Lately things have been a rollercoaster. I find myself inspired to write but I find myself second guessing the realities of the content. I look into my little boy’s eyes and my heart aches for him, even on a ‘good day.’  Do I really want to share the hard stuff?  I’m hoping that my experience doesn’t cause people to pity me but rather enlighten those that are interested in my life and reaches those who may be on a similar path that need to hear that they aren’t alone.

I hate watching him struggle – struggle to breathe, struggle to go to the bathroom, struggle to keep food down, struggle to learn new things, struggle to find any way to communicate, struggle to hold his head up, struggle to find any level of comfort, struggle to see, struggle to hear and struggle with pain.  All of his struggles remind me that my struggles are only hurdles, but it doesn’t change the constant feeling of being on a rollercoaster.

This past Sunday, Bear and I were headed to Vancouver for an event.  It had been planned for a while. Caregivers were scheduled, girls were accommodated, flights and ferries booked. We were up early to greet William when he woke up. We administered his first meds and enjoyed some snuggles before his morning caregiver showed up. She got settled and took over and then we raced to get ready to leave.   Just before we were about to walk out the door, William’s caregiver says, “I need to talk to you and Bear.” I was already frantic as we were running a bit late so I replied that, “We can’t do it right now or we will miss our flight, but we can chat tomorrow as we will both be around during your next shift.”  This day was supposed to be fun and already it had a bit of a cloud over it – what did she need to talk to us about?

About an hour later, we landed in Vancouver and I already had a voicemail from the caregiver. I quickly called her back on video chat. When she answered it took everything in my power not to have a complete meltdown. William was having a significant amount of tone and was biting his lip badly. I yelled through the phone, “you need to get his lip out from his teeth!” She was quietly telling him, “let go” and “don’t do that” repeatedly which is not how we deal with this type of situation. William’s tone is uncontrollable and everyone who cares for him knows you have to physically shift him and actively remove his lip from him biting it. Once the lip was free, I could see that he had done damage. Although I had seen this all happen before, his caregiver was panicking, and I knew the situation was only going to get worse. So I called Beast (my 13 year old daughter) and walked her through the steps she needed to take to get William settled – she was magic and did everything I asked calmly with so much love and care.  Meanwhile Bear was on the phone with our long-time caregiver B who was going to go and save the day.

Beast’s final instruction was to stay with William until B got there and that is exactly what she did. When B arrived, William was fairly calm. B immediately took over, allowed the other caregiver to go home and was happy to stay till the next scheduled caregiver arrived.

In amongst all this chaos, there was concern that William had maybe suffered a seizure or multiple seizures but his caregiver couldn’t even articulate what she experienced. The aftermath didn’t resemble typical behaviour after a seizure so William had some quiet time with B and then had a fairly typical afternoon.

All of this took place within about 20 minutes. I was standing in the pouring rain in a parking lot and when it was all over, I looked up at Bear, shook my head and said, “I guess we can go try to enjoy the day now.” We walked in absolute silence. All I could think about all day was William and I must have sent about 50 texts to check in with Beast, B and William’s afternoon caregiver.

As if the emotions from that day weren’t enough, the next day that caregiver quit on the spot and walked out.

When she left, I was alone with William. I cried – like ugly cried.

How do other families deal with this type of life?

How do other families hire caregivers and watch them walk out on their kid and their family?

How do they make plans and continually have to cancel them or re-arrange everything to execute the plans every time.

How do other families cover when caregivers don’t show up?

How does William feel when he has to meet new people who might be his next caregiver?

How does he feel when he never sees his favorite people again?

How am I going to cope with this rollercoaster for the rest of my life?

Am I being selfish?

Managing emotions around my son’s health and wellbeing, caring about every caregiver who works with William, being emotionally available for two teens and putting my heart and soul into my home, my kids, my husband, our schedule, our plans, dreams, goals and attaining any level of normalcy is a full-time emotional rollercoaster.

The good times are good but there is always that little piece of me that isn’t relaxed and worries about the worst case scenario. I strive for the good times to out-number the tough times and with 4 days left in the week, I’m hoping I can pull off some good times – challenge accepted.

~ Keely

Keely is an author and advocate for children living with disabilities. She lives on Vancouver Island in beautiful British Columbia, with her husband, her son William who has cerebral palsy, her two daughters and several four-legged friends.