Have you ever felt the winds shift in your direction, in your favor and you think, “oh my gosh, it’s finally my turn, my time!”
The winds changed for our family about a month ago when I got my first positive pregnancy test. Rob and I took a selfie with the tests to memorialize this monumentous occasion. We shared the photo with literally every one of our closest friends, with our family. We were greeted with tears, screaming and excitable cursing in absolute gladness and joy. For all our friends know the struggles we’ve faced, and anyone reading this blog or following on social media knows. Infertility. Adoption. Pediatric stroke. Special needs. Brain surgery. Breast cancer. Finally, redemption.
Sixteen years of marriage had never brought us a positive pregnancy test before. And sure, I’d be right at the cusp of 40 (due date February 16) but it seemed this baby was arriving right on time.
We saw the heartbeat. A life being knit and formed.
And then two weeks later, the winds changed.
The heartbeat was gone. The life that was once forming with great anticipation had come to an abrupt stop.
When did you stop growing, little one? When did you enter Heaven? Did you look back and smile at us?When was the decision made that we’d never meet here on earth? (It was made before I ever entered this earth).
I try hard to catch my breath.
The doctor said, “Take your time,” as he left the room.
Our little selfie with our positive pregnancy sticks will be something we keep close to our hearts, and our friends and family will keep that moment of hope tucked inside their chest too. It was a moment we all collectively celebrated and I will hold dear the celebrations that were lavished onto Rob and I, no matter how short the duration ended up being.
Do you know that song from Hamilton, when Alexander Hamilton and his wife Eliza have to go through the unimaginable?
There are moments that the words don’t reach There is suffering too terrible to name You hold your child as tight as you can And push away the unimaginable The moments when you’re in so deep It feels easier to just swim down.
If you see him in the street, walking by her side Talking by her side, have pity. They are trying to do the unimaginable.
Many things in our life have been unimaginable and because of that we stopped asking why a long time ago, but this surely does beg that question. The grief is layered. A miscarriage after so much struggle. So much suffering. So many tears. Our tattered threads of hope to achieve a pregnancy disintegrated with every passing year. I thought, this is our chance! It felt like a last chance.
The Lord is not cruel. He is redemptive. I believed in my heart and soul this was one of the ways he was redeeming parts of our story. I believed this was our wind shift. But the winds shifted again too quickly and our sails were not prepared.
I always said I’d rather never be pregnant than go through a miscarriage because I didn’t think I’d have it in me to go through it. Yet here we are, faced with another 2 Corinthians situation.
“We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.” – 2 Corinthians 4:8-9
When Reagan was born, we were told to never let her get sick due to her GA-1 diagnosis. Sometimes I feel like the entire world just gave birth to a medically fragile child.
Seven years ago, Rob and I become ultra aware of germs, being out in public, sanitizing, and protecting a baby with no built up immune system. All that striving and need to maintain control still didn’t yield our desired outcome. Reagan had a metabolic crisis, stroke, brain damage, all the most horrible things you could have a nightmare about was our reality.
God has taught me so much since then. He’s shown me how to decipher what is really important, what really matters. Now quarantine is forcing everyone to do that.
It’s so odd to me that even in a pandemic, we are piling more onto our plates, increasing our work loads, our children’s workloads, distracting ourselves, or diving so deep into the news that we become paralyzed. Is this an American thing? Can we not just be?
It took a long time, but I have learned no matter the season, no matter the struggle or triumph, only one thing matters and that’s where we stand with God. Don’t you think that God might be shaking up the entire earth to gain our attention?
Sports are canceled. School is at home. Work is at home. Everyone is together. People are stressed. Jobs are gone. Countries have shut down. People are shutting down.
We almost lost Reagan completely, we still lost a lot. I could barely function. Everything felt meaningless, I did a lot of things to distract me from my new reality. My mind and my emotions were turbulent and the only thing that could ground me and help me was reading God’s word. Talking to God. Fighting with God. Wrestling. Breathing. Learning and realizing that God never makes mistakes.
A pandemic is hard, but if I could offer up what I’ve learned through my life’s own pandemonium here’s what I would say:
Release the things you can’t control (this is a continual process).
Get rid of things that don’t matter.
“Indeed, I count everything as loss because of the surpassing worth of knowing Christ Jesus my Lord. For his sake I have suffered the loss of all things and count them as rubbish, in order that I may gain Christ and be found in him, not having a righteousness of my own that comes from the law, but that which comes through faith in Christ, the righteousness from God that depends on faith—that I may know him and the power of his resurrection, and may share his sufferings, becoming like him in his death.” – Philippians 3:8-10
This pandemic is a marker, an event that will live in the history of the world forever. And we are all experiencing it together. Because of the losses and grief we endured with Reagan’s crisis (and still endure as we enter new milestones and seasons) I have realized that anything we have gone through or will go through that hurts is WORTH it, due to the how much I now know Christ. I HAVE to spend time with Jesus every single morning to make it through the day. And now everyone has time, we’ve got time.
Can I be really honest with you? The Bible is filled with people who really don’t know what the hell they’re doing. They mess up all the time, they cheat, murder, lie, hide, steal, distract themselves with anything they can to not deal with God, and then try to cover it all up in lame human efforts. The people in the Bible are just like us.
James 5:17 says Elijah was a human being, even as we are. FREAKING ELIJAH! He never died and was taken up in a chariot of fire to Heaven. He’s just like us? Really? The rest of the verse says he prayed earnestly. Is that the only difference between the rest of us and Elijah?
Can you be still in this time and listen for what God is wanting to tell you? Can you wait and see what God wants to do? Do you believe that God still has a purpose in a pandemic?
We’ve been separated and sifted, we’re mostly doing life alone, and we’re not made to do life alone. Even now, there’s talk of slowly opening up our country, ahead of expert’s opinions. Are you rushing back into the grind? Are you afraid to go out? Who are you doing life with if you are mostly isolated? What is filling that void, is it God? How are you pandemic’ing?
Release the things you can’t control.
Get rid of things that don’t matter.
Then, be still and and allow God to fight your battles. You will never regret getting to know God, or seeing his plan for your life, I promise. Through this pandemic, we can see how little we actually do control, and how little the things that used to matter actually matter. This pandemic is a perfect time to test whether God is who he says he is. It’s the perfect time to take 10 minutes a day and read a verse, download the Bible app, ask God to reveal what he’s trying to tell you or teach you. And don’t be afraid to tell him how you feel. He wants to talk to you.
In the moments of quiet I’ve had and spent with God, I have been amazed at his continuous revelations of knowledge, wisdom, grace and peace that surpasses anything this pandemic has brought or can bring. I hope this is encouraging to you and challenging. If you want to take me up on this challenge, tag me on IG with the hashtag #10withGodchallenge so I can continue encouraging you.
It’s the end of week one of “distance learning” which I, along with many other families have learned, appears to be full-time public school at home.
A friend of mine alerted me to this article in the Orlando Sentinel where Florida’s current Department of Education commissioner praised Florida schools for their “quick move to online learning.”
One thing I’d like to point out which maybe my open letter failed to clearly convey, and that is that I think our teachers and our schools are AMAZING. Teachers had two weeks max to get curriculum online, learn new platforms, systems and basically figure it out as best as possible. In going this direction, the Florida Department of Education has in one motion devalued our teachers, sending the message that anyone can teach, all you need to do is put the curriculum online and surely everyone can figure out a brand new profession at home, for grades, while working from home (or searching for a new job from home) full time.
The open letter has garnered a lot of attention, and within 24 hours of hitting publish was featured on Fox35 Orlando.
Parents resonate. And that’s because what we are being asked to do is impossible. If you need permission to push back, let me tell you that it’s OK to push back. This is too much on parents, students, teachers, administrators, everyone.
I could truly kiss the teachers who have been bold enough to comment on my open letter or who have messaged me privately.
One “hero teacher” commented: “As teacher, I completely agree with you! But please also know that I am being lectured to about the “optics” of closing schools. We are told that the communities will not tolerate paying teachers to do nothing. So, to justify my pay and my value, I am assigning work…and it breaks my heart. What these kids need right now is not online assignments. Unfortunately, in education, no one listens to teachers.”
The teachers are stuck. They are stuck between an employer who is devaluing them, pleasing the parents, and doing their best to provide education.
Florida Virtual School (FLVS) took years developing their own online curriculum, accrediting it, testing it, training teachers for online learning, then making those teachers shadow veteran online instructors before putting them to work. Combine that with the fact that the teachers, nor the parents of Florida Public Schools have signed up for online learning.
The public school curriculum in its current form has been pushed to the Internet and that’s what has been delivered. That point can not be argued.
In speaking with a FLVS teacher, she stated: “We have curriculum specialists whose only job is developing the curriculum for the courses. It’s built specific to the virtual learner. Our state schools have had no opportunity to do that.”
I’ve spoken to families in Duval County, Brevard County, Orange County, Seminole County and Palm Beach County and almost everyone, with the exception of a few families and several trained teachers who are teaching their own children at home, are completely overwhelmed.
One family I spoke with is having to print and upload documents for their school aged children, luckily they have those capabilities at home, not all do. Other families I spoke to have a range of assignments. I’ve heard from families with children in elementary school close in age to my child with two assignments per day, others have nine assignments per day. Some middle schoolers have close to six hours of assignments and are working until 8 p.m. at night and still aren’t finished. Another child (seven years old) is in tears every day with the pressure she feels. If education is supposed to provide a saving grace of normalcy for our kids it is missing the mark. One mom told me, “If this is going to work, we all need to be on the same page.”
Let’s put the cards on the table, the “optics” aren’t working. It’s clear there is not a leadership and direction from the top. Administrators and teachers have been thrust into this environment without guidance. Parents know that. We can see that.
FLVS has made 100 online courses available to public school. But according to the Orlando Sentinel article linked above: “Local school districts at this point are using their own curriculum and content, rather than FLVS, however, as they now educate their students largely via laptops. So far, the virtual school said three charter schools have asked to use its courses.” Again, having a laptop and doing true virtual learning are two completely different things.
What are the solutions? There are several.
A real solution if this goes on long term could be to actually use FLVS online curriculum as it is based for virtual learning. And teachers can use this time right now to be trained for that, if they choose.
No new material. A friend in Colorado has three school aged boys and the memo they are getting from their school district is no new material will be taught, only enrichment and reinforcement of material already covered. Their county’s message is enjoy time together, reconnect, don’t stress and are empowering teachers to focus on their student’s mental health.
I like this guy’s article. Give them all A’s. Dr. Manuel Rustin is a high school teacher and he makes a whole lot of valid arguments, ending by stating: “As a nation we’ve offered trillions to Wall St. and $1,200 checks to individuals to help deal with this crisis. Are students not facing a crisis, too? Give them their checks. And by checks, I mean A’s.” You have to read the whole article, it’s really good.
Isn’t calling this time summer and starting school early an option? I agree that kids shouldn’t go five months without education, but can we start school in July instead of August? Can we have one week off at Christmas instead of two? (Remember when school was 11 months long that one time? And when we couldn’t find toilet paper, but the Department of Education still wanted us to do school?)
Mauren Downey with The Atlanta Journal Constitution makes a great argument in her article linked above and states, “This is not business as usual and it’s unethical to act as if it could be.”
And that is why I (and many others) are so rightfully up in arms about what is being expected of everyone. Again, I am imploring the Florida Department of Education to do the right thing. Show you value your teachers, show you value your administrators, show you value your students, and show you value parents, along with everyone’s mental health and please stop this madness. Pay the teachers, give everyone a break and instead of winging it, create an actual plan or strategy.
We do not have to do what we’ve always done in education for the last 100 years given what’s going on globally. Real parents are experiencing real problems that rub up against this societal expectation – is anyone thinking about what’s truly appropriate or possible for families? Can we realize that EVERYONE will be starting back at a deficit? Can teachers work within that in a new school year?
In speaking with Tracy Weiss, a life coach and licensed mental health counselor, the conversations in her field surrounding the schooling issue are completely different. “It’s funny because I was just having conversations with people in my field about how taking school off the table is the blessing today’s kids need. They’re so anxious and detached because they’re so busy and expectations are so high. They don’t know how to just “be”, play, explore, self-soothe, problem solve and connect.”
These arguments are valid. What has been forced on to families is full-time public school, at home, during a pandemic. This has been made mandatory, for letter grades, for pass/fail grades and it is not OK. This is not OK.
I’ve really put myself out there with my posts and appearing on the news. As my one good friend who’s an elementary school teacher said, “You’re making friends at every turn, huh?” Probably not. But if you know our family’s story, you know all of the hardships we have endured, that I have always fought for my child, for equal access, for what is true and right. And so I find myself fighting again. God really gave me this personality that physically compels me to do things to impact change and to make people think and to make them notice, and they have noticed.
Thankfully my child’s school and district have noticed, and a more manageable, individualized learning plan is being worked on to best support my child and our family with learning goals that are realistic during this global crisis. But, I know so many others that are continuing to struggle, and that’s why I’m still writing. I am writing to be a voice for those who feel they don’t have a voice or feel their voice doesn’t matter or aren’t sure how to best advocate in this situation because their life has been completely altered in every single way. I’m writing for those who have a fear of being shamed because they are afraid to admit this is too much. I’m writing for those who feel the weight of having another area of their life fall apart and don’t know what to do.
Without being vocal you may not learn what is actually required for your child and your unique situation…and I know that’s the source of frustration for a lot of parents.
So, I’m here to help empower you.
Parents: If you want to try and make a change, this letter has been working for several people who have sent it.
Dear [your county superintendent/principal/teacher or whoever you feel would help address your individual situation best],
I am in agreement with this open letter to the department of education [link here]. My personal challenges are: 1. 2. 3.
I implore you to please reconsider what is required from students, teachers and parents at this time. Keep in mind the enormous mental toll that everyone is already encountering and add to it that assignments are due and grades, tests and quizzes are required. The expectations upon students hasn’t changed but their environment, their educator and the platform has.
Today was our first day of virtual/distance learning. I cried for 30 minutes, all before 10 a.m. I thought there would be “instruction” from our child’s teacher, but I’m learning, that may not be the case.
New concepts will be taught in short video clips from the Internet or other teaching sources, and the bulk of instruction will be coming from parents. You know, in our free time.
Those of us lucky enough to keep our jobs and work remotely, are now supposed to navigate shouldering an abbreviated school day of six hours with our child, while working, while trying to keep our family safe, in a pandemic.
I can’t help but think of parents who are fighting on the front lines, working 12 hours a day to keep the rest of us safe. I’m thinking about the families who have a family member battling cancer or another hard health diagnosis. I’m thinking about the children whose family environments are less safe than the school environment. What about families with multiple children? What about families with children who have special needs, IEPs, 504s and learning disabilities?
After 10 minutes of a google class meet up so my daughter could see all her little friends, I looked at the amount of school work in our virtual classroom and broke down in tears. How are we supposed to do distance learning with a child who has special needs, a paraprofessional, three therapists at school, and every accommodation available in a school setting on her IEP? No matter each family’s unique situation, families are not set up to add another two full time jobs to our responsibilities.
I know that our county school district is just doing what they are required to do from the Florida Department of Education, which I’m sure is getting their recommendations from the Education Department for our country. Did anyone think that maybe a parent’s goals are a lot different than a school’s goals for their child when navigating a GLOBAL pandemic?
My goals are to stay home and healthy. My child, who like many in our world has a compromised immune system, she cannot get sick during this outbreak. We cannot find ourselves in a hospital trying to receive help through an illness. Not to mention that if she were to be exposed to the coronavirus and get sick, it’s possible she might be deemed “not worth saving” since she has disabilities.
This is all too much. It’s too much for everyone. Please don’t add teaching our kids to a laundry list of new requirements every single family now has. It causes undue stress on parents, children and life. We have enough stress that’s been added to our life.
Can the Department of Education realize that:
I didn’t go to school to teach.
My child’s teacher didn’t go to school to run a virtual classroom or learn what’s appropriate for online instruction during a pandemic.
The learning environment is no longer cohesive or structured.
Parents are working from home, trying to keep their current jobs, or find a new job.
Children who are already struggling will find themselves frustrated, lagging behind even more.
There is no reason to add additional anxiety and stress to parents and children during a time of uncertainty.
As parents, we need to provide security and love.
Life lessons are also important, maybe even more so now than meeting educational milestones.
Realize that everyone’s best effort will look much different than in a structured classroom environment.
Hitting the pause button on education for a moment in time is OK.
Allowing our families to use this time to slow down, reconnect, have dinner together, plant a garden, pick flowers, go for a walk, watch movies, make cupcakes or stare at the sky, instead of rushing to complete assignments is important too.
Adding stress to an already impossible situation is not helpful.
I’m sure some families can handle distance learning better than others, but the point of the public school system is to provide a predictable environment for learning.
According to the Department of Education’s website, “ED’s mission is to promote student achievement and preparation for global competitiveness by fostering educational excellence and ensuring equal access.” Right now across our nation, equal access to learning is not happening. Virginia has shut down school for the remainder of the year, Pennsylvania is closed indefinitely. Each state has their own new standards of how to teach: PBS stations in Los Angeles, distance learning, zoom calls, or putting the burden on parents. One thing’s for sure and that is nothing is consistent or equal when it comes to education right now.
Equal access for kids with IEPs, learning accommodations and 504s are not being met. Access can’t be considered equal when the education is falling on families with different home environments, work obligations and access. Yes schools can help bridge those gaps virtually, but they fall short and the gaps remain, crossing county and state lines throughout our nation.
I am imploring the Florida Department of Education, and I guess in a larger sense, the Education Department for our nation to please consider stopping school for the remainder of the school year so we can resume when the health of the people in our nation is no longer in jeopardy. Please allow families to focus on what’s really the most important thing: staying safe and loving one another.
An essential, full-time, working from home business-owner with employees, that is a mom to a special needs child, who’s also a wife to a husband who owns a business that is also considered essential, and who would also like to keep all his employees, and together we would like our family to remain somewhat sane in our planet’s current and shared environment.
I am not an overly anxious person. I do tend to worry, but I’m not prone to anxiety attacks or being paralyzed by fear.
However, this coronavirus has made me freak out a little bit. So I am turning to God’s word to help guide my thoughts and actions.
I started in Philippians 4:6-7 and it states, “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus.”
Ok, let’s unpack that. Don’t be anxious about anything. Don’t be afraid, apprehensive, concerned, distressed, fearful, nervous, scared or uptight about anything. I am definitely guilty of being anxious when I look at all the synonyms for it.
I learned a long time ago, I can’t control everything. Honestly I can’t control very much at all. I’ve learned to let go of A LOT in my own life, personal and business alike. But, I’ve also never been faced by a global pandemic. Should this change what I’ve learned up to this point? Should the facts of coronavirus impact or lessen my faith? No.
But, if I shouldn’t be anxious or think about all of the reports on what coronavirus is doing to our nation, what am I supposed to think about?
Paul continues in Philippians in verse 8 and says, “Finally, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable – if anything is excellent or praiseworthy – think about such things.”
Easier said than done right? I decided to think about what is actually lovely, and not just things like the ocean or pretty flowers, what does God say is lovely? What has God done? What has God told us about what HE thinks of us? If the media is filing our feed and our minds with pandemic, and I agree that’s what we have on our hands, how can I combat the fear? The only thing I know is capable of combating fear is God’s word, and here’s what it says.
Jeremiah 29:11 God knows the plans he has for us, plans to prosper and not harm us, plan to give us a hope and a future.
Psalm 119: 89-92 God’s word is eternal, it stands firm in the Heavens. This set of verses reminds me that no matter what, God lasts, his word lasts and coronavirus can not overtake what is true.
Matthew 10:29-31 Jesus talks about how God takes care of even the sparrows and we are more valuable than them! So do not fear.
Joshua 1:9 My man Joshua is a total gangster. If you have not read Joshua go read it. God commands him over and over to be strong and courageous. “Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” If the coronavirus comes to my house, I will not be afraid, discouraged or anxious because The Lord is with me wherever I go.
Can you imagine if we all took this mindset? Yes, adhere to the CDC guidelines, stay home, practice social distancing, but do not be afraid or discouraged. It’s easy to become afraid and discouraged as soon as you open up the news app on your phone, or turn on the TV or look online. Yes this virus is very real, but like Paul said in Philippians, think about whatever is lovely, admirable and noble. Where do I find these thoughts? In God’s word, and his word is eternal, it has stood the test of time.
Deuteronomy 31:8 “The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.” I’m seeing a theme here.
Romans 8:38-39 Nothing can separate us from God. Add coronavirus to this set of verses and stand confident.
John 3:16 I’m certain we all know this verse, Tim Tebow also made it pretty famous.
If you are struggling through this worldwide pandemic, know that God loves you and finds you extremely valuable.
Psalm 139:13-16 God knit you together. Now THAT is a lovely thought. He knows all your days before even one came to be. Honestly all of Psalm 139 is lovely, you should read it. It is right, pure, lovely, admirable, excellent and you should think about such things. It says God’s thoughts about us outnumber the grains of sand. Wow.
John 14:18God will not leave us as orphans, he will come to us. It’s in times like this that further solidifies my knowledge that we can count on God; He is the only one who can save us, rescue us and comfort us.
John 10:29 Nothing can snatch us out of God’s hands. Not even the coronavirus.
Philippians 1:21 But, if the coronavirus does come to our house, if someone I love does succumb to it, this verse epitomizes the Christian life. To live is Christ, and to die is gain. For those of us who know Jesus, death means eternal life in Heaven, and there’s no greater gain than that.
I know this blog is like a sermon, but the other day I needed to remind myself of what is true and I wrote all of these things down as a reminder. Maybe you or someone you know needs a reminder like I did.
I heard the other day that the word remember is in the Bible more than the word trust. So I looked it up, remember is mentioned 231 times and trust is mentioned 170. And I think that’s because when we remember what God has already done, who he’s proven himself to be, in times of war, in times of famine, in times of uncertainty…if we remember, how he’s rescued those who follow and trust in him then we can know he will do the same for us. We can trust God, and trusting God is part of the building blocks of faith.
2 Corinthians 4:18 So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.
I can see the news of coronavirus, but this virus is temporary, it is not eternal.
So what now?
Proverbs 3:5 Trust in the Lord guys. Don’t lean on your own understanding.
Take this time of social distancing and lean into the one who can give you peace that surpasses your anxiety, your fear, your understanding. Rely on the one who has proven that He is reliable and trustworthy. God has been there for every generation, and He’s here for ours too. Lean into Him.
On December 12, 2019 I rolled up to the hospital, not ready and not completely willing, to check in for surgery.
After being diagnosed with stage zero breast cancer in October, 2019, it felt like surgery was light years away, I even tried calling to move it up, but after Thanksgiving the date flew toward me like a bullet train.
Somewhere between ten years ago when my mom was diagnosed with breast cancer and when I was diagnosed, I made a decision that if I was ever diagnosed with breast cancer, I would get a double mastectomy and reconstructive surgery, with implants. I’d say it every so often to make sure my family knew this would be my decision. And one day, the decision was at my door step. There’s something to be said for making a decision in advance because I knew I was resolute. But even though I knew this was the right choice (for me) and being so grateful to have caught it so early, I also wasn’t prepared for how I’d feel as a result of my decision.
The days leading up to my surgery, I would break down in tears. Sad that my body would be changing, that my girls would be leaving, that I’d probably lose feeling in that area, fear of what it would look like, feel like, terrified of the pain, and how this whole experience would affect my husband and family as it unfolded.
My anesthesiologist, Dr. Luke, prayed for me with my family before my surgery…it was such a small part of the day, but the effects are everlasting. Our interaction was probably 10 minutes out of the entire day, but I’ll never forget how kind that man was to pray for me.
Rob took this picture right before I went back for surgery. You can see the markers on my body, and my surgeon had a whole bunch of markers on my chest too. It’s a surreal feeling to have your body drawn on because those markers are where they will cut, and where they will take hopefully every last cell of cancer. Before going back I just cried and cried. It was happening, there was nothing I could do. I had cancer, I wanted to make sure it was removed from my body completely and I wanted to do everything possible to not have radiation or chemo, and I felt lucky that eliminating chemo or radiation were real possibilities for me.
Unfortunately, it feels as though cancer has affected almost everyone in America in one way or another. And how one determines to fight it is a very personal choice. In this Instagram filtered society we’ve built, I’ve found it common that people want whatever choice is made to have a bow, to have a happy ending, to have no pain or struggle. It just doesn’t exist.
As I’ve been sitting in a lazy boy chair for the past two weeks, thoughts have swirled in my head.
“No one cares.” “People don’t want to hear about this, Anne-Marie.” “Your family is such a downer, how many more bad things can come your way?” “It’s the holidays, don’t blog about how hard of a time you’re having. It’s such a buzzkill.”
It’s true, infertility, medical trauma, special needs, brain surgery and breast cancer are all really hard roads to walk. One is enough, five is like some form of reverse lottery. Why is not a question I ask anymore. I can not control my card deck, only the way I react to it.
The first seven days post surgery I was in so much pain I didn’t think I’d ever be able to move the same again. I’d cry and Rob would pick me up and tell me it was temporary and that he was so sorry and sad I had to go through this. He’s been an incredible trooper taking care of me.
The physical pain is certainly one of the bigger aspects of having a double mastectomy, at the worst it felt like a herd of Charlie horses ravaging my chest cavity, or an entire army on my chest when I’d try to sit up. In the hospital I described my pain as an 8 out of 10, and the only reason I didn’t label it a 10 was in case it got worse!
Physical pain is obvious, but the mental and emotional pain are equal contenders. My confidence was wounded as much as my body. Satan man, he just tries to keep us down any way he can, I know this is only temporary, but it’s really, really hard and I can’t sugar coat it or down play it.
I’ve read a few other breast cancer blogs and stories but for me, they missed conveying the true loss that I’m feeling. Everyone handles this differently, but at the ground zero level of a double mastectomy, it’s one of the hardest things I’ve ever gone through in my life, certainly equal to if not more difficult than brain surgery.
I write this all out for someone who might find this helpful if they’re in this situation themselves; or if you have a friend who has to go through this, you know all the devastating nooks and crannies lurking about. It is crucial to have loved ones, family, friends, children and your spouse to be as accommodating and helpful as possible.
For the first 10 days post-op, Rob set five different alarms on his phone for the five different medications I’m on and would wake up at least twice a night to help me. He emptied the two drains that were stitched to my body, twice a day, and logged how much fluid came out. It’s not glamorous, it’s not supposed to be, it’s sacrificial love. He’s helped me out of my lazy boy countless times in the middle of the night, tucked me in to my lazy boy (which has been my bed since coming home), puts socks on my feet and carefully drapes blankets over me. One night at 4 a.m. he moved a pillow under my arm about 25 times, without complaint, until I felt like it was relieving the stress of my arm just being at my side caused to my chest.
For all the bad and hard things our family has had to go through, I’ve learned what we are made of and the depth of the love my husband has for me. He hasn’t complained, he hasn’t been annoyed, he’s gently helped me with everything I need, and we have actually laughed so much. You know the saying if you don’t laugh you’ll cry, well since I’m already crying it paved the way for more laughter and inside jokes. Since my body is going through its own healing and trauma on the way to an amazing new set of girls, I keep reminding him that I have a great personality.
When I reflect on 2019, the middle part of the year over the summer was hard. Reagan was struggling. While her expressive communication and talking was happening more and more, that was combined with new impulsive behaviors and difficulty handling her emotions when she didn’t get her way. Talking was the gift we have always wanted, but it does come with challenges and new things for her to learn, which is all wonderful, but also a challenge that many parents have to overcome if their child is blessed with the ability to talk.
About a month after school began, I felt like we were getting into a better groove with our family and Reagan. That gave us about a month of security “being in a groove” before this diagnosis. Life constantly changes and our family seems to experience massive swings. In each of the hard seasons of my life that I’ve been privileged enough to see my way through, this truth continues to root itself in my life.
“Look here, you who say, “Today or tomorrow we are going to a certain town and will stay there a year. We will do business there and make a profit.” How do you know what your life will be like tomorrow? Your life is like the morning fog—it’s here a little while, then it’s gone. What you ought to say is, “If the Lord wants us to, we will live and do this or that.” Otherwise you are boasting about your own pretentious plans, and all such boasting is evil.” – James 4:13-16
These words, “How do you know what your life will be like tomorrow?” And comparing our lives to the morning fog, fleeting, puts my struggles into perspective, they are always temporary, around the corner I will find hope, I always have. Always, always, always.
God allows hard things to happen, just like he allows amazing things to happen. And God has regularly given us wisdom when we ask for it and helped us navigate through our pain. Pain is not avoidable and wisdom is not immediate, we’re not perfect, but he is powerful. Years ago the decision I made if faced with breast cancer was made before I learned the humbling truths through our reverse lottery winnings, but this message was a flowing current through each season, “If the Lord wants us to, we will live and do this or that.”
I’ve learned that: 1. I don’t need every answer, I can’t have it anyway. 2. No amount of planning on my part will change God’s plans for my life. 3. It’s OK to cry when my expectations don’t line up with my experience. 4. I know how much I can trust God, and I trust that his plans for my life are higher and better than mine, even though it might not look like that on the surface.
As I close out a wild 2019, I close it knowing that all of my cancer is gone. The pathology was clear and I don’t need radiation or chemo. I’m going into 2020 with a lot of hope. There’s been so much groundwork that has been laid in my personal life that has grown out of tremendous hardship, those roots are solid and I’m ready for big blooms in this new decade. I continue to remain hopeful and cling to our family’s motto: Never backwards. Always forward. Always.
After my appointment with my breast surgeon, Rob and I went to lunch to talk about all the options. Each option isn’t great because they all have their risks.
It’s kind of like when I had brain surgery, the options back then were: 1. If it’s an aneurysm it could burst and you’d likely die OR 2. If it’s a tumor it could grow and make surgery harder. Annnnnnnnd we’re not sure if it’s an aneurysm or tumor, so good luck with your decision!
Saturday At my appointment on Saturday, I got my options and they felt just like my brain surgery options.
Option 1 Lumpectomy and 20ish rounds of radiation. Combined with one of two different medication options. Both are 10 years long. One has a side effect for an increase in uterine cancer and blood clots. I could have my uterus removed if I don’t want to deal with that. I’ve never been pregnant and those words delivered a direct punch to my gut because that means, I never will be. The other pill puts me into menopause but then I’d get a bonus shot every month for 10 years to block catapulting me into menopause.
Option 2 Due to my family history of breast cancer on both sides, along with other kinds of cancer, a double mastectomy is on the table. No pills, no radiation, unless, the pathology shows the cancer got outside of the ducts and then we could be back to option one or chemo (is this for real?). We won’t know if the cancer got outside the ducts until about seven days after surgery when the pathology comes back. The surgeon said if we take this option she doesn’t believe we’ll revert to option one or that I’ll need chemo, but she’s telling me every possible scenario. It’s great we caught it so early, this is where you want to catch it, but the cancer is grade 3 meaning it’s feisty and likes to spread fast.
Option two sounds harder to recover from up front, recurrence is slightly lower, and the side effects from option one don’t exist. But then there’s potential breast implant illnesses (feel free to google this on your own). My surgeon said those were from a particular kind of implant and they aren’t used anymore.
OR, I could basically have a tummy tuck, and take my little stomach pooch from the massive guacamole, margarita and Mexican fiesta I’ve been having for many years, and reconstruct the girls this way. But my surgeon, she’s so kind, she said I don’t have much to work with in my tummy area so she’s not sure if this is a real option for me, and the recovery with this is a lot harder than straight reconstructive surgery.
I have stage zero cancer, because it hasn’t left the ducts where most breast cancer starts. On the grading scale, grade one is lazy and lays on the couch, grade two likes to take a walk and grade three likes to run. The pathology means my cancer cells want to go rogue, and quickly.
The fact that I have cancer felt very real after my Saturday appointment. Writing the sentence, “I have cancer,” is hard. Stage zero made me pretty glad, like I had CancerLite, a miniature version of cancer, but that thought was wrong because there’s no such thing. Learning about the grades, the options, the length of medication required, the side effects and recovery times made me cry a lot. These are hard decisions and time is critically of the essence. Since this is grade three, a surgery of some sort will likely happen within a month.
The weekend was filled with a lot of researching, talking, crying and weighing the options. But clarity came on Monday.
On Monday I got my blood taken for genetic testing of 34 genes and markers (including BRCA 1 & 2) those results should come in a couple of weeks. The reason to test so many genes is because genetic testing has become a foundational tool to help determine the best course of action and there is an association for certain genes with secondary cancers.
Over the weekend I prayed that the right option would be very clear and I discussed with Rob that I was terrified of making the wrong choice. To be honest, I was leaning toward option two, but my meeting with the medical oncologist and radiation oncologist on Monday really solidified the course of action.
The oncologist said not to wait on genetic testing for an answer, to do a double mastectomy with immediate reconstruction as soon as possible. He said since this was caught so early and isn’t invasive yet and combined with my age, he would actually be more concerned with the long term effects of radiation, which I didn’t even think about. Radiation not only affects the area you’re targeting, it will also affect everything in the field of range too. Radiation is also linked to other forms of cancers that won’t appear for 20-30 years, so not only would I experience the short term affects of radiation, but long term effects too. There are certainly so many reasons to use radiation including being in a later stage of cancer, having a more aggressive kind of cancer or being older, all are excellent reasons. But for me, it doesn’t appear to be the right answer. He encouraged me to be done with this in 2019 so that in 2020 I can also heal emotionally and mentally.
Monday provided the clarity I was praying for and a solid course of action to follow. I am very thankful to have caught this so early and hopefully only one surgery will be necessary. But, I know that with cancer things can change quickly and I’ve been told to be prepared for that.
Thank you to the squad of people who have sent messages, texts and who have called, there are SO many of you!! You guys are AWESOME. I am continually asked how can I help? Here’s how: if you’re friends with my husband, check on him. Remember to always check on your “strong” friend. He’s that friend, so please check on him. And thank you to the guys who already have. Our friends are so awesome and I couldn’t ask for a better bunch.
Keep the mood light but also keep it real. Shortly into our marriage I remember moving my sister in law from her extended stay into her new loft downtown. Our family went to the storage unit and there was just so much to move. I kept the mood light, I made up cheers (it’s moving day, it’s moving day…we’re moving out of the extended stay!) complete with moves and high kicks. I wanted to keep everyone’s spirits up as they were lifting heavy boxes. Rob and I joked, that if I’d keep the mood light, he’d kept the workload light. It’s been something funny we’ve said to each other for 15 years now. Cancer is obviously serious, but please don’t be afraid to talk to me or Rob, act like you normally would. But also, I can’t be a champion of vulnerability and expect everyone to only keep things light and fluffy and not be real. If you want to cry, that’s OK. I don’t expect everyone to show how strong they are so I don’t cry too. And maybe that’s a lot to ask, keeping it real when it needs to be and keeping it light when it feels right. But that’s how everyone can help.
Work – Obviously I’m going to talk about work. I can work. I am working. Did you see my shirt in the picture above? I have a great team who has my back. They had it during my brain surgery and they’ll have it during this. Plus, I know that real estate contract like the back of my hand and I can negotiate in my sleep…I mean c’mon, it’s not brain surgery guys. I want you to be confident in using me and continuing to refer business to me.
I feel like I have to address work for a few old reasons and one new reason. When Reagan had her crisis, some people didn’t want to “bother me” with business, some people said I straight up wasn’t capable to handle my new complicated home life and my career. The Mighty featured it on their site and you can read about that here. But I’ve proven time and again that I can handle my life, be vulnerable about it on this blog and social media, and sell real estate full time to support my family. It’s because of my previous experience that I kept my brain surgery to myself until after it was over. But that’s not how we’re supposed to do this life! We’re supposed to be there for one another and we really shouldn’t judge what someone is capable of. I’m here to tell you, I guess for the third time, that I am capable of going through hard things, including breast cancer, and doing my job effectively.
As my friend Rachel put it, I’m a special needs mom, I’ve had brain surgery, I’m beating breast cancer and have sold about $100 million in real estate. What’s your super power?
I know the headline is shocking, but I figured I’d cut to the chase so we can talk about this.
On Wednesday, October 23, I got the results from my breast biopsy and I could tell from the doctor’s voice that this was the voice she used when she was about to deliver a cancer diagnosis to one of her patients. Her tone was calm, steady and comforting. She told me the type of cancer it was (Ductal Carcinoma In Situ) and scheduled two appointments with me before we hung up. I sat in my office staring at the wall.
I told some of my close friends and they were all in shock with similar sentiments: “Not you, Anne-Marie. Not your family. It’s too much. You’ve been through too much.”
We’ve been through a lot. Infertility. Adoption. Special Needs. Brain Surgery. An almost heart surgery. Breast Cancer. And in each and every circumstance God was there. He is here now. His fingerprints are all over our life and anyone who has been reading this blog or following our family’s story for the last six years can see God’s fingerprints too because they are unmistakeable.
I’m actually in pretty good spirits. I’ve had a lot of practice (years of practice) in the arena of receiving a hard diagnosis. I used to think how can people actually be content in really hard situations? Now I know, it’s learned through practice.
“…For I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength.” – Phillipians 4:11-13
Being content in your circumstance is learned and it is acquired through practice. The secret is realizing that putting my faith in God no matter the circumstance is the best decision I can make. And it’s a continual decision because I have feelings. So when I feel like, this isn’t fair I need to remember what I know in my mind, God has me, I can trust him and so I will chose to be content because I have learned how to do this.
Thursday morning when I woke up, I picked up my Streams in the Desert devotional. The opening verse was so obscure that I rolled my eyes, what could a verse talking about a sharp piece of metal have anything to do with my current situation. Well, let me tell you…as I read, the writer talked about how a bar of steel might be worth five dollars, but if it’s a horseshoe it’s worth $10 and then on and on, and how the value is increased the more the metal is work with, so much so that if it’s a spring for a watch, it could be worth $250,000. The more steel is manipulated, the more it is hammered, passed through the fire, and beaten and pounded and polished, the greater the value. Those who suffer most are capable of yielding most and it is through pain that God is getting the most out of us for his glory and the blessing of others.
After reading that, I felt like my stock value started skyrocketing. I’ve been hammered, put in the fire and beaten, given at what life has thrown at my family and me. But, I’m not a lemon; I still feel like a really valuable and shiny piece of jewelry. I know I am.
Obviously I’m not thrilled to have a breast cancer diagnosis at 38. However, I am very glad that it was caught early, so early that the Dr. said it was stage zero, meaning it has not gotten into the lymph nodes and is in the place it originally started. Breast cancer runs in my family on both sides, so I’ve gotten mammograms since my late 20s. Nothing made me suspicious to get a mammogram, I just went in because it’s #breastcancerawareness month and I hadn’t been in a couple years. Thank God I went because I can’t imagine if I went next year at this time. If cancer is in my card deck, I’m so incredibly thankful to be dealing with it right when it appeared.
I don’t know what the next step is, but I’ll learn about all my options in the coming weeks. I’m glad that God prompted me to get in and get tested; and if you’re under 40 and your doctor says you’re too young, find another doctor. There is no good reason to wait!
When I got my latest tattoo in NYC, I wondered what would be the next thing I’d have to trust God with. I just didn’t think that my next test would come within three weeks of my newest tattoo. It’s all good though because in all of it—Jesus, I will trust.
I can’t believe summer 2019 is coming to a close. What a wild adventure our family has gone on; our hearts have been stretched, broken and uplifted. We’ve stepped outside of our comfort zones, seen new things and watched as Reagan’s grit and personality continues to unfold with every new word she’s able to say.
Going to DC was feral and hard, but Wyoming was redemptive. It wasn’t perfect, it wasn’t everything I hoped it would be and imagined in my mind, but it was amazing. My personal goal for the second half of 2019 is to bond more with Reagan and to deepen our relationship. That’s why DC hurt so bad, there were literal slaps in the face. But I had to push through. As a family, we HAD to keep climbing.
And then we made it to the mountains of Wyoming and I think they are the prettiest mountains I’ve ever seen.
I’m so glad we did these photos. Ever since Reagan was a baby, we’ve had photos taken regularly, and it started when I purchased a year photo package from our lovely friend and photographer Kristen Weaver.
Right after our last photo session (below) everything changed.
Pictures would be different. Life would be different.
But pictures would be the only thing to help us remember the seasons we were in, the feelings we felt and the things God was doing in our hearts in those moments. And this last photo above, is about six weeks after Reagan’s crisis…her grit never changed.
Now I’m obsessed with doing pictures when we go cool places or when big things happen. And who could ever forget the Canada photos when Reagan lost a tooth in the forest?
Whether we were in a valley or climbing a mountain, whether we felt storm clouds or sun rays on our face, the pictures capture the season and remind me of what our family was facing in those moments.
The Wyoming pictures will remind me of how a few weeks before we had some of the toughest weeks with Reagan and a really awful family vacation. It will remind me that we pushed through and got on another plane filled with hope for a better vacation, which we had. And it will remind me that just two short weeks after getting back, Reagan would be having heart surgery.
Yes. On August 8, 2019, Reagan will have heart surgery to repair her Atrial Septal Defect. We’ve always known she’s had this, ever since she was two days old. But if you know our story, you realize that sometimes there are bigger things to overcome than heart surgery, which is kind of crazy. Reagan’s heart surgery has taken a back seat for many years in the hopes that the hole in her heart would close on its own, it did not.
I am scared.
My heart hurts. Look at this girl. She’s come so so so so far. She’s independent. It is amazing. It is hard.
Rob and I have allowed our hearts to have emotional and spiritual surgery as God has taught us new things, opened our eyes, minds and hearts to how he views us, how he views her, how he views his children, the world.
Even though I’m scared, God is with me. He’s with our family. One of the most memorized Psalms, Psalm 23, talks about how even when we walk through the valley of the shadow of death, we don’t have to fear any evil, because God is there with us. When things are scary, God will camp with you right there, he’ll prepare a table and sit down with you, while your enemies watch. Life includes shadow of death times, and we’ve had our fair share.
So after fighting infertility, pursing adoption, receiving a genetic disorder diagnosis, going through a metabolic crisis and seizures, being given a rare movement disorder diagnosis, placing a feeding tube, and the myriad of issues that come with all that, combined with my own brain surgery two years ago, we are diving into heart surgery this Thursday and Rob and I really do covet all of your prayers.
Isn’t this life so crazy? Like no one says, “I’d like to say yes to all of those things above.” But God…he just knows what he’s doing. If our family can go through all of that, and still say YES to God, YES to Jesus, and put our faith and trust in His hands, you can do that too. I can trust God with my present and my future and I can trust whether I’m eating in the presence of my enemies or my friends, he’s got me.
I whole heartedly believe Romans 8:28, “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”
We will always walk forward. Our family motto is: Never Backwards. Always Forward. Always. We will always be standing alongside Reagan as her story unfolds, just as I know so many of you stand with our family as we share this unbelievable journey. Thank you for that. Please pray for Reagan’s heart, her surgical team and our hearts too. Watching this sort of stuff go down with your child is one of the hardest things a parent can do. Thank you for your prayers.
If you haven’t read our last vacation re-cap, you can read it by clicking here. That was only three weeks ago, and I’m thinking it was our worst family vacation to date, but here we are facing all our fears again, and traveling even farther with Reagan. It’s amazing we were able to muster up excitement for another trip after our last one.
This time we brought Lauren, our first nanny, who has loved on our family for the last three years and traveled with us to California two years ago to see my family. Lauren is now a speech therapist and has amazing patience, and is loving and firm with Reagan. With her on this trip, surely Reagan will be a complete angel.
Unfortunately that theory was disproven on the plane, before we even left the ground.
I know many of you who read this blog know me well; but even if you don’t know me well, I think you probably know that I don’t hold back. This is especially true in confined airplanes when my child is acting up and I am on the receiving end of dirty looks, nods of disapproval and long stares. So when the woman in first class sitting caddy-corner to me gave a minimum of seven lengthy stares and head shakes at me, I said, “DO YOU HAVE A QUESTION?” I said it with the flight attendant standing in between us, who has obviously dealt with lots of different people, families, kids, disabilities, etc. She was un-phased. I said it loud enough for the rows in front and behind us to hear and staring someone in the eyeballs makes them uncomfortable, not me.
I was so upset. I have a screaming child, who’s pulling hair, trying to bite and I have to discipline her in a 3’ aisle with 150 people listening, watching and this lady, openly judging. We are doing our best, I promise you we are doing our best. I can’t always control my child because she’s her own human being, with her own feelings and emotions and personality. Did you know her name (Reagan Elle) means little king? And she really embodies that meaning, don’t you think?
For the duration of the flight, I had Bloody Mary’s, and had one too many. Our plane was an hour late to take off, they were screwing things on and off right by our row, and adding extra gas that they forgot was needed. Our connection was only 45 minutes to begin with, so we had all resigned ourselves to the fact that we’d miss our flight, we’d rent a car in Salt Lake and drive five hours to Jackson Hole. Rob even received an update from Delta that they re-booked us while we were in the air to a flight the next day at 11 a.m.
So many things out of our control. I had my mom and a few friends praying we would make our connection. In the air though, I thought it was an impossibility. I didn’t even pray it would happen.
But…when we landed at 8:01 p.m., and the flight attendant opened the doors at 8:07 p.m. and our flight was boarding one terminal over, we made a last minute decision that I would run and try to hold the plane. I never regretted that extra Bloody Mary (or two) more than in that moment.
As I ran off the plane I was asking the gate attendant who was running in front of me if she could help. She said yes and hopped in front of her computer, I told her, “We’re on flight 965, can you hold it?”
She said: “I can’t hold it. It’s boarding now; your best bet is to run.”
As I started running, I heard on the overhead speakers: “Final boarding for Delta flight 965. All passengers please proceed to gate F-3 now.”
I ran. I had so many bags. I had so much tomato juice and vodka in me. I don’t work out. And every time I had to walk, I felt like I was failing my family. I have to make it. Failure is NOT an option. I kept repeating to myself, ”You have to make it! YOU HAVE TO MAKE IT!
I saw the gate and I breathlessly and pathetically asked: “Did I make it? Can we get on this plane? I have to get on this plane and my child has special needs and I will die if we can’t get on this plane.”
The gate behind where you walk onto the gangway was closed. But was the plane door closed? It was not. A guy called from across the terminal, “Are you flying to Jackson Hole?”
And when I looked up, Lauren was running with all the rolling suitcases behind her. And then I saw Rob briskly walking with Reagan. Rob told me he ran with Reagan, carrying her all through the airport while she said, “I’m tired, Daddy. Daddy my legs are tired. Daddy, you’re tired.”
We made our flight. We sat down, buckled up and they pushed back. Our flight to Salt Lake was 34 minutes and I feel like that’s how long it took me to catch my breath.
Jackson Hole is beautiful. I am so thankful to have an extra set of hands here so we can try to enjoy ourselves — it helps so much. It allows Rob and I to reset, take a break, be a couple and then be better at parenting Reagan. Gosh, we need that so much. Having an extra person who knows Reagan and our family so well allows us margin.
Margin is so crucial in life, even more so with families who have children with special needs. And I think that is what bothered me so much about the mean looks from the lady on the plane. She has no idea. None. I typed up something on my phone that I wanted to write down and hand to her that gave an explanation as to what she was witnessing, which was only a snippet of our life. She has no idea that the fact that we go on vacation is a miracle in and of itself. I wanted to explain. I wanted to educate, but I didn’t. Instead, I tried to think of her as someone’s mom or grandmother who just doesn’t understand.
And Reagan calmed down and was a dream the rest of the flight, because we made the decision that Rob would sit next to her, in the middle seat. Rob was so uncomfortable and hot, but Reagan was perfect. And Lauren became our bartender.
This flight is one of our greatest memories and stories from a vacation ever. Every time we think about it we can’t stop laughing.
And it was still hard and it required pushing through a really horrible previous vacation and a rough take off, but this memory, it is one of my absolute favorites. It hasn’t been smooth this entire time, but is anything ever smooth and perfect? No. But I’m so glad to be here with Rob and Reagan and Lauren, and my California family.
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