It’s been 10 years….

Cuddling in BedIt’s been 10 long years of mornings since I discovered Cayden, our firstborn son, dead in his bed at 4 ½ years old. 10 years of tears. 10 years of missing him daily. 10 birthdays, 10 Christmases, 10 Easters, 10 Halloweens, 10 years of life he was not able to live. 10 years I was not able to be his mom. And I loved being Cayden’s mom.

IMG_1238He would be 14 ½ now. That is hard to fathom. I wonder so often what he would be like, what our lives would be like. And interesting enough, it is never very different than what it was then. That is how it works with holoprosencephaly. The kids don’t really have a chance to grow up. Their broken brains and broken bodies betray them, not allowing them a chance to do the things most other kids get to do.

Cayden was a bit different though, on the mild side of the HPE spectrum, and he was making excellent progress. He was getting better at using his speech-to-talk device. He was beginning to add weight from better chewing and swallowing, so he could eat more real, calorie-full food. He was starting to figure out how to race around in his power chair. Cayden was getting stronger in mind and body, and we were excited and encouraged at his almost daily improvements.

I perhaps have been quieter on the blog lately, and in general about Cayden, as people might suppose, as his memory fades. But that is not the case. Actually, I probably talk about him more than ever, as his siblings inquire more and are able to hear more and more of his story. I have an outlet for my broken heart and it is into my other kids. Which is just who needs to hear about him most, I think.

Cayden Power Chair 8:6:07

We all still miss him daily and often discuss what and how our lives would be impacted by his 14 year-old boy self still being here. Would we be able to have the other kids in activities like they are now? Or would our days circle around Cayden’s therapies and programming? Would we still be homeschooling? Would we still be able to be active in the things they like? Maybe, maybe not. But we would have other things we like and enjoy that C could do: a bike ride/power chair ride on the greenway instead of a mountain bike trail, running a 5K with Cayden in a running chair, riding the elevator instead of taking the stairs as we go on our homeschool field trips.

Happy Cayden

Things would certainly be different, but I think that at the core, our family dynamic would still be the same, if Cayden was still alive with us, rather than only here in memory. We often comment that he is with us, in his ever-present butterflies, that follow us around. We make efforts to remember him, and think of what he would like about an outing, or event, or just the chatter at the dinner table, to share him and his glow, and his special wing flap, with his siblings.


I want to get real a minute, for the grieving moms out there, for the HPE moms out there who are so, so scared of the aftermath of death. We miss him, certainly, but the horrible, gut wrenching, never-ending pain can and does fade over time, as it has for us, when faith takes over.


But the guilt, and the what-ifs are always there, if you allow them to be, and if you allow the devil to find a crack in your faith. It is a struggle. It is a HARD struggle. He finds your guilt, your what-ifs and makes it seem as if you could have changed the past, just by one simple act. Just doing XYZ, would make things oh-so-different. Just getting a trach. Just having a night nurse. Just dealing with the beeping of the apnea monitors constantly going off.


I have to force myself to remember that those what-ifs, those choices made, were made in great prayer and great consideration at the time. They were the right choice at the time, and no devil on my shoulder whispering in my ear for years, makes them the wrong choice. Perhaps things would have had a different outcome, but we don’t know that the different outcome would not lead to the same finality of death. It’s in God’s time to call us home, after all.


The thing I think about the most, as time has passed and the most soft spot, the most guilty spot, I have is, “Why did I not even THINK to perform CPR on him?”


I have beaten and battered myself up on this. The devil has laughed and laughed and laughed as I struggle with this. He keeps me down as I think about this, replay that day in my head. He brings it up when I miss him the most, when I’m at peace about Cayden’s passing, or when I’m just sitting around.


But my answer, then and now, was this. “WHY?”

What was there to gain?

In my heart, in that instant of discovery, I knew Cayden was gone.

In my heart, in that instant of discovery, I knew Cayden was better off.

In my heart, in that instant of discovery, I knew it was not what I needed to do.


But the years slowly go by, and I still question myself on this.


My response, then and now, is “WHY NOT?”

The why not lies in Faith.

The why not lies in truth, knowing Cayden is in Heaven.

The why not lies in knowing that Cayden was perfectly healed.

The why not lies in knowing that this was to be his destiny from before he was born. it was just a matter of when.

The why not lies in finally knowing the answer to when.


Cayden had a very broken body. His brain was malformed, in my womb, at the earliest stages of pregnancy, due to a genetic translocation. It was not my fault, nor Joey’s, but a design of his Creator. Not only was his brain malformed, but so were his eyes, his ears, his arms, his toes, his digestive system, and what proved fatal, his airway. In other posts, I share all his specific issues, but we knew Cayden was the owner of a perfectly normal soul in a broken, mixed-up body. We knew Cayden was most likely destined to die young, the doctors said he wouldn’t even make it hours past birth if he made it that far, and we were blessed to parent him for 4 1/2 years.

DSCF1307Cayden was the sweetest, most gentle, most happy kid, for having such a non-responsive body. He loved his mama (for food), loved his daddy (for sleep), loved his sister (for giggles), loved his pets (for soft fur), loved his church (for music). He tried so hard to improve and grow and make progress. He wanted to walk, he wanted to eat, he wanted to talk. And he was working his way towards that. Big, big strides were made in January 2007. We were happy. We were so excited for the future, for better days for Cayden.


So when, in that instant of discovery, I found him lifeless, I knew it was the wrong thing to do, to revive him.


To revive anyone after being without oxygen for a period of time, can cause life-long struggles with brain damage. To revive Cayden, who already had a malfunctioning, partial brain… what would that mean for him?

Regression of all the things he was learning, more frustration, more anger?

Regression of his spirit, trapped even more, in an even more broken body?

Any damage to his fragile brain could have taken away even the most basic skills he was learning, and perhaps truly make him the vegetable the doctors said he would be.


I couldn’t do that to Cayden.

In my mama’s heart, in that instant of discovery, I knew.

I knew Cayden my lame child, was dancing with Jesus.

I knew Cayden my mute child, was praising the Lord.

I knew Cayden my wheelchair bound child, had run right up that path to Heaven.

I knew Cayden my broken child, had been fully healed.

I knew God had answered Cayden’s prayer, and our prayers, and the prayers of many faithful prayer warriors.


God called his name, and Cayden ran.




One more thing…. God has an angel that whispers on my shoulder too. At times of grief, it tells me where to find hope. One such verse I have been given is Psalm 21, for 2/1, the date of Cayden being called home. I’m not sure if I have shared it or not before, but it brings me great comfort from Cayden in times of pain. Sunday, I found it again, and again, it brings me peace. I simply replace the references and pronouns to “the King,” to Cayden.

Psalm 21: 1-6

O Lord, in Your strength Cayden will be glad,

And in Your salvation how greatly Cayden will rejoice!

You have given Cayden his heart’s desire,

And You have not withheld the request of Cayden’s lips. 

For You meet Cayden with the blessings of good things;

You set a crown of fine gold on Cayden’s head. 

Cayden asked life of You,

You gave it to him, 

Length of days forever and ever. 

Cayden’s glory is great through Your salvation,

Splendor and majesty You place upon Cayden. 

For You make Cayden most blessed forever;

You make Cayden joyful with gladness in Your presence. 



And Sunday at worship, we sang Glorious Day by Passion . In moments like this, I hear Cayden reminding me that he is ok, and he is in the presence of God.

I was buried beneath my shame
Who could carry that kind of weight
It was my tomb
Till I met You
I was breathing, but not alive
All my failures I tried to hide
It was my tomb
Till I met You
You called my name
And I ran out of that grave
Out of the darkness
Into Your glorious day
You called my name
And I ran out of that grave
Out of the darkness
Into Your glorious day
Now Your mercy has saved my soul
Now Your freedom is all I know
The old made new
Jesus, when I met You
You called my name
And I ran out of that grave
Out of the darkness
Into Your glorious day
You called my name
And I ran out of that grave
Out of the darkness
Into Your glorious day
I needed rescue
My sin was heavy
But chains break at the weight of Your glory
I needed shelter
I was an orphan
But You call me a citizen of heaven
When I was broken
You were my healing
Your love is the air that I’m breathing
I have a future
My eyes are open
You called my name
And I ran out of that grave
Out of the darkness
Into Your glorious day
You called my name
And I ran out of that grave
Out of the darkness
Into Your glorious day
Songwriters: Sean Curran / Jason Ingram / Jonathan Smith / Kristian Stanfill
Glorious Day (Radio Version) lyrics © Sony/ATV Music Publishing LLC, Capitol Christian Music Group

A new vision of the son who went ahead…


As the years pass slowly by from the time of Cayden’s passing, my grief has begun to take on a different form. Well, perhaps not my grief, but my imaginings of my son.

Instead of imagining him as he was… wheelchair bound, deaf, and communicating with a computer, I now have lost that image in my mind somewhat.

Now, I see a healthy, tall, handsome, almost 12 year old boy, standing at the top of the stair steps that are my living children. Sometimes I feel his presence as we stand at church, and wish oh-so-much that I had a third hand to hold, a third blond head to pat (now almost as tall as me!) I understand now that the image of Cayden as he was… is slowly becoming Cayden as he is.

In Heaven we are promised perfect bodies. Not bodies that don’t work well. Not arms that twist funny because of mis-shapen elbows. Not ears that can’t hear with out cochlear implants, or a mouth that cannot speak because of muscular weakness.

In Heaven, we are promised perfect bodies. Strong healthy bodies. Bodies we cannot even imagine in their perfection. And if Cayden is in Heaven NOW, then NOW he has that perfect body. He IS that tall, handsome almost 12 year old boy. He IS that loving, gracious son I desperately miss. He IS singing praises to our creator, and hearing the angelic voices rise with his, at the actual foot of HIS throne.

Easter 2007So it makes perfect sense that my image of Cayden has changed. Morphed through time. I don’t imagine him at 12, curled in a wheelchair, with back and hip issues, eating through a tube, and possibly breathing through a trach, like so many of his 12 year old HPE friends. I cannot. That is not MY reality, nor is it Cayden’s reality.

I do remember him as he was… a bright, vivacious loving smiling four year old boy, just as I remember my daughter as she was… an adorable totally cute 2 year old girl, signing to her big brother. That is a lovely memory, but it is just that. A memory. A remembrance of how things were… not a reality of what they have become.

Instead, I have a complex daughter, who misses her big brother at times, and desperately wants him back. A daughter who was a sibling to a special needs child, (a tough job for sure), and has a vague recollection of that, but now she gets to see her mother grieve at strange and unexpected times, and feels it is her place to comfort me. I have a middle child, who was thrust into being the oldest against her will & her personality.

I also have a son, who is mad at the world that he didn’t get to meet his big brother. Who understands the story without a context, without really knowing what life was like back then. Who desperately wants to meet his big brother, but can’t begin to imagine what his life would be like if Cayden were still here.

Last Pics of CAnd I have a memory of a broken boy, who wanted so desperately to walk, to talk, and to run with his sister. Who is now running those fields of grace & streets of gold with the his miscarried siblings he alone gets to enjoy for now.

I look forward to our reunion. To hugging my first born son who is as tall and as strong as sons should be. A young man who is taller than his mom, and who looks after his siblings. God willing, that day will be here someday soon. Until then, I love on the kids I have with me, with so much love it hurts my heart at times.

My burden is sometimes hard to see, yet the image of Cayden is always there. The promise of a better place, a healing we cannot understand, and a future eternal with Christ and those we love.

2 Corinthians 5 :6-10, 17  teaches us that

So we are always of good courage. We know that while we are at home in the body we are away from the Lord,  for we walk by faith, not by sight. Yes, we are of good courage, and we would rather be away from the body and at home with the Lord. So whether we are at home or away, we make it our aim to please him.  For we must all appear before the judgment seat of Christ, so that each one may receive what is due for what he has done in the body, whether good or evil.

Therefore, if anyone is in Christ, he is a new creation. The old has passed away; behold, the new has come.

My imaginings are Biblical and they are real. They are the new reality I live within. That of missing my son daily, while each year changes the grief. It ebbs and fades, only to come crashing back at times like these. Tonight marks 7 years since I kissed him goodnight for the last time.



A few of C’s favorite things… 28 Days of Cayden, Day 25

I thought I’d change gears and write some fun stuff about Cayden. I’ve said how he was such a fun and super kid, but he really was! He was a sweet sweet boy who definitely had personality. His personality really blossomed when he began to hear, and just kept getting bigger!

Mommy & C

Mommy & C, last Mother’s Day as an only child.

He loved his Momma. I know, I put myself first. But really, Cayden was a momma’s boy! He was always with me, more than a typical child would be, and really I loved hanging out with him. I liked watching his wheels turn as he tried to learn new things. Watching him persevere until he could do something new. I really tried to treasure every moment I had with him, as we knew from the beginning he was probably not going to be our child forever. Ironically, now he is a forever child, forever 4.

upside down

Silly play with Daddy was always good for giggles!

Cayden loved his Daddy too, but in different ways. I said before, Daddy was for sleeping and napping. He was for watching NASCAR, and for playing airplane. Daddy was definitely NOT for eating. He started this behavior after Skylar was born and needed her newborn attention. Cayden realized that if he didn’t eat for Daddy, Mommy HAD to come and spend some time with him to feed him.  I would feed him a few bites… no problem. Joey would pick up the spoon to feed him a few bites… no eating! He literally would snap his mouth shut and turn away. It was somewhat funny to me because he was communicating loud and clearly. Joey, however, thought it was more frustrating than funny.  Don’t tell me that kid wasn’t smart! This stubbornness lasted for at least a year or more. Really. No food with Dad!

Elmo coloring

Working hard on his Elmo picture while standing.

Cayden loved to color. After we got his stander, the favorite activity by far was coloring. He loved it. He would color for an hour if you let him. We would choose a picture to color together. I would pick a handful of markers and allow him to choose which he wanted. We’d put the marker in his hand, and as I mentioned before, he would push the marker back and forth to color the area. He would color the ENTIRE section in, and if he missed a spot, he worked really hard to fill that little hole in. If he slid & went out of the lines, he would fuss, and if I couldn’t calm him down, he would stop, throw the marker down & turn his head away, clearly saying without words “This one is ruined. I need a new one!” My little perfectionist! His favorite thing to color was from his Elmo coloring book & he would always color things exactly the color they were in real life. Elmo is red, Big Bird is yellow. Pumpkins are orange. Apples are red. He was quite specific. Then one day, he colored a zebra blue and orange– a break through! He was finally getting a little creative! Yay!

C on vibrating seat

C watching TV on his vibrating chair pad. Like many deaf children, he loved vibrations of all kinds.

Cayden loved his movies! He watched a lot of movies with all of our driving around. How else was I to keep a hearing impaired child with very little arm mobility busy on 3+ hour drives? I’m not sure how much he understood, not being able to hear the movies, but many are pretty easy to understand even without sound. And he would often giggle at just the right places, so I think they made sense to him. First it was anything Elmo, all Elmo, all the time. Then Baby Einstein videos; we would do his listening therapy while he watched these videos with no sound. Very good for visual therapy! He loved Monsters Inc., Toy Story, and Cars, particularly Cars. Lightning McQueen was his favorite. He died before most of these movies had sequels, but I’m certain Planes would have been his recent favorite!

Cayden loved vibrations. Anything that vibrated was a hit with Cayden. From toys, to cushions, to chair pads, to extra loud speakers at church, he grinned when he could feel the floor or the earth move. Like many deaf children, this is a great way for them to interact with their world, and to get some sensation of hearing (without needing aids). We tried to use this to his advantage as much as we could, and I always looked for toys and things that would help him in this area. Baby toys are good for this, so are ‘old lady’ chair cushions & back  or foot massagers.

Monkey C

C swinging in his Halloween costume at a friend’s party.

Cayden loved to move. Especially to feel the wind in his hair (or on his bald head!). Anything we could do that would give him that sensation of wild movement, with strong vestibular input, he LOVED. He would giggle and ask for more. Swinging was fun. Twisting the swing up as far as it would go was better. Twisting the swing, then pushing it sideways, so it would go crazy while spinning was the BEST! I guess driving the power chair was about the best feeling he’d ever had. One day we were practicing, and I was trying to get him to drive up the street. Instead, he kept going into the neighbor’s yards. Bouncing over the bumpy yards was so much more fun (& more input) than driving on the smooth street. He knew he shouldn’t be driving in their yards, but he couldn’t help himself! Offroading in the power chair! I could see the mischief in his eyes as he giggled the whole way, driving so fast, I had to run to keep up. Wee HA!

C on Sammy

Working on arm, neck and torso strength while doing equine-assisted occupational therapy. It also was great for his hips and legs.


Cayden loved his horses. We started Cayden on hippotherapy (equine assisted therapy) which was for him considered his OT. He started this around 3 years old and rode until he passed away. He loved to ride, and weekly we would take the long drive to the barn.  The best part for me, was watching him get so excited the moment we turned onto the gravel road that led to the barn. He would arch and pull at his carseat, trying to jump out of the chair. He knew that he was going to get to ride, to pet and groom the horses, and maybe pet the bunny. Sometimes he got to bounce on the trampoline too! So much fun!.

When he began riding at Shining Hope Farms, he could not hold up his head. If I held him on my hip, he would flop backwards, unable to hold up his torso. After 9 months of weekly hippotherapy, he could. I could hold him on my hip without struggling. He could keep his head up to meet your eyes. He wasn’t always staring at his wheelchair tray. He progressed! Then we moved and quit riding for a while, until we found a new barn. At Wings of Eagles Ranch Cayden got to take therapeutic riding lessons with a class. He played fun horse games like leapfrog, and trotting around poles. Putting beanie babies in matching houses and other fun activities. He loved the interaction with the other kids and especially loved the games. It was as much work as at Shining Hope, but more fun!


newborn S

This has to be the sweetest picture of sibling love ever.

Cayden loved his sister. From the moment he saw her at the hospital, Cayden was smitten with his baby sister. He loved her and loved to watch her. As she got bigger, she would play with him, bring him toys, toddle around on his chairs or standers. She would push him in the wheelchair when she started walking. She adored him and I loved watching their relationship develop. Skylar went to all his therapy sessions and sat quietly and played. Sometimes she would blurt out the answers that Cayden had to work so hard to find the words for. The frustrated looks he would give her were priceless! But she would sit with him, ‘read’ to him, sign with him… it really was a sweet friendship.

S reading to C

Skylar ‘reading’ to Cayden. She had memorized the books and would tell him the stories. Such a sweet memory!

She was with me when we went to wake him up that fateful morning, and just didn’t understand why he wouldn’t wake up and giggle at her like he usually did. Skylar had preschool that morning, so we sent her to school, so we could handle the situation and the grief. We ended up making the hard decision to not have her see his body again, but when we went to get her from grandma’s after school, she immediately said “Where’s CC?” and the explanation had to begin. She didn’t understand life without him, and oh, how hard it was to explain death to a 2 1/2 year old.

I hated the fact that my child died so young, but we had been preparing for that day from before he was born. We had already grieved and cried and gone through so many of the ‘what if’s’ that when the dreadful day came, we weren’t completely unprepared. We never really thought we’d have as long as 4 1/2 years with him. We really thought we’d get only a few hours to know him. But Skylar didn’t know that. We hadn’t shared that possibility with her. But now we had to! It was hard! It is hard!

I hated that the death of my child, exposed so many of our friends’ children to their first experience with death. Our playgroup, our church friends, our other friends, so many had young children, and we had to explain it, or their parents had to explain why Cayden wasn’t here anymore.  I always explained that Cayden had gone to be in Heaven with Jesus, and could walk and talk and run now, that he was perfectly healed. Perhaps it’s good for children to hear the gospel at that young of an age, the truth of Heaven, but I hated that I was the bearer of that harsh reality because of my child’s death.

How do I know that he is with Jesus? you might ask.

The Bible tells us in 2 Corinthians 5:1, 6-8

For we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven, not built by human hands. Therefore, we are always confident and know that as long as we are at home in the body, we are away from the Lord. We live by faith, not by sight. We are confident, I say, and would prefer to be away from the body and at home with the Lord. 

We have a home in Heaven, an eternal house, built by Christ. We can be confident that to be away from the body (that is, dead), we are at home with the Lord.

In Revelation 21:3-5, it says it again:

“Look! God’s dwelling place is now among the people, and he will dwell with them. They will be his people, and God himself will be with them and be their God. ‘He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.”

He who was seated on the throne said, “I am making everything new!” Then he said, “Write this down, for these words are trustworthy and true.”

How can we be sad at Cayden’s death, when it means for him, to be at home eternally with the Lord? To be made brand new! With a new body not made by human hands. Knowing this, being confident in this, I cannot have a heavy heart. Cayden is made new. He is at his eternal home. Someday, I will join him and we will rejoice together, celebrating birthdays for eternity with Jesus.


More about Heaven tomorrow…