For a moment this morning, I thought about the garden next year – a flicker of normal thinking. It was a brief thought but a welcome thought. I have noticed that the ground is soft. Although it is still pretty cold … I can’t wait until I get my hands in the soil. I was working in Mum’s garden the day of your stroke. It seems fitting if we could end this chapter of our lives with me elbow deep in beautiful nourishing soil again.
Your NSRC doctor mentioned that talk therapy would be good for you. “A multiple-modality approach”. She said. To date, I don’t think you have seen a psychologist. More important then that, you don’t think you have seen one yet.
I walk in to see you eating breakfast. Oh, you look so good. You are wearing one of my favorite blue shirts that make your eyes shine. A few days of beard growth adds to your look, I think. It seems like a very long time since I last saw you. Your hug felt wonderful and charged me up for the day.
As you sit on the toilet, we talk. Most of our deep conversations take place in the john these days. I ask about some of your experiences at the NSRC this past weekend. “I don’t know.” You said. “You don’t know?” I ask. “Listen, if you could make money by the amount of things that you DON”T know, then I’d be a millionaire … I’d be a f---ing millionaire!”
Your regular PT is not working today. You have fill-in PT and a new student. I asked if it were possible to video-record you walking so we could show the children. The PT team got you standing and then walking between the parallel bars to warm up. After this we went into the hallway and you walked almost halfway around the hallway loop. It is tiring work for you but you stick it out.
When you are in physio, you are of an entirely different mind set. You are upbeat and enthusiastic … almost joyful. I had thought that this was because of the wonderful PT you have working with you but today I realize that’s it the act of physio that brings out the best in you. It is not who you are working with that is important … although I think that you have been blessed with wonderful PT’s since you started this journey.
You want to show the video to the children on the weekend. You want this to be a present to Tara. “I don’t know when I can handle being a good parent to the children. They are the most important part of my life. I don’t want to breakdown.” We talk about how we will protect them form your dark moments. You start thinking like a protective parent again. “If I breakdown, then we should try to remove the children from the situation to protect them from seeing me like that.”
You have more negative thoughts. This talk drains me emotionally. You are stuck in the punishment stage. “I am planning to spend the rest of my life with you.” I said “But I’m running out of ideas of what to say to you to help you get past this difficult time.” This must be your rock bottom. You have to get past this stage.
You struggle with your thoughts and search for answers to unanswerable questions. “The more answers I have the more I can continue to move in the right direction. It takes me longer to process things. What you can figure out in seconds takes me an hour. I don’t get there as fast but I still want to get there. I will need your help ... because I want to be a whole person. I want to be of some use.”
Your OT visited. We discuss the plans to accommodate stair lifts. The insurance plan doesn’t cover much. So we will have to be creative to make these changes. You start to feel a little down with this information. You interpret the lack of insurance funds as being a good reason for you to vanish. You reason “If I wasn’t here then these costs would go away.”
The OT and I are quick to shut down where your thinking is going. “We may save on some small monetary costs but think of the huge emotional costs to your children.” Growing up without any father is a big disadvantage to any child. “Kids living with parent who have challenges grow up being more empathetic and stronger as individuals.” Your OT agrees. She knows first hand. She has a parent who had some significant health issues when she was a child.
Challenges make you stronger … not weaker.
We talk about your wheelchair. The OT is in the process of identifying a wheelchair that would be appropriate for you. Soon we will have an idea of what type of chair and the associated costs.
Next week you are going to attend a wheelchair skills group. This group meets twice a week to teach wheelchair safety tricks. It should be good because you might be able to learn to compensate for your left neglect.
After the OT left, you said with despair “I wanted out. Why didn’t you let me go?” You start circling the decision to do the surgery. I know that it is the stroke that is talking not you – but it’s still hard to hear. I know that you will get better with time but you question this.
You question your ability to parent our children. “Your intuitive sense of how to be a parent is still there.” I said. “You may have to adjust the ‘how’ part of parenthood but you still know the why, when and where parts of parenthood.”
“You will have to help me be a parent – I don’t even know what they ask me sometimes …I’ve changed.” I think that your relationship will change with the children … but it could be a better relationship. You point out “I will need more sleep and with all my crying, Quinn wants to comfort me. I could read to Quinn, go to bed early with Quinn … he would love that.”
“I’m learning as we go, Gwen … as much as the kids are. I do feel good about that but with Tara on Saturday. Not hugging her – I didn’t even know it. I am so busy thinking about myself, that I can’t even think about. “Look how lucky we are that Tara is a good communicator. She didn’t lock her feelings up like I would have and let her hurts fester. She told a grown up and shared. That is great that she can do this.
We will all learn from each other.
Next Monday is Tara’s birthday. We go to the gift shop in the VG and look at cards. One for Tara. We will celebrate her birthday on Sunday. We also get a card for your OT who is leaving for a different position on Friday. She promised you that the two of you would go out for coffee on Friday.
We get back to your room and you are stuck on bad thoughts again. Out of desperation, I say ”This is a conversation that you can have all by yourself now … why involve me … It makes me feel bad. We have been over this and over this. You must know all my answers to your worries by now … we have done this dance so many times.” Just as I was about to loose it with you, the phone rings. It’s your Mum. Saved by the bell.
Dr. Mendez’s office called her and Dr. Mendez is coming to see you tomorrow first thing in the morning! She asked if I could be with you when you meet Dr Mendez. I’m on call tonight and the children go to school and I go to work at 8AM. I don’t see how I can swing a road trip to Hailfax at 6:30 in the morning on such short notice.
Your Mum is worried that without an advocate by your side, Dr. Mendez will not be as impressed with our plea for help. I sincerely doubt that. Your Mum is a gifted letter writer. I’m sure her letter said all that needed to be said … and who better to make a plea then a mother ... even Dr. Mendez has a mother … he should know how powerful a mother’s will is.
On the way home Tara plans her birthday. “Gift cards for books, an ice cream cake, a whole day with you Mum and for dinner I want beef wraps with chocolate mousse for dessert. This is the benefit of having another planner in the family. I can just sit back and take orders, rather then have to think of everything myself.
Tonight’s bedtime call you circled the ‘I am not much of person’ thought. After a day of pulling you out of these deep dark holes, I am worn out. About all I could do was try to change to subject and talk about Dr. Mendez. “Just be yourself and tell him that you are very motivated to want more for your recovery.” I said. “Let him connect with you.”
Maybe there will be hope with Dr Mendez.
“I just want to say one more thing.” Oh no, I think, please don’t go down that path again – I don’t think I can do it. But you surprised me with what you said next. “Do me a favor please.” I hesitate, “What?” I ask. “When you brush your teeth tonight, look in the mirror and smile. Remember that I used to make you smile.”
After a tearful goodnight and sweet dreams, I made a sign and stuck it on the mirror so that the three of us can think of you while we brush our teeth … and smile.