I remain hopeful

“Trust in the Lord and do good; dwell in the land and enjoy safe pasture. Delight yourself in the Lord and he will give you the desires of your heart. Commit your way to the Lord; trust in him and he will do this: He will make your righteousness shine like the dawn, the justice of your cause like the noonday sun. Be still before the Lord and wait patiently for him; Refrain from anger and turn from wrath; do not fret – it leads only to evil. For evil men will be cut off, but those who hope in the Lord will inherit the land.” Psalm 37:3-9

photo 4


“They lived happily ever after. These may be the most beautiful and haunting words in the entire library of mankind…this is written on the human heart, this longing for happily ever after.” – John Eldridge, Epic


Today is the year anniversary of the day we came home from the hospital when Reagan had RSV. It is also the year anniversary of one of my most cherished memories. The night before, I told AM to sleep at home. We had been in the hospital for a week and were exhausted. The room we had only had one hospital bed, so I decided I would stay. I would wake up in the morning to mix Reagan’s bottle and hope she would drink something as well as make her some breakfast since she was eating like a champ.

I had woken up before her and started fixing her food in the dark and silence, at least the silence of the hospital. As I was almost finished, I heard her begin to stir. She was waking up. I looked to her crib and saw her lift up her head and look around the room. Her eyes landed on me and with excitement and relief, she let out a word I have only heard that once. “DA-DEEE!”

photo 9

As she said that word, she began to crawl to the side of the crib I was on. She was excited to see me. She was relieved I was there with her. And she wanted to be closer. A year has gone by and I have not heard those words again since. And while there is pain in my heart over everything that has been stolen, especially this, I remain hopeful.

Selfie Sunday

Somedays the tears still come through and I succumb to the loss and grief I’ve suffered, but I still have hope. I hope in a future, that among other things, will include hearing Reagan call out to me “DA-DEEE!” in excitement and joy. I long for moments like this to happen, mostly so I don’t have to live only with the memory and the loss of them. I long for that happily ever after.

IMG_5997

NUTS!

“Will evildoers never learn–those who devour my people as men eat bread and who do not call on the Lord? There they are, overwhelmed with dread, for God is present in the company of the righteous. You evildoers frustrate the plans of the poor, but the Lord is their refuge.” -Psalm 14:4-6


“We won’t begin to understand our lives, or what this so-called gospel is that Christianity speaks of, until we understand the Story in which we have found ourselves. For when you were born, you were born into an Epic that has already been under way for quite some time. It is a story of beauty and intimacy and adventure, a Story of danger and loss and heroism and betrayal.” -John Eldridge, Epic


We are at war. To some degree, we are all part of this same war, however, some of us see far more action that others. Anne-Marie and I have seen a lot of enemy fire and we continue to be put on the front lines. Do we want to be here? Do we think we can handle this? No, but this is where we find ourselves. And it is in this war and in these battles that our character and medal is tested. We are squeezed and twisted and bent to the breaking point by the Enemy, but we don’t break. Not because of anything we do or by our strength, but because we find refuge in the Lord.

Nuts

With all that we are faced with, I feel like we are part of the 101st airborne in Bastogne, encircled by the German Forces in the Battle of the Bulge. We are outnumbered 5 to 1, poorly equipped for the winter weather, low on ammunition, low on food, and without shelter. Just dug into our foxholes and trying desperately to just hold our ground. We are constantly being shelled by artillery and the enemy tries to advance but we are able to poke our heads up briefly enough to drive them back and fend them off. Our position is vital to the enemy’s overall objective, just like Bastogne was for the Germans–but we won’t give up or surrender.

After encircling the city and cutting off the 101st from the rest of the forces and supply lines, the Germans issued a request for surrender, to which Brigadier General Anthony McAuliffe replied with “N U T S!”.

In a sense, he told the German commander to “go to hell” even though they were outnumbered, outmatched, and outgunned. The men of the 101st repelled all of the advances of the German army to take the city over 7-10 days before help arrived and the Allies were able to resupply and retake the lines in Bastogne. And instead of being pulled off the front lines for a break in action, they were ordered to go on the offensive to battle the Germans even further back.

Those troops were real men, and saw more action that their fellow troops. They were revered by their comrades for their bravery and resiliency in such an impossible circumstance. They won when winning wasn’t even an option–all because they didn’t give up and run.

That is the type of man I want to be, that is the type of character I want to have, and that is the type of bravery I want to be known for. God has placed us in this position for His reason, and even though we have been isolated and encircled by the enemy, we will not bend, we will not break, we will not fold and we will not run. So to the commander of the forces that come against me and my family, NUTS!


Click here to read the full account of this story.

True safety

“The Lord is King for ever and ever; the nations will perish from his land. You hear, O Lord, the desire of the afflicted; you encourage them and you listen to their cry,”-Psalm 10:16-17

“The cumulative effect of days upon years that we do not really understand is a subtle erosion. We come to doubt our place, we come to question God’s intentions toward us, and we lose track of the most important things in life. We’re not fully convinced that God’s offer to us is life. We have forgotten that the heart is central. And we have no idea that we were born into a world at war.” -John Eldridge, Waking the Dead

I think the greatest tactic the enemy has mastered is to make you believe things are “going just right” for a long time. The longer things seem to go our way, we slowly forget to rely on God and his strength. We forget to seek Him in prayer, we forget to read His words to us, we forget that we have an enemy. Our grip on our lifeline slowly loosens over time, until one day the enemy strikes. The rug is pulled out from under us; the trap door is sprung. And we begin to fall, desperately trying to grab onto anything that can stop our fall, only to find the things we surrounded ourselves with, things we built, begin to crumble when we grab hold. There’s only one line that can save us and stop our fall, but after years of not using it we forget about it. We don’t believe there is any strength in it because the things we built and found strength in for so long are crumbling–so how could this small forgotten rope do anything?

But it can.

It can because it is our safety line from God. It is the only true source of strength and is the only thing that we can grab hold of to stop our fall. But the belief in that truth has been slowly eroded away, just like water can cut through solid granite and glaciers can carve entire mountain ranges–it only needs time. And as time can slowly erode the strongest foundations built by man, time can also build the strongest faith and belief as long as we fully trust in Him–Jesus. The climb might be more difficult, and there may not be any breaks or rest, but it is the only path that will take us to the top. It may not seem safe either, but when you are born into a world at war, no path is safe and the journey isn’t meant to be, but God is good and wants all of us to reach the top where he dwells, for that is the only place of true safety.

2:9

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

 

3:4

Jailbreak for my Heart

“In the morning, O Lord, you hear my voice; in the morning I lay my requests before you and wait in expectation.” Psalm 5:3sleepy snout2

“But let all who take refuge in you be glad; let them ever sing for joy. Spread your protection over them, that those who love your name may rejoice in you. For surely, O Lord, you bless the righteous; you surround them with your favor as with a shield.” Psalm 5:11-12


“We do not understand it is God speaking to us in our heart. Having so long been out of touch with our deepest longings, we fail to recognize the voice and the One who is calling us through it…some of us silence the voice by locking our heart away in the attic, feeding it only the bread and water of duty and obligation until it is almost dead…others of us agree to give our heart a life on the side if it will only leave us alone and not rock the boat. We try to lose ourselves in our work, or “get a hobby” (either of which soon begins to feel like an addiction)…Having thus appeased our heart, we nonetheless are forced to give up our spiritual journey because our heart will no longer come with us. It is bound up in the little indulgences we feed it to keep it at bay.” John Eldridge, The Sacred Romance


From the moment we started trying to have a family, this whole process has felt like a jailbreak for my heart. It has been a violent process of ripping away these “little indulgences” that my heart had learned to live on. It was amazing to see how much of what I used to do did not matter at all, because when it was ripped away it has not been missed. Sports, TV, video games, home projects, movies, it was all cut away like a skilled surgeon was carving out the cancerous parts that plagued my heart. I’m amazed at how little I miss these things as they are now simply a “treat” as they should be. It may not make sense to most, but becoming a father – the process – has rescued my heart. Do I miss those easy, fun times? Absolutely, like someone giving up an addiction misses their vice of choice. But I am better for taking this journey, for not giving up, and for not clinging desperately to those things that didn’t matter. Case in point, when the Super Bowl was on, I didn’t care about it or the hype that surrounded it. Does it matter if I watched it in the morning while spending time with God? No. Will it help me get through another day dealing with the many challenges in taking care of Reagan? No. IT just doesn’t matter, it is only a treat to be able to spend time doing that or anything like it. And that treat shouldn’t become the lifeblood like so many live on. I pray I can continue to focus on what truly matters and never rely on those “treats” to get me through a day or take up so much time in my life that it becomes my life. My life is here, being a husband, father, leader, and son – and I will continue to focus on my heavenly Father that has been giving us the power to tell our mountains to move out of the way.

2:2

More.

“Complain if you must, but don’t lash out. Keep your mouth shut, and let your heart do the talking.” Psalm 4:4 (The Message)


Reagan at fence
“Let the light of your face shine upon us, O Lord.” Psalm 4:6

“There is something missing in all of this, it suggests, there is something more…We listen and we are aware of – a sigh. And under the sigh is something dangerous, something that feels adulterous and disloyal to the religion we are serving. We sense a passion deep within; it feels reckless, wild.” John Eldridge, The Sacred Romance


After weeks, more like months, of waking up early, only to roll over and go back to sleep, it took a prompting during a table discussion at a men’s bible study to start this journey. But that calling had been here for a while, and I kept silencing the voice that was calling out for I felt I was doing enough and the best I could with everything that has happened and continues to happen. But there is more. More in me, and more God wants out of me so I can better understand Him and where this journey is taking me and my family.


We stick out – not because we have a child with special needs, but because our lives are being pulled in a completely different direction than everyone else. People notice us, follow our journey and struggles, share with us their struggles, and find comfort in knowing they don’t have to put on a mask or front when they communicate with us. There is a rawness, a realness to our struggles that everyone can relate to only because we are being faithful and honest with expressing what we are going through. I pray we can continue to do this – free from arrogance or pride. There is nothing arrogant or prideful about being a parent to a special needs child, only overwhelming love and joy to watch her tackle her struggles head on as if there was nothing standing in her way – and to her, there is nothing there.

Reagan standing with bauer


For that, I am proud. I pray we can have faith like that, one that can move mountains. “Let the light of your face shine upon us, O Lord.”

2:1

fill my storehouse

Hear the cries of my heart, O Lord my God; listen to my prayer.

Each morning and evening I put on the whole armor of God so  can stand against the wiles of the devil, but my spirit grows weary.
Strengthen me; Equip me;
Give me the endurance I desperately need during these times according to your never-ending love.

My storehouses of hope and joy are nearly empty.
Multiply what is left, let them overflow.
Have mercy on me; Have mercy on my wife;
Have mercy on my daughter according to your never-ending love.

From your mighty words this earth was created and all that dwells in it.
You command all; you are ruler over all, there is no equal.
Silence the enemy and destroy his work.

Restore us!
Make your face shine upon us!
Save us!

an encouraging thought

I love watching movies. It’s a short escape from all your responsibilities where you can turn your mind off for around two hours and just sit, relax, and watch. No thinking required, all you have to do is keep your eyes and ears open and everything just happens in front of you.

Now if you know me, you’d know that I pretty much like most movies. I’m really not that picky, and I’ve got the Netflix account to prove it. (Most movies I’ve watched are rated 3 out of 5 stars) I don’t have any expectations going into a movie, so I’m pretty easily entertained as long as the director can keep some sort of story together, have some decent acting, and maybe throw in a couple fancy special effects. I prefer movies to actually have somewhat of a decent ending, but that seems to be too big of task for Hollywood lately so I’ve caved a little bit on that expectation over the past few years so when a movie does have a good ending, I can be pleasantly surprised.

I’m not opposed to watching a romcom or a suspenseful thriller about the latest possessed house and/or child (seriously, how many of these have been made over the past decade?), but I prefer something a bit more fun. Action, adventure, fantasy, sci-fi, and maybe a touch of drama and comedy…those are the types of films I prefer. Oh, and zombies. Gosh I love zombie films. They can be ridiculous at times, but boy are they fun to watch. (And laugh at. Does that make me weird? Maybe.)

With all that we’ve gone through in these past couple months, everything looks different. We’ve been through some pretty dark and scary times. We know what desolation feels like. And the world just looks different–so do movies.

I recently watched (over the course of about 4-5 days) the second hobbit film. The movie reminded me of an encouraging email my friend Trey had sent to me a couple months ago, which was around the first week we got home from the hospital. He had just read a blog post by Anne-Marie that said, “this was likely God’s plan all along and there’s nothing we could have done to prevent it” and was reminded of a scene from the first Lord of the Rings movie that he thought applied to what we were going through. Here’s the quote:

Frodo:  I wish the Ring had never come to me. I wish none of this had happened.

Gandalf:  So do all who live to see such times, but that is not for them to decide. All we have to decide is what to do with the time that is given to us. There are other forces at work in this world Frodo besides the will of evil. Bilbo was meant to find the Ring, in which case you also were meant to have it. And that is an encouraging thought.

This quote gave me pause and a new perspective to think through over these past couple months. While we certainly wish none of this would have happened to Reagan, we have accepted that this has been God’s plan all along. All the doctor visits, blood draws, diet spreadsheets, careful monitoring, etc—all of it wasn’t going to stop God’s plan. While it gave Reagan a better fighting chance to handle the crisis and resulting brain damage, we couldn’t have prevented it from happening.

That’s been tough to accept, and some days we got lost trying to wrap our heads around it. Thoughts like, “If we had just done this” or “Maybe we shouldn’t have done that” or “Why didn’t we do this”. But we simply can’t think like this anymore because it’s wishing none of this had happened…it isn’t helpful and we end up just beating ourselves up over something that is ultimately out of our control.

Instead, we pray. We pray for healing. Not just in general, but we pray specifically for each area of her body to be healed. We pray for her brain to be healed from the damage that was caused. We pray for her brain to find new pathways and reconnect functions that were lost. We pray for her eyes to center and focus so she can clearly see. We pray for her mouth to regain control to eat, drink, and talk again. We pray for her throat to regain control to swallow both foods and liquids again. We pray for her core to regain control and allow her to sit up unassisted again. We pray for her arms and hands to regain control to allow her to play and do the actions she wants them to do again. We pray for her involuntary movements to completely stop so she can regain her fine motor skills within her arms and hands again. We pray for her legs and feet to regain control and allow her to crawl, stand, walk and jump again. We pray for her stomach to continue to handle food and the feeding tube she has inside her. We pray she will never have another seizure, that she will never have another metabolic crisis, and that she will never have any further damage to her body.

And we believe.

We know God can heal her. Whether it’s overnight or gradually, we believe He will heal her. These are the other forces at work in this world beside the will of evil.

So what are we going to do with the time that has been given to us?

Choose joy continuously. In the midst of pain and struggle, we have to choose joy. No matter how dark and scary it gets, we have to choose joy. No matter how long this season of our life lasts, we have to choose joy.

And believe.

Because the only way we are going to overcome this is with the strength and help of our Lord and Savior Jesus Christ.

And that is an encouraging thought.

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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.

A Father’s Thoughts cont.

this is very true for me
this is very true for me

Terrified.  Angry.  Sad.

Never did I think those would be the three feelings I had 4-days into being a parent, but there I was.

You have to understand, I’m just like you.  I live life on the positive side, love to laugh, and see God’s beauty in everything from the obvious sunrise/sunrise to the unapparent processes that sustain life like photosynthesis.

And while I can certainly see God’s beauty in my daughter and her adoption story, her diagnosis is just tough to deal with when I take the time to stop and think about it.

You see, it is difficult for anyone to put themselves in our shoes to understand what we are going through…unless you’ve been there.

Unless you’ve received similar bad news from doctors about your child within their first few days of life, you can’t understand what it’s like.  Unless you’ve prayed similar prayers that your child can hopefully be able to walk, talk, play and have friends, you can’t understand what it’s like.  Unless you’ve had to shop at a medical supply store or contact a laboratory to find and order a certain prescription food for your child, you can’t understand what it’s like.  Unless you’ve had to measure, weigh, plan, and log all meals for your child because they can’t eat what everyone else can, you can’t understand what it’s like. Unless you’ve had “congratulations” change abruptly to “I’m so sorry” shortly after your child has arrived, you can’t understand what it’s like.

You can’t understand what it is like to feel fear, anger, and sadness all at the same time for your new child, unless you’ve been there.  But that’s ok.  I sincerely hope no one ever has to be there.

However, if you ever do find yourself there, you are not alone.

It is vitally important to process through all of your feelings and emotions when dealing with something of this magnitude.

You see, I think we all get too caught up in all of the silver linings in life’s struggles.  While it is a romantic notion to look at the comforting and hopeful aspects of an unhappy situation, I think you only hold yourself back from fully experiencing life…struggles and all.  And if you hold yourself back, you are also holding back a part of you from those in your life.

Holding back from those in your life is simply just trying to a live lie.  I have struggles and hardships in my life, and I know you do too.  If you tell me you don’t or try to make it seem how perfect your life is, you’re lying….not just to me, but to yourself and those in your life.  And lying to yourself is a slippery slope no one wants to go down; it only ends in disaster.

In order to be fully involved in my daughter’s story and at the same time be fully honest with myself and the feelings I am experiencing and to be the best father for her, I have to be transparent with my feelings and not just live in the silver linings of her story.

While those silver linings are nice things to think about, I liken them more to a rock that I’m holding onto so I don’t get swept downstream in this raging river that is my daughter’s life.

You might think that these rocks would be something to keep holding onto in order to be strong for my daughter and wife during these tough times, and I would have agreed with you until I discovered a flaw in that line of thinking.  If I continue to hold onto these rocks, I’ll never know what is downstream.  I’ll never know where this raging river leads.  I’ll never fully experience my daughter’s beautiful story.

Also, I’m no river expert, but when you have a bunch of rocks in the middle of a raging river, that usually creates rapids.  So I am allowing the river’s current to take me wherever it leads. It’s important for me to write out all of my feelings, not just the silver linings.

choosing to go into her unknown
choosing to go into her unknown

Life isn’t best lived by staying in the rapids.  So I’m choosing to go downstream into the unknown.