Camiece is a beautiful and fierce mama to three little dudes. The third of the bunch was still nestled all snug in her belly when we met for a warm drink early one morning back in November. Though I had heard bits and pieces of her story prior to our interview, nothing had prepared me for the honesty and beauty I would encounter that day.
This is my story, but it’s also our family’s story. It’s specifically the story of my second son, Milo.
There’s not even a concrete beginning. Milo was a normal baby. Around 15 months my husband, DJ, and I were aware of the fact that he wasn’t talking yet and wasn’t eating normal solid foods. He would only eat graham crackers, peanut butter crackers and purees. We knew he had some minor delays but weren’t that concerned initially, but we took it seriously enough to start on the path to early interventions. Qualifying for and acquiring services while a child is under the age of three is relatively easy. We started getting speech services at home. Through that, we eventually began occupational therapy for his issues with eating and a few other sensory issues. We had two therapists coming to our house every week and were hopeful that eventually things would get better. The services did seem to be helping, but in March of 2013 our therapists both sat DJ and I down and discussed with us their concerns that Milo’s issues were more substantial than had been initially assessed. He was a bit of puzzle to the two of them, but at the time they were concerned that he might have some sort of neurological delay, like autism, or something on that spectrum. Those words, that conversation was life shattering at the time. That potential diagnosis was never on our radar prior to that conversation.
I was shocked that anyone would even think that Milo could be autistic. He had gained words through speech therapy and was making small strides in other areas. I had a stereotypical image in my mind of an autistic child banging his head against a wall repeatedly, or behaving in other extreme ways. Milo just didn’t match the stereotypical vision of what a child with a substantial neurological delay might look like. Or at least, that’s what I thought at the time.
In a single moment, the way that we looked at our child completely changed. Now I look back and I’m heart broken at my initial response because he was still my little boy. He was the same boy in that moment that he was before that conversation. But it felt like our whole world came crashing down around us because of our own fear and misconstrued perception of Autism at the time. We felt like everything we had ever hoped for him was just gone. The two months following this life-altering conversation was by far the most difficult season of my life up to that point.
Everyday was a struggle because we were looking at our son through a completely different lens. It was really hard on our marriage, because we dealt with this disruption to our lives in very different ways. DJ was far more resistant to the idea of this diagnosis, not necessarily in denial, but he questioned things more than I did. I was much more devastated at the possibility and what it would hold for our life. But at the same time we came together in a new way because we were both in the midst of this really challenging experience.
We spent the next couple of months waiting for a team of all different types of therapists as well as a neuropsychologist to come to our house and conduct all different types of assessments. The waiting was so challenging especially because I was looking at Milo during that season as though he was no longer the kid he was before. I paid close attention to every thing he did that was different than our first son, Embry. It wasn’t at all fair. Embry is pretty much atypical in the opposite direction of the spectrum. He’s an extremely calm child with a laid back temperament. To compare the two of them wasn’t fair to either of them at the time.
After months of waiting, watching and wrestling we were finally able to complete the evaluation. It was conducted over the course of a couple of weeks. We were hoping at that point for an answer so we could just move forward, process through how much life had shifted and come up with a plan. As the evaluation was still being conducted we spent a lot of time with one of our therapists. She sat us down one night to ask us what we were thinking. She instructed us to stop thinking that Milo was anything other than who he was, and that if we continued to see him in a certain way, shaped by whatever stereotype we were holding, that he would become that image. She told us that every single kid that has any kind of atypical neurological symptoms presents in their own unique way. She knew we needed to see him as simply our child once again. Her words were incredibly helpful in preparing us for what we would gather from the assessment.
We sat down with them, and they didn’t have an answer for us. I wasn’t sure if that was a good sign or a bad sign. I didn’t really know what to think or feel in response to that result. They said that they didn’t think that he had Autism but that he was neurologically atypical and they didn’t exactly know what that meant. He was still not considered “normal” in the eyes of a medical or neurological expert, but he wasn’t Autistic. We were informed that we would eventually have to get him re-evaluated a few years down the road. Milo was only 2.5 at the time and kids with Autism typically tend to be about a third of the way behind other children. Such delays are more difficult to measure with younger children.
At 3 years old he ended up loosing services through the state because he no longer qualified for state funded services. He had to be in the bottom 7% to be in the system. I’ve had to be proactive and become his advocate. So even though he didn’t test to be in the bottom 7%, you can still request for your child to be assessed educationally. We had that done and he still didn’t qualify. For education services you have to be in the bottom 15%. My thought is, if we let go of these kids now only to have problems in four years because of lack of services, why wouldn’t we provide services from the beginning? Why stop services for a kid who had access to them since he was 15 months old? So that continues to be an extremely frustrating aspect of this story in our lives. I continue to advocate and sort through what types of private services we can access to support him.
At this point, between Milo’s therapist and our own understanding of our son, we are leaning toward the possibility of him having a sensory processing disorder. Unfortunately, it is not an official diagnosis yet, but Milo’s symptoms match the criteria being compiled for this potential future diagnosis. That is how we are treating him at this point – taking efforts to balance his brain when it comes to sensory experiences. We have a fairly good understanding of the circumstances or situations that will affect him and then it’s about learning how to balance him out in the midst of such experiences.
What has support looked like for the two of you throughout this journey thus far?
We kept this entire story close to chest while we were in the middle of it all. Honestly, our families probably don’t even know all of the details of what we’ve gone through for the past year. I struggle with worrying that other people will fail to see my son for who he is if they hear any kind of term or label associated with him. If I struggled to see him for who he really was and made all sorts of assumptions about what this would mean for his life, then I imagine others would struggle in the same way.
Their preschool has been a really important part of our support. We see that there are cases far more challenging than ours and then we also see that we’re not the only family going through these challenges. I am able to see now that Milo is going to be able to function in this world. There will be a place for him in this world, and it may not be the place that other kids may be, but there will be a place for him. Just being able to walk into a classroom with children who have all different strengths and weaknesses and being able to interact with them has really added to our sense of hopefulness for Milo.
How has this story impacted your imaginings or fantasies of motherhood?
Motherhood has been so different than what I imagined it would be like. I feel like in some ways I had to grieve the picture or the life that I thought I was going to have. I had to grieve the life I thought my child was going to have. And I’ve learned that those imaginings were all an illusion anyway – because I don’t even know who Milo would have been had he not had these kinds of neurological issues. So this kind of experience causes you to examine your ideals, the ideas you set before your children that you probably never should have had to begin with…even though we all do that. I had to come to terms with the realization that my children will truly write their own stories. And you can help them, as their parents, but you can’t be the one who writes it for them.
Have you noticed any theme in this part of your story that connects to the larger story of your life?
I feel like I’ve had a history of taking care of things all on my own. That’s my personality. I probably rely too little on other people. That’s how I’ve always been. This experience has been hard because I feel like it’s just furthered that reality for me. DJ’s been great about trying to meet me in that place, trying to take things off of my shoulders. Otherwise, I think I’d be completely overwhelmed and I still have days of being overwhelmed for sure.
How has this story impacted your spiritual life, your sense of what life is about, or your relationship with God?
That’s really a shifting picture day by day. I don’t think I’ve ever gone to God as much as I have in the face of this struggle. Who else is going to help us face all of this everyday? Whenever anything happens in life where it completely alters the trajectory of your life, I feel like I don’t have any other choice but to say, “Okay God, where are you taking us?” I have no idea what the hell I’m supposed to do with all of this, or where I’m supposed to go with this, or what it means for the future. So I rely on just trying to trust God every single day. Even if I don’t believe it, I try to say it. I continue to just return to communicating with God all that I’m feeling and that I’m trying to trust even though I know God isn’t a magician and can’t take any of this away. Trusting that even if I don’t know what the meaning is, that God is in the midst of Milo’s story and our story. Really, just that God is hearing me in all of this and helping me to realign myself to the story that is rather than getting lost in whatever I thought the story could have or should have been.
The truth is Milo proves all of my fears wrong each and everyday. He is hilarious. I love him so much. After all that we went through, I look at him now and I see so clearly that he is the baby that I had, he is the baby that I birthed, and he will always be that. Whatever he is supposed to be, he will be. I believe that even on his hardest days. This is the story that is meant to be.
Have you been able to be kind to yourself in this process and the ways you’ve had to grow in the midst of this story?
Over time, it’s been easier for me to accept that there is only so much I can do. DJ has probably been the most instrumental in helping to remind me that I’m doing the best I can and that I’m a great mom. The days that I give myself less grace, I find it in DJ and in the moments where my kids climb up to me and give me a hug.
What do you want others to learn from your story?
I wanted to share our story because I want people to know what can happen when we see through the lens of stereotypes or diagnoses. I wanted to put our story out there incase someone else goes through something similar. And I want people to think before they speak, to really listen and pay attention to the stories all around us.
Lastly, we can’t end without asking you what your favorite drink is?
Anything fruity…alcoholic or not.
Every time I go back to Colorado for a visit, I have a standing date with my friend Colleen Gottlob. We each commit to walking together around “our” lake in Littleton at least once, even if my visit is only for 48 hours. We call it “our” lake, because after Lucy was born, we walked either that lake, or the track right next to it nearly five times every week for almost five years up until I moved to Washington. On those walks, I got to know a lot about Colleen. At 55, she can add grandmother to her other roles of sister, wife, mother, aunt, avid runner, voracious reader, encourager, friend and fan. On my last visit, I asked her if she would be willing to share her story. She seemed surprised because she didn’t know what there was to tell. I reminded her that she is the most loyal, supportive and encouraging person I know and I would like others to get to know her as well. She agreed to let me interview her via email over a couple of week’s time, and this is what transpired.
K: Colleen, recently you told me that you just received the best compliment someone could have ever given you. Tell me what was said and why it was so important.
C: While I was working at an outdoor buying show for Boone Mountain Sports and 32nd West, I went over to say hello to a woman, Susan, whom I only know as an acquaintance. She said she had seen me walking around and been trying to figure out where she knew me from. Even though she couldn’t place where we had met, she said what she remembered about me was my kind face. I think that was a big compliment. It was not about my outfit or my fitness or my shoes. It was about me.
K: So, it seems easy for people to comment on outward appearances, but less on the character of a person. Why do you think that is?
C: Krista, this question is hard. I am going to try to think this through… it is easy to compliment people on their outfit, shoes, purse, new hair cut or color. But, to compliment them about what is on the inside, you would have to know them or have been paying attention to them. That takes some time, generally.
I love the opportunities I have had to meet people in so many situations. Some I may just get to have a conversation with only one time. You have to open yourself to the possibility of maybe getting laughed at or facing a negative reaction or even a bit of heart hurt. I think I have always been willing to risk my heart. And I have received from it. I have just a few couldn’t-ask-for-better-friends. And I am thankful for them every day.
K: I’m so glad that you mentioned the risk required in order to be known by others. How have you calculated that risk? In other words, have you chosen certain people to open up to? I am not sure I am so “open”. What makes someone safe for that risk? Or worthy of it?
C: I don’t think about the risk at all. You never know what some people are going through or their past life experiences. I try not to take things personally. So, I don’t know that I choose anyone. I think they are just where I am. If someone becomes a friend, I am thankful. If not, there will be another person sometime. The ones that become a friend are very important to me. I am very thankful for my close friends. I feel like I love them like a mother lion. I am on their side and love them no matter what.
K: Before I ask you about your mother lion prowess that I have experienced from you, I’m curious about what your risk has afforded you in relationships. You said, “I think I have always been willing to risk my heart. And I have received from it.” Can you give me some examples of what you have received?
C: Well, I received your friendship as a gift and you are one of the most important people in my life.
K: I like how your answers bring me down from the clouds and back to reality. You’re right. Our friendship was a risk that has paid off immensely. Maybe someday I will write about how our friendship came to be. I’m glad you took that risk for me.
I have often struggled with an inability to receive. I have believed that somehow, I’m not worth the attention or the money or the time and effort that others want to spend on me. Thanks for modeling what it looks like to receive goodness from others for whom you have risked your heart. Speaking of modeling…back to your mother lion prowess. I have seen this side of you in action with your kids. One thing you always did that I’ve tried to model is jumping through whatever hoops necessary to just see your girls, even if it was only for five minutes. That simple act showed me how a mother can be her kids’ biggest fan just by making time to see their faces and kiss their cheeks. Where and/or when did you learn how to do that? Who has been a model for you?
C: I think this takes a couple answers. The first one is a man I worked with when I was about 20. I worked for a veterinarian for 7 years from when I was 18-25. I did front desk, tech work and some light bookkeeping. I can’t even remember his name. It might have been Jim. He was one of the techs. Every now and then his young son would come in. I noted that he always made a big effort for his son and would really get down low to hug his child every time he saw him. He mentioned it in passing one time as he was giving his son a big hug. Jim told me his father didn’t hug him and he didn’t want to be the same with his children.
The second part of my answer is that I am not sure. I love my children. I always wanted them to feel special. Every child should feel special by their parents/grandparents. I wanted them to feel like I loved them unconditionally. I do. I am not sure I have felt that a bunch in my life from others. There are only a few that make me feel that way.
I have known some children (roughly the same age as my children) who have lived with me for a time. One of them calls me every mother’s day. I also love them a bunch. I would stick up for any of them and be on their side and hopefully they feel the lion love. There are also a few adults. When they trust that I will (hopefully) never hurt them, they fall into a lion love category for me…
Who was a role model? Possibly, the people that treated my children the same way as I tried to. My oldest daughter’s high school counselor was still calling to check in on my oldest daughter when she was 25. She was someone that I really admire. Another time, the same counselor took care of a problem for a student that was not in her half of the alphabetical part of her kids. I will always remember her for how she went above and beyond. She was also completely trustworthy. My current employers were also a wonderful example. In a time that I was separated, they (among others) took care of some financial things for me and my kids. They also took a lot of care of the many, many young people who worked for them…really cared for them, talked to them, including my youngest child…including many who still come visit them when they are in town.
K: You said that when others trust that you won’t hurt them, they fall into the lion love category. That sounds like part of your protection of them comes when they trust you. That is a brand new thought/concept for me. Can you say a little more? I’d like to understand better.
C: Let me think. I hope they know that I love them. I hope they know that I would not hurt them intentionally. I hope and pray I say the right things and help them make good decisions. I hope I help them with their self-esteem. I hope I am positive. I hope I am discerning. I feel like I am encouraging. Some of them are just in my world for a time – so, I guess it gets to be a bit of a friendship for just a little while.
K: I know our friendship seemed like it might have been for only a little while, but it still stands strong even with my move away from Colorado. So, if you had a chance to share one last piece of advice or thoughts to younger women and/or moms, what would you tell them about friendship.
C: Try to remember that nobody is perfect. We all screw up. Accept your friends despite their faults. Try to remember them, write to them, call them, send them a “thinking of you” text or card. Try to not let time go by without checking in. Pray for them. Make time for them.
K: So, what you’re saying is just…
C: Love them.
K: Again, you bring a simplicity to your encouragement – not denying that loving is challenging, but that nevertheless it can and should be given liberally and without condition. Thank you so much for extending that kind of love and friendship to me. I hope others are inspired to go forward and do the same. And blessed are the ones who get your lion love – they will have their biggest fan in you – indeed, a gift worthy of receiving.
Colleen Gottlob is a mother to two young women and grandmother to one little lady. When she is not working as a merchandise buyer, you can find her running the mountainous trails of Evergreen with her favorite four-legged companion, Tillie. Her favorite drink is iced Bhakti Chai.
*A continuation of Cortney’s journey through a preventative double mastectomy which began in Cortney’s Story: Part 1
What support have you had throughout your decision to have a double mastectomy?
My husband has fought this fight right alongside me. To keep me from the stress and anxiety, he handled all the insurance paperwork and many of the never-ending insurance related phone calls. He also fought (and won) a long legal battle over my insurance’s attempt to not cover my surgery. He has been an empathetic friend, a compassionate caregiver, and an encouraging cheerleader when I needed it. He has campaigned tirelessly to disprove any fear I had about losing any of my beauty after the surgery. It has been equally tough on him to watch me in pain but he is the first to remind me that we are almost done with the process that will hopefully keep me around for a very long time.
My kids have been so understanding and helpful. My 7 year old even learned to change my drains all by himself! My 9 year old daughter has been my loving encourager, by brushing my hair and giving me bible verses to get me through the rough days.
My sister and father have been amazing supporters, caregivers and stand-in “moms” for me. Most importantly, they back me up on my decision, even when people think it seems radical. They understand because they’ve been there. They’ve seen what havoc cancer can wreak on a family and they don’t want that for us. They knew exactly what to do to take care of me because they’ve been through the recovery process before, too many times.
In addition to my family support, I have an incredible community of girlfriends who surrounded me and took care of me. It was a tough thing to allow my friends to do my dirty dishes, fold my laundry, drive me around, and take my kids for days on end. For the first 2 weeks, my amazing friends and family had to do so much for me! My friend created a Care Calendar and arranged two visits per day for me plus someone to bring my family dinner at night. They surprised me with gifts, flowers and recovery supplies when I came home from the hospital and even paid for my house to be professionally cleaned. It was incredible and honestly, necessary. I was so humbled at their thoughtfulness and support. I am so blessed with the friendships God has put in my path.
Lastly, I was linked up with a network of Bright Pink women who had already undergone the surgery. I also had friends and acquaintances who were more than happy to recount their mastectomy stories with lists of things I would need to prepare for. They were amazing. All of the women answered endless questions and late-night emergency texts. They bought me products to prepare me for a more comfortable recovery that were specific to my surgery, like mastectomy pillows, button-up tops and special sports bras. Everyone who has undergone a mastectomy knows the difficulty and discomfort of the process and I was overwhelmed by how helpful everyone was. There is definitely an immediate sisterhood, a bond that you share when you go through something like this. I even had someone I’d never met before contact me and offer to come over and change my drains! I spent hours on the phone with these helpful and encouraging women giving me advice, instructions and sharing their personal stories.
How has this process been on you emotionally, physically, and spiritually?
Emotionally, when you look in the mirror at a chest that is completely bruised, with huge scars and drains and a pain pump still hanging from it, it is shocking. I had two very rough days where I wept at the heaviness of the whole process. However, it wasn’t as bad as I thought it was going to be, at all. I’d like to give God the glory for that, since I’ve had so many loving friends praying for me!
Physically, it sucks! I’m not gonna lie. Even though I sailed through surgery with no problems, I’ve wrestled through some very painful days since then. I know I have uncomfortable days ahead of me but I constantly remind myself that it is only temporary. Although the pain has been great at times, it has never been more than I could bear. God has shown Himself faithful to walk with me and heal me as we take each day, one at a time.
A constant theme that has run throughout each stage of my life is this, “God is faithful. He never changes and He never leaves us to go through it alone.” He knows my story, He is never surprised. A friend reminded me recently that God loves the meaning my life has, its potential, its beauty, ALL of it! Joshua 29 says that “He has plans to give us a hope and a future.” I’m also learning that it is not about me. My story, even though it is mine, is God’s and He will not relent until He is glorified because I gave him my heart a long time ago. His focus/desire is my greatest potential and despite me, He draws me to His greatness and the reality that His will will be done.
God wants to heal us so we can live for Him but sometimes that doesn’t always mean healing our body. Many times I have asked for physical healing for myself or loved ones and instead, my healing comes as peace, patience, or a greater understanding. We conjure up a vague reality of ourselves that we think we can control when we really can’t. I am always drawn back to Jesus when I try to grab ahold of the pen from the writer of my story. He has so much more in store for us than we could ever ask or imagine.
What will you suggest for your daughter as she gets older?
Hopefully by the time she is older we will have a cure, or at least more information about what causes cancer so we can take less drastic preventative measures. Honestly, I can’t even bear the thought of her facing major surgery and possible complications that come with it and someone cutting her precious skin. She actually came into my room one day during my recovery and told me that someday she wants to have the surgery too, if she is also high-risk. Even at 9 years old, she is old enough to weigh the pros and cons. Unfortunately, she has had too much firsthand experience with breast cancer as she has four grandmothers diagnosed. My mother-in-law was diagnosed the day after Kieran was born, so she faces it on both sides of the family.
What do you wish you would have known before the surgery?
I wish I would have known earlier how much help I would need, all day, throughout the day in the first 2 weeks. I didn’t find out until my pre-op appointment that I would need someone to change my drains twice a day, make my lunch, help me get dressed and undressed, wash and dry my hair, take me on walks, etc. I also wish I would have known that I wasn’t going to be able to drive for a month! Everyone heals differently, but they didn’t allow me to drive until I was a full month post-op. Friends had to drive me to the myriad of appointments including post-operation visits for each surgeon, expansions, and physical therapy visits.
I wish I had known about Bright Pink earlier in my journey. I only joined in December of last year and it has been so beneficial to me throughout this process. I don’t think I could have done it without the wisdom, experience and support I’ve received from those girls.
Where are you now in your recovery?
I chose a nipple-sparing, prophylactic double-mastectomy with an expansion phase which means two separate surgeries, four months apart. The first surgery I had in late April removed all my breast tissue and replaced it underneath the muscle with what is called an expander, which is an empty plastic bag that can be inflated. I had 3 separate “fills” of saline into my expanders until they got to be the general size I’m happy with. The expander takes 3 months to stretch out my pectoral muscles to accommodate the eventual implant they will swap it out for in my second surgery in September. The expansions were the most painful part physically and I am through it, so the worst is definitely behind me! Yeah!
I’m also so grateful to have had an opportunity to be reconstructed. Years ago, that wasn’t even an option. I’ve seen some of the “finished products” of reconstruction on women in my Bright Pink group and it really is amazing what surgeons can do now! I was able to keep my nipples and only have scars on the underneath/sides of each breast and some tiny scars where the drains were. The expanders are not very “natural” looking and are super-uncomfortable but they are only temporary, they come out in a few months. Almost there!
What advice would you give another woman in a similar situation as you?
Every woman is different even though our risks are similar. We all have taken different paths to get to this diagnosis and each person’s journey may lead them to different treatment options. For me personally, prevention was better than treatment. I’d rather be proactive than reactive with my health and I can honestly say I have no regrets. I may have possibly prevented my loved ones from experiencing the same tragedy that I went through, and that feels good. I am reminded every morning when I wake up to my loving husband and precious kiddos that I made the right decision. The pain is temporary and it has made me stronger, bolder.
Be your own health advocate…treasure your chest! Even though science has advanced so much in the past few years, tumors still go undiagnosed. Just this year I met a cancer patient at a National Breast Reconstruction Day event who had a mass the doctor said they thought “looked benign” for years in ultrasounds and mammograms, but actually wasn’t. Yeah- that still happens.
Talk to your doctor about seeing a Genetic Counselor. Your counselor will asses your general risk and recommend if you need to be tested for the BRCA gene or not. Knowledge is power and information is beneficial, not burdensome. The more you know about breast cancer, the better equipped you are to live proactively and reduce your risk. You are not alone. Go to http://www.brightpink.org and get information, tools, resources and personal support to help you take the next step toward risk-reduction and early detection! Also, please feel free to use me as a resource. I would love to help anyway I can.
*We are so thankful to Cortney for gifting us with this powerful story. We invite you to engage her story in the comments section below. May all of our reflections and comments bring honor to the beauty of her story.
It is an honor to introduce you to a dear friend Cortney. I first met “Cort” 9 years ago as we were first time moms trying to figure out this new life with a little one. Along with three other first time moms, we formed a playgroup as a way to support each other through the transition into motherhood. Our group of 5 moms with 5 kids has now grown to 5 moms with 14 kids. We still manage to get away for playgroup from time to time, which is now more appropriately titled “Girls Night Out.” We have done life together through many seasons of highs and lows and have experienced great beauty and pain together. We know each others stories well. I vividly remember the day Cort shared she was pregnant with her 2nd and 3rd child…twins! She was beyond excited, yet anxious, and she beamed with that pregnancy glow. Late into her 1st trimester one of the twins she was carrying passed away. The mixed emotions she experienced knowing one twin had lost it’s life so the other could thrive was so heartbreaking yet powerful to watch. Unfortunately, that wasn’t the only loss Cortney has experienced. She has also had to endure the painful death of her mom after a 10 year battle with breast cancer. This is where her story picks up. Please join me as she vulnerably shares her decision to have a preventative double mastectomy a short 4 weeks ago. Here is her truly inspiring story, in her words…
What led to your decision to get a double mastectomy? Can you walk us through the process of that decision?
My mom was diagnosed with stage 3 breast cancer when I was a teenager and fought almost a 10 year battle with it before it finally took her life. Back then, it was very rare to live that long with cancer, so she was a trooper. It started out as a lump in her breast and then metastasized into her bones and eventually into her brain. She underwent so many painful procedures; experimental bone marrow transplants, vertebrae fusing, spinal taps, lung aspirations. Ugh- it was so tough on her. Cancer tortured her physically and the rest of our family emotionally. During the later years of my mom’s sickness, I started struggling with depression when the very real feelings of hopelessness washed over me. We had to stand by helplessly as we watched her become a shell of who she once was. Not fun.
When I entered my thirties, I started getting regular mammograms because of my mom’s young age at diagnosis. My mammograms showed that I too had the same kind of fibrocystic breast tissue that had made my mom’s cancer so difficult to detect. I also had several masses in each breast. Awesome. After a biopsy of one small area, I was told that it was benign, but that there were pre-cancerous calcifications lurking around in there and we really needed to monitor them. This was frustrating to hear as I remembered that years before my mom was diagnosed, she had found a tumor in her breast and her doctor told her, “It looks ok, you just have very fibrocystic breasts. We’ll just monitor it.” Argh! Several years later, both of my grandmother’s were diagnosed with breast cancer too. Both underwent mastectomies but for one grandmother it was too late, she passed away after it metastasized into brain cancer.
Last year my masses grew to the point that I could no longer sleep on my stomach comfortably and I went in for another ultrasound. Once again, they said, “It looks ok, we’ll just monitor it, but you really should go talk to the Genetic Counselor.” After years of putting it off, I went and did a session of genetic counseling where I was diagnosed as high risk due to personal family history (my mother diagnosed early and two grandmothers and a maternal great-grandmother with breast cancer) as well as other factors. I was given a 26+% diagnosis, which means I have over a 1 in 4 chance of developing breast cancer someday. I took the BRCA gene test and tested negative (yeah!) however, this did not affect my high risk diagnosis since I was still placed at the 26+% for developing the cancer in my lifetime. I basically had three options:
1) Monitoring/ surveillance for early detection with a mammogram, MRI, ultrasound and 2 specialist visits per year for the rest of my life. This would cost nearly $2,000 per year even with my insurance.
2) Taking a low-dose of chemotherapy for the rest of my life.
3) A prophylactic (preventative) bilateral mastectomy and possibly reconstruction. I would have no more mammograms for the rest of my life (yeah!).
After struggling through such a painful situation with my mom and then watching both of my grandmothers have double-mastectomies, I really wrestled with the anxiety of the seemingly inevitable diagnosis that many high-risk women like me deal with. I walked into every mammogram, ultrasound or MRI expecting to get a diagnosis of cancer. I dreaded those visits and so did my husband. I also knew that I didn’t really want to keep going back for unending painful biopsies of my growing masses, especially since the number had grown to three by this time. Awesome.
My genetic counselor recommended Bright Pink to me. They are a national non-profit experiential outreach group focusing on the prevention and early detection of breast and ovarian cancer in young women. They provide support for high-risk individuals like myself. I went to some of the events (all by myself) and met some amazingly brave women who are all at various stages on the monitoring and prevention track. I made some great friends among these inspiring women. They helped educate me in the process and give me advice on my situation. This group ended up being invaluable to me through this journey and in my decision making process. I would have been lost without their information, help and support.
My husband and I prayed hard about the decision, asking God to direct us and lead us through the process. Our friends also prayed over us. We asked God to completely close the door if we chose a path that was not for us. I couldn’t ignore my intuition and I quickly came to the decision that I wanted to have the double mastectomy and reconstruction. This way I could be free from the emotional roller coaster of developing the disease that has taken the lives of too many amazing women in my family. I wanted to be able to know that I did what I could to give my two kids and husband the best chance of having me in their world for as long as possible. I want to be able to dance at their weddings and hold my grand babies. Obviously, this is not guaranteed, nothing in life is, but it is a proactive solution to eliminate a very probable outcome.
Tell us about your mom…
She was a light. She was an incredible friend, comforter, encourager, servant, bible study leader and teacher. She was an amazingly gifted mom. She wanted to be nothing else and she was proud of it. I am so proud of her for that. She was extremely gentle yet strong and fiercely protective of her family. She knew Jesus well and walked with Him. She was creative and thoughtful, sacrificial and prayerful. She reminds me of the Proverbs 31 woman: a passage that contains this crazy list of seemingly unattainable virtues of a Godly woman, yet she effortlessly exuded so many of them at once. She bravely faced endless surgeries and scary diagnoses with expectancy that God was going to be glorified through her struggle. She shared her story with the doctors, nurses and everyone she came into contact with.
Every day that passes as a parent I am reminded of how special she was. There are so many ways I wish to be like her. There are so many times throughout the day I wonder how she would react, how she would respond…so many ways I miss my mom. I miss her company. When I became an adult, she became my friend. My heart still aches when I see a mother and daughter out spending time together because I know I’ll never experience that casual closeness of running errands or grabbing lunch with her again. I miss her guidance. She gave the best advice and knew how to speak truth in love. She was an amazing wife. By her example, she taught me how to truly love my husband. I miss her presence in my kids lives. It’s such a tragedy that they will never know her, because she would have had so much love for them. She would have been the first one to offer to hold and rock them to sleep as babies. She would probably be volunteering in their classrooms and planning all of their parties.
It’s been 11 years since her death, and I still can’t believe she’s gone. I felt numb for so long, void of highs and lows. Depression robbed my every effort to grieve my mom’s death in a productive, healthy way. I knew as I was just going through the motions of life that it was wasted time, yet it was so difficult for me to climb my way out of the depression. It took many years before I was finally able to deal with the emotions of loss, confront them, and heal from them. God’s grace has been faithful to cover me during those tough years.
How do you think she would feel about your decision to get a double mastectomy?
I think being supportive would be an understatement. She was an excellent caregiver and she would have probably moved in with us for a month to take care of me and my family! I’m sure she’d also say, ” I wish I would have done that.”
How did your dad respond?
He was excited and a bit relieved. My dad feels that same way my sister and I do, that breast cancer was almost inevitable, so he was extremely supportive. My dad flew out for 5 days to stay with us and help take care of me after my surgery. I’m sure it was difficult emotionally for him to be back in a caretaker role. It probably brought back some painful memories of doing the same things for my mom. I know he enjoyed being helpful though, and he was helpful. I needed that.
Continue reading Cortney’s story in Part 2…
*Cortney is a wife to Ryan, a mama to Kieran (9) and Cale (7) and her favorite drink is Sangria. We are so thankful to Cortney for gifting us with this powerful story. We invite you to engage her story in the comments section below. May all of our reflections and comments bring honor to the beauty of her story.
From the moment this blog idea began swirling around in our heads and in our conversations, I had this particular woman’s story in mind. I first came to know her when she was only a year older than my eldest daughter is at this moment in time. She was just a girl, but even then, her smile was infectious, her beauty undeniable. I still remember the night I saw her face only days after she had learned of the death of her father. I have never known a face that could hold together innocence and suffering as poignantly as her’s did all those years ago. It was one of the first faces that came to my own mind only a month later when the news of the Columbine shooting first began to break. As heartbreaking as those two tragedies proved to be, Margot’s story did not end there.
Let’s begin with your story…
Just over three years ago I began experiencing strange physical symptoms. I would suffer from severe headaches and my hands would hurt. At one point I thought I had carpal tunnel but then realized my symptoms didn’t really match the criteria. I would also have these odd experiences where I would answer the phone at work and I wouldn’t be able to speak or find a word. I felt extremely discombobulated and off balance. That’s when I started to think that maybe I had a brain tumor. That’s what I do sometimes. I go to the worst case scenario in mind. Which is probably connected to my story and the experiences I’ve had.
But then the symptoms would just disappear for awhile and I would return to feeling fine. It was like nothing had ever happened, so I convinced myself that it was nothing. Until the symptoms would return again. And the symptoms were becoming more and more difficult to ignore. Each time the symptoms would return I would do my own internet searches which would always lead me to some kind of scary diagnosis. So once again I would second guess myself and wonder if I was just acting like a hypochondriac.
Then there came a day when I could no longer ignore the symptoms. Both of my legs went numb. I remember talking with my husband and we finally acknowledged that this was something serious and that I needed to get into a doctor right away. I started with my primary care doctor equipped with my internet research. I asked him if he thought I might have Multiple Sclerosis (MS). Initially he did not seem to think that was the case and after several visits and him conducting an MRI on my lumbar spine to see if I had a pinched nerve or anything else that would explain my symptoms, he finally referred me on to a neurologist.
We were only three weeks away from a trip to Italy. I knew that I needed answers before then. So when I called the neurologist’s office and they told me that I wouldn’t be able to get in for a few weeks, I completely broke down over the phone. I just felt really powerless. I knew I needed help at that point, that this was something more serious. Fear was starting to settle in and I needed help. I decided to search online again but this time it was to find a nearby neurologist. So I called up the first one I found and she got me in within the next week.
When I arrived at her office, her first question was completely random, “What year were you born?” I looked at her and responded, “1984…why?” And she simply said, “Because you wrote 1884.” Once again, there it was – it was further evidence of the cognitive impairment I was periodically experiencing. By the end of our first appointment, where I shared my long list of symptoms she indicated that she wanted to further explore a possible MS diagnosis but would need to conduct an MRI to be sure.
So there it was. The months of wondering and denying and thinking came to a halt in that moment and I began to cry. In many ways, my neurologist was a fantastic doctor. She advocated for me to get an MRI the very next day. She took my symptoms seriously and didn’t make me feel like an idiot or a hypochondriac or a crazy person. But on that particular day, her bedside manner left something to be desired. She asked me why I was crying and I replied, “Well…you think I have MS.” I felt like it was a significant diagnosis. She, however, proceeded to tell me it was fine, that it was going to be okay. But it wasn’t okay.
What have you learned from this part of your journey?
It is so isolating when you have a diagnosis of any capacity. People would say, “At least you don’t have cancer.” And I get that. I understand that those kinds of diagnoses are significant life-changers. I’m painfully aware of how serious a cancer diagnosis can be since I lost my stepfather, John, to pancreatic cancer after already having lost my biological father and surviving Columbine. I knew this diagnosis wasn’t going to kill me, and I was thankful for that, but at the same time this wasn’t something insignificant either. MS doesn’t just go away. It is in my body forever.
The majority of people were very compassionate and very kind. But some people would turn it around and somehow make it about them or they’d give me advice about a new diet. Thanks, but no thanks. Or they’d tell me about their great aunt that has MS.
Why do you think people responded that way?
I get it. It’s hard to see people hurting. And it’s hard to not have something to offer. You feel dumb. But all I really wanted was for people to say, “I am walking alongside you.” I didn’t need people to tell me to be thankful for what I had and thankful for it not being something more life-threatening. I’ve learned that it is really hard for all of us to just be quiet, to listen, or to simply respond to the people we see going through pain with a heartfelt, “I’m sorry…this sucks!”
The truth is, I know I’m not the only person who has MS and it’s great knowing that there is a community of people in the world figuring out how to live with this disease. I am not alone. But my story is also unique. I was 27 when I was first diagnosed. I hadn’t even started a family yet and I didn’t know how all of that would be impacted by this disease.
Where are you at in your journey with MS now?
I began treatment right away for a couple of months before becoming pregnant. I went off of treatment during the pregnancy and was unsure of how that would play out, but surprisingly my MS became dormant all on its own throughout the entire pregnancy and remained dormant while I continued to breastfeed for a long time. This was such a significant break for my body. It was such an empowering experience. I became so thankful for what our bodies are actually capable of – I mean, I grew a humungous kid inside of my body. The fact that my body, this body that suffers from MS, could give life and sustain that life is amazing.
This past March, I began to experience a relapse with the MS. The main symptom is numbness throughout one of my arms. There have been some embarrassing moments because of the numbness and me dropping things. It’s a humbling experience. Living with this diagnosis feels different now. I know that I’m going to be okay so the fear doesn’t settle in the same way. It’s still incredibly sad to think about at times. When I see someone walking with a cane, I wonder if that’ll be me someday. That’s the deceiving part about MS – you can feel relatively well, but there can still be so much going on inside your body and you’re unaware and have no real control.
What do you want other people to understand about your story?
Before any of this happened to me I would have thought that people could just “happy themselves” out of their struggles. But that just wasn’t possible and I learned that what I really needed were people who would let me feel whatever I needed to feel. I told my closest girlfriends that I needed them to let me feel this. I just needed to be pissed off. I knew I would eventually be okay, but I needed them to let me feel whatever I was feeling. I wanted to be able to safely ask, “Why God? Why something so hard again? Why do I have to be the person who has this disease?”
At this point in my story, I’m able to look back at all that I’ve been through and have a fuller understanding of how strong of a person I really am. And I know that this strength did not come about from my own doing. It’s who I was created to be. But I needed to be pissed for a period of time in order to get to where I am now. More than anything at this stage of my life, I think of the fullness of my life. I think of how I’ve moved through all of these experiences, how I keep moving through them. Time gives you a different perspective on all of the things you go through.
What have you come to understand about the Divine in the midst of your story?
I have come realize throughout my life, ESPECIALLY with my MS diagnosis, that God is still working me…of course He is. I am moving in a direction to become a person I am proud of. It’s not because I am personally so great, but I think that what I do well is strive everyday to look at life with a fresh set of eyes, not always clear or perfect, but fresh and new. I know I am God’s Beloved Daughter and I do not take that lightly. When I became a Christian there was a constant reminder that life in Christ and through Christ was not always going to be easy, we will struggle but I try hard to place my hope in Him and to not allow the fears of past events or future things dictate how I live and love. But of course, all of this is obviously easier said than done.
When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares. ~Henri Nouwen
*Margot is a wife to David, a mama to Wyatt and her favorite beverage is a vanilla latte with cinnamon powder. We are so thankful for Margot. Her willingness to share her story with us and with all of you is evidence of her courage and vulnerability. We invite you to engage her story in the comments section below. May all of our reflections and comments bring honor to the beauty of her story.