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.

 

Shira

 

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
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