Saturday October 3 - Angels in the Middle of No Where

Annie slept in her bed, last night, for the first time in a long time. Since your stroke, Annie has been shadowing us around and playing musical beds depending who needed her the most.

This morning, Quinn slept in. He is still sick. I’m up at 5:30 am and eager to get going for the day. I was worried that he may have Strep. throat. He could have picked it up from a friend of his who had it last week. I make a note to ask the nurses about the risks.

While I wait for Quinn to get up, I retreat Tara’s hair – just to be safe. After the treatment Tara and I have a small battle over, of all things, hair things. Small stuff but she wasn’t budging and neither was I. Tara stomped off to her room in a huff. I let her cool off for a few minutes then just as I was going to try and talk to her, the phone rang. It’s Assieh, “What’s wrong” Her first question – Am I so veneer that she can tell something is up by the way I say “Hello”? She asked again. “Oh, you know sometimes mothers and daughters have rough spots – today we are having a rough spot.” I said.

We talk…actually Assieh talks – I listen. “Just give her a hug and tell her you love her and that you will sort out the problem another time.” I go to Tara and do as instructed and life is good again. I have such wise friends.

I realize that Tara and I will bump heads a lot more as her hormones flow into puberty and mine drain into menopause. We will need you to be the calm voice of reason in our home.

On the car ride we talk about hunting and whether hunters help animals or not. Quinn and Tara have strong opinions on this subject. I’m reminded of your thoughts: “Hunting is only a sport if the deer have guns too”. I try to offer some balancing thoughts that good hunters may be more humane the Mother Nature sometimes. They are quiet and reflect of this.

Tara enjoys the silence because she has just discovered the Magic Tree House series of books and demands complete silence in the car so she can read.

Quinn wonders aloud if Uncle Bill has found a wife yet. “I know he has two girls in Montreal from the fish in the sea.” He said. “I hope he likes them”.

When we get to the airport, Quinn asks are we in the middle of nowhere. I point out that I didn’t see a sign saying ‘No Where’, and if we where – I wasn’t sure where the middle would be. “Well, I think we ARE in the middle of No Where.” He says.

I sometimes feel that he is right – We are in the middle of No Where. This marathon hasn’t got mileage markers. The result is, you have no idea where you are. Did we just cross the start line or are we 1 or 5 or 10 km into it? It would be nice to know where we are. We are not at the beginning and we are certainly not at the end… so I guess that means we are in the middle of ‘No Where’. A tough place to be.

When we get to the hospital, you are awake and quite responsive. You have left sided finger tone and your left leg lifted up a little. You asked how the Angels were doing! You had taken out your NG tube again because someone forgot to put on the restraints. Not me this time.

I showed you some pictures that Norris (fellow runner) had taken on the Walk for Hope night. I explained what happened that night. I told you how Jay had spoke to the crowd and asked them, as they walk or run, to pray for you and send positive thoughts and energy to you after every 29 steps. I think you smiled.

Richard and Lena visit for a little while. They brought some goodies from the RumRunners Relay. They had a T -shirt from the Walk for Hope. The shirt had over 200 signatures on it showing support for you. Many of the runners ran with little signs saying: ‘I Run For Hope Supporting Chris Cashen’. When they told you this, I could really see your face contort a little into a smile this time. That was so nice to see.

After they left, you got restless with you right leg. I couldn’t tell what your concern was. It’s very frustrating. There are moments of good communication and then I can’t figure out what you are saying. I know you are frustrated. So am I.

I talk to the charge nurse, Missy. She’s very nice, and shows me you chart. The urology consult happened yesterday! They added another drug to your mix that, in time, should help your urine flow. The UTI seems to be resolving.

Missy gives me a handout that outlines your care and who is responsible for what along with their phone numbers. This information is great, It’s too bad it took 2 weeks to get it to me. That would have saved some anxiety for me and your parents.

My anxiety stems from the fact that I know enough to know of all sorts of things that could go wrong and not enough to know that, with time, a lot of things will go right.

The phone rings. It’s Steve. (Chris’ brother from Ottawa) He says how you are doing and tells me that they had just booked tickets for your parents to fly down on Monday. Steve and Laura are planning to come down a little later in the month. Steve talks to you briefly, you listen and move your lips but I can’t tell what you are trying to say to Steve.

Dr Walling visits and tells me that it’s just a UTI. Don’t stress on that. These things happen and we are only “one kilometer along in the marathon”. “Your job” he says, “is to be a wife and a mother – that’s should be your priority. Give your children as normal life as you can and be there for Chris, but don’t get worried about an UTI.”

Dr. Walling advises me that I have to pace myself. We can expect changes for improvement for 6 months to 2 years. It’s such a long time. Two years is almost 25% of Quinn’s lifetime. So much happens with children at this age.

I have to agree that he gave sound advice. But I believe that I’m doing a pretty good job of that. I restated my concern. Nobody told me about the UTI and yet the urology consult that was requested 10 days ago was only acted on now. It seems odd that the day I call the patient liaison, Karen, and express my concerns, is the day the urology consult was done.

Dr. Walling is a quiet and thoughtful man. Hehas a very calming bedside manner. But I felt like he talked to me like a child – giving me instructions about my personal life rather then just addressing my concerns. I just wanted to be kept in the loop. I want to know how you are doing. I can see and measure the small changes myself. These changes give me faith that there will be more improvement in the days and weeks to come. It’s the silent big changes that scare me. That’s the sort of thing that got you in the hospital in the first place – the unidentified ‘critical hypertension’. The unknowns are the scary parts – not what I can see.

We go to dinner, Tara makes a wish in the fountain after dinner with a penny she found. I didn’t ask her wish I just silently wished her wish came true.

We go to the Commons play-park after dinner. They are setting up for the ‘Run for the Cure’ event. There strings of bras decorating the fencing. Hundreds of bras. Tara likes the turquoise one with gold swirls on it the best. I was waiting for the question – When can I wear a bra? But she didn’t ask … thankfully – I don’t want her to grow up until you are home. We play on the play ground equipment.

We get back to your room. You are still in your chair but sleepy. We visit for a short while, but Tara and Quinn are coughing everywhere. The cold air has irritated their throats. It’s time for an early bed if we are going to chase this cough away.

We go to Lenore’s apartment. Unfortunately, the keys that the office gave me earlier today, were not the right keys! We were locked out. I was tired and a little deflated after my talk with Dr. Walling. “Six months to two years” keeps running through my head. I start to weep. “We’ll just have to go home – we have no place to stay.” Tara looks at me and says “Mummy, you can’t drive home – it’s not safe, maybe the neighbors will have a key?” She suggests, applying her knowledge of small neighborhoods to a city apartment building. “We need a plan B”. She says.

I start thinking about getting a hotel room for the night. We load all our things back into the car and I remember a name that Janice from PEI gave me. Her cousin lives very near the hospital. She had given me her phone number.

I had never met Mary and Stuart, but as soon as I called and identified myself, Mary immediately asks “Where are you now?” Without and hesitation, she gave me directions to their home. I am touched beyond words at the open arms to us.

We talk for a little while. It turns out that they lived in Ottawa a few times. Tara and Quinn seem very comfortable in their home. They sleep in 15 year old Andrea’s bedroom. Tara’s eyes light up at all the interesting things in her room. I think she has found another older friend. Quinn is thrilled to be sleeping on a mattress on the floor. “It’s like camping”. Cough syrup and teeth brushed and they went off to sleep.

I am tired. I try to write in the journal but I keep dozing off. I give up and go to sleep. A restorative sleep.

I dreamt about Angels in the middle of No Where. The Angels looked a lot like Assieh,Mary and Stuart.