It’s not like it’s brain surgery (we did that already).

Because I did have brain surgery, remember? How could one forget…

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.

To clarify:

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?

xoxo
AM

The Heart (and the surgery)

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.

Wyoming photos by Peter Lobozzo

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.

Photo by Ashley Blahnik of Dearly Photography

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.

Photo by Katie Williams

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 calls this her “Sound of Music” photo

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.

xoxo

Bonding with a Feral Child

God has been working with me to process our recent family trip to Washington, DC. It was a tough trip. There were beautiful moments and memories, clouded with really tough behaviors from our girl. The stroke and brain damage she had five years ago still lives with us every single day.

The part of our brains that allows us to control our impulses was damaged in Reagan’s brain. Because of that, it makes processing normal things very hard for Reagan. As an example, being told her shoes are on the wrong feet, might make her scream at the top of her lungs, clench her teeth and storm off. Transitioning from one thing to another, could result in a 15-45 minute meltdown, complete with screaming, hitting and saying things like: “That’s rude, Mommy! You’re a mean mommy.”

Our first night in our hotel had me in tears. I tried for an hour to get my overly tired and extremely strong willed child to go to sleep. It was 10:30 p.m. and no matter what, she wouldn’t listen, talked back and hit me. I hate writing this. I cried so hard, in front of her, and my sobs is what finally put her to sleep and me into a state of shock.

The next morning we walked to Nordstrom Rack to reward myself with a new pair of shoes for keeping my cool the night before, even if I was in tears.

Parenting a child with complex special needs is so hard. It’s rewarding and heartbreaking, amazing and terrible, hopeful and hopeless — all at the same time. I’m amazed that Reagan can say, “you’re a mean mommy” but sad that those are the words she chooses when I have to correct her behavior. I know, parents all over the world have heard these words, we’re no different, except that we are walking against the crowd.

On July 4th, I was walking on Pennsylvania Ave outside our hotel with Reagan screaming in her stroller. Everyone was walking toward the parade that was about to start, and we were walking in the opposite direction and I couldn’t help but think this is our life, upstream, away from the cool parade, distant from the traditional path. It made me sad, but I also know God set us apart for something different.

While reading in 1 Kings 17, Elijah (yeah the guy who doesn’t die) has some bleak things he’s dealing with. First of all, God’s directed him to drink from a tiny brook that’s about to dry up, and also, God said that the ravens will be bringing him food. Cool cool cool…yeah, just up in this deserted place with barely any water and the birds bringing me food, this is exactly how I pictured life. Then the brook runs dry and God’s like go to this new place and you’ll find a widow who can help. The widow is literally gathering sticks to cook her last meal for her and her son and tells Elijah after their meal she expects they will die because they have nothing else left. (You truly should read this story, it’s CRAZY and amazing).

Elijah, the ever so kind gentleman, says, “Go home and do what you said, but first, make a small loaf of bread for me, then bring it to me, then make something for you and your son.”

If this is all Elijah said can you imagine the look of shock the woman would have had plastered all over her face? But he continues, “For this is what the Lord the God of Israel says: ‘ The jar of flour will not be used up and the jug of oil will not run dry until the day the Lord sends rain on the land.'”

The woman had scraps, and God made her scraps last three years.

Can I tell you that the days and nights before this photo was taken I had nothing in me? Can I share that we were about to enter The White House and I was freaking out that she would scream and secret service would ask us to leave? And true story, one minute from getting inside The White House, Reagan said she had to pee. There are no bathrooms. Guys we are parenting on FUMES!

What I am continually learning is that even when what is visible seems like there’s no way out, that it’s too much to bear or that circumstances are impossible, there’s more on the other side that I can’t see. And the same goes for how things look on social media. I didn’t post a lot of our awesome and beautiful vacation photos because the story behind them was not was was pictured. Behind every great picture we took, was a frustrated mom and dad trying to get their kid to listen, eat, not hit us and go to bed at a reasonable hour.

I can either look at my current situation, with Reagan not listening to me, hitting me and scratching me and think, “Well, this is our life, and how it will always be, and there’s nothing more that God has.” OR I an look at my current position through the lens of God who has unfailing love for me. I can stand firm in the fact that either God knows what he’s doing or he doesn’t. And he for sure does know what he’s doing. And he for sure knows more than I do. And I can FOR SURE trust him.

It’s taken me several days to recover from the rollercoaster that was our DC family vacation. And I’ve come to the conclusion that some kids are feral, they are wild, they beat to their own drum that isn’t sold on regular store shelves, it’s in the beyond, section. We’re good parents, and her behavior isn’t an indication of our parenting skills. Oh my gosh, PLEASE remember this when you see a feral kid in public doing a crazy dance, making dinosaur sounds and yelling at their parents. They are FERAL. They are WILD and God made them to be a loud drum, with startling cymbals and a lot of BASS. I don’t know what God knows about our feral child, but he made her and I’ve got to trust that he knows what he’s doing.

Also shout out to friends who love us, and still want to hang out, and plan future vacations with us, even if Reagan pulls their kid’s hair.

Every Inch will be a Future Milestone

Reagan is starting to talk more.

It. Is. Amazing.

She’s six, and has just starting stringing multiple words together. This is something we (collectively, my family and anyone else who has prayed) have prayed diligently for, for over five years. Have you ever wanted something so badly you didn’t think you would be able to breathe until it happened? For our family, this is that thing.

The other day I was blow drying my hair and she came up to me and said, “What are you doing?” I’m blow drying my hair, child. You know what I’m doing. The bigger picture is that she initiated the conversation. She wants to talk and she’ll tell me “I want to talk, Mommy.”

She told us that she wanted a basketball and told Rob she wants to play basketball with him. I never want to forget this moment in time because it’s an active miracle displaying in front of us.

Things Reagan says:
“I play basketball after school.”
“I play basketball, it’s easy.”
“I no dance anymore. I dance a long time. Three years, Mommy.”
“I want to change after school, and go to playground.”
“I want to play with Kelly. I want a sleepover at Kelly’s.”
“I had P.E. today, not art.”
“I’m not your girlfriend.”
“I no have school today, it’s Saturday. Daddy no work on Saturday.”
“Sunday is church.”
“Tuesday is speech.”
“Go away, Mommy.”

She’s also coined some cute nicknames for us; I’m “Mommy Dolly” and Rob is “Daddy Chicken” she says he “bok boks all daaaaay”.

Speech. If you have it, you likely take it for granted. Being able to have your thoughts heard through your own expression, and even making those you’re with laugh, is one of the greatest ways we have to connect with one another. And Reagan is just starting to explore that. But it didn’t come out of the blue. She’s put in the work.

I was curious as to how much work, so I got some data from a few of Reagan’s speech therapists. Reagan has had speech therapy since she came home from the hospital at 14 months old. For five years we have belabored everything that has to do with feeding, textures, oral motor skills and the ability to move your tongue from side to side, up and down, strengthening all her muscles and teaching them to work together. The amount of coordination that you don’t even think about in order to say a word like “think” is seriously above my pay grade. We worked on saying “I want” for six months. We’ve worked on saying the ‘F’ sound for six months, not saying the word ‘F’ making that sound and the placement of your mouth, lips and teeth to do so.

Reagan just started whispering and that’s been years in the making.

Five years. 19.5 days. 467 hours. 2 hours a week. 28,020 minutes.

I love love love hearing things like: “She’s talking now! You can understand her!” But when we are asked, “What did you guys do?” That’s a question that has so many puzzle pieces to it.

In a nutshell, we did one moment at a time and tried to follow the path God placed before us as best as possible. We didn’t execute our moments flawlessly. We moved what felt like an inch a day, and many days we collapsed at the end, even good days. And all that focus added up to 28,020 minutes of hard work for two specific goals: talking and eating.

I recently finished a book called Pound the Stone. The premise is that the path to mastery doesn’t just happen, it takes constant work and grit, and on your way to whatever goal you want to achieve, it will often feel like what you’re doing isn’t even making a difference. In the opening, it talks about a stone worker hammering away at a rock, 100 times without as much as a crack showing in it. But at the 101st hit, the rock splits in two. It wasn’t that the last hit was more magical than all the others before it, it was because of the 100 previous hits that it was able to open on the 101st. Small things matter. Ordinary things matter. Inches matter, it’s why they are measured in football; inches always mean a future milestone.

Here’s a glimpse at the hard work Reagan puts in at speech therapy.

On the surface, it doesn’t look like much and it’s certainly not finessed, smooth talking. It looks like a lot of work, it doesn’t look fun and it for sure isn’t what Reagan wants to do after a full day of school. But, this is the hard work that only a handful of people see and understand, and these moments in a little 8×8 therapy room, are the inches we are taking toward our big milestone goals. I’m so proud of Reagan and everyone who is gritting it out on the path with us.

Mountains are Rocky

Ok, so I know the last blog was about making it to the mountain top, and yes, the metaphors that go along with that and our life are poignant, but it dawned on me, that mountains still have rocky terrain. You’ve got the view and perspective of where you’ve been when you get to the top, but it’s not smooth walking.

That is life in general. It’s always an ebb and flow. There’s always an up and a down. Always emotional swings. Small humans have a wide range of emotional pendulum swings.

I mean look at these two photos.

This one says: “Holy COW! We’re on a gondola, in between mountain ranges! We’re at the top of mountain!”

And this one says, “I’m freaking tired of walking and I want to cry.”

You know, the conversations we had with Reagan on the mountain top were along the lines of you need to stop complaining.

Thank Heaven that God’s not like that with us. When we say: “But WHY do I have to go through this? This is hard. I don’t want to keep going. I quit.” God just sits there with us. He gently guides us through.

I lack gentleness in general. I’m all, “Get moving and stop it. We’re here to have FUN!” And Reagan tries her hardest to say CHEEEEEEEEEESE in all our photos with her entire body, or refuses to look at the camera all together.

Many of us are striving for “mountain top living” however our thoughts on what that looks like I believe are skewed. You’re not free from the struggles of every day life when you’re on the mountain top. Your location doesn’t alleviate you from having to do hard things. Everyday life still happens, the view is just different.