The Heart (and the surgery)

I can’t believe summer 2019 is coming to a close. What a wild adventure our family has gone on; our hearts have been stretched, broken and uplifted. We’ve stepped outside of our comfort zones, seen new things and watched as Reagan’s grit and personality continues to unfold with every new word she’s able to say.

Going to DC was feral and hard, but Wyoming was redemptive. It wasn’t perfect, it wasn’t everything I hoped it would be and imagined in my mind, but it was amazing. My personal goal for the second half of 2019 is to bond more with Reagan and to deepen our relationship. That’s why DC hurt so bad, there were literal slaps in the face. But I had to push through. As a family, we HAD to keep climbing.

And then we made it to the mountains of Wyoming and I think they are the prettiest mountains I’ve ever seen.

Wyoming photos by Peter Lobozzo

I’m so glad we did these photos. Ever since Reagan was a baby, we’ve had photos taken regularly, and it started when I purchased a year photo package from our lovely friend and photographer Kristen Weaver.

Right after our last photo session (below) everything changed.

Pictures would be different. Life would be different.

Photo by Ashley Blahnik of Dearly Photography

But pictures would be the only thing to help us remember the seasons we were in, the feelings we felt and the things God was doing in our hearts in those moments. And this last photo above, is about six weeks after Reagan’s crisis…her grit never changed.

Photo by Katie Williams

Now I’m obsessed with doing pictures when we go cool places or when big things happen. And who could ever forget the Canada photos when Reagan lost a tooth in the forest?

Whether we were in a valley or climbing a mountain, whether we felt storm clouds or sun rays on our face, the pictures capture the season and remind me of what our family was facing in those moments.

The Wyoming pictures will remind me of how a few weeks before we had some of the toughest weeks with Reagan and a really awful family vacation. It will remind me that we pushed through and got on another plane filled with hope for a better vacation, which we had. And it will remind me that just two short weeks after getting back, Reagan would be having heart surgery.

Yes. On August 8, 2019, Reagan will have heart surgery to repair her Atrial Septal Defect. We’ve always known she’s had this, ever since she was two days old. But if you know our story, you realize that sometimes there are bigger things to overcome than heart surgery, which is kind of crazy. Reagan’s heart surgery has taken a back seat for many years in the hopes that the hole in her heart would close on its own, it did not.

I am scared.

My heart hurts.
Look at this girl.
She’s come so so so so far.
She’s independent.
It is amazing.
It is hard.

Rob calls this her “Sound of Music” photo

Rob and I have allowed our hearts to have emotional and spiritual surgery as God has taught us new things, opened our eyes, minds and hearts to how he views us, how he views her, how he views his children, the world.

Even though I’m scared, God is with me. He’s with our family. One of the most memorized Psalms, Psalm 23, talks about how even when we walk through the valley of the shadow of death, we don’t have to fear any evil, because God is there with us. When things are scary, God will camp with you right there, he’ll prepare a table and sit down with you, while your enemies watch. Life includes shadow of death times, and we’ve had our fair share.

So after fighting infertility, pursing adoption, receiving a genetic disorder diagnosis, going through a metabolic crisis and seizures, being given a rare movement disorder diagnosis, placing a feeding tube, and the myriad of issues that come with all that, combined with my own brain surgery two years ago, we are diving into heart surgery this Thursday and Rob and I really do covet all of your prayers.

Isn’t this life so crazy? Like no one says, “I’d like to say yes to all of those things above.” But God…he just knows what he’s doing. If our family can go through all of that, and still say YES to God, YES to Jesus, and put our faith and trust in His hands, you can do that too. I can trust God with my present and my future and I can trust whether I’m eating in the presence of my enemies or my friends, he’s got me.

I whole heartedly believe Romans 8:28, “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”

We will always walk forward. Our family motto is: Never Backwards. Always Forward. Always. We will always be standing alongside Reagan as her story unfolds, just as I know so many of you stand with our family as we share this unbelievable journey. Thank you for that. Please pray for Reagan’s heart, her surgical team and our hearts too. Watching this sort of stuff go down with your child is one of the hardest things a parent can do. Thank you for your prayers.

xoxo

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.

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!

 

One day until Surgery – 4 of 7

7/30/17

It’s one day until my surgery. This past week I’ve felt pretty good…the countdown was running in the background of my mind while I kept super busy with work, closings, showings, walk throughs, an EEG and a three hour pre-op appointment, not to mention the extreme patience often needed during Reagan’s v e r r r r y lengthy bedtime shenanigans.

As I sit writing in bed this Sunday morning at 7:30 a.m., I know that tomorrow at this time I’ll have an IV in my arm, maybe going to get a final MRI before I’m given anesthesia and am headed back for surgery. I know I’ll have a small posse of friends who want to pray over me before surgery. We’re all hoping and praying the surgery is successful (obviously) and that we get more confirmation it was the right move. We’ve been given confirmation over and over as we walk toward surgery day, I just feel so anxious thinking about being motionless in an anesthesia dreamland, while a crew in the operating room helps the surgeon with whatever he needs in getting a look at the lesion in my brain.

I’m thinking about when the Dr. comes out to give Rob the news, how he’ll feel, what will the mood be like…will everyone breathe a sigh of relief? I’m praying no terrible news has to be delivered, I pray the surgeon says, “we got [insert whatever the thing is here] and she’s going to be fine. she’s already waking up and acting herself.” I don’t want to give life to alternative scenarios.

Even as we walk through the valley of the shadow of death, we fear no evil, b/c God is with us. Right? I’m saying this to myself now…I was about to write even though we walk down this difficult path, we know God is with us. And then verses I’ve had memorized since I was a five year old kid overlap my earthly words and a higher way and thought supersedes my own.

As a believer, I am so glad and thankful that if for some reason things go unexpectedly, that I’m saved and loved b/c Jesus first chose me and I chose to accept his gift of life, salvation and eternity in Heaven. It’s a gift that we have to accept. I can’t imagine if I didn’t have Jesus, how I’d feel…death is not something I’m scared of b/c of the complete confidence I have in Jesus and in what he did on the cross. If you ever wonder where you’d spend eternity if you die, and you don’t have confidence in the answer, man…GET the confidence by accepting JESUS.

Even though for the last several years things have been really tough for our family and just the opposite of what we anticipated in our minds, I pray that we will come through this hurdle unscathed. And not that we are like Job from the Bible or anything, but we understand suffering, questioning, stomping our feet and ultimately surrendering to God’s plan. I know that if we continue to stick with God, he will reward us, whether here or in eternity. I have to believe it will be both…b/c even when Job went through everything, the last chapter of Job says, “The Lord blessed the latter part of Job’s life more than the former part.”

Maybe one day when Rob and I are 50 years old, we’ll look back on all the trouble we had to go through in our thirties and say, but man, look at what God did, look what he taught us, look how he restored Reagan, look how he moved us toward finding out about your brain when we should have never known. Now I understand…I know God’s ways and thoughts are higher than ours. What he knew was coming in our thirties, now we see here standing in our fifties. That’s why you stick when trouble comes, don’t run, lean in. Do the hard work, rewards are coming for your faithfulness. God has shown it time and time and time again over the course of thousands of years. I want to go with his track record for redemption and success, not my own. We’re sticking with God, with each other, forever.

Never Backwards

On Tuesday I drove down to the medical records department for Arnold Palmer Hospital. It’s been three years since Reagan’s crisis and I remember so many specific details from that time.

Driving down the 408 toward downtown, I started getting teary-eyed. I remember driving down here with my neighbor while Rob rode in the ambulance with Reagan.

I remember walking around the lake in front of the hospital, moving from waves of despair to hope.

“I need to get some medical records.”

The gal points me to a clipboard with the pen that’s married to it and tells me to fill out the highlighted sections. It’s amazing to me, that here in this building, a block from the hospital, my daughter’s file sits. All the information from her stay, it’s right there. I feel like I’m a Jeopardy contestant: “What are the medical facts from April 2014?”

I paid $6.92 for a CD, that has MRI images of Reagan’s brain damage; looking at those images and hearing the results changed our lives forever. All the worst moments of our life are from that hospital stay, and this little disc of records has every note and image compartmentalized in folders, written in a language I don’t understand. That records department keeps the facts from cases that go in and out of that hospital, telling a story on paper, but never the full story.

When I left, I drove around the hospital complex, looped around the Ronald McDonald house where we stayed for weeks, and I allowed myself to feel grief for that time, thankfulness for now, and went home. Mentally I was purposeful to remind myself, Reagan’s crisis is not her identity. Her abilities and disabilities, that’s not her identity either. Those records do not define who she is. It’s part of her story, part of our family’s testimony, but not our identity.

God’s been teaching me a lesson in identity recently, and that is, that my identity is not wrapped up in my abilities, my performance at work, how I parent, how I am as a friend or a wife, and my identity is not in my successes or failures. My identity is in Christ and because of that, I have the ability to surrender to his purpose, his will and his love. Surrender in this sense is not being weak, it’s being free. Free to say, “Ok God, that didn’t happen how I would have hoped, but I know you have me on the best path for your Kingdom.” If my identity is in my sales numbers, what happens if the market goes south? If my identity is wrapped up in my performance, performance of my friends, family, Reagan, then I’ll need everything to go well to feel valued, to feel a purpose. That would be incredibly exhausting.

I know that God causes everything to work together for the good of those who love him and are called according to his purpose (Romans 8:28). Having your identity is in Christ, allows a more peaceful life, regardless of circumstance. This is what I’m striving toward, I am (continually) learning to trust that God has my best in mind and that his purpose for me was determined before I was ever on this earth, and his purpose and will is what is best. I have to trust that, because what my eyes see and what I understand are not the same as what God knows.

Parenting Reagan has been my biggest challenge and lesson in trust, humility and surrender to God’s purpose. Of course I can look at Reagan and know that her identity is not in her crisis, she is so much more than her struggles and achievements. She was made for identity in Christ too, and she was made for us to watch God restore her! He’s used such a terrible thing, and repurposed it for his glory, that’s what God does and only he can do it.

Never backwards. Always forward. Always.

It’s currently our family motto. Because living in the past and in the what ifs, is not the abundant life God talks about for us, or for anyone. Living with our eyes fixed ahead and up, is the direction God is leading anyway. Never backwards. Always forward. Always.

 

It Wasn’t a Detour…

Earlier this week I had a Facebook memory come up…some memories are horrible, and they’ll always be horrible. I don’t like the reminder, Facebook.

This was the memory.

It’s a blog from two years ago, and in painstaking detail, I write about our eight day hospital stay. When I read it, I think: “maybe that’s where we messed up…maybe we should have pushed for this instead of that. This is where things must have changed. Should we have been discharged from the hospital or stayed longer? Would that have made a difference?”

I text the blog and all these thoughts to Rob, but I told him that I already knew the answer. It was God’s plan all along. There wasn’t more that could have been done. I’ve done that dance for two years and I don’t do it anymore. I land on the fact that this was God’s plan for Reagan and for us. Who are we to thwart God’s plans? We can’t change them…Reagan’s days were determined before I was even born.

Rob and I are the only ones who know exactly what it’s like. Yes, we had some family and friends who were there, but Reagan is not their daughter. She’s our daughter.

So Rob sent me these photos as we took a break from work in the middle of the day and decided to take a memory lane detour for a few minutes.  And realize, this is so hard for me, for us, to re-live. It’s hard for me to look at photos of before because, I start thinking we should have done more, and I start thinking that I’m a failure for not being able to save her from what happened. And I start to wonder what sort of things she’d be saying, I start thinking I’m missing out on who she might be.

But that’s a lie. Because this is who Reagan was created to be.

On March 22, Rob played with Reagan outside and captured these photos:IMG_9136IMG_9137

Reagan is strong and healthy and holding a straw with her mouth. She can’t do that now. Everything seems perfect. The sun is shining, she’s got a big flower bow and a shirt that matches the sunshine.

On April 6th, we came home from the hospital, and this is a picture from a video we took in the car on our way home.

IMG_9138

I told Rob that she looks confused, which could be explained by being in the hospital for eight days. And her mouth is open more…this photo makes me wonder, was the damage already happening? Is the reason she didn’t want to drink her bottle because she couldn’t.

The photos below were on April 7th. I don’t even know if I’ve ever seen these photos since they were on Rob’s phone, but I told him that she looks weaker…especially the one of her laying on the blanket. IMG_9142 IMG_9143

Since Reagan wasn’t drinking, we took her to one of the most renowned therapists in the area, Deborah Beckman. And on April 8th, on the DAY she had her crisis we had an appointment in the morning and she said the strength in Reagan’s mouth was that of a four to six month old. Reagan was 13 months, drinking and eating, like a child her age is supposed to.

Looking back at everything like this in a cumulative manner, Rob and I know that these were signs that things were changing. But just because something is happening, doesn’t mean you can stop it. I’ve said it before and it’s true, even if we knew damage was happening in her brain, there is nothing on this earth, short of God’s hand on her, that could ever stop it. There’s no medicine, no machine; there is nothing that could have prevented it.

The hardest photos to look at side by side are the next two.

April 8, 2014 at 5:26 p.m.

IMG_9139

April 9, 2014 at 12:28 a.m.

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What we didn’t know then, was that Reagan had already had the basal ganglia hit to her brain. The only thing we knew was that she had one seizure. The seizure was due to the basal ganglia being completely damaged. It’s like her brain was short circuiting trying to figure things out.

There are other photos and videos. Videos of her flailing that I posted on the blog back in 2014…but this photo gets me every time.

IMG_9141

You can see a million things in my eyes, even though I’m looking away. I was so angry at God. I was so mad and pissed off at him, and I was so hurt and I just wanted things to go back. I felt like I was living in a nightmare, because I was. It seemed like the only time my eyes stopped leaking tears was when they were asleep. And then there’s my mom, covering her only grandchild in prayer and love, and extending it to her only daughter. This photo shows the broadest spectrum of emotions between mothers and daughters.

After we got Reagan’s MRI results, I wrote this blog. It’s one of the most emotionally raw things I’ve written and the only time I’ve ever dropped the F bomb in the blog (I think). I remember writing it at the Ronald McDonald House in a blue room with insanely high ceilings and beautiful wooden beams, located in the the top corner of the building. I wrote it, never re-read it just hit “publish” forgetting all about the fact that I just let that expletive fly. But it was so real and totally accurate to the mood of that moment. Re-reading it, though, there are so many things we were told we would never do with Reagan that we have done! Like take her to pre-school, a regular pre-school, go out to dinner, breakfast, etc. She definitely is one of the bouncing kids when she goes to the hospital for blood draws, and while she’s not talking yet, she tries to talk, she signs, and is using her “talker” device to help tell us things. And she mostly tells us she wants to eat a veggie burger.

Two years.

I can’t believe it’s been two years since her crisis. Seems like yesterday but at the same time, a lifetime ago.

Today Reagan is doing everything we were told she wouldn’t. Walking is certainly one of her greatest achievements…she started at two and a half years old and continues to get stronger every day. She eats, she can feed herself finger foods and use a fork somewhat consistently. She drinks her formula out of a WOW cup, not all of it but on a really good day she can drink almost half. She communicates and she understands 100% of what’s going on. And she’s still got that sass.

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She loves to play dress up and she loves to climb. The coordination in this video is mind boggling.

The prayers that have gone up to God for our child…to say we are THANKFUL for your prayers doesn’t seem adequate. God is so amazing to listen to our prayers and then ACT upon them with healing power because of our persistent pleading. Our specific prayers now are for Reagan to talk, clearly. For Reagan to be able to have the motor planning pattern and correct movements in her mouth. This will help her not only talk, but eat and drink more. She’s a complete miracle child, God’s hand has definitely been working in her body because of your prayers. So please, please don’t stop.

I know this was a heavy blog, but I want those reading to know that Rob and I are in a good place with Reagan. You don’t have to feel sorry for her or for us. Instead stand in awe that God still performs miracles today in 2016 and you all are witnessing it. God’s totally in control and who knows why we’ve had to take, what most would view as a life detour. It’s not a detour if it’s the way God had planned all along.

Surgery Emotions

Rob and I took Reagan to the ENT today b/c of the multiple ear infections, constant fluid in her ears and two failed hearing tests. After a check today, surprise surprise, she has fluid in her ears. They also asked if Reagan snores and we said yes, so we get a bonus surgery of adenoid removal. And it’s happening tomorrow.

surgery
Rob and Reagan at the children’s hospital earlier this week for her regular blood draws.

I’m a little weepy. I know this is a routine surgery, but things with Reagan are anything but routine. Two years after being in the hospital for her metabolic crisis and brain injury, we’re right back there, almost to the day, having surgery.

On top of that, I’ve received some hurtful messages from people recently. And while these aren’t the exact words being shared with me, the message I’m receiving is clear. I’m not worth spending time or energy on, I’m not worth being celebrated and neither is my daughter, I’m an embarrassment and my life choices aren’t up to par with theirs. It’s really negatively affected me, especially during this time of year when my emotions are literally all over the place. (So a surgery should be the perfect pick me up).

Hearing stuff like that makes me feel really small, unimportant and terrible inside. Rob and I try very hard to be great parents, to be there for our friends and to also make our parents proud…all while trying to have record sales in business and be available to our customers. The demands sometimes seem impossible. While it appears to us that everyone else is moving perfectly along in life, we’re working on the “Mmm” sound and the “Ppaa” sound and the “Daa” sound, we’re scheduling surgery, we’re working on trying to drink more than 6oz of formula by mouth. So to hear that I’m not enough…how can that be true? How can someone have that opinion of me? It hurts.

I just want to hear what Reagan has to say, with words from her mouth. I don’t want to feel like Rob and I are always in a life raft, alone, waiting for someone to rescue us. I want for Reagan to be able to just be a kid and enjoy being a kid, instead of having to work so hard at everything that comes naturally to me and you.

Hopefully this surgery will help her talk more by helping her hear more…if it constantly sounds like she’s under water, it would certainly be tough to mimmic the sounds we’re all requesting right? And if she’s constantly fighting ear infections, then drinking formula would be more difficult and possibly painful, right? This surgery should help in a lot of ways. I really hope it does.
Thank you guys for your prayers. xoxo

**update** surgery is canceled due to Reagan vomiting and having a 102 fever. Pray we get through that quickly!

100% Human

Friday morning (4/11) I had Anne-Marie post an update on Facebook…we were transparent with everyone on how were feeling after meeting with our geneticist and getting the preliminary report of Reagan’s MRI, however, I did not post my thoughts that evening after we had met with the neurologist and he reviewed the MRI with us. This is what I had typed up, but didn’t have strength to finish it or post it.

Friday evening note:
“After speaking with Reagan’s neurologist this morning, the diagnosis is actually much worse than first thought. Instead of the brain damage being isolated in one section or part of her Basal Ganglia, the entire Basal Ganglia has been damaged. (From wiki: The Basal ganglia is associated with a variety of functions including: control of voluntary motor movements, procedural learning, routine behaviors or habits such as eye movements, cognition, and emotion).

Our fears have been confirmed, our little sweet RayRay is lost and she isn’t coming back. Only the shell remains for us to “manage & make comfortable” – as the doctors put it. Our hearts and spirits are literally broken and laying in pieces on the floor. We don’t understand. Reagan’s last moment with us was to turn and grab Anne-Marie’s hand, take a couple quick steps towards her and fall into her mother’s arms to give her a hug and kiss…something she just started doing a week before getting sick and being in the hospital for a week. After that, she turned to crawl back to her toys and play, but collapsed. Just like that, she went from being full of life to not.

The doctors told us that she has no chance of recovering from this. She won’t be able to crawl again let alone walk, won’t be able to talk or even be able to smile at us.”

I’ve cried a lot these past few weeks. Easily more than I have my entire life.

Me and my sister, Melissa
Me and my sister, Melissa.

It has been an absolute roller coaster physically, emotionally, and spiritually. Utter exhaustion, uncontrollable crying, hopelessness, outright anger…all replaced with rest, joy, renewed hope, and a tapered down anger. But I’m still angry.

While my feet are planted firmly on the Rock, I still have been battered and beaten from this ordeal; however, I know there is hope. That hope comes from my faith in the one and only true God, our Creator. It is not a kind thought or some other silver lining, because life cannot be lived there. If you live your life there, there is no depth. There is no dynamic relationship between you and your Creator, something he longs for with us. I’m pretty sure God doesn’t mind us questioning Him or his plan, as long as we remember the lesson he taught Job. (see Job 38-42)

I’ve also found comfort in knowing that there are multiple examples in the Bible of people not wanting to face the trials God has set in front of them: Moses, Jonah, even Jesus. Even though Jesus never doubted God’s plan, he still questioned God and asked if there was another way – any other way than the cross.  “My Father, if it is possible, may this cup be taken from me. Yet not as I will, but as you will.” (Matthew 26:39 NIV) Then Jesus goes on to question God two more times, versus 42 and 44.

I find a lot of comfort in those verses, especially now going through these dark times. Even though Jesus was 100% part of the Holy Trinity, he was also 100% human. He understood both the plan and the pain of the cross, and wished there was another way. To me, this is one of the best examples Jesus shows us his humanity. Jesus just doesn’t blindly accept that this is the path chosen for him, but questions it. He doesn’t question it because he doubts the plan or thinks he has a better way, but it is simply a cry from his heart…his human heart.

I don’t believe God wants me to blindly accept this path He has set forth for me in this life. Life is difficult, and it’s meant to be. [Thanks Adam and Eve for screwing that up.] Fear, despair, sadness, hopelessness, depression—all of these are a part of normal life, but some want to mistake them for a weakness, a lack of faith or punishment for some sort of sin. Some try to replace these with some sort of naïve optimism, blind faith, or bright, fluffy Internet memes to brighten any gloomy day. Sooner or later, the coldness and harshness of life will catch up to you—and no meme is going to fix that.

God wants us to question the path He has set in front of us. He wants to hear the cries of our heart and be the glimmer of light in the darkness of life. He wants us to confront our shortcomings, fears, and everything that hurts us head on. He wants us to wrestle with Him like Jacob did. (Genesis 32:22-32)

God never said that life would be easy, it’s actually more difficult following after Him and the path He wants us to take. I try to remember that we live in a fallen world; sickness and pain do not come from God but the enemy—and I hate that guy. But my cries are directed to my Father, and He has one heck of a shoulder to cry on.

Back at the hospital

I opened my blog to write a new update and had an update I had started previously about having Reagan home and how wonderful it was to watch her play and laugh and walk around. Unfortunately, that’s not the blog I’m posting.

On Tuesday evening around 6:40 p.m. we had finished feeding Reagan and were playing…my mom was over and had just given Reagan some more clothes…she’s pretty fashionable if you haven’t noticed. Reagan had just taken a couple steps to me by holding on to my finger and she rushed in to give me a hug. I love it when she does that! All of a sudden she was on her belly, I figured she was going to crawl. Her left arm was stuck under her and she was grunting…maybe she was pooping? We kept saying, “Reagan, what are you doing? Are you going to get up?” Rob said, “Anne- Marie, help her.” When I picked her up, she was completely limp. My heart sank, and so did Rob’s…I saw it in his eyes.

Oh, my goodness I thought, is this a metabolic crisis? Have we lost her forever? She was staring into space. I called 911.

The paramedics arrived and our neighbors were there asking if they could help. I gathered a few items like her formula and Rob rode with Reagan in the ambulance, my neighbor drove me, and my mom drove behind the ambulance. Rob said she was dazed, looking out a million miles away and she did cry for most of the way, but when I saw her and heard her, it wasn’t her normal cry. She looked debilitated. Rob and I looked at her and each other with tears in our eyes, biting our lips and shaking our heads in disbelief and confusion. All we could say to each other was “I don’t know…”

I kept looking at her saying, “Where are you baby girl? What are you looking at?”

Reagan had a CT scan and all her blood levels were checked for her GA-1. Both were normal. We were moved to the neurology floor.

Neurology.

Even though so much was happening, I did have the presence of mind to make our room request known…”Can we please have the biggest room you have? We just got home on Sunday after being here eight days…and a large room helped our sanity.”

Wish granted.

As soon as she was moved onto the Neurology floor, she had a seizure. A real, minute long, scary looking seizure. It’s what the ER doctors suspected she had, but her episode at home was nothing like this. Rob and I wept as we held her with the nurses. I remember the nurses from our previous visit telling us that they like to see fighters. And that’s how they categorized Reagan. But this go around Reagan was not her feisty self, she cried at her IV being put in, she cried during a few things, but I just don’t know where her usual feistiness was hiding. And we are scared. I want her to rip things apart, I want her to be difficult and strong willed like she is.

Last night, she was hooked up with an EEG to monitor all her brain activity, and  I had a button to push every time I thought she was having an episode. I asked the tech how many times it was pressed and she said around 50 times btw 1 a.m. – 5 a.m. She had lots of mini tremors and four big, one minute long seizures. The good news is the Neurologist came in this morning and said those mini episodes were not seizures.

Reagan hooked up to an EEG. There are about 50 wires under her cap
Reagan hooked up to an EEG. There are about 50 wires under her cap.

During the EEG test a bunch of flashing lights at varying speeds and intensity were put in front of her, the purpose was to induce a seizure if there were any “seizure remnants” in her body, and it did. She had another big seizure as a result of the flashing lights and then for probably the next several hours she had tremors. Not as intense, only 10-20 seconds, her body didn’t always shake, sometimes it did a little, sometimes it just stiffened. And there was a period of about an hour and half where she slept and didn’t have anything. At one point she woke up and said things like Bauer, Dad and just made babble sounds. She kicked her legs a couple times at one point and gave us a smile…we would see glimpses of our Reagan. It took several doses of different drugs to actually make her seizures stop, and that has allowed me to write this update.

I honestly don’t know how Rob and I can take much more. She had RSV, a virus that’s really tough on babies, and b/c of her metabolic condition, we had to stay in the hospital for eight days to get her to a place her Nemours Dr.’s were comfortable with her eating. Since being home, she has not wanted her formula, she has developed a bottle aversion we believe, so on Tuesday morning, we went to an occupational therapist to assist and give us ideas on how to get her to drink her formula. It was a major concern for Rob and I but her Nemours team said we had a little flexibility, maybe two weeks ,for her to figure out not to associate her formula with the hospital and vomiting since she was eating really well. But now…with this seizure episode, I just don’t know how we will overcome two major obstacles…eating and her GA-1 and these seizures, which we still don’t know where they are coming from, why or a diagnosis. And the formula, she’ll likely have administered through a tube again…I hate saying my baby is on a feeding tube. It seems lifeless. And she’s not a lifeless kid.

Last night they moved Reagan from Neurology to the intermediate section of the PICU floor…I remember coming back up the elevator at some point last night and thinking to myself, “at least we’re not on the PICU floor” and here we are, on the PICU floor.

I don’t think we’ll know anything until Reagan starts to wake up more…the medications make her groggy and seizures really take it out of babies. She didn’t get much rest last night b/c of all the episodes and now she’s surely groggy and trying to rest as she’s not having any episodes right now.

What we are praying is for our baby girl to come back to us. I don’t know how severe all this affected her, it just feels like we have this huge mountain to climb. We climbed a big mountain for four years to start a family, and then found another mountain range with her GA-1 diagnosis…we just keep climbing and climbing and the weight just gets piled on top of our backs.

Jesus says, in Matthew 11:28-30 “Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”

Truth be told, I hate that God has chosen us to go down this path. Our friends say “oh, you have such strong faith, it’s so encouraging.” I don’t think so…I’m mad, I’m upset, I want to yell at God…I feel like He’s far away, I feel like He’s being mean to us. But when you don’t think God is there, that’s when He’s right next to you, right behind your shoulder, giving you the extra strength to take a deep breath or standing in front of you catching your tears. I just wish I didn’t have to shed so many tears…I’m tired of crying and it feels like we don’t have much energy left to go down this path.

I will say though, that our friends and family have greatly helped us. My mom, our neighbors Tom and Debbie, and our friends Rachel and Laura came to the hospital without thinking twice, without me even asking. They just sat in the ER waiting room, hoping I’d come out with an update. This morning, Trey brought us breakfast and coffee. And I know there is an army praying for our warrior girl.

Not really sure what to pray for but off the top of my head, I’m praying that Reagan will be her normal self. I pray that this can be managed, that these seizures did not have damaging affects on her brain, that she will run and walk and play and have friends and of course, be back with her furry partner in fun, Bauer.

Reagan at 5:15 after she woke up from her nap...about an hour and a half before her episode.
Reagan at 5:15 after she woke up from her nap…about an hour and a half before her episode. We put Bauer in her crib and she thought it was awesome.