Two decades. Twenty years. Today is D day plus TWENTY years. October 1, 2003, I heard those infamous words, “Yes. He has Autism.” I can’t believe how fast the time has gone. The saying, “the days are long but the years are short,” is SO true (and some of those days were incredibly long).
As I think back, there are SO many bad days I could focus on. Minus a day or two each year, when I allow myself to think about them, I do try to focus on the blessings (for the most part). I try to dwell on how far Dave has come and how many little miracles we have witnessed along the way. However, it got harder to do that once puberty hit and he really regressed.
For a time, all of the hard work Dave put in and all of the naturopathic ways we took, helped tremendously. I remember this particular video from when he was 10, and, MAN, he was really on the road to recovery. Then puberty hit and his speech took a hard turn. And then 2 years ago, fate upped the ante on our lives with grand mal seizures that never seem to go away. In spite of all of that, everything we have done HAS helped. I see kids that live in diapers, constantly screaming or banging their head against the wall, because of the continuous pain they are in. I know that would have been Dave, had we not struggled (and still do to this day) to make sure his diet is on point. I know all of the supplements he takes make a huge difference as well. I know all of the incredible amounts of time and money I pour into this house to make sure it is as ‘clean’ for him as can possibly be, have resulted in some major triumphs. I know all of it matters. And that is why I will never stop, even though it all takes so much time, money and hard work.
There is much pain in the life I’ve lived in these past two decades. But by the same token, there is so much joy and love that I’ve experienced within it. When you live a lifetime trial, you learn to see what is really important in life. You are able to focus on the tiniest miracles and celebrate them like they are the greatest triumphs. You don’t take anything for granted. And you really don’t sweat the small stuff. Although, at the same time, there are days I DO sweat the small stuff. Because all of the emotion that is stuffed inside of me, there are days, usually right after a seizure, when something little happens in my life and I explode on an unsuspecting soul. Like lifting the lid on a pressure cooker, a little bit of steam eases out. The saying, “hurt people, hurt people,” has never been more true than in this life I’ve lived.
At a point a few years ago, my sister was able to catch me at a vulnerable point. She broke through the armor of pain I held in and she helped me try to process some of my traumas. I know I freely write about my pain, because it’s part of my catharsis. But, if you’ve ever tried to call me after a seizure, or even initially, after Dave’s diagnosis, I most likely wouldn’t talk to you about it. Once the depression is safely locked away inside of me, and I can share without crying, then I will speak. But that is exactly what I shouldn’t be doing. I should let the emotion out. Aimee says, “Emotion is e-motion, energy in motion and it wants and needs to come out.” However, I fear if I let it out, I won’t ever be able to stop crying or function in life. So, I keep it all locked inside, though my sister continues to try to help me, “Heal what needs to heal.” Because of her, I have done a ton of work and self-reflecting. In spite of it all, I do try to be a better person each day. I fail frequently but I will never give up trying.
After Dave’s seizures started, I wondered, “how do I process a trauma that never ends?” Every day I am literally in fight or flight. At the slightest noise, my heart drops. I’m on constant ‘guard’ and ‘watch’ for the signs of a seizure. I live a life, daily, of PTSD. The only break I get is once a week when Dave goes to his Dad’s. Maybe that is one reason I am such a workaholic. My job, which I truly love, is a huge blessing to me. And when I focus on my work it helps me to keep all of the other emotions and thoughts safely locked inside. So I am beyond thankful for that ‘break’ each day.
At this point in our lives, I’ve come to realize that I can’t fully process a trauma that never ends. This is a lifetime trial. However, this is where I’ve learned the truth of the “footprints in the sand,” story. My life is a testament of the strength and perseverance of my Lord and Savior, Jesus Christ. Because, you see, I have no more strength. But He does. I have no more ability to persevere. But He does. I have no more capacity to deal with anything traumatic. But He does. Thanks be to my Lord and Savior.
Some people tell me I am strong. To that I say, “no I am not, but He who lives within me, is.” Thanks be to my God. It’s now that I’ve realized the truth in that footprints story. I’ve lived it for the past two decades.
Footprints in the Sand
One night I dreamed a dream. I was walking along the beach with my Lord. Across the dark sky flashed scenes from my life. For each scene, I noticed two sets of footprints in the sand, one belonging to me and one to my Lord.
When the last scene of my life shot before me I looked back at the footprints in the sand. There was only one set of footprints. I realized that this was at the lowest and saddest times of my life. This always bothered me and I questioned the Lord about my dilemma.
“Lord, You told me when I decided to follow You, You would walk and talk with me all the way. But I’m aware that during the most troublesome times of my life there is only one set of footprints. I just don’t understand why, when I need You most, You leave me.”
He whispered, “My precious child, I love you and will never leave you, never, ever, during your trials and testings. When you saw only one set of footprints, it was then that I carried you.”
Now I see it so clearly. He has been carrying me these last two decades. And I know He will continue to do so, every day, for the rest of my life.
After I wrote this blog, we went to church. The first worship song they sang is the one that makes me cry, every time. And I knew it was no coincidence that today, of all days, they chose to sing this song.
You’ve already won
By Shane & Shane
There’s peace that outlasts darkness
Hope that’s in the blood
There’s future grace that’s mine today
That Jesus Christ has won
So I can face tomorrow
For tomorrow’s in Your hands
All I need you will provide
Just like you always have
I’m fighting a battle
That you’ve already won
No matter what comes my way
I will overcome
I don’t know what you’re doing
But I know what you’ve done
I’m fighting a battle that
You’ve already won
There’s mercy in the waiting
Manna for today
And when it’s gone I know you’re not
You are my hope and stay
When the sea is raging
Your Spirit is my help
He’ll fix my eyes on Jesus Christ
And I’ll say that is well
Oh I know that it is well
I’m fighting a battle
That you’ve already won
No matter what comes my way
I will overcome
I don’t know what you’re doing
But I know what you’ve done
I’m fighting a battle that
You’ve already won
I know how the story ends
We will be with you again
You’re my Savior my defense
No More fear in life or death
I know how this story ends
No More fear in life or death
The hope I have, in Jesus, and our future, is what keeps me going. I know one day that Dave and I will be in a place where there is no more suffering, no more tears and no more pain. And because the years ARE short, I know, in the blink of an eye, all of this will just be a memory. So I do try to enjoy life. I savor in the good days (even though I’m on constant watch). And when the days get hard, I lean on Him and He carries me through, HIS footprints in the sand.