Tuesday, October 20, 2009

Monday October 19 - A Disability is an Attitude

We had a late start to the day. Quinn had difficulty getting up – but after a lot of cheerleading, on my part, we were only 15 minutes late – unacceptable by your standards but I think we have done well considering everything.

Called the charge nurse and pain is barely controlled – the pain limits your sitting up time in the chair
Also push for another swallow assessment.

I walk Annie to work the air is crisp, fresh and clean. The exercise feels good. Work was good lots of puppies today – one of my favorite appointments. A new puppy with a new pet person – I see so much potential – so much hope for a good loving relationship. These appointments always make me feel good.

When I get home there is a message from Dr. Bagnell’s office. Who’s Dr. Bagnell? I return the call. Apparently, he (or she?) is your urologist. He/she wants to do further tests to check out your bladder. The efficient receptionist has an appointment for you already for Dec 8!

Dec 8th; that’s day 100 of your marathon. I don’t think I understand how specialists work – We haven’t even met Dr. Bagnell. How can Dr. B have a plan for diagnostics without consulting with the patient.

I point out to the very efficient receptionist that you are still in the QE2 and perhaps the tests can be done while you are there since urination is a handy skill to have. Especially since most of us need to do it several times a day. I picture catheters every 6 hours for you between now and Dec 8; that’s 50 days at 4 times a day = 200 dates with a catheter! She laughs nervously (I think) and repeats the appointment time and kindly says she will send us some information in the mail.

I realize I’m going to have to get used to this system. I suspect this maybe just the beginning of specialist appointments like this.

I vent my frustration on the garage and make a dent in cleaning it out and getting ready for winter. Soon, I’ll be able to put the van in.

At dinner, I take the opportunity to remind Tara and Quinn about the busker group we saw this summer in Halifax. A Hip-hop breakdance group called Ill-Abilities. They were a group of young men who danced hip-hop but did it with a difference. The crew are labeled disabled by society standards. ‘LazyLegz’ one of the groups founders was born with a genetic disease, Arthrogryposis, that affects muscle and bone growth of the lower half of his body.

Their web site says it the best. “Each dancer has taken those limitations and created their own unique style. The purpose of this team is to show the world that anything is possible as long as you keep an open mind, are creative, and adapt yourself to any situation.”

To them, the word disability is an attitude not a state of being.

As we settled down to watch them perform, there was a call for volunteers. Quinn stepped up and learned a few moves in front of the audience and then took part in LazyLegz grand finale act – “The Leap of Faith”. This involved LazyLegz holding his body and legs parallel to the ground and balance on his crutches then he proceeded to walk overtop of Quinn while he was lying down.

It was a pretty good act. Quinn and Tara were very impressed and when we got home, we showed you the video that I took of this feat. You were impressed too.

I can’t believe our good luck in having this experience to draw on for strength at this time. Both Tara and Quinn felt that LazyLegz and his crew were very talented not disabled. I hope this has addressed their fears.

For the Blog reader check out LazyLegz at http://www.lazylegz.com/content/view/15/16/lang,en/

Today Anne and two of her children that you know from the church, Evan & Alex, went to visit with you this morning after Alex’s eye appointment.

Anne writes:
“When we got to the hospital, we checked in with the nurses’ station to make sure it was a good time and they said that the nurses were in with him at the moment, but would be finished soon if we’d like to wait. We did wait outside his door and discussed the sign posted on his door that says, “Chris would like to have a tv”. After what felt like about ten minutes, (a nurse had come by and explained that he was having a “procedure” to which we replied, “no rush”!) a tall, thin, blond nurse told us we could come in.”

“The three of us went in together and I told Chris who we were, but I he already knew. The nurse told him to put his head back because he was leaned forward and she helped him rest his head on the headrest of the chair. I bobbed around a bit, trying to find his line of vision. (As it turned out, when I was getting the boys settled into bed, Alex told me that the hardest part of the visit was not being able to make eye contact with Chris!) “

“We made small talk and Alex read the card he had made to Chris who seemed to listen patiently. The nurse giggled when he finished: “Roses are red. Violets are blue. I hope you feel better and I’ll bet you do too.” (100% Alex!)”

“The nurse asked Chris if his hip was still hurting and he nodded. She explained to both of us that he had just had Tylenol and that it would take 5-10 minutes for it to kick in. Chris grabbed my hand and whispered that it still hurt. I looked at the nurse questioningly, not knowing what I should do and she told me to just give it a few minutes…”

“The boys told him that we ran in the run for Chris and all the events that have been held at the elementary school in his honour.”

“Chris held and rubbed my hand and told me that he couldn’t see out his window… wanted to go outside… wanted to go home… I told him that he’s come so far already and he said, “It doesn’t feel like it.” “

“At this point, Evan told me that he felt that he felt like he was going to faint. I took a look at him and he was ghostly white. I got him to sit down in the chair and put his head between his legs. At the same time, I got Alex to busy himself signing the sign-in sheet. I continued to talk with Chris and hold his hand. Evan looked worse & worse, and started stripping off his clothes. I asked him if he thought he’d be sick and he told me he wasn’t sure. I asked him if he could get out into the hall. He went into the hall and lay down on the floor outside Chris’ door. (Evan fainted in music class in Gr. 2 and has a phobia about it happening again. His doctor told him that if he feels like that’s going to happen, to get his head low to the ground. He took that literally and wouldn’t get off the floor in the hall.) I went to the nurses’ station (thank heavens it’s close!) and asked if they had a basin in case he threw up. They came and helped me get him up & into the patient lounge next to Chris’ room and gave him a cold washcloth to put on his head. The nurses there really are wonderful!”

“Meanwhile, I went back into Chris’ room where Alex was trying to make small talk. I explained to Chris that Evan had been light-headed and went to lie down. Chris told me that he hoped Evan would feel better and asked me where Sarah was? I explained that we had come to Halifax because Alex had an eye appointment at the IWK and that Sarah was at preschool with Ms. Ellen, but that she had made him a card. Chris asked about Evan again, so I went back to check on him. He was starting to feel better (he’d been overwhelmed I think) and we both went into the room together so that Chris could see that he was okay. Evan was able to hold Chris’ hand and we all told him we loved him. We told him that we’d come back to see him again. I said that we knew he was tired and that we were going to go so that he could have a rest.”

“He took my hand, and very clearly thanked us for coming; his eyes made an effort to try to find the boys.”

“When we got outside the hospital, Evan very clearly came back to life. I teased him that he’ll never be a doctor and he very quickly agreed – he wants to be a cartographer and thinks that’s a much less stressful job! Surprisingly, they both felt that it was a good visit and that Chris looked “better then they’d expected.” They both had been afraid he’d be bed-ridden. They were both fascinated by the IV in his arm that wasn’t hooked up to anything. His hair was shorter than they remembered and his beard surprised them. They didn’t mention anything about his left side or the fact that his emotions aren’t easily read through his face; just Alex’s comment about the lack of eye contact and he was further away than Evan & I were. All three of us held his hand and he rubbed them furiously!”

“This afternoon, they asked if Chris was like Jesus because he had died and came back to life?! I, shocked for a moment, replied that he had never actually died, but it was certainly a miracle that we were able to see him & communicate with him today after all he’d been through.”

“Tonight, at bedtime as always, more emotions came out. Alex was upset because he can’t communicate what he feels about Chris without crying. I explained that there is nothing to be ashamed of when you care about someone so much that it makes you cry… I asked him if he remembered that Daddy & I had cried when we thought that Chris was going to die? They did and I think that gave them permission to be upset. The first few times I read your journal, I couldn’t speak about it without being brought to tears.”

“Alex wants Chris to know that he hopes he gets better soon; he just wasn’t able to say that out loud today. He also wanted to tell Chris a joke, but wasn’t able to get it out:
Knock knock!
Who’s there?
Needle who?
Needle little sympathy?”

“Thank you for sharing Chris with us! “
Anne, Evan, Alex, Sarah, Olivia & D’Arcy xo

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