On the job training

For better or worse, parenting does not come with a handbook. It’s mostly on the job training, figuring it out as we go, and trusting our instincts. Zac and I, once again, are fortunate to have reallllllly good role models for parents. They were there for us in every way and loved us deeply. Being an only child, I was the sole focus of love and attention which has translated to a pretty self-assured and confident adult. They believed I was capable of anything so I did, too. My parents never put limits on my mind and helped expand my understanding at every turn. They weren’t perfect, but they were pretty freaking close. Looking back as a mom of 3, I see the value of only having one child in terms of energy. There are many moments of reconciling guilt because someone in my house isn’t getting what they need. This is balanced by looking long term at what we want our family to look like in 5 years, in 10 years- looking at the kind of relationships our kids will have with each other and with us. We are tired parents right now in this short term moment. We have an 8, 5 and 1 year old, but someday we will have an 18, 15, and 11 year old and that is exciting to me.

When life has thrown curve balls and things didn’t go the way it was planned, I learned to trust my instincts. I grew up in a pretty religious home. Both of my parents worked for our church for the first 20 years of my life but I was fortunate in that a religious dogma was never pushed on me. Members were challenged to find what spoke to them within the broad limits of Christianity. This translated to me developing a theology not of a God who sits in heaven answering prayers for some and not for others, but of a still small voice that informs our gut instincts. The idea of  “God’s Plan” has some big flaws in logic and does not bring me comfort. I want no association with a God that allows pain to teach us a lesson. I do believe in “meaning making” but not in suffering as part of a cosmic plan. Sometimes shit just happens.

With this in mind, I have come to trust that still small voice inside. There is a scene in Harry Potter where he drinks a potion and it just directs him in the right direction to meet his goals, save his friends, be a hero. My inner voice is not concerned with my being a hero, but she sure has been right a lot and I’m a better version of myself when I listen. I am more self aware and make decisions based on love and logic and less on fear. Most of the time. I try.

Her Name Means Wisdom

Sophia came into this world at 3:25am on August 15, 2009. I delivered her naturally, without pain medication or medical intervention and it was magical. I am one of those crazy women that enjoy pregnancy and feel most alive in that primal state, which still is bizarre to me. I was never that girl who dreamed of being a mommy. I have no recollection of playing with baby dolls or planning my kid’s names. That just wasn’t me. I was the girl who came home from college one weekend and declared to my parents that I was a lesbian Buddhist. That phase passed and I still look back and smile at that girl who was testing the boundaries of who I was. I wonder what that girl would say if she knew I would be a 30-something married mom of three who drives a minivan and works a boring 9-5. I can only imagine. Because THIS wasn’t in my plan. I can’t say exactly what my plan was but this wasn’t it.

I can recall with ease the first time I touched her. After laboring in the tub for HOURS, it was time to push. I remember being up on the bed and pushing like it was the only thing I was born to do and my doula touching my arm when I was crowning and saying, “take a breath and reach down.” I reached down between my legs and touched her head. This little head that I had dreamed about for months, this soul that I had been connecting with, this baby that was my new focus in life. I loved being pregnant with her. She was 4 days late and near the end I was communicating with her and telling her that it was time to come out. Zac would press his beardy face up against my belly list all of the cool things that they would do if she would JUST come on out. My mom took me to a labyrinth to prepare for childbirth and find some peace and as I was walking my mantra was, “Sophia, it’s time to come out.” When I finally reached the middle she said, “Mom, I’m teaching you patience.”

Zac came into my life at just the right moment it seems, even if I didn’t think so at the time. My favorite and wisest professor said to me after a hard break-up, “the person of your dreams could be right around the corner” and man, he was right. 6 months later I got a text from a random guy using my mom’s phone.

Zac was my mom’s idea, which already was a mark against him. I didn’t want to like a guy that my mom liked so I only agreed to one date after emailing a bit back and forth, but I brought my parents with us on that first date. He walked in just as the Denver Broncos were losing a game they should have won and saw me at my worst right off the bat. I didn’t even acknowledge his presence until I had gone to the bathroom to give myself a pep talk and was climbing of the back of my parent’s car and he leaned over and stuck out his hand. “Hi, I’m Zac.”

Boom. Done. It’s over, folks. We have been inseparable since. Seriously, I quit grad school and moved home to Kansas City, something that was not in my forever plans AT ALL. But, I was in love. I was in love with a kind, gentle, funny kid because, let’s be honest, we were kids. BABIES. He had just turned 22 and I was just 24. We knew we had found something special in each other, an easiness of communication and a common way of approaching life. We both had a “don’t fight it if it’s right” attitude but came about it from a very different place. Zac was a lover and a people-pleaser in a gentle way, quiet but intense love. I was much more extroverted, held nothing in for better or worse- but still held the health of relationships at the core of my framework. We just worked. We didn’t fight, definitely had disagreements but we were generally able to work it out in a quiet way. We came from similar households in the fact that both of our parents were still happily married after 25ish years. We had modeled for us that marriages were partnerships and took work but that it was worth it. I think that is lost sometimes. We hear that marriage is hard and you have to wake up every day and choose to stay married but I don’t always hear that the work is worth the payoff. Our parents showed us that it is.

So, after just under a year of that first date we got engaged. I actually gave him a timeline, because I apparently had plans. I told him to propose by the end of August, I’m not sure what my “or else” was going to be. He pushed it to August 28th but sure enough he got down on one knee in our driveway with my whole village inside the house having a party and asked me to marry him.

2 months later…pregnant. For the record, that was NOT my plan.

The Spiritual Side

Sophi's Nana, Lisa Prosser-Dodds, wrote the following:

We know very clearly Sophi has been lifted in prayer by people of all seven of the world’s major religions and MANY who identify as spiritual rather than religious. Friends, relatives and members of our own faith tradition have expressed publicly on FaceBook and other social media platforms the way in which they are lifting Sophi into the light of love. I found out today many more are out there praying and lifting her quietly, and in their own ways. I was talking with a friend today, a casual friend I see two or three times a year, and not a FB friend of mine. As she shared the following with me, I was once again humbled by the strength of our community…

“Lisa, on the day of Sophi’s surgery, I read Tim’s post about praying for the hands of the surgeon and that touched me deeply. I wrote it down and stuck it in my purse. Every time I opened my purse that day I remembered she was in surgery and prayed for her. I was in constant prayer throughout the day. I don’t think I even realized how deeply I was concerned until I read Tim’s post that it was over and the surgery was successful. It was as if I had been holding my breath all day and finally exhaled. Even though I have never met Sophia in person, she has become a part of my life and changed me in many ways. I appreciate God’s gift of modern medicine and the fight she has taken on with such strength, she is sophistrong.”

With tears in my eyes, I expressed my deepest gratitude for her caring. I also appreciated her expression of something I have struggled with. While I understand and accept the expression “Thank God” or “What a miracle!” a part of me cringes. Don’t misunderstand, I believe the amount of prayer and positive energy raised for Sophi was a definite part of her amazing outcomes, but I find myself wanting to express, "don’t forget the struggle she endures in this journey!" It is not a capricious or fickle God who will find it favorable to heal her, but rather it is the combination of medicine, spiritual uplifting, skills of the surgeon, and most importantly Sophi’s indomitable spirit and strength to do anything that is asked of her along the way.

This is not an easy blog to publish, but I hope you can appreciate the spirit of humble love with which it is written.

Another Story

At Memorial Sloan Kettering, the rooms on the Pediatric floor are shared. This was an adjustment for us, but we ended up meeting some amazing parents and kiddos who we could relate to on a very specific level. I do believe that shared rooms are hard for these kids who are going through so much to then have strangers just a curtain away during times of vulnerability. However, they are resilient!

Sophi's roommate was having a very hard time with a procedure that is generally easy and quick, but this time was hard and taking a long time. Her roommate was in pain and scared, it was hard to listen to. We put headphones on Sophi and had her listen to the Disney Pandora station and hoped it would be over soon for everyone involved.

A few days later I was feeling out if she had any lasting questions/effects from listening to a friend in pain and she said, "Mommy, I prayered for her. I didn't know what to do, and I know a lot of people prayered for me, so I thought it was the right thing to do." 

High Points

We have been home for a few days recovering from our trip, and Sophi is recovering from surgery and round 6 of chemo. Zac and I have returned to work, though admittedly our brains are having a hard time adjusting back into work mode. Today I have been reflecting on the experience. Over the next few days I will share a few of the high points that didn't make it in the general overviews that I wrote every day.

Half of the reason we went to NYC is because of her surgeon, Dr. La Quaglia. We've talked about him a lot, he is the best at what he does. Prior to surgery our interaction with him was professional and to the point, he took the time to help us understand and ask questions, but he was very clear that we were walking into a very serious surgery. Sophi had had a long day prior to our meeting with him and wasn't really interested in connecting with anyone, but she did give him a sticker for his white coat. Post surgery I can't say that the interactions got any "lighter," very to the point and logical, BUT he still had that sticker on his coat. Then, the day after her pathology report came back with amazing news, that all changed. Sophi was in a great mood, chatty and willing to interact with this man she had now seen 5-6 times, and he still had her sticker on. He had his Starbucks in hand and spent 5 minutes letting her show him pictures of her before she lost her hair, and he commented on what a beautiful girl she is. She looked straight at him and asked, "Am I still beautiful?" He raised his eyebrows and smiled and said, "look at your eyes! They haven't changed. You are still a very beautiful little girl." She beamed at him and he turned to leave and said, "Sophi, I'll see you at your wedding."

Tshirts for Everyone!

Hello Team Sophi Strong!

We are so excited to launch another tshirt campaign. Sophi was the driver behind these shirts and our amazing friend, Josh Shipley, made them a reality. Check them out, buy one or three, and SHARE!

The proceeds from this campaign will directly support the family while we are in New York for Sophi's surgery and last round of chemo. Both Zac and Bethany will be off work for the whole month of June, so every shirt counts. 

We are offering a brand new design and the original with a twist. Just click on the image to buy. We hope you love them!

Celebrate the Victories

Today is all about celebrating the victories as they come.

This morning, as I was making smoothies (which we would love some of your favorite recipes!) I heard Sophi sing. I haven't heard her sing since before our first chemo round in early February. It did my heart a lot of good to hear that voice that was so prevalent in our house pre-diagnosis.

Also, today marks our first day with a reduction in blood pressure medication! She went from 4 pills a day to 1! Not only is it great to be putting less medicine in her body, the doc tells us that this is a sign that the tumor is shrinking around her vascular system making it easier for her blood to pump normally! This is a huge boost for us, obviously, as we watch her body fight through the chemo to have a sign that it's working.

We want to send a huge shout out to EL for coming over and playing games with Sophi. Today the stars aligned and allowed her to play with someone her age and it was awesome. He wasn't afraid to be close to her and didn't treat her any differently. It was great!

Lastly, thank you to everyone who's gotten a shirt and shared the page! Below is the link to the order page. We've had a few people say they have had issues with ordering and if you find yourself having issues, please tell us and we will work with you to get one of these FABULOUS shirts :)

https://www.bonfirefunds.com/sophi-strong

Thank you for all the love and support! We love you :)

You Did It!

Late Monday night we launched our Sophi Strong T-shirt campaign on Bonfirefunds.com. Within 24 hours, the fund page had more than 30 shirt orders -- SIX TIMES the minimum number required to get them printed! 

This was a huge moral boost for us and we wanted to thank all of our family, friends and supporters for purchasing and sharing about our Sophi Strong shirts.  In just a few short days, YOU helped raise over $450 for Sophi's medical needs and support. 

The shirt fundraising campaign has exactly one week left for us to raise our goal of selling 100 shirts. Please save the image on this post and post it on your own social media accounts to keep the word going about Sophi and her awesome new shirts! 

Thanks for wearing and sharing the love!

-Team Sophi Strong