I want to talk about grief. The real deal. The grief a parent feels when they lose a child. The grief I feel, my husband feels, my children feel.
It’s the hard stuff of life, that I pray others do not have to face, but it is our story, and the story of so many of my friends. The story of holoprosencephaly for many ends this way, and it isn’t pretty. It’s ugly. Super ugly.
As I shared yesterday, we knew from the beginning that Cayden, our firstborn son, was destined to die. We just didn’t know when. I prayed that we could hold him, and have time to love on him, and anticipated him being a donor baby, allowing another child to live in his place. I was ready to make that choice, say that goodbye.
But, the longer we had Cayden, the further away the warnings and death watch became. He was doing well. He was healthy. He was making progress. The week Cayden went to Jesus, I was seriously reveling in the joy that he was doing so well, and thinking about college for him. Yes, really, college. I know, I know, he was 4 & had so many special needs, but the kid was smart! He was really starting to chat on his computer, telling me just how much he liked his cars, what he wanted to eat, and flirting with girls (yes, seriously, he was!). He was getting the hang of driving his motorized wheelchair. He was eating real food.
On one of his last days, Cayden answered comprehension questions about a book we read once, and got them all correct. Seriously! & he got one right that I didn’t; I had to check the story and he was the one with the right choice! This child, this boy who was ‘supposed to be a vegetable, but is comprehending on grade level’ child was amazing. So in the days just before his death, I was NOT thinking about losing him.
Perhaps that is why it hit so hard. When I went to wake him up for school that Friday morning, I found him cold in his bed. How… why…what? and screams I didn’t know were real, coming from my mouth. Screams I had heard once before, as a young teen, when our neighbor had found her son dead in his car in their garage. Screams of a mother who discovers her child is dead.
Take a minute. Take a breath. I don’t mean to scare you.
I won’t go into the details, but it was a whirlwind of a day. A day that is simultaneously etched forever in my mind, and one for which I have few details. It’s hard to describe, and maybe another time I will try, but not tonight. Tonight we’re talking about the aftermath, the grief, the now.
Breathe again. Look away if you need to. Take a moment to hug your kids. It’s okay. It’s not a pleasant topic. But I’ll do my best to try to explain what it’s like to be in these uncomfortable shoes.
The best way to describe the grief is like an ocean wave. That first one, that giant one, comes barreling at you with tsunami force. Some people never fully recover from its intensity. Some become swallowed up by it, never to be the same again. Some just seem to bob along in its wake, but never really stand on solid ground again.
I somehow found my way out of grief’s tidal pull, hanging on to my life raft that is the Bible. I found my way back to solid ground, weak and shaking and seasick, but alive. I held onto my Bible like it was my lifesaver, because it was. Because it IS. It allowed me to see the bigger picture, or a hint of it, and know that it was going to be okay. I was going to be okay. We were going to be okay.
Without faith, without Christ, without a final destination that I desperately long to reach, I would be bobbing too. No promise = no purpose. But I had another child, a husband, a family — one child less than the day before, but still, my family. We clung to each other and to the promise that we WOULD see Cayden again, in a lovely place, in a lovely space. And perhaps we are homesick now, but Cayden is not. He is happy and joyful and at peace.
And that brings us to the now. I am a recovering but still grieving mom. A mom who can be too short with her kids some days. Days when they whine and complain about walking in the store for too long, or eating food they don’t like. Those things just strike me hard sometimes when I’m missing Cayden, my child who longed to walk but couldn’t, my child who longed to eat a chicken nugget and finally did, the day before he died. I have days that I’m feeling particularly sensitive, days when I’ve had a little visit with C in the night. He comes and says “Hi, Mom!” now and again, and I don’t want to wake up those days. I don’t want to come back to reality in which he is no longer here.
The crazy waves of grief are unpredictable. You can be sitting on the beach, enjoying a leisurely sunny day, the water lapping at your feet. When suddenly, a wave comes that knocks you backwards, soaking you, upending your calm. It comes without warning, fast and hard, at the tiniest little things.
Because, you see, the grief never really leaves. Yes, we choose not to talk about it all the time, but it is ALWAYS there, lapping at our feet. Little reminders are always present: his pictures on the fridge, his art projects, his books, his toys, something his brother does that reminds me so much of Cayden.
I get double-edged twinges when I see other boys his age, (entering 5th grade!) typical boys his age, playing soccer or football, swimming on swim team, without a care in the world. Now, these are things Cayden couldn’t do, really didn’t have a hope of doing, so it hurts that he couldn’t, even if he were here, but because he isn’t here, he really can’t do it! That logic probably makes no sense to those of you lucky enough to have all typical children, but to the others, you are nodding your heads in agreement!
Then, I get bigger waves, when I see his atypical friends, his wheelchair bound classmates, his HPE crew, doing things I so wish he could have done. Like the stuff at our oh-so-special Wings of Eagles Ranch: where he could be riding his horse, zipping on the zip line, climbing the rock wall, or getting a ride on the flying squirrel. How he would have LOVED that experience. Just driving down their gravel road brought a grin from ear to ear, knowing he was going to get to ride his horse. How he loved it, & I know how much he would have loved summer camp there too!
Then there are the biggest waves, the expected waves, those that we allow and almost welcome, times like now, at his birthday, and in February, at his heavenly birthday. They are a refreshing reminder that yes, we still feel, yes, we still miss him, yes, it still is real, we did have that other child, one time long ago. 10 years ago.
See, this is the thing. If we didn’t allow ourselves these scheduled times to fall apart, we wouldn’t be able to hold it together the rest of the year. It’s kind of like a big dam at the base of a reservoir: scheduled drainage allows controlled water flow the rest of the year. It allows me time to remember Cayden, to share his accomplishments, to be joyful that he lived!
But, if I had to live with this open dam, this full throttle water output year-round, I could not begin to bear it. It is too much, too painful, too raw. I would need to climb under my blankets and sob until I could sob no more. Because the reality of the death of a child is truly too much for a human heart to bear alone.
And that is where I turn to HIM, my savior and Lord. I weep to him and give my grief to Him, and he gives me back joy.
How can this be? Weeping turns to joy? In Psalm 30 David tried to explain…
O Lord my God, I called to you for help and you healed me.
weeping may remain for a night, but rejoicing comes in the morning.
You turned my wailing into dancing;
You removed my sackcloth and clothed me with joy,
that my heart may sing to you and not be silent.
O Lord my God, I will give you thanks forever.
I find my joy in these simple truths. Joy that my son, whose earthly body was so broken and so weak, is now dancing in fields of gold. Joy that his body, which failed him here, is now new and strong and perfect. Joy that he hears the angels sing each day, in an incomprehensibly beautiful place. Joy that he sits on the lap of Jesus, when he needs some extra love. Joy that he has 2 younger siblings there with him to love on and to pamper, just like he would have here at this home.
If you find healing in the Lord, and find hope in his promise of eternal life, it will bring peace and joy to your hearts. I have the knowledge of the resurrection Lord, and the knowledge that there is a Heaven and I will go there someday. I have the knowledge that I will be with my son (and my other 2) walking the streets of gold, exploring the crystal city of our Heavenly Eternal home. It is not faith, you see, it is knowledge. And with that, that undeniable knowledge, comes joy.
Does that make sense? Am I speaking truth?
I have many verses that have spoken to me and comforted me throughout the almost 5 ½ years we have been without our son. As time goes by, my needs change as my grief changes, and I need new strength. Today, for Cayden’s birthday I’ll share the most special, most important verse of all.
Romans 8:28 says
And we know that in all things God works for the good of those who love him, who have been called according to His purpose.
This is another sticky verse for our family, and made more awesome by the fact that Cayden’s birthday is 8/28 (a simple fact we didn’t see until a few years ago). Cayden, his life, his HPE, his death was for OUR good, for HIS purpose. Who are we to ask why, when it’s up to our God?
Continue reading in Romans and you’ll see more…
For those God foreknew He also predestined to be conformed to the likeness of his Son, that he might be the first born among many brothers. And those He predestined, He also called; those He called, He also justified; those He justified, He also glorified.
Cayden was predestined to be conformed to the likeness of Christ. Cayden was called. Cayden was justified. Cayden was glorified. Cayden is glorified. And so are you and I (or we WILL be someday).
And just one more. Hold on, this one is a doozie!
What, then shall we say in response to this? If God is for us, who can be against us? He who did not spare His own Son, but gave Him up for us all — How will He not also, along with Him, graciously give us all things?
God unselfishly gave his own Son. For Cayden. For me. For YOU! God is a grieving parent. God knows how I feel. God watched the lifeless body of his only Son be laid in the ground. God cried for his child, as I cry for mine.
And He promises me it is for my good.
I came to terms with this fact a long time ago. The fact that I may not fully understand the good in Cayden’s death until I reach the Father’s side. I’m okay with that. I see glimpses now and again, and I am at peace with not knowing the whole picture. I wouldn’t be able to handle it anyway, none of us could.
Those of you who have walked beside me on this journey of grief may be intrigued by the changes in me over time. I think it might be interesting to see how it morphs, from the outside. I can’t fathom that perspective anymore, so if you have thoughts on the matter, please share them with me sometime. I know people think I am some sort of super strong person, but I am really not. I just have a super strong God, who has very comfortable wings to nestle under. A God who knows how I feel, who grieved his firstborn son, and who one day got to see Him again in the glorious place we call Heaven.
I can’t wait to see those golden curls shining in the eternal light on the day He calls me home.