Goodbye 2019. Goodbye Cancer.

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.

When Things Aren’t Actually Good.

I have been struggling with how to write this, what to say, what not to say and also how much to share.

We share a lot. I feel like everyone who reads this knows everything about our story. But some things feel sacred or maybe I just want to keep the new harder things secret. Didn’t God give us this incredible story; this “good ground” and platform, through our daughter, to share her miracle-witnessing story? Am I being prideful, vacillating between sharing and not?

As I was talking to my friend Jessie, she told me that she remembers some really transparent, vulnerable, hard blog that I wrote years ago, it didn’t have a positive spin, it was raw and emotional, she said it stuck with her. She pointed to that, and knowing where we are now, was able to visibly see the growth, the miracles and the progress in our story. An unlikely field, that had good soil beneath it, ready to produce a crop where it once seemed improbable.

Let’s dive in. We are dealing with a lot of new and really hard things. We all have problems, but even when you find a solution for old problems, new problems will arise from solutions to your old problems. Perfect and problem free living isn’t the reality of this world.

Reagan is off of three neurological medications, which is great! She was put on the medications over four years ago to help protect her from any potential future seizures and also help her mind and body figure out how to work together, to overcome her uncontrollable movements. As a result of removing three neurological medications, with precise weaning and over the course of eight months, a new problem found its way in: intense emotions and outbursts that can last a really long time.

The neurological medications she was on, likely had some of her emotions “sedated” for lack of a better word. Maybe she wasn’t feeling all her emotions, and now she’s feeling them times a thousand. We think she’s even more aware of how she feels when her peers want to play with her. We recently learned from her teacher that she’s starting to withdraw when her classmates want to include her in imaginative and dramatic play. Reagan is creative and silly and funny but it’s still hard for Reagan to verbalize fast enough and in a way others can understand, so she opts to not play and removes herself from the playground or from the situation. And, it’s possible she’s not feeling confident in her ability to use all her words with friends, yet. She knows people have a hard time understanding her and it frustrates the heck out of her. I wonder if instead of dealing with the frustration and hurt of trying to engage, she chooses to withdraw. In her mind, maybe this is a win? She doesn’t have an outburst or tantrum at school, and continues being the “good girl” that she’s expected to be and the kind and courteous girl that her teachers know.

I’ve cried a lot of tears recently because Reagan is social, but she’s adapting against her natural personality so that she doesn’t get frustrated or caught not knowing how to participate. This was not something we were expecting, but I guess it shouldn’t come as a surprise. Even though she’s social, social interactions with her peers are becoming more complex, and this is another area we need to catch up, an area we didn’t think we’d need to worry about.

Reagan is also having a hard time reading and sounding words out, she can’t say all of her sounds to begin with, so combining letters and sounds to make out a word that the teacher can understand is hard too. Even though she’s talking so much more and we can understand her more, this is another area she needs to work harder at to catch up to her peers.

She has to fight so much to even sit still enough to learn, combine that with difficulty talking, writing and other school related things, the distance between her and her peers is a constant push and pull. Contrasted with earlier in Kindergarten, when Reagan would correctly choose an answer for reading or math, now she’s having a hard time, and we wonder if she’s grasping the material.

She can’t write legibly, and truly, this is the VERY last thing I care about, but it’s also a way a teacher could test a student’s knowledge. It’s not possible to test Reagan’s knowledge through her writing numbers or letters, yet.

It’s hard for Reagan to manipulate a mouse and computer. Touch screen would be a bit easier, but the school doesn’t have that, even if they did, Reagan’s fine motor accuracy is not great and she gets frustrated now with her iPad if she messes up in selecting something for a game.

Did I mention Reagan is a perfectionist? When she would use her talker (which she adamantly refuses now) she would start to put a sentence in, and if she made one mistake, would erase the whole thing and start over. She gets frustrated if one of her baby bottles that is rounded on the bottom, won’t stay up straight. Also, why can’t these toys be made FLAT to stand up normally? Fine motor movements, specifically with her fingers and hands can be a challenge, so things are constantly dropping and falling. Reagan’s gross motor skills are good enough to get around, but she also runs into doors, and steps on our feet with her converse more times than we have patience for.

And yet she says, “sorry” so clearly. A word that’s hard to say, because of the ‘s’ and she says it in a kind voice, over and over and over. Our feet get stepped on a lot, and Bauer often yelps when he gets fallen on and stepped on. But she’s really sorry, she can’t help it or control it. We’re all frustrated, exhausted and sorry.

I want to be honest with those who follow our journey because my goodness, Reagan has come so far and we never want to forget that and we always want to acknowledge what God has restored. But the truth is, we’re constantly playing catch up with what she’s supposed to be doing for someone her age. We still feed her sometimes, because if we always left it up to her, we’d be too far away from her dietary goals, even as we’ve allowed ourselves to become somewhat relaxed, we can’t be TOO relaxed.

Excuse me while I indulge in a gymnastics illustration. We live our life on a balance beam. The balance beam is four inches wide and four feet off the ground. The room for error is unforgiving and mistakes on the beam are obvious and glaring, our life includes so much falling, failing and frustration and we just can’t seem to master anything on our beam of life. Meanwhile other people seem to be doing a flawless floor routine, with stable legs on a flat even surface. It doesn’t look like any of their obstacles are even challenging. I think to myself, “Do other people even have obstacles?” Of course they do, I know we are not unique. Our problems are different but no one is problem free.

When people say: “Reagan is doing SO GOOD!” or “How is Reagan? She seems like she’s doing amazing!” I don’t want to disappoint their high high expectation, so I say, she is doing amazing while adding, she’s a real sassy pants, because that’s cute and adorable, so the banter continues, “who isn’t sassy, she’s just knows what she wants!”

This is why I’m sharing our new, hard realities. Because behind the smile is a raging storm and that’s the truth.

From where we came from, she’s succeeding beyond what we ever thought would be possible. But I’d be lying if I said “yes she’s doing great” and didn’t fill in some color and details. Things are still really hard. Short of a full restorative miracle, I imagine things could always be a struggle.

I say all that BECAUSE I am CLINGING, like every single day to Romans 8:28. I put it in three different translations below because I want to KNOW this truth in my soul, and I want YOU to know it.

When I’m crying because I had to carry her out of HomeGoods like a football, or when she pulled a different Mom’s hair at a Dr. appt. and I had to discipline her (Reagan, not the mom) in a Nemours lobby, amongst people coming and going, swirling about, I need to truly know that God is working something good out of it. When I lose it and all of my cool and scream back at Reagan within the walls of our home, where no one is watching except God and the dog, I need to know, God can work that out for good too. I want to remember, our daughter is good ground that God has GIVEN to us to tend.

Here’s what Romans 8:28 says:

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. Romans 8:28 (NIV)

And we know that God causes EVERYTHING to work together for the good of those who love God and are called according to his purpose for them.Romans 8:28 (NLT)

And we know that for those who love God ALL THINGS work together for good, for those who are called according to his purpose. (English Standard)

He doesn’t work out Tuesday’s mess ups but not Wednesday’s. He’s not going to put only part of our story on display and keep hidden a different part (this part). No, he’s taking ALL of it, EVERY outburst and tear, and he’s working that jazz out, FOR GOOD because we love him. He’s called us to this.

We all have our own God given field to reap and sow in. Rob and I so much want to sow good things into Reagan. And we know God can, will and IS using her story. When I get mad at God that this is our path, I am reminded of Romans 9:20-21:

But who are you, a human being, to talk back to God? “Shall what is formed say to the one who formed it, ‘Why did you make me like this?’” Does not the potter have the right to make out of the same lump of clay some pottery for special purposes and some for common use?”

I don’t know what kind of pottery we are, but the way God made us and our family is no accident. It’s not what I thought my path would be, but I know that God WILL work ALL things hard. messy and seemingly impossible things in front of us for good. God’s got so much good waiting for us, even when our feelings say the opposite. Which is why we can’t rely on our feelings, we HAVE to rely on our faith and God’s word. It’s the only thing that’s true in this whole entire world.

A 2018 Sunset

As 2018 winds down, Rob and I sat down to reflect what this past year has looked like. And more importantly, we wanted to document things we never want to forget from this past year.

I’m not a scrapbooker, we rarely print pictures. Social media documents our progress and this blog knits the highs and lows into a tapestry of our life.

And so this is where our family keeps some of our sacred memories and moments and we share them with you.

I never want to forget


When Reagan would blame everything on her elbow. She’d take a full cup of water, purposefully dump it on her bathroom counter, and point to her elbow and laugh. Or take her plate and dump all her food on the table, as I watched, she would calmly say, “Elbow” with pure comedic genius.

When she learned my mom’s name, Thelma, and started calling her by her first name.

Then she started calling Daddy, “Daddy Robert” and giving us her signature mischievous grin.

She started adding “ie” to words. Do you want a snack Reagan? “Chippies. Orange chippies!!” Which means she wants cheddar and sour cream ruffles. And Huggies. She comes toward us with arms wide open saying she wants a hug, “HUGGIE PEAS!!”

Reagan tries to discipline Bauer when he barks. “No barking Bauer! Sit down Bauer!” Bauer doesn’t listen, which makes me so gleeful, because it gives Reagan just a taste of how annoying it is when someone doesn’t want to listen to you. She also wants Bauer on her bed for bedtime stories and to stay until she falls asleep, and he totally obliges.

She drives her power wheel with no hands and rarely does she look forward. She totally understands how to put it in reverse and turn the wheel, but has determined that driving with hands is 100% overrated.

We are always always impressed that Reagan has her dance routines memorized. And while she isn’t on beat, she knows the moves, and does all of them to the best of her ability. If she’s not feeling a particular costume accessory, like gloves, well…let’s just say it became our Waterloo.

Why you might ask? Why? Why? Why? Why? We’ve entered the why phase. Is it going away anytime soon? No. Why? Well I’d tell you to ask Reagan but then you’ll be 45 why questions in and forget where you started in the first place.

Getting the award for Most Talkative in dance class. (What?! How?! So excited for this one).

Asking to play with her friends by name.

Reagan has come into her own, fashion-wise. She LOVES picking out her outfits, changing them after school, after dance, after painting, after being outside, after her first nightgown, after getting food on any part of her outfit…you get the picture. More than that though, she dresses herself.

Her bravery. This year she connected the dots when she was at the hospital for a blood draw.

One thing I wish I didn’t have to write, but am going to anyway. Reagan’s extreme strong will has broken us more than we’d like to admit. On our very first Kindergarten school field trip to the zoo, Rob was one of the chaperones and I volunteered so we could help each other out. Turns out, we needed one another more than anything. Reagan became frustrated at lunch, and the talking back turned into screams and a meltdown that prevented us from moving forward more than once. We ended up having to leave the field trip, apart from her class and our hearts were so broken and burdened by what this means for our girl, who sometimes has such a hard time with emotional outbursts and behaviors. I cried for days and both of our spirits were so low.

Luckily, we have amazing friends who sat down with us and brainstormed how we could get her attention to a correct this behavior. Since clothes are the #1 thing she loves, we told her that for talking back and screaming when we ask her to do something, her punishment will be having batches of clothes taken away. It was a hot button item for Reagan and one fateful Tuesday morning in December, the plan was put into place when she started talking back to me. I came out with a handful of princess dresses and put them in a trash bag in front of her. Her reaction definitely let me know I had her attention. Unfortunately, her will of steel was still in full force. At the end of the day, three trash bags of clothes and four drawers were removed from her room. I honestly felt for all of us. I don’t want to do this, it makes me cry that we have to. Reagan can earn her items back with good behavior. We are filling up a mason jar of fuzzy pom-poms, affectionately called “warm fuzzies“. Reagan can earn warm fuzzies for listening, having good behavior and being kind. In just a day, the jar was half-full.

This brings me to another thing we are keeping in mind. Reagan is being weaned off many neurological medications. She’s currently off of two completely. Everyone’s parenting journey is different, and while I’m being super candid about ours, her struggles aren’t lost on us. In the same respect, we still have to parent and discipline. Even though she has trouble speaking, is being weaned from medications, has a genetic disorder and suffers from irreversible brain damage, she still has to be disciplined. And that is something we struggle with. Is it too much, not enough? I don’t know, she’s our first and only child and so we’re doing about as much right as we are messing up. But we’re doing all we can.

Reagan loves art. She started coloring more in the lines and her art table is a place of peace and calm. Art helps Reagan calm down, and she loves to create things.

We’re adding a larger patio to our house, Reagan tells everyone it’s for her bubbles.

We had a friend make a new table and bench, before it came Reagan would sign “different” and tell everyone “new table“.

Reagan used to sign “kind” and now she says we are “kind Mommy and kind Daddy.”

Reagan prays at night, she asks God to help her to talk. And she prays for her friends and Mommy and Daddy and MéMé and Bauer.

After a particularly tough day of discipline, she read her Bible until falling asleep.

Her love and loyalty to the little friends she’s made and kept for the three years she’s known them.

She helps with family art projects and the art that Rob makes for our house.

It’s not green or blue, it’s “Aqua” and she’ll correct you.

Reagan saying Obama for umbrella.

When we ask Reagan a question, the answer is always no. Then we wait, and she’ll tell us what she really means. We’re working on having her first answer be the one she wants to say.
“Do you want pizza, Reagan?”
“NO!”
“Yeah…yeah!!! YEAH DADDY!!”

The only word she can say that starts with an S is Snoopy.

Reagan’s first haircut in a real salon.

Loves playing hide and seek but is terrible at it. She says, “I’m here!”

If someone else burps, she says “Excuse Me” for them.

One of my most favorite memories is Reagan being a flower girl in a wedding. She walked down the aisle by herself, she held her flowers up to the sky at the altar, and walked into the reception like everyone was there for her exclusively.

Her confidence.

She climbed a ladder to the top of a playground all by herself.

Her love for Santa and for Halloween. But she never eats her halloween candy.

This year we were able to be at the beach for hours and she would cry when we had to leave.

Losing three teeth and only finding one.

Positive flying experiences.

Reagan saying “I’m a miracle.”


I recently read a passage from Streams in the Desert by L.B. Cowan. It talks about taking the things the enemy has used to wear you down and bring against you, the war that he’s waging against youto take that suffering, and turn it into spoils.

Romans 8:37 says that we are more than conquerers through Christ Jesus. And being more than a conquerer in war, means driving the enemy from your field, taking all the food, supplies, ammunitionit’s the spoils. And so much war has waged in our life, on our field, through our daughter Reagan. And with Jesus, we are fighting back, taking our spoils and being more than conquerers.

L.B. Cowan compares the storms of life this way: “Like the eagle, who sits on a crag and watches the sky as it is filling with blackness, and the forked lightnings are playing up and down, and he is sitting perfectly still, turning one eye and then the other toward the storm. But he never moves until he begins to feel the burst of the breeze and knows that the hurricane has struck him; with a scream, he swings his breast to the storm and uses the storm to go up to the sky; away he goes, borne upward upon it.”

There are many times that I hate our storm and the war we have to fight. But knowing that the storm can help me go higher, and knowing that there are spoils from the war being waged that we can appropriate for our family, allows me to look back and see, that we’ve actually done that, and continue to do that.

All the things I don’t want to forget this year…these are our spoils, and we’re not done.

De-emphasizing GA-1

This blog is written by both Rob and Anne-Marie. Indented and italicized paragraphs are written by Rob. 

We visited the Clinic for Special Children, in Lancaster, PA. There’s a reason we decided to come here, in the middle of Pennsylvania, Amish community. There’s a man here, Dr. Strauss, a world-renowned specialist in GA-1. He helped create and redesign the formula Reagan drinks, he’s helped with the protocol for treatment and during our meeting, he said things that turned our world upside-down and kept it spinning long after we left.

In the middle of this corn field, is a cutting edge facility filled with people who have seen more GA-1 patients than anyone. You see, the Amish are more prone to genetic disorders due to their small genetic profile. And Dr. Strauss has treated hundreds of children with GA-1 not just in the Amish community, but throughout the world.

He eloquently explained GA-1 and the part of the brain that GA-1 attacks, comparing sections of the “basal ganglia island” to a pizza, with a cheese part and a crust part. He explained that there’s only one type of cell, “located in the crust” and this is the only location in the entire body where this type of cell is located, and that GA-1 only seeks out this type of cell.

After looking at Reagan’s MRI and going through the history of how her crisis unfolded, he confirmed that the manner in which she collapsed is how GA-1 works and that it’s a terrible disorder. He also said that had we done an MRI the day before her crisis, everything would look normal. Her MRI on the day of her crisis proves it was an isolated incident, and shows that the one type of cell this disorder goes after, was destroyed.

We continued our discussion, he said the greatest risk for damage like this is until the age of two. After two, the risk declines greatly, which we already knew. But, what we didn’t know is that if there is a crisis and GA-1 destroys the one type of cell in the crust of the basal ganglia, it’s gone. There are no other cells like that in the brain or the body, and the risk for another crisis is essentially removed.

Now, no one will come right out and definitively put on paper that a crisis will never happen, ever again, but as we spoke to Dr. Strauss our level of stress and anxiety started to ease up. Yes, Reagan will have GA-1 forever, it’s in her DNA, but we can begin de-emphasizing it’s impact in our lives.

Looking back, planning and bringing home Reagan on day two of her life was essentially like moving into our newly constructed dream home. On day four, when we received the devastating news of her genetic disorder and learned about this terrible thing called GA-1, we essentially boarded up the windows and barricaded ourselves inside, as if we were preparing for a category five hurricane. When Reagan had her crisis, our new and perfectly planned home was damaged and we dug in deeper—or to use a phrase only Floridians say during hurricane season, we hunkered down.

But at this appointment and to continue with the analogy, Dr Strauss began to take down the boards that covered our windows to show that the storm had passed. Yes, the storm’s damage had been done, but the damage HAS BEEN mended in a new way, this time with character and uniqueness

GA-1 doesn’t need to define Reagan, and up until this point it has been defining so many of our waking hours.

Now our position is slowly shifting; if she doesn’t drink all her formula, it’s OK. If she doesn’t meet exactly 20g of protein a day, it’s OK. So many times we’ve felt the pressing weight of not meeting a specific protein goal, so much so that we end up begging Reagan to ice cream or cookies to help her meet the protein goal. He gave us a wide range of 18g – 25g of protein for a goal. Just writing that makes me feel more relaxed. This approach, is mainly due to her age and the lowered risks, but also because she’s had a crisis and that particular type of cell is gone.

Dr. Strauss said Reagan reminds him a lot of another GA-1 patient of his. She recently turned 19, is going to college and just got her driver’s license. She also has a movement disorder and had a crisis.

“You will be surprised at how independent she will be.”

I could have cried when Dr. Strauss said that.

Then, we talked about the medicine. He wanted to know why she was on such a concoction of neurological medication. Rob and I discussed that it was due to her movement disorder and everyone being fearful of more seizures. We just thought this is what you do. He colored in our thinking by telling us it’s because when doctors see a problem, it’s like a popped nail and they can’t help but grab a hammer to fix it.

Seizures are a common occurrence during a metabolic crisis, and Reagan had three. But she hasn’t had any since then. We’ve driven ourselves crazy wondering if she hasn’t had seizures due to the medication she’s on, or is it because she’s not prone to have them at all? No one has felt comfortable taking her off the medications because what if she has another seizure? Dr. Strauss likened that line of thinking to walking around with an open umbrella over your head and rain boots on every day because it might rain.

The months following Reagan’s crisis were understandably dark times for both of us, and even though we have emerged from that darkness, it has stuck with us. For the past 4+ years, we celebrate every gain Reagan makes with extreme joy, but there is always a part of us that wonders if it will be taken away. When will GA-1 pull the rug back out from under us? When will this all come crashing back down? Living like that has taken an unseen mental, physical and emotional toll on both AM & I. And when Reagan gets sick, like every child does, we retreat within ourselves, preparing for the worst.

But hearing the words from Dr Strauss “begin de-emphasizing GA-1 and its impacts in our lives” was something freeing for both of us, as if someone had removed the albatross from around our necks. Do we still need to watch what she eats, make sure she drinks her milk (formula), and be cautious when she is sick? Absolutely, but that sort of normal is music to our ears. We can do that.

“Get out from under this dark cloud that her crisis has had on your life. It’s over. It’s never going to happen again.” Those words spoken by Dr. Strauss to us were like a crisp breeze over our face.

I get nervous writing something with such finality and while those were his words, what if he’s wrong? There are others in the medical community of genetics who aren’t so willing to provide guarantees. In medicine and in life, there aren’t guarantees and we understand that. But the freeing feelings Rob and I felt as we sat in that patient room were unmistakable.

What now?

Well, we’re going to start systematically weaning Reagan off her neurological medications, there are four of them and this could take a few years to accomplish. Two things could happen, 1. her movements might increase and 2. she might have a seizure.

If her movements increase, we’ll see by how much or if she’s able to work through them. The benefit of removing some of these medications is her clarity can increase, her behavior and mood could improve, maybe her talking too. The risk and reward have shifted. Before she couldn’t control her arms from flailing, and now she’s trying to run and do ballet twirls and pliés all over the house.

And we’ll pray she doesn’t have any seizures. But we’re putting the rain boots away and our house isn’t going to be boarded up anymore. GA-1 is here to stay, and we have a healthy respect for it, but we’re ready to de-emphasize it in our lives and try to live a more normal life.

Healing.

You know what’s crazy about open cuts and wounds? They heal.

We often say time heals all wounds but I tend to disagree with that statement. As a person who has had lots of wounds, other than just this massive physical wound that’s healed on top of my head, I think a more accurate statement is that over time, we learn to live with the scars from the wounds we’ve endured.

One year ago today I had brain surgery. Looking at me, you wouldn’t know that I have a scar from the top of my head to just below my ear. You wouldn’t know that I have titanium plates under my skin, or that I don’t have 100% feeling in my scalp, and that much to my chagrin, I think my head feels like the Grand Canyon. Rob plays with my hair every night and he says, “you really can’t tell,” but I think he’s just being a good husband.

That’s the thing with invisible hurts and wounds, if others can’t see them, it’s like they don’t exist. I’ve always said my brain surgery was a side dish to the main course of our daughter Reagan and her struggles. Her struggles are visible, so there’s an understanding amongst other people when we’re out. But there are lots of invisible struggles and everyone has them.

If you’re going through something mountainous, or Grand Canyon like, every step might look like one where a wound will be inflicted. The inevitable thing in this life though, is that wounds are around every corner, from a friend, a spouse, a family member, a Dr. report or the sidewalk outside.

Please be encouraged though, when your wounds begin to heal, you will figure out a way to live with the scars and not just live, you will be joy-filled again. If there is one thing I’ve learned in the past five years it is that God is serious about seasons. He’s always teaching you no matter what the season, but the times I was closest to him and the times I learned the most, was in those really rough seasons. There was something being refined inside of me, so that in the next season something new could shine.

I’m grateful to be one year post op and out of brain surgery season, but there were valuable things I learned while there. Because of that tough season, I will walk more confidently in the days ahead, and you will too.

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.

Across the World

Four years ago, if you told me that we’d travel to another country WITH Reagan, I’d say you’re crazy.

But here we are, on top of mountains, doing things we never even dreamed our family could partake in.

This trip is exceedingly, abundantly more, than we could have ever imagined. Guys, there’s snow, in JULY!

We’re in Whistler, Canada. We went through customs with Reagan. We flew almost 8 hours and drove 2 1/2 hours to get here. We took two gondola rides, on cables, above mountain tops to get here.

I’d like to point out, it’s not just any gondola ride. It’s the Peak to Peak. It’s the longest gondola ride, almost 2 miles, and the highest lift of it’s kind, with an elevation of 1,427 feet. It’s some sort of record. Which is ironic because I feel like we’ve broken a life record just to make it here.

As I looked across the horizon and over so many gorgeous mountain tops, I couldn’t help but think about how far away we are from what we’re used to, and how scary that can be if you’re a parent to a medically complex child.

I am SO proud of us.

Am I nervous? Yes!! I keep wondering how we’re going to help Reagan meet her food goal by winging it, especially on top of a mountain. Evidently Canada doesn’t want to forget their vegetarian friends because lo and behold, there was a veggie burger just waiting for us after our first gondola ride, in all of it’s quinoa glory. I was shocked.

Can I tell you an honest truth? If you’re in a tough spot in your life right now, I know and I understand, that you don’t think a mountain range is in your future. The climb might be arduous. No, it will be arduous, it’s a mountain top we’re talking about! But you can make it there, God will help you. And boy, when you do…it will it be exceedingly, abundantly more than you could have imagined.

We literally made it to the very top of a mountain with our daughter today. I’m amazed.

Being Different is OK

One Year Ago.

Part 2. Exactly one year to the day.

Do you ever have those moments where your whole heart breaks in two for your child? It’s happened a lot, but this past weekend I realized I needed to up my parenting game on the spot. It wasn’t just any teachable moment, it was a defining moment, a remember forever kind of moment.

Reagan was sent to timeout in her room for pulling and hitting a coworker who was over at our house, she goes to her room crying those hot tears, with her hand over her mouth and screaming because she knows she’s not supposed to do that. And when she realizes those things, this is often the scene.

I️ followed Reagan into her room, which I normally wouldn’t do. I’d allow timeout to happen for a few minutes and then talk to her, but this seemed different. I don’t know why, it just did. Through our conversation I️ asked her a series of questions like, do you know you’re not supposed to do that? (yeah! *tears rolling down her face*) Are we supposed to hit and pull our friends? (NO! *hand over her mouth and head buried in my shoulder*) Would you like it if someone did that to you? (NO! *bottom lip out as far as can be*)

I don’t know how the conversation got where it went next, but Rob and I have talked with her before about this, and she knows and we know that it’s hard for her to control her emotions and her movements due to *insert all the things* here. I remembered that she had used the word different a few times on her talker recently. So I asked her if she liked herself. And her head just fell and her lip was out and she looked me in the eyes and said no and buried her head in my shoulder. She didn’t like herself. She didn’t love herself.

Reagan, do you feel like you’re different? *sniff, sniff, big belly scream* “Yeaaaaahhhhhh!”

My heart broke into a million pieces. First of all she’s telling me this really hard thing to communicate for any 4 1/2 year old. And, I’m so glad she can communicate her feelings, but I hate that this is the feeling she’s having. She answers that things are hard for her. It’s hard for her to communicate and she’s frustrated that it’s hard for people to understand what she’s saying.

She knows sign, but she learns faster than us. There have been a few times when she’s signed and we don’t know what she’s signing.

Most recently it went like this:

Rob: “Are you signing something?”
Reagan: “YEAH!”
Rob: Does Daddy know the sign?
Reagan: “No”

And we proceed to guess what she’s signing until we get it. That time, she wanted a princess story from Daddy. She had just learned the sign for princess one day earlier and it hadn’t registered with us yet.

So in this moment I’m trying to figure out what to say to her impressionable heart and mind as I’m fighting back tears. I tell her “God made you perfect and you don’t need to be like everyone else. Being different is OK, even though it might be tough sometimes.” She wasn’t really loving that idea…so I tried again.

I told her about when she was sick, but in more details. She’s been telling me that she wants to be a Dr., specifically a baby Dr. when she grows up. So I told her some of the Dr.’s that saw her in the hospital were wrong about what she would be able to do. I told her the Dr’s told Mommy and Daddy she would never walk or talk or eat. And they were wrong.

Then I️ explained to her what a miracle is, who is responsible for miracles and that she IS a miracle. Miracles are different AND awesome. She knows God made her and that God loves her. She signs that God and Jesus live in her heart. She’s receptive to all of that. At the end I ask, is it OK to be different? She had mixed feelings about it still, but the wheels were turning about being different and being cool and how they can coexist.

Being different was the theme of the week. We drove to see Christmas lights and pointed out that they were all different, and that they were still beautiful. “Reagan, don’t you see how being different is awesome!?” She was 50/50, not quite convinced.

Having a child who is almost five that has difficulty expressing all of her thoughts, imaginations and dreams is really hard. The other day she used her talker to say “I am mad” and “I am sad.” And she cried as I asked questions that related to the signs she was giving me and what I thought she was saying and all the surrounding events.

Sometimes she wants to say something funny, most recently it was “I like Elf and toilet.” She then smiles with her fingers in her mouth as she laughs and waits for me to get it. Although it took me a little while to figure out, I learned she was referring to a scene in Elf that she finds so funny and wanted to tell me.

Buddy the Elf is different, and so loved. Reagan liked that comparison 🙂

We so badly want her to talk and to communicate with her in any way possible. We are looking to take sign language in 2018 as well as sign her up for more intensive speech therapy. It truly is a blessing to be able to talk with your children and we hope and pray for that continuously. If you think of it, please pray for that as well.

xoxo

just brave enough

Ever feel like you’re just surviving and hanging on by a thread? Yet somehow you muster enough strength to get to the end of the day, collapsing at the finish line, staying asleep there, only to wake up at the beginning of the race come morning?

This feels like my current life stage, it’s my hamster wheel.

But I don’t want to just survive life. I want to LIVE it. I want to notice the beautiful things that each day holds, not just the tasks and goals that are a part of our life. Weighing food, dispensing medicine and working on things with Reagan is part of our daily life. It’s not ALL of our life, even though some days it feels like that’s all our life consists of. There’s more to it and I want to highlight those moments. I don’t want to pretend the hard stuff doesn’t exist, but I want to notice the lovely and be thankful for it.

she’s so proud she can Relevé

Thursday Reagan has another surgery. It will be her fifth time going under anesthesia. She’s not even five. Her g-tube is stuck and no one can get it out so it has to be surgically replaced…surgery is also the safest option we were presented with.

I’m determined to find a way to abundantly live in this reality and not just exist. When Reagan was born and we got her GA-1 diagnosis, I kept saying to myself, if we can make it to five years old unscathed, she’ll be OK. The severity of her disorder goes way down.

And now I wish I had paid more attention along the way instead of walking a tight rope, looking down at the scary things below. The scary things happened and I kept looking down, trying to avoid more bad things that could happen if we were to fall. I fight to be just brave enough so fear doesn’t win the day.

And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. – Hebrews 12:1-2

We are ordinary exhausted  parents trying to do extraordinary things for our daughter who needs us to stand, not collapse at the finish line; she needs us to keep looking up at Jesus so we can show her we are living not merely existing.

Yes, it’s brain surgery. 1 of 7.

These next several blogs are part of a series that I’d recommend be read in order.  I haven’t wanted to post anything recently, and now you will understand why. For a variety of reasons, we decided to keep this information limited amongst a very small circle of people, but now that the picture is largely filled in, we are ready to share our story with you. 


7/12/17
Today a date for my brain surgery was scheduled. Yes you read that right. So saying, “well at least it’s not brain surgery,” unfortunately doesn’t apply from here on out.

For months we’ve been trying to figure out what is going on. Headaches and some other symptoms lead me down an investigatory path to figure out if anything was wrong. I truly thought that when I got the call from my Dr. about my MRI results in April, she would tell me it was nothing and all in my head. But what the MRI in April revealed was what appeared to be a brain aneurysm. So a CT scan with contrast was ordered as a follow up sometime in May.  The CT scan wasn’t conclusive with what the MRI revealed. It was thought that maybe, the aneurysm happened, healed and scarred over, and miraculously figured itself out. My primary care Dr. said this was the best news I could receive and told me I’d experienced a miracle. Miracles aren’t new in our house so I thought, “wow! that’s great!”  If she didn’t tell me to follow up with a neurosurgeon, I’d probably have left it at that.We’ve since learned that an aneurysm happening and miraculously figuring itself out would be considered extremely rare, but as you know, we basically live our lives in the extremely rare zone.

We met with a neurosurgeon on June 1st and were prepared to get the information that the lesion had figured itself out and there was no need to worry. But what we got was the complete opposite.

During that meeting the Dr. said it was either an aneurysm or a tumor and that more testing was needed, a cerebral angiogram to be exact, and he prepared us that an invasive brain surgery could be in the near future depending on the results. He wasn’t sure what the lesion was, and stated it had “a very unusual presentation” and that it needed to be treated due to the size and location. The goal of the angiogram would be to provide more concrete information so that the treatment plan was clear.

Rob and I left that meeting in complete shock and disbelief that this was the path we were on. We were not prepared for that meeting and walked the parking lot in a daze toward our car. I remained on edge and freaked out for my upcoming angiogram b/c they go in the femoral artery and I would be awake! For the angiogram, my Dr. gave me a cocktail to help relax me but it was WEIRD. I remember everything and then I had the bright idea to open my eyes mid procedure and looked at the wall of monitors (eight monitors to be exact) and it looked like star wars was happening on the screens, except it was the arteries in my brain and the dye going through them. It looked insane.

Unfortunately, the angiogram didn’t confirm an aneurysm either. We brought in another Dr. for a second opinion and learned that the surgeons had already consulted with one another. It appeared that whatever the heck was in my brain was a mystery to two very well trained neurosurgeons, trained in diagnosing and treating both tumors and aneurysms. Because I sought a second opinion and these Dr.’s were already communicating, they began working in tandem discussing my case and sharing results and information.

One final test was ordered, another MRI, this time with and without contrast to hopefully provide more insight and a clearer answer. My MRI was done right before we left for California; the second opinion Dr.’s office called me on our way to the airport. His assistant read verbatim his notes of the MRI: “I’m actually more concerned it’s an aneurysm based on some sequences.” and that’s what we headed off onto our 10 day vacation with.

While on vacation the primary surgeon contacted me with a much more detailed report of the latest MRI. He said that the lesion lit up and took up contrast, meaning that there was blood flow and it could be “churning” a clot and that he was leaning toward it being an aneurysm but still wasn’t 100% sure, and didn’t leave out that it could be a tumor. He recommended surgery b/c at this point all the tests had been done and the only way for a definitive diagnosis was to perform brain surgery.

The risks of not doing the surgery would be the aneurysm ruptures. Not good. And if it’s a tumor, it could grow. Also not good.

The risks of doing the surgery are low at 3-4%, but they aren’t pretty and include the need for a blood transfusion, stroke, seizure, weakness, paralysis, risks associated with anesthesia.

Here’s what the brain surgery will entail:

  • An incision on the right side of my head
  • The Dr. will pull the skin back
  • Remove a portion of my skull (I’m literally dying as I think of this)
  • And then either clip the aneurysm or remove the tumor
  • He’ll put everything back together (with staples) and add a fun titanium plate and I’ll be in the hospital recovering from my “craniotomy” for at least three days.

Guys, these are all the facts and information that’s been thrown at us and have been swirling around since I heard the word aneurysm and learned what that might mean. But want to know how I feel?

Terrified.
Worried I won’t wake up from surgery the same, based on my experiences with Reagan.
Hopeful my symptoms are relieved.
Calm, knowing God has my life in his hands.
Freaked out for my friends and family.
Consumed in thoughts about how Rob must be feeling.
Questioning God. Wondering if it’s me that needs to learn something or if it’s someone else who needs to benefit by watching our family walk through yet another difficult and rare circumstance.
Stressed out.
At peace. Knowing there’s a reason this is happening.
Annoyed that I may never know what the reason is.
Wondering. How this will impact our future with Reagan, with each other, with work. Will it be a big deal, will it not?
Reactions of other people. People generally have good intentions but words can fall flat and dust up disappointment that I’m all too familiar with.
Sharing. Vacillating between how much to share, when and how. Wanting to give God the glory during a really difficult time and figuring out how to do that.

At this point I’m waiting. Waiting for July 31. Between now and then I have an EEG, pre-op stuff to complete, five closings and I HAVE to get my hair done. The recovery time is six weeks and my surgery is just days before my next hair appointment so I moved it up. B/c there’s no way I’m allowed to have dye and highlights all up in my wound (shudder) that’s just so gross to me. I don’t know how long the healing takes but I need to make sure my hair is at least on point.