Unbelievable

A few months ago I had a decision to make. Nothing major. Nothing notable. Just a quick, simple, thumbs up or down decision that ended up taking me weeks to decide – the decision to renew the domain “The Elijah Effect”. Big deal, right? I know.

To this day, I am still not completely certain why I was so hesitant to drop $13 on a site renewal.
Part of it has to be the obvious – it’s not very fun to share your thoughts to the world wide web on a site that is attributed to your son that has passed away.
Part of it has to be the insecurity – who needs another blog for the masses to ignore or a post to thumb past on a social media timeline?
Part of it is the reality – most of the previous posts on here seem like they were written a life-time ago, and I am not sure I even recognize that guy who seemed so spiritually sound through a very difficult part of his life.

But, here I am. At 12:30am on a Thursday morning, I am typing once again. In spite of my feelings, insecurities, and doubts, I can’t help but be reminded that to this day this little blog, which was originally created to just update some family and friends of our medical journey with Elijah, has now been viewed in 84 different countries. And now, being 364 days from saying goodbye to our Superhero, I also can’t help but think that maybe somebody out there could stumble upon this blog once again and be impacted by The Elijah Effect.

A lot of people are going through difficult situations in this broken/messed up/hurting world. And maybe, just maybe, a post of ours could make an impact on somebody like it had before.

So…Here. We. Go.

RealifeI’m a youth pastor. I love what I do. I can honestly say that I am living out my dream. But, because I am a guy who gets the opportunity to speak to teenagers about God on a continual basis, every once in a while there comes that moment in a sermon where I seem to be preaching and everybody in the room is listening but one person. It’s not the junior high boy who is trying to impress the girls around him with his constant texting, joking, insecure cry for attention. It’s not the high school girl who has sat through countless messages and already knows where the message is headed just by the scripture reference that is projected on the screens in the auditorium.

The one person who is honestly not soaking in the challenge from the preacher is:
The preacher. Me. Chris Davis. Pastor Chris. @thechrisdavis.

I can find myself preaching a message, while the whole time thinking, “Man, I hope these students grasp this,” when I haven’t even fully grasped the truths that are blaring through the sound system.

Hypocritical? Maybe. Honest? Absolutely.

We (our team of pastors and leaders) have been encouraging our students with a promise found in Romans 8. It states it this way in the New Living Translation:
Romans 8:37 No, despite all these things (read verse 35), overwhelming victory is ours through Christ, who loved us.

Overwhelming victory is ours because the love that Jesus Christ has for us.
It’s not a narrow victory. It’s not a close call. There’s no booth review or need for instant replay.
It’s evident. It’s obvious. It is overwhelming victory.

Victory at RealifeFor me, that is a fun one to preach. There is nothing better than informing a bunch of teenagers that God is so crazy in love with them that He promises them overwhelming victory.
Do I believe it? Definitely. Do I receive it? Not so much.

See, we had to say goodbye to our son almost a year ago today. Since then, I’ve read a lot, prayed a lot, cried a lot, spoke a lot, seen a lot, been through a lot. And through it all, I am still really heartbroken and sad.
All we have left of our son are pictures, a few little videos, and the memories that we try to guard and save.
No matter where I go or what I do, I always feel like there is a part of me that is missing. There is a part of me that will never be back, fixed, or replaced.

And, truth be told, I like it that way.
I don’t ever want anything or anybody to take Elijah’s place in my heart.

So much so that I find myself at times being guarded, depressed, doubting, and fearful. And deep down I have almost convinced myself that if I were to move past these deep rooted emotions then I have allowed other things to take Elijah’s place in my heart.

So, where does the Romans 8 reference come into the scene? Because of God’s unimaginable, inescapable, unexplainable love for me (read verse 38 and 39 of Romans at the bottom of this post to see for yourself), I can have overwhelming victory over this seemingly overwhelming sadness and sorrow.

I don’t have to be fearful of starting another day – a day that just takes me one step farther from our last day with Elijah.
I don’t have to doubt that God can see me through this lonely, painful season, just as He has done multiple times already.
I don’t have to battle waves of depression on my own; God hasn’t abandoned me to my own and isn’t just waiting for me to catch up to him on the other side.
I don’t have to guard myself from the possibilities of experiencing more pleasures and pains in my lifetime.

So, then, have I allowed other things to take Elijah’s place in my heart?
Yes. The truth of God’s unbelievable love for me is slowly taking that place.

It’s unbelievable to think that Elijah left this earth a year ago.
It’s unbelievable to think that this is our story.

People ask us every once in a while to share our journey.
The best way I can describe it all: unbelievable.

The incredible amount of emotions I’ve experienced: unbelievable.
The realities of life that I have learned by 30 years of age: unbelievable.
The turmoil and pain we have gone through: unbelievable.
The amount of tears we have shed: unbelievable.The impact made on so many lives by the story of one little boy’s journey: unbelievable.
The opportunities we have had to tell our story: unbelievable.
The promise of overwhelming victory in all of this: unbelievable.
The amount of God’s love for all of us: unbelievable.

Romans 8:38-39 New Living Translation
38 And I am convinced that nothing can ever separate us from God’s love. Neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow—not even the powers of hell can separate us from God’s love. 39 No power in the sky above or in the earth below—indeed, nothing in all creation will ever be able to separate us from the love of God that is revealed in Christ Jesus our Lord.
That is unbelievable. Yet, I choose to believe it and receive it.

Brilliantly Unfading

Faded Flowers

Faded Flowers

No doubt, our journey as a family has consisted of many “firsts”. We could write in great length of all the different instances where we experienced something for the first time. Even though Elijah has passed away, the “firsts” haven’t. First time to visit the doctor without Elijah. First trip to visit family after the funeral. First Mother’s Day and Father’s Day without all of our children. Recently, we experienced another first.

For the first time, we as a family went to change out the flowers at Elijah’s grave. I’ve never really enjoyed going into stores that smell like elderly women and are full of silk flowers. But, now more than ever, I really don’t enjoy walking into that particular store. It’s not just the Christmas decorations that are up in the middle of summer that upset me. It is also the reason for our visit. We are there to purchase flowers for our son’s grave.

Even as I type, I am still in some state of disbelief. I can’t believe our little man is gone. Some moments it all seems surreal. At other times, it is way too harsh of a reality. A few weeks ago was one of those.

We visited the cemetery as a family and replaced the flower arrangement that we placed there months ago. The flowers were weathered and fading, but the reality and emotions were not. Deep down you somewhat hope that the hurt and pain, the sadness and sorrow would fade over time, just as the colors of those silk flowers did. But, such is not the case.

But I’m perfectly okay with that.

I am glad the emotions are still very real and raw. Because those emotions are accompanied by many beautiful and wonderful memories of our incredible son.

The unfading memories and feelings drive us every day to make the most of the God-given opportunities of sharing our faith and journey through the darkest days of our lives. I shared our story at a summer camp in Oklahoma, not knowing that I would later have an opportunity to talk to an 11 year old girl who lost her mother to cancer 9 months ago. We shared our story with a local journalist, and now our journey and faith is being published on their site and in this Sunday’s news paper. None of this would have happened if the pain and memories weren’t shining in a brilliant display of God’s love and grace. (Here are the links to the artlicles: family, marriage, photos)

New Flower Arrangement

New Flower Arrangement

Just as the sorrows of our loss and the memories of our journey have not faded as a flower arrangement left out in the elements, neither has our faith faded in a God who so brilliantly loves his creation in an undeniable way. I pray that the opportunities to tell the world about our son never fade. I pray that our trust and passion to live for Christ never fades. I pray that stories of people being eternally impacted by our superhero never fade. Because one thing is for certain, our time on this earth is fading. None of us are guaranteed another moment. All of us are getting ever so closer to the end of our existence on this earth. So, since the clock is ticking, we are committed to do whatever we can to express our faith in Jesus while we still have a chance.

God’s love is unlimited, unbelievably amazing, and unable to be anything less. In light of this powerful truth, I pray that our love and trust in The Lord is evident and obvious, brilliantly shining, never fading.

60 Days Ago

Photo May 01, 8 09 00 AMYesterday was the 2 month mark from when Elijah went to Heaven.

An attempt to express all of the thoughts and emotions we have experienced over the past 60 days would be inadequate. Many times I have felt like writing something about the effect Elijah is still having on different people, or the amazing support we find through incredible friends/family/church, or how our faith in God is even more resolved. But, even typing just these few statements is very difficult and taxing.

With time and God’s grace we will continue to write about the impact of Elijah’s life, as well as our journey as a family. But today isn’t that day yet. So in honor of our little superhero, I wanted to share a poem that one of our junior high students from our youth ministry gave to us on this 2 month anniversary:

“Superman”

The cape follows behind,as he flies up into the sky.
His powers overwhelm us all,
and he now hears us when we call.

He now looks down on us,
as we used to do to him.
His chocolate eyes are hard not to see,
especially when they’re staring at you and me.

I wish for one more day,
where I can imagine all the things I would say.
“I love you” is the thing that comes to mind,
yet I believe that you knew this before time.

Your powers I pray for,
that could be left behind.
For all of us
when we just want to cry.

I know that is notwhat you would want us to do.
So these are my final words for you:

Dear Superman,

Please give me the strength that you have,to show peace & comfort for all to be glad.

The little smiles that would appear on your little face,
to be placed on mine with all of your grace.

I love you so much & can’t wait to see you soon.
When I get to hold you in my arms, look right into those brown eyes
and say, “I’ve missed you.”

-Josie Stephens

In Memory of the Little Man

Family-3Thank you so much for the overwhelming amount of prayer and encouragement through such a difficult time.

The visitation for Elijah is Sunday, March 3rd from 6-8pm at Greenlawn Funeral Home-East Springfield, Missouri.

The memorial service for Elijah will be held at James River Assembly in Ozark, MO on Monday, March 4, 2013 at 11:30 A.M.

Burial will be in Rivermont Cemetery, Springfield, MO.

Elijah’s obituary is online and can be found here.

In lieu of flowers, we are asking others to consider giving in honor of Elijah to the Children’s Miracle Network. All donations will benefit local Children’s Miracle Network Hospital families just like us. Children’s Miracle Network Hospitals have helped our family tremendously and this is one opportunity to give back in such a caring way. This organization has helped with Elijah’s medical expenses, travel costs, therapy bills, and even meals while we were in the hospital. The following link will direct you to the site set up in Elijah’s name with more information and an opportunity to give.
http://www.helpmakemiracles.org/participant/elijahdavis

We truly appreciate your many expressions of love and support.

A Crown and His Cape

Family-4Elijah, our little Superman, finished all his heroics on this earth, and went to be with Jesus at 5:05pm.

As our hearts ache, we also rejoice in the hope of seeing our superhero again very soon. He has traded his tubes and medicines for a crown and his superhero cape.

The family will be making arrangements and will keep everyone informed as plans develop.

Thank you for the continual prayers.

Where’s the Remote?

When our daughter Adrienne was about 18 months old, she began to develop a nasty habit of hiding things. At first we found it to be cute and endearing to watch our first born creatively relocate different items about the house. But after a while, the novelty of trying to find the keys the car wore off. The breaking point was when we lost the remote control to our surround sound system, which our television and DVD player ran through. I’m not much into silent films or mime TV, so this became a problem.

The inability to control things is a very frustrating thing to me. Whether it’s riding in the passenger seat on a long road trip, not pushing the shopping cart in a grocery store, or having the option to quickly change the volume on the TV, there are some things in life that I would very much like to have control of. But, over this past year I have realized more and more that there are very few things in life we truly can control. We can control our attitude, our response, our mindset; we can’t control very much beyond that.

Family-45-2The further we travel down Elijah’s health journey the more I realize how much the idea of control is just that – an idea. I can’t control how Elijah’s brain functions and develops, how his body regresses from a mitochondrial disease, how slow his body digests food or responds to medicines. The longer the battle, the more helpless I feel.

Holding Elijah’s hand last night, watching him fight for every breath, I never felt more broken, weak, and defenseless than I did at that moment. There was absolutely nothing I could do fix the situation. All I could do was sit, cry, and pray. So that’s what I did…I sat. I cried. I prayed. I was completely helpless, and everything was out of my control. Yet, in the midst of one of the hardest moments I have faced this far, I kept my faith and trust in the One who still has the remote in hand.

Elijah is still putting up a fight, still showing his superpowers.The little guy is so strong and tenacious. He’s a warrior.

We are so thankful for our family that has joined us from out of state during the time, and for all of the supportive messages/texts/posts/comments from so many dear friends.

The hours are crawling by, and each moment we are granted have never seemed so precious and priceless. Through it all, I still sense a supernatural peace in the midst of such a powerful storm. I’m not freaking out, frantically looking for the remote control that’s no where to be found. Instead, I remind myself of the very powerful truth taken from a passage I have had memorized since I was old enough to tie my shoes: “Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me.” Psalm 23:4a ESV

I don’t have to have the remote. I don’t need to be in control. I can have peace during the final moments I have with our son. How? Because He is with me. He is Immanuel. He is God with us. He has been and will always be. Because He is God, because He is in control, because He is with us, I don’t have to fear.

Below is an excerpt from a book I recently started reading after a friend from our church suggested it. I pray that you and I both realize the truth and comfort from these words penned by Tullian Tchividjian in his book Glorious Ruin:
“We may not ever fully understand why God allows the suffering that devastates our lives. We may not ever find the right answers to how we’ll dig ourselves out. There may not be any silver lining, especially not in the ways we would like. But we don’t need answers as much as we need God’s presence in and through the suffering itself. For the life of the believer, one thing is beautifully and abundantly true: God’s chief concern in your suffering is to be with you and be Himself for you.”

He has the remote. He is in control. He is with us.

An Update

20130113-110433.jpg

We’ve written about our superhero before on this blog. It’s our favorite description of our little guy. I love the shirt I found him for Christmas pictured above. You can’t see, but it has a little cape Velcroed to the back. So cute.

My hero, my superman, my little boy.

I guess every superhero has a weakness: Superman had his kryptonite after all. All superheroes have a nemesis (or two) to fight as well. With all the things stacked up against them, it’s a wonder those superheroes ever make it at all.

Elijah has had a lot of medical issues lately (too many to list), lots of hospital visits and many different doctors looking after him. So many issues, in fact, that we decided to get an MRI in mid-December on his brain and spine to check if anything had changed.

It had. A lot.

Elijah’s brain and spine have both sustained significant damage. The damage is similar to a global stroke, so similar that the physicians here in town thought he had had a major stroke, which would be accompanied with an event of oxygen deprivation. The doctor compared it with what near drowning victims experience in their brains after going several minutes without oxygen.

But that wasn’t it.

As far as we knew, Elijah had never had an event of sustained oxygen deprivation.

Elijah’s primary neurologist took a look at the MRI and called us a week and a half after the MRI was done. He believes that Elijah has not had a stroke but instead his brain is damaged from the effects of a mitochondrial disease. The damage is similar in that brain cells have died, but affects different parts of the brain than a stroke would.

Mitochondria are the parts of our cells that give energy or fuel to our cells. If there is something wrong with the mitochondria, the cell suffers and dies. It is a metabolic disorder, meaning that there is something wrong with the way Elijah’s body metabolizes food. It is a genetic disorder and there is no cure.

This would explain why Elijah has deteriorated in his status and functions. I won’t go into great detail about what has happened in Elijah recently, there’s a lot to it and I won’t take the time to explain here. Our most recent visit to St. Louis Children’s Hospital brought light and clarity to his condition.

Here’s a summary:

Elijah’s condition is metabolic and therefore progressive. This means that he will most likely continue to deteriorate and lose functions.

There are medications that are available but unlikely to work due to The progressiveness of Elijah’s condition.

Elijah is not a candidate for surgery. Any surgery that Elijah would have would only relieve his symptoms, it would not fix anything. So, the risk of putting him through surgery far outweighs the benefits of any surgery. The stress on his body would put him straight into the PICU and most likely on a ventilator. The chances of him coming off of the ventilator would be unknown.

Due to the information above and our desires for Elijah and our family, we have decided to move Elijah’s care to the home. Our goals are to keep Elijah comfortable and to stay at home as much as possible. Putting Elijah through pain and discomfort to attain little if no benefit is not what we desire for Elijah, especially in light of the progressiveness of the disease. We also prefer to be at home, taking care of Elijah on our own and in our own way. We do have hospice nursing supporting us with supplies and resources.

It’s a good thing superheroes have super powers.

Elijah’s super powers are the prayers of God’s people lifting him and his family up during a very, very difficult time. Please, please pray. We are so desperate for your prayers. We love and appreciate all the gifts of food or money or deep freezers or house cleaning. But we would exchange all of that in a second for more of your prayers for Elijah.

As you can tell, we’ve sat on this information for a couple of weeks. We’ve had a surreal experience processing it and are still struggling with the reality of Elijah’s prognosis. As you pray for our family please keep this Scripture in mind:

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. (2 Corinthians 4:16-18 ESV)

We don’t know when Elijah’s days are finished here on earth, anymore than we know when your or my days are finished. Every day we get closer to the end of our temporary life and the beginning of the eternal one.

Perspective

Through our entire journey we have been blessed with the opportunity to see this world through a whole new set of lenses. Things that seemed to vital to our well being and happiness now seem so insignificant in light of the truly important things in life.

Tonight, sitting in our room in the St. Louis Children’s Hospital, our eyes have been opened once again. Instead of posting the latest developments and medical updates of Elijah from the past few days, I realized that the latest news can wait because of the fact that our wonderfully loved son is so blessed. The numerous tests and discussions with specialists seem a little less important tonight as we nod off to sleep to the sounds of a mobile playing lullabies in our room. The music isn’t being played to sooth Elijah to sleep. It’s being used to help a precious 10 month old baby doze off tonight.

This 10 month old baby, Chase, is staying in our room tonight. As our new roommate lies here, I can’t help but tear up at the overwhelming thought that this precious child is in our hospital room alone. Chase is here all by himself with no sign of family in sight. As the nurses tend to his needs, I realize that the latest news about Elijah isn’t nearly so important at this time. The simple fact is, even though Elijah has less function and ability than Chase, Elijah is incredibly loved. My perspective has once again changed.

As so many people gather with family and friends around this time of year, I pray that we realize greater than any gift that could be unwrapped or any stocking that could be stuffed is the love and attention shared with those close to us. Please pray for Chase as he is all alone on the night of Christmas Eve, and please savor the moments you have with those around you.

May our hearts be full of love and joy this season and our perspective change to the truly important things in life.

Networking

When you stay in a hospital 25 of the past 31 days, you begin to appreciate a lot of different things. The obvious amenities of life come to mind: your own mattress, shower, homemade food, etc. But, anyone can have a greater sense of appreciation for those things after just a couple days at a summer camp. When you stay in a hospital for more than 2 dozen days in a span of a month, you find a fond appreciation for other luxuries in life: a drawer of fresh clothes to pick from, toiletries that are large enough to be trashed by the TSA, waking up from an alarm clock instead of hospital staff. The list can go on and on. But over this last stay, we couldn’t help but find a greater sense of thankfulness for something that we have never been so appreciative of before: networking.

On the tenth and final day of our most recent stay at our hospital here in Springfield, we had an opportunity to be interviewed by the local newspaper. They wanted to know how our family has been impacted by an incredible organization called Children’s Miracle Network. Children's Miracle NetworkTo our surprise they printed an article in today’s Sunday paper with a picture of Becky and Elijah on the top fold of section B. The full article can be found here. No doubt, we have truly been blessed by this amazing resource for families in need due to medical situations.

Over the past few days I can’t help but be thankful not just for a network that helps with financial assistance, but also for the network of so many friends and family that are continually supporting us during this difficult journey. We know that there are numerous people praying for us, constantly looking for opportunities to help us, and repeatedly reminding us of how much they love us.

From people bringing us food at the hospital, making bracelets to remind people to pray for Elijah, holding a bake sale to raise funds, giving home-made blankets for Elijah, bringing us food at home, placing a deep freeze in our garage, filling the deep freeze with tasty meals, giving loaded gift cards to restaurants near the hospital, watching Adrienne at all hours of the day and night, sending flowers, writing cards of encouragement, littering the hospital room with balloons and stuffed animals, cleaning our house, calling, texting, commenting on social media posts, personally visiting us in the hospital, we can’t help but appreciate the network of people who care so much for our family.

Our prayer is that just as so many people have had a direct effect in the life of our son through numerous acts of love and generosity, we too would be able to reciprocate the same to many more. In essence, the title of this website says it all: The Elijah Effect – the effect one little boy has on so many & the many for one little boy.

We cannot express our thankfulness and gratitude enough to each and every one of you. Yet, even if there never was a single act of kindness or love sent our way, I know that we aren’t facing this journey alone. I am convinced that God is with us through every hospital visit, medical test, and diagnosis from the doctors. We cannot deny that the presence of God is evident in every stage of this situation.

During the Christmas season we celebrate the truth of God coming to this earth, worshiping Immanuel – God with us. The further we go down this difficult path, the more we realize that we serve and love our God who is Immanuel – God with us. He isn’t a god who was with us, at one point walked this earth, and now leaves us all to our own. He is and always will be Immanuel.

I pray that you too will realize this Christmas season that God is Immanuel; He is with you. This is the greatest gift, relationship, and network any of us will ever have.

The virgin will be with child and will give birth to a son, and they will call him Immanuel—which means, “God with us.” Matthew 1:23 NIV ’84

GOTTA GO

.500 – that’s the batting average of Elijah for the month of November. I even did a recount to make sure this was accurate, and it looks as if we set a family record so far by staying in the hospital 15 out of the 30 days in November.

December is here now, so a new count has started. Our 3 1/2 year old daughter is busy counting down the days to Christmas, while we have a different count down – the count down to Elijah’s tentatively scheduled surgery. ‘Tentatively’ is the adverb we are using more and more around here.

Throughout the entire hospital adventure of November we kept thinking that we GOTTA GO up to St. Louis and get this surgery to help Elijah and his swallowing/aspirating issues. As we have already shared in previous posts, that didn’t happen when we wanted. Elijah returned home with a distended stomach, and two days after being home an X-ray showed that we GOTTA GO back into the local hospital. After an overnight stay, some of the pressure was relieved and we went back home. After a few more days of discomfort, a distended stomach, and vomiting, we had another X-ray of his abdomen that once again told us that we GOTTA GO back into the hospital.


Photo Nov 30, 3 07 25 PMThe reason we are racking up our frequent flyer miles at the hospital is because Elijah has GOTTA GO and he physically is unable to do so. His digestive system is incredibly backed up and causing blockage issues. We have never been so eager for a dirty diaper, but Elijah hasn’t been able to do that on his own since November 18th. He’s been receiving different fluids in different areas to try and help break up the hardened stool in his system, and some of it has started to breakdown and pass through. Due to the digestive problem, Elijah hasn’t received a full feeding since our trip that capped off the month of November in St. Louis, which has now affected his blood sugar levels and increased his exhaustion and weakness.

Photo Dec 03, 3 53 14 PMOur current stay has caused a rescheduling of an MRI that we were supposed to get in St. Louis in just a few days. Basically, Elijah has GOTTA GO really soon because if any more issues arise, the more likely his MRI and stomach surgery will be postponed again. And now more than ever, we GOTTA GO up to St. Louis and get this procedure done.

FUN FACT: Noon today, we will be batting .500 for the month of December. We GOTTA GO home.

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