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.

Brain Surgery Day – 5 of 7

Night before surgery, my prayer warriors came to pray over our family.

7/31/17 – surgery day

The day of my surgery I woke up right to my alarm clock at 5 a.m. and moved pretty slowly through the morning. I wasn’t in the biggest rush to get to ORMC, given what was on the agenda, but when I got there, I was greeted with my praying posse of people. They prayed over me while we waited in the downstairs main lobby and then together we stormed the halls to the 4th floor to check in at surgery.

The amount of people and prayers that I felt on the day of my surgery was completely supernatural. I was more worried about my cerebral angiogram than this brain surgery, and I believe it’s due to the peace that God provided me.

Shout out to my hubs for the photo. Thank you Sami, Lisa, my mama, Brittany and Laura and the two hospital workers who are photo bombing in the back. And Lindsey who was about five minutes behind this photo. All showing up at 6:30 a.m.!

After checking in, I was called back to have an MRI before surgery just to make sure the surgeon knew where to line everything up I presume. Then it was back to pre-op to scrub down and put all my awesome surgery gear on and get a cocktail of medications. Here’s our pre-op photo.

I love this photo of Rob for so many reasons. He looks proud of me, he looks emotional, holding tears back, and this is a total “live out the wedding vow” kind of moment. This is a potential bad and scary time, we’re walking straight into the unknown, and I am so beyond grateful for having Rob. Husbands are not just supposed to be rocks–rocks have no feelings, I can’t get comfortable on the shoulder of a rock if you know what I mean. “Vow moments” get into the thick of it, with feelings, comfort, support and yes strength, but the strength we are receiving is supernatural, not of our own power. That strength is the only way to explain how we’ve been able to get through ridiculously tough circumstances. It’s not us acting strong, it’s God giving us the strength, it’s a strength only he can dish out and it’s immeasurable.

Back to the medical stuff, I had to have so many IVs and I was stressing about those every time they said they needed to do another (I had three all together) The nurses and anesthesiology staff kept saying that the IVs were more daunting to me vs. having my head cut open. But with one in my elbow vein, one in my hand, and another in my artery on the other arm it just made everything seem all the more serious. The anesthesiologist said for these types of surgery, lots of things are monitored, like my pulse and blood pressure were not only monitored from a pulse ox reader on my finger tip, but from my artery blood pressure line. She gave me a cocktail of medications to calm me down and then I began my journey down the hall to the OR.

After moving and positioning me on the operating table, I listened to the surgeon speak to the operating room staff about what they would be doing, how it could be an aneurysm or tumor and how they didn’t know yet. The room seemed somewhat struck by the fact that they didn’t have the answer before surgery, but I felt completely confident in my surgeon and I knew God was in there with me, the room was filled with his presence.

When it was time, the Anesthesiologist came over with a mask and told me she was going to administer the anesthesia. I took a few deep breaths and as I did so, I’ve never felt so much at peace. The feeling of peace and calmness before going under was a total answer to prayer. That prayer was prayed over me that morning and I know for weeks prior to that very moment. As I started breathing the vapor, I knew God had me, he was holding me and I had complete trust that I’d come out OK.

Meanwhile, the waiting room was popping with people coming and going. A friend took this photo of my cheering section and when Rob showed me, I was so incredibly grateful to see all the support that showed up, especially grateful that Rob had a group of people to sit with him. Rob would also get text updates from the OR and share them with those waiting…here’s an example:

No one can quite communicate the feelings of that day, the waiting room or the conversation with the Dr. other than Rob, so I want to allow space for his thoughts here. I am so grateful to have him and for his ability to feel his feelings, be calm and present in moments like this and be exactly who and what I need.

Rob’s account of the day’s unfolding events

Leaving the pre-op room once AM’s surgery team was ready to take her back was unsettling. Thoughts of what this mysterious thing was in my wife’s brain, how long the surgery would take, how the surgery would go, and ultimately how AM would wake up from the surgery swirled in my mind. Would she be the same? Would this surgery take care of everything? Or is this the beginning of something much bigger than brain surgery? (Not quite sure what is bigger than brain surgery, and I don’t really want to find out.)

Upon exiting the pre-op doors, I felt God reminding me “I got this.” I had heard those words the week prior, and leading up to this date I was moving forward with this promise. But once everything got real (the IVs, the medical monitors, the beeps of AM’s pulse, the nurses and doctors), fear started to creep in. I’m certain this is all some sort of PTSD from everything that happened with Reagan and how life was dramatically changed in an instant on April 8, 2014, and I didn’t want to have this date seared into my memory as the day life changed again.

But Robert, I got this.

Alright God.

Entering into the waiting room filled with family and friends was definitely an immediate showing of this promise. There were lots of people in the waiting room, usually only one or two people per patient. But probably a quarter of the waiting room was filled for AM, and for me. I’m so grateful that during this time I was surrounded by people that were there for us and chose not to let the seriousness of the moment consume me. Conversations were had, jokes were made. Even if I wasn’t participating in the conversation, listening to them was certainly comforting and helpful.

Every time my phone buzzed with an update, I would update the room and text those that weren’t able to be there. Getting these updates were both helpful and frustrating. I couldn’t imagine having to sit for the eventual four and a half hours the surgery would take without hearing anything on how things were going. Knowing me, my mind would have begun to prepare me for every possible outcome—the good ones, the bad ones, and the worst ones.

So hearing things were progressing well was certainly helpful, but every time I received an update, I wanted to ask questions back to the OR. Obviously, this wasn’t possible, and that is for the best. The only person that could answer them was the surgeon, and I don’t want him chatting with me mid-procedure. But I still had questions.

The final update I received said “in the recovery room now”, and with that I immediately went to the waiting room’s front desk and asked when I could see my wife—AM would have been so proud of my impatience in that moment. I was told that the doctor would see me first, and then they would come and get me once she was transferred from recovery to ICU and was settled in.

When I was called in to the consult room, I asked my sister to join me so she could write down and remember the exact things the doctor said, as well as be there in case there was any bad news. The doctor came in and visibly looked exhausted, but was in good spirits. He explained that the surgery went well, that the lesion was actually a tumor called a meningioma (thanks Mel, definitely wouldn’t have remembered that) and it was removed, and that is was non cancerous. (Whaaat?!? I hadn’t even considered cancer as being a possibility. Whew!)

Once I had processed that info, I went back into the waiting room to update everyone. Everyone was relieved with the news, but I wasn’t. For me, a tumor was worst case scenario as a small section of AM’s brain would have to be removed surrounding the tumor. What was in that section that was removed? Was it speech? Would she be able to talk? Was it the ability to understand expressions and tone? (Because I speak sarcasm fluently, and that could be a problem.) I had asked the doctor before and again what was in that area of the brain, and the scientific answer he gave to the question is that section of the brain is typically dormant, so she could have a few lobes of the brain removed without any affect. In AM’s case they removed a section about the size of a sugar cube, so there should be no affect. But when it comes to the brain, there isn’t an exact science as everyone is wired differently. Just look at Reagan, being able to move and walk and do lots of other things all requires the use of her basal ganglia—but that was catastrophically damaged during her crisis, however, God has allowed her brain to figure out a way to work around that.

So while everyone found comfort in the news, I was still concerned on how she would wake up. Would it be the same AM that I left in the pre-op room hours earlier? Would she be someone different? If so, how different? All of that would be answered when I could see her and talk to her.

Robert, I got this.

Alright God, if you say so.

Walking into the ICU room was odd. I feel like I should have had more fear or timidity, but I didn’t. I remember boldly walking into AM’s room, expecting things would be okay. I knew she had just started to wake up, so I approached her and began speaking with her. I’m not certain when or what was said, but I do remember making a joke to which AM immediately told me to be quiet and said my jokes weren’t funny.

There she is. Same Anne-Marie. 

Recovery

The first couple of nights in the hospital after surgery were painful. But I had incredible nurses on the Neuro ICU floor and they were able to manage the pain and get me weird cravings like vanilla pudding at 3 a.m. and Rob was on point making sure I had anything I needed.

The morning after my surgery, my neurosurgeon stopped by and said I did great. I asked him how many staples he put in my head and he said, “just enough”.

Dr. Wehman has a pretty good sense of humor and he told me it didn’t hurt him at all doing the surgery so I should be just fine. I can totally appreciate a neurosurgeon keeping the mood light so my first request was that we take a picture together. He told me I’m the boss and obliged. I am so thankful for Dr. Wehman and his skills and I’m happy to be under his care for the next several years as he keeps an eye on my brain. I’d say surgery day was a big success.

Oh and one other thing…I had a closing, while in brain surgery. #bossRealtor #alwaysbeclosing #eveninbrainsurgery

Tim!

 

Mamma said there’d be days like this

The thing mamma never did tell you is when those days would come or how they would make you feel.

Like today.

IMG_4186

All I know is I left a therapy appt for Reagan and ended up at home in tears. The dishes were piled high, I looked at a massive pile of clean clothes on our sofa, that have just accumulated more and more as I’ve continued to slide them over to sit and watch a show.  Let’s not talk about the clothes in our bathtub, which has turned into a massive hamper. [forget I even mentioned that, OK?] My other friends with toddlers assure me, these things are normal.

The things I struggle with though are not just maintaining a neat and orderly house where I can find my keys on a regular basis, because I cannot find them. Ever. It’s the daily battles I have with Reagan. Including, but not limited to eating. Eating. The thing I love to do because I’m Italian and it’s in my DNA.

Rob and I dreamed about helping Reagan try all sorts of different food, we dreamed about having meals at home or at a restaurant with our daughter. We dreamed about food because we love it and we love meal time, and now it’s a chore. We did not dream about lugging a g-tube pump, formula bag, tube connection, backpack and formula. I did not dream about having to force feed my daughter food to get her to meet her meal goals. Reagan gets fed four times a day, and lately it’s become my least favorite parts of the day. There’s not much joy in preparing three or four items only for her to throw the spoon, keep her mouth shut, or pretend to take a willing bite just to spit the food into her hands, onto the table or act all gaggy mcgaggerson with it. And sure, maybe this is typical toddler behavior, but unlike most other parents, I can’t just say, “Fine, you’ll eat when you’re hungry!” No, you HAVE to eat. You HAVE to meet these meal requirements. You HAVE no choice. And if you don’t eat, I have to make it up with Pediasure in your gtube. One way or another, the menu goal will win. I don’t want it to be like this, but it is. What I want is for meals to be enjoyable, but I’m filled with frustration, that Reagan most definitely feels, so now, she seemingly eats for everyone but me.

Failure.

That’s the word that’s been playing in my mind. It started out this morning with our first therapy appointment to work on the speech device:

“How’s the talking, has she started talking more?”

Ummm…no not really.

In my head…“That’s why we’re here with this speech device. So a computer can do it FOR her because clearly we’re failing at helping her to talk, since she’s not.”

Another question (or four): Is she eating more, is her tongue going side to side to move food? Are they doing word prompts? But not just word prompts but prompts to connect consonants to vowels? Like this to help her say things like B aaaaaaaa–B-eeeeeeeee, as she moves her hands prompting Reagan’s mouth into all these different shapes to make sounds that form words.

That’s a lot of freaking questions, is what I felt like saying.

Um, I don’t know, she sort of says baby in her own way so I don’t know that they do all that. The other therapists that come to the home do different things. We have multiple therapists to focus on different things and they are good at those things. But when it comes for us helping Reagan put it together…

Failure

Overall, her speech device therapy was good…it just came at me like a bulldozer and I wasn’t expecting it. I came in with a positive attitude and it got flattened pretty quick. I know we need to work on A to Z and then back through the alphabet again. I know that. But even if I do that every day, 24/7, that doesn’t mean the result will happen faster.

After speech, I drove home for another therapy…Reagan’s feeding/OT therapist met us right as we came home from speech device therapy and I was basically in tears over the messy house, over the fact that I can’t have an adorable conversation with my three year old in the car as we ride about town. I don’t know what Reagan would say b/c she can’t say it. I don’t know how she’s feeling b/c she can’t tell me. I feel like I’ve been robbed of these awesome things. The things that make toddlers so stinking cute when they talk and say silly things they can’t pronounce or ask unknowingly inappropriate questions that make everyone laugh. I’m not experiencing that. I’m experiencing another mountain to climb. That combined with a food battle makes for one of those days my mamma told me about.

Rob left work, came home, spoke truth to me and over me, cleaned the kitchen and let me work for an hour and a half to get things I needed to do, done.

But this attack wasn’t done after lunch. No, sometimes Satan just keeps attacking. So I reached out to my friends. They spoke truth over me. And I called another friend while driving alone and aimlessly. “Come to my driveway now.” Is what she said.

And we sat in the parking lot of her community playground and I cried, and I swore and I vented and I tucked my head into her shoulder and just whispered that this is not fair. And she cried and sat and listened. But in only a way that she can do, she turned it around.

Her: How can you be happy at mealtime, Anne-Marie?

Me: I don’t know…It’s impossible basically because I can’t fake my feelings and she’s driving me nuts!

Her: Instead of being frustrated with Reagan during feedings, what if you said things like:

With Food:

  • Reagan, God gave us this wonderful food for us to eat so we can be strong.
  • Let’s be thankful we have this food to eat Reagan
  • God gave you a spirit to not give up. Don’t give up Reagan, you can do it and eat this food
  • Let’s be thankful we can eat and chew and swallow. God healed that part of your body Reagan so that you can enjoy the food that God gave us.
With talking:
  • Try to say (whatever word she’s trying to say). God gave you an attitude to keep going. You can do it Reagan, God will help you.
  • God has helped you with your sounds Reagan, so that way you can start forming words. Keep trying, you can do it.
  • God made you determined, Reagan. You can push through and make those sounds to form words. You know how to do it…
  • You are smart Reagan, show us what you know and let’s thank God for your ability to communicate with words!

Do you know what it’s like to sit with me when I’m spiraling in thoughts from the enemy? Few do. Most of the people I talk with say things like, “you’re so strong, I don’t think I could do that. How do you juggle all these things.”

I don’t…I combust and then there’s a small group of people who can take my F-5 tornado, let it whirl, let it touch down with destructive thoughts, and then can look me in the eye with their own tear filled eyes and speak truth to me. As we sat in the car, she wanted to end with saying things we are thankful for. We went back and forth for a while saying things we were thankful for in our lives.

All day, I was wallowing, and I didn’t want to come back to God…even though I just posted how RELENTLESS He is for ME! Some days it’s just hard, and that’s why we are supposed to lift each other up. We can’t do this life alone, especially in this messy, broken world in which we live.

Church!

This past Sunday we went to church which was a pretty deal because we haven’t been in over a year and a half.

Let that sink in. Eighteen months, no church with community. That’s 547 days and a lot of Sunday’s longing for a place our entire family could go.

When Reagan had her crisis, we felt homebound due to our new circumstances; no one was comfortable watching her for two hours alone, heck, WE weren’t even comfortable. That’s why Rob was basically home for three months and would sporadically hop into work, and when he did go back, I’d be calling in a teary, cursey storm about how I couldn’t do it and needed him immediately!

We were both depressed, but just because we felt the inability to attend church didn’t mean we weren’t having church within our home. You can read the God category of the blog to see how we totally relied on God for those 547 days (and still do) before we were able to go worship him with other believers. One of the most precious times for me, was when we would feed Reagan at 11 p.m. at night and Rob would read the Bible out loud. He read all of Psalms, Proverbs, the gospels and I think he made it through to Philippians or Colossians before we could eliminate the night feeding.

I told lots of my friends that I felt there was no place for our family at church…the church we attended didn’t have a special needs program. It’s not just that church, it’s so many churches who don’t have a special needs children’s ministry and the parents subsequently feel separated from the church because of it.

Having a special needs ministry at church requires work and thinking, just like any ministry within the church (missions, jail outreach, volunteer events, etc), it requires thinking and planning. I don’t know why more churches don’t offer or advertise their willingness to help special needs families. I understand it’s tough and not glamourous, but it is so important to be intentional about including special people into God’s family.

Rob and I attended a new church over the weekend that had a special needs program. It wasn’t filled with tons of kids, but they were ready. Reagan was the only one that day. She was assigned a “side kick” to be with her so she could be included with the regular kids church. The side kick is essentially there to be there for her one on one. She helps Reagan be included and protects her from any potential situations that may come up if she needs to.

I feel that while Reagan has a lot of special needs, for an hour during church, no one will need to use the g-tube, administer mediation, etc so she’s actually pretty simple. She’s got some mobility deficits and isn’t able to talk much, but she can show you what she wants and can communicate without words somewhat well (sign language is on the agenda for sure), plus she plays really well with others. However, leaving her alone with a group of kids isn’t an option either…she requires an extra set of eyes, ears and hands to help her.

What about other families who may have kids with more or less severe special needs issues; I wonder if they feel the same as we did? Left out.

I believe autism affects 1 in 64 kids, so if you’re not sure if the need exists in your congregation, let me assure you it does. The church we attended last Sunday said they are happy to have any child with special needs in their kids church as long as they feel they can safely accommodate the needs. That’s a great philosophy to adapt, and to take it a step further, if they can’t safely accommodate, how about a church team that comes to the family’s home to pray, sing or just be there for the parents. It’s exhausting when you feel there’s no outlet, no help outside the walls of your home, no real way to have a sigh of relief or rest with others who are willing to help shoulder the load, even just for a moment.

I think it’s really important these families have a cheerleading squad. For married couples who have a special needs child, eighty percent of them end in divorce. We have to stop that statistic. We have to do more. Believe me when I tell you, I wasn’t aware of the great need or that staggering statistic, but now that I am, I challenge you. If your church doesn’t have a program, start one. If you aren’t sure how, Rob and I are more than willing to sit down and talk about how that program could work.

Because after we entered the loud music filled sanctuary and assured Reagan loud music was great and not something she should be afraid of, we sat as a family of three in the sanctuary, and watched Reagan play on the stadium seats in a gym auditorium. We sort of sang and looked up at the screen with the song words and at the band and then back down to our bouncing toddler. When it got quiet, I took her fighting self into the hallway and took a little tour led by the children’s director. For thirty minutes I asked my questions, she answered and I pondered should I let her stay for a little bit? She clearly wanted to go play. She stood on the opposite sides of the kid’s gates and begged me with her finger pointing and grasping over my shoulders to go back in that direction as I carried her away.

So, I decided. Ok, Reagan you can go. I will let go of my tight grip and give you some wings. Her sidekick was ready. I walked back into the sanctuary, alone. Rob turned around with big huge eyes, I could tell they were tear filled. He had the most enormous smile on his face and a look that said where’s Reagan? Even though he already knew.

It was a big moment.

So I showed him this picture and said, “This is what your daughter is doing right now.” And we just sat there and sighed and held back tears.

Sunday school June 2015

“Do you want to go see?” I asked. And he absolutely did.

So we watched her play from the doorway and we watched her grow up a bit that day. She was so ready to be included. And when it was time to leave, she was kicking and screaming because she wanted to stay. We are so excited to go back and are trusting God to keep her safe and healthy. We dedicated to her to God when she was 10 months old, and He is going to honor our decision to do so, not just then, but continually every day.

A Whole New Set of Problems

You know how the Bible says not to worry about tomorrow b/c today has its own problems?

Rob and I woke up early today. Thursdays are early days anyway b/c Reagan has therapy first thing in the morning, and today was also early b/c I had to show property first thing. We headed out the door, kissed each other and started our day on opposite ends of town.

A couple hours later, I received a text from Rob to call him immediately. I was in the middle of showing a home and walked downstairs to give him a call. He proceeded to tell me how he was almost in a terrible car accident. A dump truck traveling in the opposite direction came flying across the median into the oncoming lane. He told me he saw a big plume of what looked to be black smoke/dirt come up from the median. He told me Reagan was sleeping in the back, which I found odd since she normally doesn’t sleep at that time. I am sure that she was sleeping so Rob was totally focused on what was ahead of him.

Ten seconds.

If Rob had been ten seconds earlier, he said he would have been hit. Both he and Reagan could have been killed.

Ten seconds.

If he had carried Reagan to the car from the elevator after therapy, instead of taking the extra time to allow her to hold his hands and walk. If she hadn’t fought him getting into the car seat…if he was speeding or rushing home. I believe those seconds saved both of their lives.

I didn’t wake up today and worry about something like that happening. A car accident like that would have brought a whole new set of problems that I hadn’t even thought about. So then why do I worry about what it will be like when Reagan goes to school. I worry about things I can think up and conjure in my head, but what about the scenarios I don’t think of.

And that’s why God tells us not to worry and to trust him. Today had enough wrapped into it, I don’t need to…no, I can’t think about tomorrow and worry.

When I got home from showing property I came running in and threw my arms around Rob and started crying. “What’s wrong!” he said. “You guys almost died, remember!” Rob and Reagan could have been walking streets of gold today and my world here on earth would have been shattered. We are not promised tomorrow.

Rob drove back to the accident and took these photos. I am so thankful that God kept my little family safe today.

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This is our life. Welcome.

We’ve had some pretty great weekends recently. Of course our life is not Instagram perfect, staged and always lovely, I’ll never pretend for a moment that it is, but we’ve stretched our boundaries, moved our comfort zone further out and have started exploring the world a bit more with Reagan.

Last weekend we went to the splash pad in our neighborhood. Reagan hated it. But it was a HUGE step for us (me especially) just to go. We went super early so no one was there yet. My issue with splash pads is all the kids are running and walking. When I drive out of my neighborhood, I see the parents just hanging out and talking to each other while their kids play with one another and splash about like it’s the best thing ever.

But for us, its’ a struggle. For every photo you see of Reagan standing, there are bunches of these.

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It is very much a struggle to always stand.

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She needs us to help her. She needs to hold on, and there’s nothing to hold onto at the splash pad except for us. With every new experience, I have to constantly fight through how the experience is different, process it as it’s happening, and then be OK with the fact that our experiences look different from the worlds, and from yours in all likelihood. It happens in split second moments, and then it’s re-processed throughout the day. Wow, we did a splash pad. It’s OK…it’s OK. It’s different, it’s real life, it’s OK. We can do it, we DID do it.

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Then, we went to the mall. But it wasn’t just any mall trip.

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We did the kind of mall trip that elicits stares. I have to admit, I WAS THAT PERSON who stared and can I tell you, that being on the receiving end of those stares is W E I R D. A group of young girls, like seven years old and under, walked by and stared at Reagan, and then turned when they passed us to continue staring. I don’t think I would expect much more from young kids…I mean, it’s probably something they’re not used to seeing. It’s up to those in their life to make a teaching opportunity of the situation. Hopefully they did. Not everyone was like that though, some people engaged us, but it was a totally different experience putting her in a walker vs. having her in her stroller. I felt treated differently, I felt those long pity stares at Reagan vs. every other time I’ve gone somewhere with her. In her stroller, all people say is how beautiful she is. This time, it felt like all people could see was her walker and not the awesome beautiful girl inside of it. She is not her walker. I can already see the next stage of struggles brewing…and as she grows, the differences will become more obvious. But you know what?

It’s OK…it’s OK. It’s different, it’s real life, it’s OK. We can do it, we DID do it.

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Going out is tough. I feel like we’re pioneers never knowing what we will encounter. And chances are, people with children who are differently abled might feel the same way. I can probably count on one hand the number of kids I’ve seen out in public, in a walker like Reagan. B/c it’s hard and that’s real life and it’s just easier to stay in, even though it’s equally as tough. Rob pushes me to do these things. He says: “sure, it’s hard. Maybe Reagan will only walk three stores, but maybe in six months she’ll walk the entire length of the mall and back. Just b/c it’s tough on us doesn’t mean we don’t give her those experiences.” [gulp] He’s right.

So we keep doing these things, not knowing if it’s hard b/c she’s two or b/c of all the other stuff.

At brunch the other day I’m pretty sure we were dealing with a typical two year old.

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Get this girl a pair of uneven parallel bars because her form is AMAZING!

I can tell we’re headed into a new season…it’s just starting. Walkers out in public, brunch handstands, special needs parents at the splash pad. This is our life. Welcome.

Here we are, Juggernauts

“Be exalted, O Lord, in your strength; we will sing and praise your might.” – Psalm 21:13

the very next verse

“My God, my God, why have you forsaken me? Why are you so far from saving me, so far from my cries of anguish? O my God, I cry out by day, but you do not answer, by night, but I find no rest.” – Psalm 22:1-2


“Robert, your ‘normal’ would destroy most others!”

That statement that a colleague emailed me packs so much truth about our lives inside those seven words, and even though we live it every single day, for every single hour, even we can forget it. But that’s what ‘normal’ does, it slowly grinds down the rough edges that remind us of our struggle until we are used to it, until we are dull to its pain. We forget that what we are doing day in and day out in caring and raising Reagan is hard, how it is impossible to do everything for her each day. We have to prioritize what is required for her (meds, formula, food, sleep) with what we need to help her work on (way too much to list in parentheses) along with loving her and having fun and trying to give her the ‘normal’ playtime any other two year old would have.

There isn’t enough time each day to do all the things we are told to do, so sometimes the homework we are given by each therapist (there’s five) doesn’t happen. So when one of them asks their seemingly innocent question of “have you been working on this or that” and we haven’t, we feel like failures. We feel like failures because we have homework to help Reagan simply catch up with her peers, but there isn’t enough time or we don’t have enough energy to do everything. And that can ruin our day faster than anything and it brings us to tears and our knees under this crushing weight.

But here are a few truths we have to remind each other of almost every day: 1-God placed Reagan in our family for a reason, 2-as parents, we are juggernauts, and 3-we are not alone even though we feel completely isolated. And that second truth is important for us to remind each other, because when we feel like we have failed, we need to remind ourselves that we do not have any equals amongst those we know.

[Did he just say that? Oh, that sounds so prideful!]

It’s not prideful, it’s factual. It’s like a high schooler complaining they have no free time to a single mother of five – it’s two completely different playing fields. Truthfully, we don’t want to be on this field or have to be a juggernaut–but we have to be because we have been called to do so.

And we love Reagan and are going to the ends of the earth for her.

Outback

 

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The day we got our daughter’s MRI results

After Reagan had her metabolic crisis (due to her genetic disorder, Glutaric Acidemia Type 1 or GA-1 for short), she had an MRI…and while we were waiting for the results, I just knew something was so very wrong. When Reagan woke up briefly, probably 18 hours after her seizures, she smiled but was so limp that she had a hard time holding her head up. Our close friends were in the room when she woke up and I was so nervous that she would have another seizure. I already had two of my closest friends witness her seizures in the hospital room right after being admitted…I couldn’t bare to have six more watch it too. I just prayed, “please don’t let her have a seizure, Lord!”

“Rob, something is wrong,” I said. “She can’t hold her head up.”

“No, Anne-Marie…it’s because she’s on all sorts of medications that are keeping her sedated, plus she has all the wires on top of her head for the EEG, it’s probably heavy.”

It’s not that heavy that she can’t hold her head up, I thought to myself.

That evening our genetics Dr. texted that she was coming to visit and she had the MRI results.

“Rob, why would our genetics Dr. be coming to give us the MRI results and not the neurologist? It can’t be good news.”

I think deep down Rob knew this, but neither of us really wanted to believe it. What she told us next would forever change our lives. It would change the way we prioritized everything.

“Does Reagan have brain damage?” I asked.

Yes. 

Rob and I melted into the floor and into each others arms and our tears just flowed. I felt like I couldn’t breathe…my biggest fear in life was happening.

“Is it bad? Is it a lot of brain damage?”

Yes, it seems to be quite a bit.

Our friends were coming to the hospital and we met them in the hallway of the hospital and just sat weeping. It didn’t matter who saw us or who walked by. No one cared. Time stood still, and we wanted to go back to before. Have you ever been given such devastating news in your life? I’ll never forget our friends faces, the questions we asked Dr.’s…the answers we got. The two weeks in the hospital due to Reagan’s metabolic crisis are forever seared into my mind. I can replay every moment as if it were yesterday.

What we would hear from the attending neurologist the following day was that Reagan’s entire basal ganglia was damaged. The main job of the basal ganglia is motor control and the fluidity of movement. So if you want to pick up a pencil, that’s the portion of your brain that allows you to do that and allows you to use gross and fine motor skills to do a specific task. The Dr. told us, Reagan will never walk. She will likely never talk, maybe never smile. They also told us she had a movement disorder called Chorea which made her have uncontrollable flailing movements. The diagnoses kept unfolding during our hospital stay and they were always “so rare” that there wasn’t much research and information out there about what medications could help…especially for a 13 month old.

“Can she learn?” we asked.

She should be able to learn…the other small sections of her brain that are damaged might affect how she learns, but she should still be able to learn.

The neurologist went on to mention that we couldn’t do brain surgery to remove portions of her brain b/c the damage was too extensive. I’m sorry…what? Removing a part of the brain is an actual thing?

Because of Reagan’s genetic, metabolic disorder, when children do have a crisis, triggered by a sickness (she was sick the week before with RSV and in the hospital for eight days), the amino acids build up in the brain and attack this particular portion of the brain, the basal ganglia. And while Reagan was diagnosed at newborn screening and we did absolutely everything possible to prevent this, we just can’t prevent everything. Her body will react how it will react…even if we knew brain damage was happening, there was nothing we could do to stop it. The basal ganglia hit was the most devastating…and any subsequent and otherwise minor brain damage, was due to the three seizures Reagan had.

I will never, ever forget what the neurologist told my husband and I. 

“Your job, is just to make her comfortable. That’s your job as parents now.”

The words have echoed for the almost nine months that it’s been since Reagan had her metabolic crisis.

As I think back to those really, really dark days, and knowing what I know now, I would want to tell myself a few things…such as, Dr.’s don’t know everything. They DON’T! Yes, they are more schooled in the field of medicine and they have experience and have reviewed case studies, but they don’t know everything. They didn’t create my daughter, God did…God knows EVERYTHING about Reagan, so rely on him. Pray harder than you ever have in your life to the Physician who knows what happened in her brain, why it happened, and how Reagan can overcome it.

No one will understand what you are going through. The ONLY person who will 100% understand is your husband. You will need to rely on each other more than you ever have in life. You will get upset and have disagreements, but never turn your backs to each other, always embrace…you two are the only ones who can relate to one another.

People will say stupid things, because again, no one understands what you are going through. That doesn’t mean they don’t care, it just means they can’t quite comprehend your pain, your extremely tough road, and no matter how they try, they are not walking it, you are. Kindly let people know if something is not helpful and let them know how they can be there for you.

It’s OK to not have it all together, no one has it all together (do you hear me? NO ONE has it all together). Talk to a counselor, say the things you are thinking that you feel you can’t say out loud. Say them in a safe environment. Process those raw emotions; your daughter needs you to deal with your pain and loss properly in order to help her overcome her new challenges. She needs you, all of you.

People will also surprise you. Your friends will raise money for you, go to bat for you, call your insurance co. out on social media when they are going back on their word…your family will have a cheerleading section bigger than you can imagine because they love you. They love Reagan.

You will replay the 13 months leading up to Reagan’s crisis and ask yourself over and over if there was something you did wrong, something you could have changed. There is nothing you did that was wrong…you had three spreadsheets for tracking her meals to count every bit of of food put into her mouth for crying out loud! This was going to happen. God had a plan bigger than GA-1 and as humans, we can’t control every facet of life. You. Did. Nothing. Wrong.

God has asked you to walk this ridiculously tough road for the benefit of you, your daughter, other people…you may never know the extent of it. But your daughter will touch lives in ways you could have never imagined. It doesn’t make it easy, but it lets you know there’s purpose, even through pain.

Don’t give up. When you come home from the hospital, it will take you 30 minutes every time it’s time to administer medication, just to figure out what medication to administer. A few months in though, and you will do it in under five minutes. You will figure out the G-tube. And your daughter who used to eat and drink with no problem, will eat and drink again. It will take time, it will take patience, but you will be washing bottles and bowls and spoons again soon.

You’re going to be insanely jealous of all of your friends with kids who are “normal” or “healthy” and typical. But you can’t punish them for the road you have been asked to travel. Your friends still want to be there for you, and because of Reagan, your friends are teaching their children how to have compassion, how to love and how to pray for healing. Reagan is teaching other children things that are invaluable.

Reagan will crawl, she will stand, she will cruise and she will make strides. She will make the strides that the Dr.’s said she would NEVER do…and she will do them in months.

You will have moments where you want to give up. But don’t. You will wonder if all the therapies are actually working. You will go to 204 therapies from May through December. And I can tell you that they are working. All of your exhaustion, sleepless nights, screaming into your pillow that “this is not fair” will make a difference in Reagan’s life.

At the end of the day, it will be worth it. It’s only been nine months since Reagan had her metabolic crisis and she’s touched countless lives, gained many milestones back and still provides joy. She laughs ALL the time with an infectious laugh, one that redeems all the trials. Reagan is a bright light; Reagan is proof that God still performs miracle.

Miracles are hard. They are not always overnight.

Reagan is worth all the hard work, all the tears, all the unknowns…everything you are about to embark on as a result of these new diagnoses will be worth it. You can do it, with God’s help you WILL do it. AND, life has seasons. Hard seasons don’t last forever, they don’t. There will be brighter days, sun will shine, God will redeem what the locusts have eaten, and he will continue to do so. You will smile again, you will have margin in your life again, you will have fun, even though your entire life looks 100% different than you ever imagined, you will love it.

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Photo by Kristen Weaver Photography

To view Reagan’s year in 2014, click the video below.

Let’s sleep together

What I mean by that title is…as a family, let’s all go to bed at 8:30 p.m. and…SLEEP!

Tuesday Reagan had her Nemours appt. and b/c she’s doing well eating (she has about 150g of food/day) and b/c she’s growing like a weed, and b/c she’s been able to tolerate seven oz. of formula via G-tube at most of her feedings, we requested to increase her food allotment and lower her formula volume by two oz. so we could try to fit all 28 oz. of formula in during the day and eliminate her feeding at night.

Well HALLELUJAH our team at Nemours agreed. They have been so pleased with her progress and so have we. It has been a loooooong road these past eight months. It has been the deepest valley I have ever known in life and I’m pretty sure I can say the same for Rob. So getting the news that we can go to bed at whatever time we want and sleep…is like the best Christmas present ever.

So, on Tuesday night, when I rocked Reagan for what is hopefully the last time while she’s feeding at 10:30 p.m. I got a little sad. Aside from being beyond exhausted for these past eight months and running on fumes I have loved rocking her. She’s still, she’s peaceful, and we fall asleep together rocking. She smells so good. She is so beautiful. I have brushed her hair, rubbed her feet, kissed her forehead and soothed her cries. [Full disclosure: I’ve also been thrown up on].

Our bond was strengthened during those night feedings. I needed them to reconnect, to learn about Reagan again. For the first few months Rob read all the Psalms and all the gospels. And as I type this I am actually getting tears in my eyes b/c those were some of the most special moments as a family. They were quiet, they were deep, it was just us (and Bauer tapping his paws in and out of Reagan’s room).

This last night, Reagan held on to my finger, just like she did when we met for the first time. She rarely does this.

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As she held my finger, I felt her heart beating. I will always remember that. The last week and a half, Reagan’s been sleeping through the night in her crib. She used to wake up about 20-30 minutes before her night feeding so I’d end up rocking her for almost an hour as it would take time for her to calm down and for Rob to get her formula ready. Her feeding would take 20-30 minutes depending on how much she needed to finish out her allotment for the day. Adding to our exhaustion these past few months, Reagan would wake up at 2 or 3 a.m. and cry for an hour and then be up at 5 or 6 a.m., coupled with just a 40 minute nap during the day. But this past week, she’s just been sleeping. It’s like she was letting us know, I’m ready to sleep again. I’m ready to keep growing and becoming a big girl.

I am so proud of her. I am proud of Rob and I. I am so thankful that God has helped us through these last eight months. There is no way we would have made it out alive and still loving each other without God. #prayerworks

EEG are you with me?

On Thursday Reagan was scheduled for a 24-hour EEG. Rob and I had been dreading it ever since it was scheduled. So much so that we rescheduled it for a later date. But Thursday finally approached and we geared up to go. We brought the bouncer, the pak and play, her high chair, a million toys, movies, books, the laptop, the iPad, towels, sheets, a comforter, pillows…I mean, we were ready for anything.

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you drove me to do what?!

We see what I consider to be the BEST pediatric neurologists in Orlando, but their office is straight from the 70s and doesn’t seem to have changed since built. Rob and I said if the EEG place was like their office, we’d be leaving. We got there and the room they put us in originally was SO small, and paint (probably from the 70s…can we say lead based?) was peeling off the wall. The tech said, “how’s this?” I mean, the look on our faces seemed to be conveying “are you kidding me? there’s paint peeling from the wall,” even still, it was about one step above the Dr.’s office so we said, “I guess this will have to do.” But then they made us an offer for a room down the hall that they said was the same size…it was significantly larger. We took that room, and the paint was intact.

I confirmed with the gal checking us in that the EEG techs would not be doing the lights and strobes that they did in the hospital to invoke a seizure. She said the would be and I said, “Nope, you won’t.” We had discussed this with our neurologist and per our discussion previously, he did not want to do that sort of test on Reagan. I think it’s pretty common for there to sometimes be a disconnect btw the Dr. and where you might be having a test or procedure. What Rob and I have learned is to confirm what you know is supposed to be happening AND, if it’s not right, you let them know how it’s supposed to be, or leave. Reagan is our daughter and we are giving you permission to do certain things, but not everything.

While putting the sensors on Reagan’s head, the tech asked why we didn’t want to do the lights, and I told her b/c we didn’t want Reagan to have a seizure. She said, “well that’s what you want, you want to see if she’s having seizure activity, that’s the point of the lights.” Maybe she didn’t understand that we didn’t want to put Reagan through having a seizure…I looked at her straight in her eyeballs and said, “that’s what we’re trying to avoid…we don’t want her to have a seizure,” she shrugged like that was a dumb decision, but Rob and I both know it was the right decision for Reagan and for us.

So…after 20 minutes of Reagan crying and looking at me with eyes that said, “please SAVE me!” she was hooked up and we were linked together in a 8 x 12 room for 24 hours.

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guys…i’m watching my shows.

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we played a lot of defense. a lot.

Reagan actually napped for an hour and a half which was a pleasant surprise. For reading an EEG, you definitely want awake and sleep time so we were happy she gave them (but really us) a nap so early on.

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of all the toys we brought, this IV pole that we use for her feeding bag and pump was her favorite toy. Maybe it’s b/c it’s fancied up with braids, I don’t know. We got a compliment on it…a compliment on our IV pole. Those techs have to get out more.

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Rob giving this EEG a thumbs up.

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yes, there is an outfit change…diaper disasters when your daughter is hooked up to 30 wires are super fun. #bohochic #eeg #swag

But seriously, you can’t appreciate the hours of entertainment the IV pole provided until you watch this video.

Onto another topic, the food situation. The EEG place provides food for you, if you want it, which I think is incredibly nice and generous. But I did feel like were were in a teen lock in. When have you ever seen so much junk piled into one kitchen?

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moon pies. I can count on ONE hand, the people I know who like moon pies.

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the lunchable situation was out of control. An entire shelf dedicated to Rob Dydrek and his lunchables.

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I know why there’s so much chocolate and carb filled stuff…you are in a square cage, willingly, and there are certain things that will allow you to survive and that’s what the kitchen was stocked with. I had chocolate wafers, an ice cream drumstick, Doritos, soda…survival was paramount and these items are part of your survival kit. Along with both Rob and I making separate trips to Publix. Fresh air is also important.

When 7:30 p.m. came and Reagan went to sleep, we were shocked…we did it. She’s asleep for the night, we made it. It was such a feeling of accomplishment. It lasted for three and a half hours. I had to sneeze…I sneezed three times, right around when it was time to feed Reagan at night, and that was it. She cried through her feeding for an hour. She was HOT, the room had to have been 78 degrees even with a box fan in there, plus she had a wrap on her head. It was uncomfortable, unfamiliar, and maybe even kinda scary for her. Around midnight, I went up to the desk and said we wanted to leave. The tech obliged…there was no discussion she simply said, “Ok…I’ll be right in to take the stuff off her head.”

Reagan was so sweaty under that cap. And she was SO happy to have it off.

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time to go home…we made it 16 hours.

Here’s what Rob and I discussed about not making it the full 24 hours. We succeeded. Sure, it’s ideal for the Dr.’s to do a 24 hour EEG. Why? Well, that’s what they say they prefer. We did our best. The EEG saw play/awake time and sleep time brain activity. At the end of the day, we are Reagan’s Mom and Dad and if we say the test is over, it’s over. We learned that in the hospital when she had two tubes up her nose, one was testing for reflux…they wanted that to be 24 hours too…but at around the 20 hour mark, she was done. It’s Ok to read your child’s cues and take action on their behalf. That’s how you advocate. It’s OK that we made it 16 hours for the EEG and not 24. She gave them 16 good hours…we didn’t need to force her to give them a miserable eight additional hours.

Not only are we learning Reagan, she’s learning about her parents. She knows that sometimes we take her to appointments and tests that she doesn’t like, but at the same time, we know her limit and will listen to her over a Dr.’s ideal scenario.

I have never seen Rob pack a car so swiftly. And when Reagan got buckled into her car seat, she gave a huge sigh of relief. She was even happier at home and elated to have a bath, even at almost 1 a.m.

She did great, we did OK. So glad it’s over…we don’t know the results of any of it, but are praying for normal brain activity. I’ve been praying lately for more talking and babbling, and God has been answering that prayer, just like he answered our prayers for Reagan’s body to begin working as intended in regard to eating, swallowing, etc. She hasn’t vomited since 8/20/14 and has been eating pureed foods and drinking water (sometimes formula) consistently. Thank you Jesus for getting us through difficult days and giving us brighter days.