans jay and I have for the future.

I read a quote this week that I have been focused on: “Fear doesn’t prevent death. ¬†It prevents life.”
So, I live and love and laugh.

For our lives are made up of each day and each moment. ¬†I don’t know if I have 2 years or 10 years… but I know I have the day before me. ¬†So do each of you.
live each day with intention and purpose.

one year and counting… on many more laughs, adventures and love.
Lara

Looking back, Looking forward…

6 years ago we threw a New Years Eve party to mark the end of the year “I had cancer” and celebrate all our hopes and dreams for 2009. ¬†It was the happiest New Year of my life. ¬†I remember feeling so overwhelmed with gratefulness and so eager to see what the future held for our little family. ¬†I remember our new home brimming with friends and laughter. ¬†I was on top of the world. ¬†Of course, the year that followed was not full of pure joy. We lost Jay’s dad, Jay was re-located to Louisville, KY, we had to move from that amazing new home and say good-bye to dear friends. ¬†Despite the tears,¬†we faced these challenges with hope for the future. ¬†Knowing we would make the best of whatever comes our way – just as we always have. And, we did. ¬†Louisville, KY ended up being a wonderful place to call home. ¬†We found another great house and made new friends while maintaining special friendships. We found a way to keep Jay’s dad’s memory alive by continuing traditions he loved and telling the kids stories of him regularly. ¬†Life continued in beautiful, hopeful ways.

54a6a63bf02065253f49a422Fast forward to New Years Eve 2015. ¬†On a night I usually love – a night of reflecting and setting goals and celebrating blessings. ¬†Jay poured me a delicious glass of my favorite champagne and I¬†sat in fear of what the year ahead held. ¬†I couldn’t shake it. ¬†I told myself turning the calendar to 2015 was going to be a turning point to allow myself to feel the same relief and joy and excitement I had when I “beat” breast cancer the first time. ¬†But, the relief didn’t come. ¬†The anxiety, sadness and fear of the future held so tight that it was hard to breath. ¬†I have stage 4 breast cancer. ¬†There is no cure. ¬†Time is my biggest gift, yet each day that passes also means I am closer to the next progression, the next drug failing, the next bad news. ¬†Shake it! ¬†Shake it! Focus on right now. ¬†Focus on the joys of life today. ¬†Many days I can do this. ¬†But, honestly, not all the time… life has changed for us. ¬†Permanently.

Yet, life is great for us right now. ¬†We surprised the kids on Christmas Day with a box within a box, within 54a6a64ba589b41018ced81ba box holding clues that lead to a Christmas day surprise adventure to Florida complete with Disney, fishing and the beach. As we walked to our plane on Christmas afternoon Bennett grabbed my hand and beamed from ear to ear. ¬†I looked down at his freckled face with pure joy.¬†Unfortunately we all had a cold¬†at one point on the trip. ¬†Mine coming first a couple days before Christmas and lasting the whole trip. ¬†But, we didn’t let that deter us. ¬†We filled our days with fun and were all asleep by 8:00 most nights. ¬† We had great seats to see Cirque de Soleil in Downtown Disney and Wills slept below the death defying trampoline show – exhausted. ¬†But, its hard to let the “crud” keep you down in the warm sunshine. ¬†We went on two fishing charter trips – caught 5 new species (the boys have a running list). ¬†Ended our trip on the beach for several days. ¬†We sat on an empty¬†beach catching waves and pompano. ¬† We were a family on vacation – dealing with colds. ¬†Not a family living with stage 4 breast cancer. ¬†It was amazing!

54a6a643a689b453399b7ca9As we were going through security ¬†on our way home¬†(and commenting on how smoothly it was going) Wills’ bag got stuck in the xray machine. ¬†People were scrambling around- we weren’t sure what was going on. ¬†Suddenly several “important” security guards came over to us concerned. ¬†At that same moment I remembered the souvenir Wills had from disney… an indiana jones pistol. ¬†In his backpack. Long story short- don’t¬†bring a toy gun on an airplane. ¬†The gun was confiscated, we were questioned and sent back through the now insanely long security line… luckily still making our flight. Instead of freaking out, we all kept our calm. ¬†We told the kids¬†that we¬†all get bad news and are put in frustrating circumstances. ¬†Its what you do with the situation that is a true test of character. ¬†Getting upset and stressing out only makes the situation harder… ¬†They are going to learn this lesson repeatedly in their young lives. ¬†As we waited in the long¬†line explaining this lesson, I just kept looking at their tired eyes and wishing airport security lines were the worst of their worries…

54a6a633a589b4861cced309Now here we are, welcoming in a New Year and I sit in fear. ¬†Fear the persistent pain in my back is a new tumor that didn’t show up on the PET scan. ¬†A friend of mine recently had this happen. ¬†Her clear scan didn’t bring relief and pain continued so she requested an MRI which revealed new cancer growth too small for PET to detect. ¬†I plan to ask my doctor about this at my next appointment. ¬†Years of cancer teach you how to listen to your body and mine doesn’t feel right.

Yet, on New Years Day Team Mac went for a hike in the sunshine. ¬†The boys threw rocks on the frozen streams for an hour, we made obstacle courses from fallen logs and tried our agility on our own parkour course… (insert hilarious laughter at me trying to shimmy up a tree). ¬†When we got in the car to drive home I decided to run home instead and spent the next hour navigating the muddy trails- winding my way home on an intentionally indirect route. ¬† The rest of the day involved an insane amount of football, nacho average nachos and family soccer game. ¬†By the evening I was so sore a warm bath was my only relief, but I was happy.

Yet, as I laid in the warm epsom salts I wondered how long I would be able to keep up with “team mac” – how long I would be able to keep doing the things i love. ¬†Keep being the mom I want to be. ¬†The mom who climbs trees, balances on logs and chases her boys around the woods. ¬†The fear slipped over me like a new layer of skin and the paranoia, sadness and fear took hold of the joys of hours earlier.

This is the tedious balance of life with stage 4 breast cancer. ¬†Joys and gratefulness / fears and paranoia. ¬† I54a6a6258b5cd3181a2afedb wish turning the calendar to 2015 meant I had found a way to rise above the worries. ¬†I wish I was writing a post about hope and fresh starts and facing my fears with determination alone. ¬†That I knew 2015 would hold a miracle of good health. Of course, all these feelings are within me, yet they are mixed with sadness and anger. ¬†That’s just the ugly truth.

As I look back I am overwhelmed with thankfulness for our beautiful life. ¬†As I look forward I know there is more beauty in store for us. ¬†Our story isn’t done YET!¬† I didn’t choose this awful balancing act nor would I wish this journey for anyone. ¬†But, it is the path set before us and we will face it with joy¬†and fear, prepared for¬†bad news and good news.

Thank you for your encouragement and support on our journey. ¬†This is a place for me to reflect and express my feelings and it means a lot to me that you are interested. I wish you and your family a wonderful¬†2015- Not a year free of hard times… that’s not reality. ¬†But a year full of¬†resolve to face the hard times with patience and determination. ¬†And clarity to see the beauty in life especially when things aren’t¬†wonderful.

And always, always hope.
Lara

Face of Hope, January 2015 – Jessica (New York, NY)

1. How did you become connected with Hope Scarves?

I have a community page on Facebook called ‚ÄúTeam Jessica Wilt‚ÄĚ and saw a Hope Scarves ‚ÄúFaces of Hope‚ÄĚ Facebook post featuring a young dancer named Maggie that caught my attention. I‚Äôm a dancer too, fighting bone cancer, and was really inspired by Maggie‚Äôs story.

2. If you received a scarf and story please share how this impacted your healing journey.

After learning about Hope Scarves, I requested a scarf of my own. A few weeks later, I received this beautifully wrapped package. Inside was a lovely patterned scarf with colors of blue and purple ‚Äď my favorite! The included note said a dancer in California had survived breast cancer wearing this scarf during her treatment. It warmed my heart to receive a scarf worn by a fellow dancer and cancer survivor!

I feel beautiful when I wear my Hope Scarf and receive so many compliments. I’m not only honoring the dancer who wore it before me, but it’s a daily reminder she won her fight with cancer and I am winning mine. I look forward to that moment when I’m able to pass this scarf onto another who needs it more than me.

3. What are the things that provide hope and strength to you throughout your battle?

When I first heard the ‚ÄúC‚ÄĚ word I decided I had two choices: I could be angry and depressed feeling sorry for myself, or I could fight cancer‚Äôs butt with positive energy and a giant smile. Outside of my own personal strength and determination, I have been blessed to have an amazing community of support that surrounds me every day with relentless love, kindness and prayers.

I am also fortunate to have an awesome medical team at The Ohio State University’s James Cancer Hospital who are not only saving my life, but are treating me with great care and compassion every step of the way.

4. Where are you currently on your cancer journey? Tell us how you are living life over cancer.

I was living in New York City and had been misdiagnosed for over a month with acute sciatica. After reaching a point where I was in severe pain and could no longer walk, my parents in Ohio flew me home in July where a tumor on my right femur was quickly discovered. I was formally diagnosed with Ewing’s Sarcoma, a rare form of bone cancer, and immediately began aggressive chemotherapy. I have a few more chemo treatments left (out of a total of fourteen), then will begin six weeks of radiation in February 2015.

Right now, cancer is my life. But I remind myself I’m getting stronger every day. This experience is just a bump in the road that will soon pass. I can’t give up the fight even on days when I feel miserable, or cancer will win. My family and friends keep my spirits lifted and I try to stay focused on visualizing that moment when I’m back in NYC cancer-free. I’m so lucky there’s light at the end of my cancer story РI have so much more life I want to live!

5. What do you wish other people knew about Hope Scarves?

There are many brave souls out there today fighting cancer, each with a powerful story to tell. For me, wearing my Hope Scarf is a symbol of strength and beauty. I wish every cancer survivor had the same opportunity I’ve been enjoying and will continue to spread the word about Hope Scarves to others.

6. What would you tell someone who is thinking about sending a Hope Scarf to a friend battling cancer?

The physical, emotional and spiritual rollercoaster ride that ensues after a cancer diagnosis can be a scary, confusing place. Wearing my Hope Scarf feels like a security blanket of love and warmth. Why not provide someone going through a really challenging cancer experience with a Hope Scarf that makes them feel safe and beautiful too?

7. What is one of your dreams or goals for the future?

My cancer experience has awakened me to a world of possibilities. Before cancer, I had been thinking about writing a memoir of short stories. Cancer has given me the courage to finally ‚Äújust do it‚ÄĚ among other things I‚Äôve been putting off out of fear. Also, early on with my diagnosis I was told I would never dance again. Now that I‚Äôm getting better and my prognosis has improved, I‚Äôm looking forward to that moment when I can put my tap shoes back on and dance with my friends.

8. What is your favorite inspirational quote or words to live by?

‚ÄúBeing true to who we are means carrying our spirit like a candle in the center of our darkness.‚ÄĚ ‚Äď Mark Nepo.

9. If your friends or family had to describe you in two words, what would those be?

I‚Äôm not one who feels comfortable speaking for others, but I hear ‚Äúrelentless‚ÄĚ and ‚Äústrong‚ÄĚ a lot.

10. Please share something you learned having gone through cancer ‚Äď either as a survivor or as having a loved one with cancer.

My cancer diagnosis has provided many awakenings about life and perspective. I realize now, nothing matters more than living in the moment. Do the things you love. Don‚Äôt waste time and say no to the things you don‚Äôt love. Surround yourself with people who love you and give that love back in return. You never know who you might be inspiring. Oh, and smile a lot ‚ėļ.

(Profile picture credit goes to photographer Umar Abbasi)

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