Yesterday was Alex’s monthly eye appointment at the IWK. He & Evan have been anxious to see Chris, so I had asked Gwen last week if she thought it would be okay. She thought that Chris would love to see the boys. I told Evan that he would be allowed to miss school to accompany Alex and then the three of us would go to the hospital together. Alex & Sarah busily started making cards.
Alex’s eye appointment went well. He had a senior medical student, Sarah, and his favorite orthoptist “Dr. Mike” checking him out. This was the first visit since he’s had his new glasses with his full prescription and no patch or drop, so they spent some extra time making sure that all was well. His vision had dropped by three letters, but we had been expecting that. ”Just a bump in the road; he’ll have good vision days and bad vision days. At this point, we only will be alarmed if he has a two line drop from his best vision,” Mike explained. He was thrilled with the way the new glasses are keeping his eye turn in check. Before Alex’s surgery, he had an inward turn of 66 diopters, or 35ish degrees. Yesterday, his turn was variable (in or out) and only measured between one & three degrees!! Hallelujah! For the first time in five and-a-half years, Alex gets to go two months between appointments rather than his usual four weeks!
After we finished up with Alex’s appointment we left to see Chris. 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”. At the moment, he does not have a tv because they feel it would possibly keep him from sleeping, interrupting valuable healing time. 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 found Chris up & dressed and in a wheelchair. He has lost a lot of weight and his left hand was curled inwards. He reached out to me with his right hand. I told Chris who we were, but 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 last night, 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 was close!) and asked if they had a basin in case he threw up. They came and helped me get him up & onto the couch in the patient lounge next to Chris’ room with a cold washcloth on his head. The reassured him that he had done the right thing if he was in school, but that they were there to help him and he would be okay. 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 that 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 than 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 had held his hand and he rubbed them furiously!
On the way home, 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.
At bedtime as always, more emotions came out. When I was tucking him in, 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 Gwen’s journal, I couldn’t speak about it without being brought to tears. Alex wanted 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.
Needle who?
Needle little sympathy?
Gwen told me that she’d tell Chris that joke when she’s with him today and will make sure Chris knows it was Alex!
When he was upset last night, I told Alex that he & Chris have more in common than the rest of us do. Alex has been on a marathon of his own these past five-and-a-half years, trying to retrain his brain to use his right eye. We don’t often look back, but when we first started the patching process, Alex was legally blind. He qualified for special education funding at school and we even had to buy him a sippy-cup to drink from because he couldn’t find his dishes on the table and kept knocking his cup over. In preschool, he had to be partners with his teacher in gym so he wouldn’t get hurt. I had to go to the school on Alex’s first day of Primary because he had fallen and scraped both knees when he couldn’t tell where the playground stopped and the pavement started.
It seems like a lifetime ago.
Alex’s vision isn’t perfect now and it never will be; it’s normal for him though. Chris will be struggling and healing from now on and although he’ll never be perfect, we know that he’ll improve towards a new normal more than he is now. There will always be bumps in the road and some days will be better than others, but he’ll get there. Just like Alex will never be able to see a movie in 3-D, there are things that Chris won’t be able to do either and that will be frustrating.
Alex’s finish line is in sight. He’s run his race and is almost at the end. There were some days we didn’t think he’d ever be off the patch, wearing his full prescription, looking at us with a straight eye or be able to go more than four weeks without a trip to the IWK, and here we are!
Chris, however, is still at the beginning of his journey and that finish line is still off in the distance.
Alex can now empathize with Chris even more and has asked when he can go to visit him again…
You can follow our friend Chris’ story at: http://marathon-of-hope.blogspot.com/
