I woke at 5:30am. I can’t sleep – I’m almost giddy thinking about seeing you and what new things you might discover. It’s like a date… A long over due date. The past two months we have spent more time together then we have in a very long time – too bad you weren’t here for most of it – but you ARE here now – and I have so much to share.
At breakfast, I was humming a tune and Tara spoke up and said something I have been hearing a lot of lately, “Mummy, you are off key, please don’t sing, hum or whistle.” Tara has been critical of Quinn’s singing efforts lately too. I take the criticism in stride, but it breaks my heart when Tara is critical of Quinn’s attempt at music.
I tell her of my experience, when I was a child, when I was told I was off key. I told her that I wish I had ignored the comments – no matter how well intended to help me. I wished I continued to try because maybe I would have gotten better. Now, I’m afraid my old brain doesn’t take in music like other people. I really can’t sing. A self-fulfilling prophecy. I suggested ways that she could mentor Quinn. “Guide him and teach him.” I said. I don’t know if she took it in.
I drive in with Megan. We talk about how depression can effect your recovery and how that worries me. You have a lot of things to be worried about, plus the chemical soup that is in your head of neurotransmitters and are all out of balance. It will give you more reason to slip into the darkness. I don’t want to lose you there. I really want to find out about early intervention.
You are resting, when I get to you but wake up easily when Physio Jill and Steve come into your room. Jill says that she was noticed some clonus (I think she said). A sort of muscle spasm that involves groups of muscles. It can cause pain. You have been started on a new drug called bactlofen to help with the pain.
She points out how separated the shoulder joint is on the left side. The joint is very fragile right now. We will have to be careful of the position it is in when rest it.
Sitting on the edge of the bed, you lift your head up and moved to the left slowly but smoothly. You also balanced your torso for 30 second intervals! Balance is another thing to get back. You did some elbow push-ups on each side. That wears you out.
Jill has noted far more tone in you arm/fingers and leg, even flexor withdraw – the natural instinct one has to withdraw from pain. It’s a good sign. The clonus isn’t good. Maybe it’s part of the healing process too?
You had bone scan yesterday and other tests – the nurse is going to look for the results.
Steve and Jill put you in your chair.
Sue and Shirley make an appearance. They wanted to do another swallow assessment with vanilla pudding – you take the spoon yourself and put it in your mouth – there is a short delay and then 3 swallows and you are done – no cough and your mouth is empty. You repeat this with half a tub of pudding. You passed the test but this is just the initial screening test. They will book you for a fluoroscopic swallow on Monday!
You asked Shirley and Sue for a coke, some chips or fries, extra large 4x4 Timmy’s coffee and spaghetti. “No, you can’t yet” Shirley explains “Your swallow is still weak and thickened liquid is the safest. We start with thickened liquids and the move up to harder textures and finally liquids.” She says that you should have faith; the graduation from one texture to the next usually speeds up.
You and Shirley settle on a compromise. Shirley promises that she would buy you lunch on Monday. Little do you know now that the ‘lunch’ well be flavoured barium!
Your voice popped out a few times while talking with Sue – she’s impressed – in fact she is speechless – quite a feat to make a speech therapist speechless. You still have your touch.
After they left, I asked how did the pudding taste after 54 days without food – you didn’t like it initially but by the 2nd or 3rd spoonful – it was good. I wonder if the taste part of your brain has to wake up too and stretch itself. Does the taste perception part talk to another part of the brain that gives you cravings like the Coke?
I believe your withdraw from Coke has been another record. It’s been at least 54 days. Perhaps longer, because you were cutting back on your Coke consumption to allow for some weight loss before the fall marathon season started.
Recently, until the stroke, you would reward yourself with a Coke after a good run or a race. You may have planned to drink a Coke the afternoon of your stroke. I don’t think you did, because I didn’t find the can in the kitchen sink, where you usually put it, when you were done.
When you are able to drink Coke, I think you will deserve it. Consider it to be a ‘water stop’ on your Addiction to Life Marathon.
You were only in your chair for an hour before the pain became so great you wanted back in bed. This pain is going to interfere with the timely move to the rehab hospital.
You want drugs. I think you are starting to understand that you have to ask for drugs if you have pain. I had explained that prn dosing (nurse lingo) means: give as needed or in your case as requested. So you need to request it. “Just say you are in pain. The nurse will help you.” I guide you.
Heather, your nurse today, is a runner too. Her father and mother are runners and have traveled to Florida, New York and Boston for marathons. She hopes someday to make it to Boston too. Heather had you as a patient in the step down unit. More then a month ago. She sees a big improvement in your health since then.
I tell you that Terry and Chris G are going to organize the 2010 Cabot Trail Relay race team in your honour. They figure, because you have inspired so many people to run, there will be more then one team. I don’t know what the teams will be called. My vet-mind suggests Tidal Boars, Tidal Sows and Tidal Piglets. I expect you will have more inspired ideas.
A few years ago, you came up with the Tidal Boars name for the team. You persuaded Ashley, a very talented co-worker of mine at the animal hospital, to make a cartoon logo of a ‘Cool boar, wearing shades with a surf board, surfing a wave’ – She did a great job and the mission to boar-ify your team began.
To go with it, the ‘T’ in Tidal Boars has a wave on the top part of it. You and Chris G took the planning of the Tidal Boar team very seriously. You ordered in boar face-masks from England. You made up a ‘Boars on Board’ sign that resembles the Baby on Board sign. Chris G found some Boar medallions. (Actually, I think, they were for the Chinese year of the pig). You even got coats and hoodies made up with the logo and teammates names.
This obsession, with all things boar, went on for 6 months before the race. But I think you loved to do it.
The bone scan yesterday didn’t go well. Technical difficulties that involved your full bladder. Today they plan to place an indwelling catheter and maintain it until the bone scan is done.
You get on a stretcher and are whisked away to get your bone scan.
When you get back, the porter puts you back in bed. You have been growing a beard the last week. In the past, this was either a sign of the season or the start to a mission like training for a race. I am comforted by the knowledge that you want a beard. However it may have less to do with your resolve to get better and more to do with the quality of razors that are used in the hospital.
With your weight loss, your face has taken on a slight thin chiseled look lately. I think that between that and your newly grown in hair – you are looking pretty good.
You ask me to sleep with you – I lay my head down for a little while.
A little while later, Barb, the social worker came for a visit. She asked you about running every day. You whisper “I have an addictive nature – I worry that if I don’t do one day –it will be easier to give myself permission to skip other days.” You are looking a little sad after saying this – perhaps you have realized your streak has ended and may not start again. You felt you let us down.
You are struggling with where you are right now.
Sensing your distress, she gently reminds you about the last time you talked to her a few weeks ago. “I want to live” you said then. I want to live – important words to remind you of.
It’s time for me to go home. You were getting emotional about seeing me leave. Just as I was saying goodbye, Jay, the minister from the church, walks in the door I’m thankful that he visited. Now I don’t feel so bad about leaving you while you are awake.
You greet Jay warmly. And as Marsha and I leave, the two of you talk together.
At the children’s music lesson, Chella has a new song for Tara to sing, ‘The Rainbow Connection’. Tara is excited to take it on and has most of the words down already. Chella didn’t realize that ‘The Rainbow Connection’ had already entered our lives twice this past week!
After dinner Tara showed how she nailed down the singing-mentor coach role in the family. While Quinn was absent-mindedly singing ‘Do Re Me’, Tara remarked “Wow Quinn that’s really good!” Tara glowed. “That is REALLY good!” Quinn beamed and sang some more. Tara and I both beamed too – It felt good.
We put up the worry wall by Quinn’s bed. Quinn drew a picture of you and your grave. Your eyes have X’s on them. I ask him if he is still worried about this – he says “Yes … Anything can happen!” I quietly suggest that when he stops worrying that you might die – he could erase the picture. He agreed “Yep, but only when Daddy comes home.”
Quinn picks out the ‘Terry Fox and the Marathon of Hope’ story book for bedtime reading. Oh boy – it was tough to read it and not cry.
After the children are in bed, I spend a crazy night packing for Tara and Quinn and me for the weekend. It’s a busy weekend. There is no school on Friday, two birthday parties, Fran is arriving for the weekend and so are Steve and Laura plus I have to get the van fixed. There is a lot of planning and packing for this.