The news of the swallow test hit me harder than I’d hoped. Though I’d tried not to get my expectations up too much, it had been a few weeks since I felt any real disappointment in Vernon’s journey. I hadn’t become too used to disappointment, or perhaps I wouldn’t have held up such hope for yesterday. It just seemed that all those months or waiting and trying things on our own should have come to a bit more fruition than applesauce.
One thought I often have when trying to get re-grounded in Hope is “maybe one day this will make sense and I will be more grateful than I can imagine now.” It looks rather small and foolish when I look at the words spelled out for me like that. But it’s not “a reason” or “a great purpose” that I see in this dramatic change in our joint-trajectory. At first, I found that helpful. But now…in a world where nothing seems like “reason enough” and we keep hitting our wheels against walls, sometimes I have to both micro- and macro-manage our dreams. Or rather one gives way to the other on any given day.
For example: yesterday, I was disappointed in Vernon’s swallow study. Although I did allow myself room to grovel in that space most of the day, I worked through some of my major fears by discussing them with a good friend or two. And today, I was able to focus on the fact that we were able to take Vernon on on a walk in a wheel chair for the first time. I think about how Vernon has never done this before: Breakthrough, right? It is a surreal experience to walk in deep disappointment and good progress at the same time. Emotionally, I can become suspended, as if all my cells are speaking to one another but no one can agree on common ground and nobody settles.
Vernon’s reality is this: good, bad, high, low, sad, glad, fearful, hopeful at any given moment. I try to experience the emotion appropriate to each change as best I can, but my reactions to things keep changing too. What used to frighten me to death no longer does. But also…I don’t thrill in hope like I once felt compelled to. Its a special thing to feel it honestly. The highs aren’t as high but the lows aren’t as low. And nobody can tell me if this is a good thing or not. It just is, I guess. What frightens me is that I see the future full of so much energy being exerted to help Vernon but so little recovery to match it. It is more than slightly depressing.
BUT THEN. BUT THEN. The inhale and the exhale. I have to grab at something…and the truth is, if yesterday’s results had been more pleasing, I would probably be beside myself with glee to be walking Vernon out in his chair today. Because it was a new thing. A good new thing. And we passed the test I’d set. Strange how important it has become to keep raising the bar where I can.
We walked to the library center at the end of the street. Joe came with us. Our friend Jen did too. I think next time I can probably handle the walk with just Joe on my own. But Vernon couldn’t tolerate it long and asked to go back, not without first losing his patience a few times. When I asked him why he was jerking his head so emphatically, which he has been doing lately on our outings (I think it may be overstimulation and something like vertigo, perhaps) he said it was to clear his head….and other time, “to get ahead.” He said his brain and thoughts don’t always feel connected. I think this is positive because he is beginning to speak clearly about his own experience. This is where I feel he can start helping himself, or at least we can begin to help him better. The staff has also noticed that though he has wild mood swings, it is easier to bring him back to calm and peaceful place more quickly than before. So progress there!
The spiffy birthday socks Vanessa sent from the UK. Love them.
Once we got back, we settled vernon on the PEMF mat for a half hour and still had enough time to take him outside for painting. Though he was agitated on our walk, I’d say this is the calmest he had been of the past few times he’d painted. I don’t know what he was thinking about when he made this, but this is what came out:
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Loving you
Your words
Your thoughts
Your sharing all of this daily with us.
❤️🙏🏻e
WOW! WOW! WOW! How many WOW`S can i write?? what a good looking couple you are ??!!..and those socks?? did they make you giggle?? (when we saw these socks Paul and i giggled so loudly in the shop ..people stared,but i didn`t care ..these were for vern , i`m so proud of my brother..and so proud he is wearing them on his first trip out in his wheelchair along the street) thank you so much for sharing Allison ..it is the little things that can change your whole day!! keep on going out together and enjoying your creating time ..and smile and giggle loud!!
xx love to you all xx please let vern know i loved to see the new socks
“If love is the treasure, laughter is the key.” Yakov Smirnoff
ps i have had a bad attack of vertigo the last few weeks … it is not nice at all, so i can imagine moving around could make vern feel quite bad…
Hi Vanessa! Yes, i love them…and the others you sent. I can only imagine what he feels when he is moving. But we hope to get him used to it with time. I am so sorry you have had to suffer with Vertigo. It’s an inner-ear thing, right? I hope it clears up for you soon…that can’t be pleasant at all. Thank you also for the other gifts. I brought him the book to dialysis and read out of it to him. He kept wanting me to move on to the “seventies” where he would remember some of the characters and stories. Thank you so much for sending it! He says thank you!
thank you Allison xx yep we used to go in the seventies with our dad and grandad ..vern had his own seat that my grandad made .and it hooked over the front so he could see the match!!! maybe something you could bring up..see if he remembers???
just let me know if i can send anything from England for vern ..or for any of you ..of cause i will do my best to get it and send it …. send you all love and hugs
Allison,
Vern’s socks from the UK look so good on his first walk. Glad to see him and you out walking and getting some fresh air and for Vern to see the outside.
Loved to Joe with you all as you walked. A neat little group.
Hugs,
Becky
Scott Peck, in his book ‘The road less traveled’ the first sentence he says, ‘Life if difficult’. He wrote a sequel in which he says, ‘Life is also complex’. You’re traveling a difficult and complex road but you see little blessings on the way. We’re praying that your faith and hope will stay strong in Him.
Frank
Allison,
There is so much I’m feeling about your disappointment,
its just so darn hard to have hope for the future, when
your in that place! I have visited that “place” many times.
From my side of it, I see so much promise & improvement in
Vernon. When I first started sitting with him, I had a
hard time understanding his speech, now it talks so clear and is so charming!! My favorite words he uses often are
“sure” and “right!” With his accent they come out so special! I feel very blessed to have met him & becoming friends with him!! He loves you so much Allison, on his Birthday, he just wanted to be with you…..its the same love he has always had for you!
what beautiful words to read Barbara ..yes, my brother has great love for Allison, he used to talk to me about it often, before the accident .. i know in my heart he loves to be with allison (and the children)..they have been and always will be, the centre of his world xx
I wasp disappointed at results of swallow test as well. A refreshing 1st walk- what a great idea. Hoping I’ll get to join you in one soon.
I will call you – love you
Whatever the painting is, it looks like reaching up.
When I first saw the painting just now, I immediately thought ‘ah, yes, he’s painted his outing; a pink wheelchair and the handle of the chair… being pushed by somebody with golden shoes and glowing hair!’. If that is the case, the trip – although maybe causing some agitation – was clearly a very significant and a memorable part of his day, enough so, that he wanted to paint it 🙂 Blessings to you Ali, thank you for sharing,we are with you in spirit on this journey xxx
gosh vicki , now i have looked again ..i can see just what you have described…Allison has on her golden shoes and her glowing hair..just perfect!!