Sometimes life can be like a banana split.
You want all the toppings and mounds of ice-cream, but later, when you’ve downed three scoops of the creamy treat and are holding your belly, you ask yourself again why on earth you ate the whole treat? But a few weeks later as you pass an ice-cream shop your eyes grow large, and you remember how yummy that dessert was the last time, but you forget the agony that came after.
Vance and I had planned a cruise in the Caribbean. Our son Kyle who is twenty-eight has severe autism, and we are his primary caregivers. A couple of times a year we take a break from medications, sleepless nights, high anxiety, and just life in general.
I will be honest with you, I love vacations and being worry free. About three days into our holiday a sense of peace will wash over me and a lightness I can’t explain. My mind is released from worry. That’s if we know Kyle is doing well before we get on the boat.
If Kyle is in a high anxiety state, so is the mom. I drag myself onto the boat and part of me doesn’t want to leave the land.
Kyle’s umbilical cord seems to have never been detached from me. We have been attached since his birth. From the time a child is born, a mother dreams that one day her baby will work its way to the edge of the nest, teeter a bit, then take a leap of faith and fly.
Kyle has never received his wings. He’s never left our nest.
Kyle has all the hopes and dreams of any young man, but autism has snatched them and pulled his potential out of his reach.
When we planned our current cruise, Kyle was feeling well and had been in a good spell for months. I was really excited about the worry-free vacation we were going to have. But ten days before we left he hit a bipolar period. My prayers started going up to God to take away this spell he was in. Kyle was worse each day as his anxiety climbed higher and higher.
His day staff was going to look after him from 7 am – 8 pm each day and our daughter Charity and her husband Dan were going to take care of him from eight each night till seven each morning.
The day we left Kyle was awake when I got up at 4 am. He had barely slept in a week. Some nights he’s awake all night during these episodes and my heart aches for him. There is nothing we can do to alleviate his anxiety except let him shower. He will stand in a hot shower for thirty minutes and we will throw caution to the wind when it comes to our hot water bill during this time as he showers multiple times a day.
We drove out of the driveway worried about how he was going to do. I feel like a mother bird wanting to spread her wings over her tiny baby bird in her nest. I want Kyle to feel safe and secure at all times. But Vance and I will be gone one day and Kyle needs to know he will survive these episodes even when we are not around.
Tammy Goslow gave a speech at my book release dinner. She had been born with special needs and had lived with her parents into her thirties. One day she realized she was ready to spread her wings and try flying in the world on her own. Low and behold she was wonderful at flying solo. Her parents had taught her everything she needed, to be an independent woman.
She encouraged parents not to hover over their special needs child and to let them be as independent as possible. Then she said something that fluttered close to my heart:
“Sometimes a parent can’t let go because they need their child to need them.”
My mind turned that thought over and over again many times throughout the past several months. After the book release dinner, Vance has taken over more and more of Kyle’s care the past few years and became his primary caregiver. It used to be me. For twenty-five years I was his sole caregiver. Vance would help here and there, but bathing, feeding, laundry, dressing, and medications were my department.
Then God began to change my husband’s heart, and he took over most of Kyle’s needs. I thought it was a dream come true. Kyle had become too big for me to handle physically. I used to dream of not having to do the hour routine every morning. Kyle requires a lot of patience. Just giving him his seizure meds can take up to half an hour as Kyle obsessively asks his caregiver to flush the toilet over and over again. The toilet flushing is an OCD behaviour but Kyle feels it help him manage his anxiety.
But my dream began to fizzle.
The more Vance took over; the less Kyle needed me. Vance became his favourite. It used to be me. He couldn’t live without me. I missed the hugs Kyle gave me every morning, his enormous charming smile and his teasing and laughing as I chased him around bugging him as he giggled. Kyle has a remarkable sense of humour.
Not being needed by Kyle was devastating.
A mother has a hard time stepping away from the nest. Since my son couldn’t leave the nest, I needed to slip away. I had to let other people take over my responsibilities. Kyle began to attach to his day staff. He has four girls who are now his primary caregivers during the day. His eyes light up when they come in the door. He thinks he has four girlfriends. They have become his only friends. Without the girls, his life would be dull and lonely. Sometimes they get teary eyes when they tell me of something new Kyle did. They will spend months working with him on something they know he wants to do but has too much anxiety to accomplish.
They spent a year working with Kyle to be able to go swimming in a pool.
One day a text came in from Nicole. It looked like a picture with water. I held my breath. I clicked on the image, and this is what I saw…
Tears filled my eyes. My son’s world was getting better. When his staff first came into our home, he was living a poor quality of life and was very ill. Vance and I could barely take care of him, and we were exhausted beyond belief. I dreamed of the banana-split-life with all the toppings.
Greg is a new staff member for Kyle. He and Nicole took Kyle to the pool together and were able to convince Kyle to get in. That’s as far as he got. If I could help you to understand for a moment, it would be like your child telling you they had been accepted to Harvard. That is how excited Vance and I were.
It took many of his staff this past year of pulling into the parking lot for months, then spending weeks trying to get him in the building, then weeks getting him to the change room, then weeks getting on his bathing suit, then putting his toe in the water and then hopping in the pool.
His staff has a texting group, and when Kyle accomplishes something he couldn’t do before, someone texts the whole team and they celebrate together.
I had dreamed for so long about one-day having freedom, of not being the only person in Kyle’s life to care for him. I wanted the banana split and all the toppings. Now I have it. Believe it or not, it doesn’t taste as good as I thought it would. Sometimes I get a tummy ache. I miss my role as Kyle’s primary caregiver.
Kyle’s staff has been cut back recently to shorter days till they can hire more staff. When Community Living Algoma called to say his hours were being cut back, I wasn’t disappointed. I could shorten the chord again. They had been taking Kyle from 8 am to 8 pm each day, he used to come home at 4 pm. But we had decided to sever the umbilical cord a bit more and do what we thought Kyle wanted instead of what we wanted and give him longer days with his friends.
I felt completely lost.
I had the banana split in front of me and all of a sudden I didn’t want it anymore. I wanted my son home at 4 pm each day. I missed him. I needed him to need me. Tammy’s words were coming to the forefront of my mind. But it’s not about what I want; it’s about what’s best for Kyle. He also deserves a life outside of the small circle of our family.
Hopping on the cruise ship this week was tough knowing Kyle may have a rough week of anxiety, sleepless nights and not eating. But his sister and staff will care for him, so we have left him in good hands. But I will still worry…it’s what I am quite accomplished at doing.
I’m sailing in the ocean far from the worries of my life and my son whom I think needs me. But I know he will survive through this rough patch, and he will learn he can survive without us. It is our goal to give him the confidence to have a world without us one day when we are gone.
This week I will eat my banana split, I will enjoy every last lick of my spoon, and when I get home, I am hoping my son will have an enormous smile knowing he can fly from the nest one day, even if it looks a bit different from every other bird who left home.
I will have to let him go…that is what a mom is supposed to unselfishly do. But it usually hurts the mom more than the child.
It may be time for your child to leave the nest and you’re holding them back. Maybe you’re that mom, and you’re having a hard time letting go like me. It’s going to hurt, I promise you that, but your child will most likely do better than you hoped.
You will cry a little…but you will survive, and hopefully, your child will thrive. Afterall you’ve taught them everything they need to fly.
You know what they say:
If you love someone you let them go, if they love you, they will return💗
What is the price of two sparrows—one copper coin? But not a single sparrow can fall to the ground without your Father knowing it. And the very hairs on your head are all numbered. So don’t be afraid; you are more valuable to God than a whole flock of sparrows. -Matthew 10: 29-31
Believing and hoping,