Here's me in that blissfully silent house again. On an informal 'respite day' thanks to grandmother on the other side of town wanting to hang out and overnight with our intrepid hero, her beloved Rukai. I waved him off in Daddy's car, and came in to find the guffawing Mr Tumble gone silent once again. Man, I love that show almost as much as he does but it sure is nice to hear nothing sometimes.
The silence is both a calm before and after the storm. Two different storms to be exact.
Today's plans involve folding and putting away some six weeks' worth of laundry which has been sitting in baskets on my desk, thus making my home office continue to be a dream. Reorganizing closet space from our move in a year and a half ago so we can actually have some room to breathe. Filling out remortgage paperwork and trying to get the bills paid. Sorting through the pile of letters and appointments and organizing what we have to do when the rollercoaster goes up that hill again in January. Plotting out my fundraising event concurrent with the London Marathon, looming in April. My to do list has a to do list. I will jam this into a day and a half because that is what time I have.
My house is a tip.
My son is extremely content.
A delicate balance, but in the tug of war, 'content' always trumps 'clean'.
My time so completely taken by ensuring Rukai's needs are met, that he is having fun, that his fun is helping him learn and progress, that I am laying the foundation for him to have a successful life and lo and behold make it in this life when my husband and I are gone. When this child without siblings is left on his own.
Everything I do, every moment of my life, every word I write, is for my son. And apparently this makes me a 'martyr mom'.
You see, there has been a shitstorm in a place I once thought was an oasis - an online community called Mighty Voices, consisting of folks who've written for The Mighty. This was a community of people all on the same page, talking about disability, advocating for themselves or for their children; some for both. We were all trying to help the world understand that disability is inherently only difference and a clear path in life should be available to everyone.
Unfortunately just the same as Democrats and Republicans will go to battle over gun control and freedom of choice, there arose a battle between disabled self advocates and parents who write about their children's disabilities because of a post which contained black humor that backfired gargantuanly. Parents who write about their disabled kids were tagged martyrs who only write to wallow in self pity about what a burden their kids are. There came a faction of warring self advocates banging the table and demanding that we only write in a certain way, shouting about all that we may not say when it comes to our own lives.
There's battle lines being drawn.
Nobody's right if everybody's wrong.*
Afraid it IS my own life, dears. Scamper back on up to the top of this post and see how entwined our lives are with our kids. How every breath I take is with the purpose to help my toddler become a teen who becomes an adult who not only contributes to society but speaks to society for and on behalf of himself.
Today he is nonverbal. Today I am his voice. Deal with it.
I am his voice because barring a sweet precious few, no one we have met to date bloody listens to his own voice. No doctor looks at Rukai and says 'good morning young man, show me what you have achieved lately?' No, no they just sit behind a clipboard and spout about 'they' and statistics and all other means of medical bullshit that takes away Rukai and sees nothing more than Down's syndrome. I am as fucked off about that as any self advocate is when they are left unheard. I get that. I really do.
But this is OUR journey. We walk it together.
And today I am his voice.
This does not mean I am trying to quash his voice (and how dare you suggest it)?
This does not mean I do not listen to his voice (and how dare you suggest it)?
I am doing everything in my very power to draw out his own voice. Yet this teaching of language and understanding and comprehension takes a far cry longer when you have a kid with a learning disability. He is going on four and has no true spoken words. This doesn't really trouble me until I sit before a pediatrician undertaking yet another box ticking exercise who then decides to label him with a 'developmental age' which corresponds to the slow language build up. What purpose does 'your four year old is actually like a one year old' serve but to knock the wind out of our sails? And I can't write about that lack of language being troubling without being labeled a martyr? I can't write about bawling my fucking eyes out in sheer frustration because yet another doctor has thrown my son away again? This makes me a martyr? Because I write about not letting anyone understimate my son?
How dare you.
I WILL write. And write. And write. I don't write for those who don't 'get' our journey. I write for those ON it. I wouldn't steal your voice, so go on and back the hell off of mine.
And today I am HIS voice.
Some days I get so saddened by the slow pace because I can see the brilliance behind his eyes. I can see the immense frustration when he fails to get something right. And he goes back and goes back and goes back until he succeeds. My pride is boundless. So today I am his voice. So that doctor, that therapist, that education coordinator can all hear him. There are checklists everywhere which deny him his progress and every word I put on paper punctures a hole through the lot. It turns them to ash.
So today I am his voice. Do not try to silence me, because by doing that today, you are actually trying to silence him.
There is a blatant home truth to the root cause of the uproar. Although black humor gets many parents - all parents, not just those with disabled kids - through many a dark moment, there are times when that same humor can fuel the fire of stereotype and harm the goal of inclusion for everyone if shared publicly. Apologies are made, and people move on, right?
If only.
The other fire that gets fueled in the shitstorm is the one where people choose sides and start every sentence with "you don't understand me because..."
You're right. I don't understand you and you don't understand me. And never the two shall meet if we censor one another. Live and let live. We actually are on the same side, despite what you may think. And I'm awfully sorry that you are so pissed off about it, that you have such a level of discontent it lifts you to bash me and call me a martyr.
To date I have written volumes about my son and I can safely say every word has educated my circle of friends to the reality of our lives together, and slowly chips away at those damaging stereotypes. This is the goal. All life has the good, the bad and the ugly. All life deserves to be recorded. All voices deserve to be heard.
One day as soon as is humanly possible you will hear Rukai's. But until then, I am his voice.
*Buffalo Springfield - For What It's Worth
Tuesday, 29 December 2015
Thursday, 17 December 2015
Half speed ahead.
#RunningForRukai
Nearly one month to the day since my heel screamed 'Oy! OFF me you silly cow!' I am beyond happy to report that I am BACK.
I'm pretty sure the acute injury I sustained last month and now seem to have got rid of had to do with the heel collar of my shoes bashing away at a sensitive spot at the base of my peroneal tendon and it flared up. In other words, my shoe beat the everloving crap out of my foot. I know there are weaknesses elsewhere and have identified a sore spot midway up the tendon that I've been foam rolling into oblivion, which combined with rest has put me back on two very short and tentative treadmill sessions this week - fist pumping the air after I surpassed my 20 minute goal today, uninjured. Oh the grin. I think I may have creeped a few people out *a little*.
I ran in my swizzy Chrimbo compression socks and a spanking new pair of my favorite Asics Nimbus which not only support my feet but pretty much caress them, take them on a date and drive them home in a Ferrari. I think I'm officially divorcing my Hokas. I'll even give back the ring. Take THAT you heel basher. Away with you. Go.
Throughout it all, I've been maintaining Operation Iron Arse so all square there. In fact, it occurs to me that all my previous problems have been in hips and core area and this has come on after all that strength work. So stands to reason I now have increased strength significantly amongst the 'usual suspects' that the pain has moved elsewhere, settled in and started frying up some bacon like a pack of squatters. Really? Ok. Ok. So what now?
There's so much science involved in this running lark I feel like I should get an honorary degree. Can't just go run. There are equations and formulae. I feel like I'm living in a petri dish. I am total and utter shite at science but cannot believe how much I am learning through all this about every square inch of my musculature. It's really pretty interesting. I knew a lot from many years as a dancer, but this aging body is throwing out a fair few more shapes than the young one did. Ok, you wanna dance? Let's dance you and I.
Since my original training plan has gone straight to hell in a handbasket I'm now on to plan B...if soreness stays at bay, the weekend will find me out for a thirty minute third 'test run' and a sports therapist visit. Then if all goes to plan I'll get back into my typical midweek 5ks next week and maybe a festive Parkrun on Boxing Day. I'm hoping to get the weekend 'long' run back to my comfortable 10k+ before January and then pretty sure I can swing a mile a week increase in long run up to April. So plan B it is. That is what happens in races, right? This is the mental practice. I know from my halves - especially the last tortuous one - that it's the mental stuff which gets you over the line. The body just does what it's told.
So firmly accentuating the positive, I'm revving up the engines. Here we go again!
Monday, 30 November 2015
So I know that you’re still with me.
In this season of love and hope that there really is some type of Everafter, I have at long last put this story to paper. A story which has sat in my heart for over 2 years. This story is about the day my father left us, which is also the day he gave me the greatest gift of my life.
Merry Christmas.
Believe.
___________________________________________
“Dad, there’s something I really need to ask you.”
I didn’t know it then, but there would only be ten days left to ask him anything.
We were sitting in the living room of my father’s apartment—now his home-hospice, the place where he had chosen to succumb to the cancer that had moved in and was evicting him from his own body. Stubborn to the bitter end, in-patient care was out of the question. To die in comfort was the only thing left which my father could control, so we all did what we could to accommodate him. There in the midst of such total helplessness, smothered by a situation about which we could do nothing, this also delivered the tiniest bit of comfort to us.
I’d arrived mere hours earlier from my home in England to deliver my goodbye. The seemingly outrageous decision to visit Chicago in the dead of winter was made more urgent by the recent news that Dad’s condition had deteriorated significantly since my son’s first birthday two weeks before. Although he was still very much his typical jovial yet cantankerous self from the minute I saw him, this newfound ease with difficult questions not only alarmed me but also gave me comfort that he was at last finding peace with the inevitable. The conversation between us was strangely easy. Unfettered with nerves and pretense, there were few what do I do’s, but only a pressing need to find closure for us both and to set him on his way the right way.
No regrets. So I let loose.
“What are you going to send me when you’re gone so I know that you’re still with me?”
The words to that purely selfish question shoved the lump in my throat clean out of the way in their desperate need for release. I have always believed in guardian angels and I hoped more than I’d hoped for anything in my life that my father would become mine. That he’d watch over my son.
And sure enough, Dad tried to provide me an answer. He looked up at the ceiling as if he’d find it written there and leaned back in his tatty recliner with a wry smile.
“Well, I’d tell you that I love you very much. And I’m thankful for everything you’ve done…” he trailed off, lost again in the place between now and forever, that place I’d seen him slip into earlier in the conversation.
I resigned myself to thinking that maybe I wasn’t supposed to have an answer after all. That an answer would put me closer to the angels than I was worthy. And that was ok.
I glanced up at the tall curio cabinet behind him and caught sight of a baseball hat with a clover on the front; the same hat he’d been wearing the last time we’d seen him, the last time he would ever see his only grandson.
Dad stayed temporarily adrift so I reluctantly let my question slide and found another. “Can I have that hat up there for Rukai? You were wearing it in a few pictures I have of you and him and I think he’d love to have it when he gets older.”
Dad turned gingerly to see what I was looking at. Every fiber of him screamed out in pain but he turned. Because I’d asked him to, he turned. He smiled. “Sure, take anything you want.” He was giving his things to me without hesitation. You read about this. This couldn’t be happening. My heart was in splinters and begged me to break down. I smiled instead. “Thanks Pops.”
I took the hat down and made my way down the short corridor leading to his bedroom to add it to the small stack of things he’d already given me to take home. As I turned and stepped into the room, I heard him say “yeah, I’ll send you something.” I stopped in my tracks, looked at the hat in my hand and smiled. “Maybe a clover.” I laughed thinly as I lay the hat on the bed and turned to go back out.
I glanced at the desk to my left, where a framed photograph lay face down. With other more pressing things at hand, I let it lie and went back to savor more of the time we had left. For the day, this would only be another 15 minutes as the disease also brought with it exhaustion–it was time for a nap. I settled for another treasured hug and promised to call him later.
So as Dad napped, I left and went about my business. That business of visiting funeral homes and cemeteries. Of discussing life insurance and shopping for things that would bring him comfort. Plastic cups he could grip with weakened hands. Suspenders to hold up his pants which had become at least three sizes too big from the weight loss. Slippers he could squeeze over his feet swollen with retained fluid.
Then, a chain for the mini rosary given him by a favorite uncle. “Did you want the extended warranty on this?” asked the sales lady. No. No need. This would be going with him.
I got back to my hotel and carefully tucked that clover hat into my carry on. I dare not leave it behind or risk it get lost in a checked bag. It’d be amongst the ‘all I have left’. I slept.
Fitfully, I slept.
___
Departure day began with my phone bleating over a late night shower. I picked up a message telling me Dad had slid out of his recliner in the night and his carer wasn’t able to help him back up. They’d called the paramedics who took some 25 minutes to arrive, but they managed to get him settled in for the night. His carer rang later to tell me Dad’s breathing was labored. I slept with one eye open the rest of the night, but again I slept.
I awoke to the eleventh grey Chicago morning of the journey. This day was the conclusion and the reason I came. It was that last goodbye, which had played out in countless words and hugs and stories and gratitude over a strangely long series of days.
But the days had gone and Dad was following close behind.
I arrived to find him wincing, delivering a last hug which could only be returned with a cheek pressed against my own. “You look like you’re in pain today, Dad. What’s hurting?”
“My neck is killing me.”
“Where?”
He drifted a hand behind his head, moving it left, now right, now left.
“At the base of your skull?”
Thumbs up. No words.
“Can I get you something?”
A croak, sounding like ‘coffee’. I repeat it. He nods.
He would have a sip. He would not speak nor drink again.
Then he would drift.
___
There had been a stack of bills on the end table all week. We had meant to go through them all—the ‘life admin’ was another duty I was trying to uphold for him. I hadn’t finished. There they sat. I’d promised to sort it out by phone with his carer after I got home.
For now, there they sat.
Dad’s carer knew this was the last I’d ever have of my father alive. So he graciously left us to the quiet, barring the TV and its Saturday afternoon Son of Svengoolie presents Dracula–quite possibly Dad’s favorite movie. There was nothing but us and that clock just ticking towards two departure times. One from the airport and the other from the very air.
Another friend who I’d asked to be there for Dad once I left had come and gone to get some lunch. Then again, still more silence.
Dad had been drifting in and out of consciousness all day. There was at once a heavy stillness yet such a tremendous lightness in the room. Where I should have been feeling torment, there was only the slightest concern that for the first time since I’d arrived I didn’t know what I should be doing. I thumbed through the leaflet hospice had given us and counted how many signs of pending death I was witnessing. I did this very matter of factly, with a serenity I rarely possess. I am sure I didn’t find this from within myself, but from the place and the time and the happening.
Each time I got up to use the bathroom or refill my glass of iced tea, I saw Dad peek out of the corner of his eye, disturbed by the sudden activity. I’d come back to find him still again. I felt like an intruder who’s surprisingly asked in for dinner.
His drift made him restless, and I began to see such such beauty in the drift as I searched for its meaning. Dad would sit forward in the recliner and stroke the armrest with his left hand, then lean back and the hand would move to rub his forehead. On and on this repeated, and every repetition made me wonder what I was missing. Am I preventing him from going? What should I say? What must I do?
I turned the volume down on the TV. I told him how much I loved him and how grateful I was that he waited for me to come and see him one last time. I told him it was ok to go. I told him I’d be ok. That everything would be ok.
Still he drifted.
The door opened and Dad’s carer returned. We had a bit of conversation about how Dad had been and he realized that we hadn’t finished the bills. I was relieved that we had a task. I was due to leave in about 90 minutes. It was beginning to hurt.
We started through the bills, making a few phone calls, asking for payment addresses. Dad’s restlessness had stopped and his breathing was slowing. It seemed we were all reaching an end.
“There, that’s done,” I said, and the bills went into a neat pile on the table. A small accomplishment, small talk, and I needed to have one more conversation.
“Can I talk to you for a minute?” I asked Dad’s carer. We stood up and went into Dad’s bedroom, out of earshot. I told him not to worry when Dad did leave us, that I was sure it would happen on his watch and I didn’t want him to feel ‘at fault’ or as if he was unable to prevent it. We hugged. We knew it was coming.
We finished our conversation and just before we walked back into the living room, I stopped and turned over that photo frame I’d seen sitting on the desk. It was a picture of Dad and his sister, both smiling, long ago. “I think you’ll be seeing each other very soon,” I said.
As I turned to walk out, I sensed Dad’s carer behind me and to my right. We both made our way down the hall and stopped in front of Dad, folded our arms and mirrored each other in our shoulder to shoulder stance. We looked down. I was watching to see Dad’s chest rise and fall but I only saw stillness. I’d read that breathing slows almost to a stop at the very end of a life. I thought he was in a lull. I thought I’d have to come back to see the rise again.
I turned to my left and made my way into the kitchen for another refill. Then I came back and knelt down next to Dad’s chair to watch for movement. Like waiting to see the grass grow, there was nothing discernible. I put my hand on his chest. Nothing.
"Dad? Are you still with us Dad?"
The front door opened and Dad’s friend had come back. My hand had reached to check for a pulse and again found nothing.
“I think he’s gone.” This voice cracking, desperate. Not mine.
Dad’s friend tried to rouse him. He shouted Dad’s name, felt for breathing, felt for pulse. Still nothing. Dad’s carer had come out of the bathroom and stood over us, silent.
There we all stood and there Dad had gone. It seemed I wouldn’t be on that flight after all.
It was Dad who’d said goodbye.
___
In the haze of the next few days, where all meticulous plans came at last to fruition, I found little time to reflect with the people who’d been there with me that afternoon. I wanted to talk to Dad’s carer about that moment, where we stood together and bid my father goodbye. I’d felt Dad was still with us then. I wanted him back if only within a memory. Within a shared experience.
It wasn’t until I finally got back to England a few days after the funeral, after I’d said goodbye to Dad’s grave, when I was able to phone Dad’s apartment to talk with his carer, who was looking after packing up his things and moving everything out. I asked him about how we walked out of Dad’s room together and stood in silence. I commented how strange I found it that we’d stood in reflective poses and had that quiet moment so similarly.
He didn’t have a clue what I was talking about.
“When we walked out of Dad’s room and stood in front of him? And then I turned to go into the kitchen and you were still in the living room?”
“I didn’t walk out of the room with you,” he said.
I froze. My heart leapt.
“I went from your Dad’s room into the bathroom. And you walked out of your Dad’s room and turned right.”
But there WAS someone beside me. Someone who led me out of that room, across that very same threshold where my Dad had told me days earlier that he’d send me something to let me know he was still with me.
And he had. He sure had.
Merry Christmas.
Believe.
___________________________________________
“Dad, there’s something I really need to ask you.”
I didn’t know it then, but there would only be ten days left to ask him anything.
We were sitting in the living room of my father’s apartment—now his home-hospice, the place where he had chosen to succumb to the cancer that had moved in and was evicting him from his own body. Stubborn to the bitter end, in-patient care was out of the question. To die in comfort was the only thing left which my father could control, so we all did what we could to accommodate him. There in the midst of such total helplessness, smothered by a situation about which we could do nothing, this also delivered the tiniest bit of comfort to us.
I’d arrived mere hours earlier from my home in England to deliver my goodbye. The seemingly outrageous decision to visit Chicago in the dead of winter was made more urgent by the recent news that Dad’s condition had deteriorated significantly since my son’s first birthday two weeks before. Although he was still very much his typical jovial yet cantankerous self from the minute I saw him, this newfound ease with difficult questions not only alarmed me but also gave me comfort that he was at last finding peace with the inevitable. The conversation between us was strangely easy. Unfettered with nerves and pretense, there were few what do I do’s, but only a pressing need to find closure for us both and to set him on his way the right way.
No regrets. So I let loose.
“What are you going to send me when you’re gone so I know that you’re still with me?”
The words to that purely selfish question shoved the lump in my throat clean out of the way in their desperate need for release. I have always believed in guardian angels and I hoped more than I’d hoped for anything in my life that my father would become mine. That he’d watch over my son.
And sure enough, Dad tried to provide me an answer. He looked up at the ceiling as if he’d find it written there and leaned back in his tatty recliner with a wry smile.
“Well, I’d tell you that I love you very much. And I’m thankful for everything you’ve done…” he trailed off, lost again in the place between now and forever, that place I’d seen him slip into earlier in the conversation.
I resigned myself to thinking that maybe I wasn’t supposed to have an answer after all. That an answer would put me closer to the angels than I was worthy. And that was ok.
I glanced up at the tall curio cabinet behind him and caught sight of a baseball hat with a clover on the front; the same hat he’d been wearing the last time we’d seen him, the last time he would ever see his only grandson.
Dad stayed temporarily adrift so I reluctantly let my question slide and found another. “Can I have that hat up there for Rukai? You were wearing it in a few pictures I have of you and him and I think he’d love to have it when he gets older.”
Dad turned gingerly to see what I was looking at. Every fiber of him screamed out in pain but he turned. Because I’d asked him to, he turned. He smiled. “Sure, take anything you want.” He was giving his things to me without hesitation. You read about this. This couldn’t be happening. My heart was in splinters and begged me to break down. I smiled instead. “Thanks Pops.”
I took the hat down and made my way down the short corridor leading to his bedroom to add it to the small stack of things he’d already given me to take home. As I turned and stepped into the room, I heard him say “yeah, I’ll send you something.” I stopped in my tracks, looked at the hat in my hand and smiled. “Maybe a clover.” I laughed thinly as I lay the hat on the bed and turned to go back out.
I glanced at the desk to my left, where a framed photograph lay face down. With other more pressing things at hand, I let it lie and went back to savor more of the time we had left. For the day, this would only be another 15 minutes as the disease also brought with it exhaustion–it was time for a nap. I settled for another treasured hug and promised to call him later.
So as Dad napped, I left and went about my business. That business of visiting funeral homes and cemeteries. Of discussing life insurance and shopping for things that would bring him comfort. Plastic cups he could grip with weakened hands. Suspenders to hold up his pants which had become at least three sizes too big from the weight loss. Slippers he could squeeze over his feet swollen with retained fluid.
Then, a chain for the mini rosary given him by a favorite uncle. “Did you want the extended warranty on this?” asked the sales lady. No. No need. This would be going with him.
I got back to my hotel and carefully tucked that clover hat into my carry on. I dare not leave it behind or risk it get lost in a checked bag. It’d be amongst the ‘all I have left’. I slept.
Fitfully, I slept.
___
Departure day began with my phone bleating over a late night shower. I picked up a message telling me Dad had slid out of his recliner in the night and his carer wasn’t able to help him back up. They’d called the paramedics who took some 25 minutes to arrive, but they managed to get him settled in for the night. His carer rang later to tell me Dad’s breathing was labored. I slept with one eye open the rest of the night, but again I slept.
I awoke to the eleventh grey Chicago morning of the journey. This day was the conclusion and the reason I came. It was that last goodbye, which had played out in countless words and hugs and stories and gratitude over a strangely long series of days.
But the days had gone and Dad was following close behind.
I arrived to find him wincing, delivering a last hug which could only be returned with a cheek pressed against my own. “You look like you’re in pain today, Dad. What’s hurting?”
“My neck is killing me.”
“Where?”
He drifted a hand behind his head, moving it left, now right, now left.
“At the base of your skull?”
Thumbs up. No words.
“Can I get you something?”
A croak, sounding like ‘coffee’. I repeat it. He nods.
He would have a sip. He would not speak nor drink again.
Then he would drift.
___
There had been a stack of bills on the end table all week. We had meant to go through them all—the ‘life admin’ was another duty I was trying to uphold for him. I hadn’t finished. There they sat. I’d promised to sort it out by phone with his carer after I got home.
For now, there they sat.
Dad’s carer knew this was the last I’d ever have of my father alive. So he graciously left us to the quiet, barring the TV and its Saturday afternoon Son of Svengoolie presents Dracula–quite possibly Dad’s favorite movie. There was nothing but us and that clock just ticking towards two departure times. One from the airport and the other from the very air.
Another friend who I’d asked to be there for Dad once I left had come and gone to get some lunch. Then again, still more silence.
Dad had been drifting in and out of consciousness all day. There was at once a heavy stillness yet such a tremendous lightness in the room. Where I should have been feeling torment, there was only the slightest concern that for the first time since I’d arrived I didn’t know what I should be doing. I thumbed through the leaflet hospice had given us and counted how many signs of pending death I was witnessing. I did this very matter of factly, with a serenity I rarely possess. I am sure I didn’t find this from within myself, but from the place and the time and the happening.
Each time I got up to use the bathroom or refill my glass of iced tea, I saw Dad peek out of the corner of his eye, disturbed by the sudden activity. I’d come back to find him still again. I felt like an intruder who’s surprisingly asked in for dinner.
His drift made him restless, and I began to see such such beauty in the drift as I searched for its meaning. Dad would sit forward in the recliner and stroke the armrest with his left hand, then lean back and the hand would move to rub his forehead. On and on this repeated, and every repetition made me wonder what I was missing. Am I preventing him from going? What should I say? What must I do?
I turned the volume down on the TV. I told him how much I loved him and how grateful I was that he waited for me to come and see him one last time. I told him it was ok to go. I told him I’d be ok. That everything would be ok.
Still he drifted.
The door opened and Dad’s carer returned. We had a bit of conversation about how Dad had been and he realized that we hadn’t finished the bills. I was relieved that we had a task. I was due to leave in about 90 minutes. It was beginning to hurt.
We started through the bills, making a few phone calls, asking for payment addresses. Dad’s restlessness had stopped and his breathing was slowing. It seemed we were all reaching an end.
“There, that’s done,” I said, and the bills went into a neat pile on the table. A small accomplishment, small talk, and I needed to have one more conversation.
“Can I talk to you for a minute?” I asked Dad’s carer. We stood up and went into Dad’s bedroom, out of earshot. I told him not to worry when Dad did leave us, that I was sure it would happen on his watch and I didn’t want him to feel ‘at fault’ or as if he was unable to prevent it. We hugged. We knew it was coming.
We finished our conversation and just before we walked back into the living room, I stopped and turned over that photo frame I’d seen sitting on the desk. It was a picture of Dad and his sister, both smiling, long ago. “I think you’ll be seeing each other very soon,” I said.
As I turned to walk out, I sensed Dad’s carer behind me and to my right. We both made our way down the hall and stopped in front of Dad, folded our arms and mirrored each other in our shoulder to shoulder stance. We looked down. I was watching to see Dad’s chest rise and fall but I only saw stillness. I’d read that breathing slows almost to a stop at the very end of a life. I thought he was in a lull. I thought I’d have to come back to see the rise again.
I turned to my left and made my way into the kitchen for another refill. Then I came back and knelt down next to Dad’s chair to watch for movement. Like waiting to see the grass grow, there was nothing discernible. I put my hand on his chest. Nothing.
"Dad? Are you still with us Dad?"
The front door opened and Dad’s friend had come back. My hand had reached to check for a pulse and again found nothing.
“I think he’s gone.” This voice cracking, desperate. Not mine.
Dad’s friend tried to rouse him. He shouted Dad’s name, felt for breathing, felt for pulse. Still nothing. Dad’s carer had come out of the bathroom and stood over us, silent.
There we all stood and there Dad had gone. It seemed I wouldn’t be on that flight after all.
It was Dad who’d said goodbye.
___
In the haze of the next few days, where all meticulous plans came at last to fruition, I found little time to reflect with the people who’d been there with me that afternoon. I wanted to talk to Dad’s carer about that moment, where we stood together and bid my father goodbye. I’d felt Dad was still with us then. I wanted him back if only within a memory. Within a shared experience.
It wasn’t until I finally got back to England a few days after the funeral, after I’d said goodbye to Dad’s grave, when I was able to phone Dad’s apartment to talk with his carer, who was looking after packing up his things and moving everything out. I asked him about how we walked out of Dad’s room together and stood in silence. I commented how strange I found it that we’d stood in reflective poses and had that quiet moment so similarly.
He didn’t have a clue what I was talking about.
“When we walked out of Dad’s room and stood in front of him? And then I turned to go into the kitchen and you were still in the living room?”
“I didn’t walk out of the room with you,” he said.
I froze. My heart leapt.
“I went from your Dad’s room into the bathroom. And you walked out of your Dad’s room and turned right.”
But there WAS someone beside me. Someone who led me out of that room, across that very same threshold where my Dad had told me days earlier that he’d send me something to let me know he was still with me.
And he had. He sure had.
Saturday, 28 November 2015
The things I do for bubs.
#RunningForRukai
http://uk.virginmoneygiving.com/MaxineNapal26.2
So knowing the goal and knowing the method towards the madness, I set out for a ride yesterday. Now, trainers are on the no list, because their hard heels and my sore one are at odds. So out come the fake uggs (fuggs to you and me) over the typical running kit. And here, wait - it's cold and it's coming up on Christmas. So out too comes the novelty headgear, and Rudolph the Redheaded Rider was born.
Seeing as how I already have too many nicknames to fit on my race vest, I may have to sew on a train, scribble them all on and hope like hell I don't end up carting a bunch of skitchers down the Embankment by the end of the race. That said, I'd have to actually be in FRONT of people for this scenario to happen. Dare to dream! Accentuate the positive!
I'm positively champing at the bit to run, and although cycling felt a bit like 'having to settle', the course I took yesterday was a great out and back, with three laps of the local park in the middle for a nice 10k ride. To my great delight it burnt up my teardrop muscles which have seemingly zero strength if yesterday was anything to go by. I think maybe they are the culprit for some of my imbalance issues, considering they oppose bits that hurt a lot.
(That there is novice runner science. Do I get a prize or something? Even a pint would suffice...beer is carbs, right?)
End of that mad cycling jolly I felt cardiovascularly sound, entirely used up and really optimistic that my cross training option will keep me ticking away til I can meet foot to pavement again. I will be good and listen to my physio and get that heel sorted. I will wear my fuggs everywhere til I can wear trainers again. I will clamshellclamshellclamshell. IwillnotrunIwillnotrunIwillnotrun.
Until I can RUN, that is. Then you just try and stop me.
Wednesday, 25 November 2015
My heel's on the bus.
#RunningForRukai
http://uk.virginmoneygiving.com/MaxineNapal26.2Kind of like Christmas dinner with siblings, just when you think everything is going well, the shit hits the fan. Enter my poor overworked little heel. In the midst of a blissful 5k before work the other day there is a sharp pain like something hit a nerve in the back of my heel. I pause, pull the padded bit of my sock up higher and keep going. Drama averted. Finish the run, not too much worry, all is fair. Pace is fantastic. I feel like a superhero.
Couple days later I get out on a blissfully cool afternoon to try out the perfect local 5k. I'm wearing the same shoes (my Hokas, not my Asics) going at a great clip, need little walking, feeling strong and bazoinga, there is that old sharpie again. Try the same solution which works again til the sock falls back in, so there I go thinking there's too much 'stuff' between my heel and my shoe and it's causing me a friction issue. The heel of the Hoka rides up higher on my foot than my Asics and is nowhere near as cushioned. I've had similar across the top of my foot when my laces were too tight - couple days off and I'm back in action. So I hope once again.
Having pondered all this as I make it round and head home, favoring the dodgy foot but not *quite* limping, and google...
Oh my great good lord. Please don't be a hairline fracture. Please don't be insertional achilles tendonitis, which even hurts to pronounce. Next day I had a physio appointment and we are now looking (hoping) at the cause of bursitis as it only hurts when pressure is applied. (Funny that...just like life!) No pain on heel raises, no pain on stairs, no pain until I try to wear shoes and move at the same time.
Oh. Shit. It's winter. Timing is not my strong suit. You may not need toenails to run but you need TOES.
Fortunately Ugg boots (ok, ok, I'm too cheap for the real ones..."Ugg-type boots") are still in fashion and they press on nothing so on they popped today.
Such drama for such a tiny sac of fluid in the back of your foot. Will someone please email my body and tell it to behave? I have a marathon to train for. I have a huge Thanksgiving dinner to burn off at the end of the week so guess I'll have to break out the cycle and get a few laps of the park in. Can you cycle in Uggs?
I also have a lot of clamshells and side stepping to do. Can always strength train when your heel's on the bus, right? All day long.
Now where's mini coach...
Monday, 23 November 2015
I reminisce.
I'm going through old photos and near suffocating on melancholy. The one that reminds me that everything is temporary. The things we think are finite and permanently affixed to our reality, they fade, they crack, they're sold off or discarded. They are somebody we used to know. We move on.
Sat in this house, that of the silverfish and slurping dehumidifier, that of the smaller lounge and larger bedrooms, of the drive and garage, of the clutter bloody EVERYWHERE and no time in this life to even dust it off.
I reminisce.
The past is firmly set there behind us, with all its sepia tinged sorrows and lost loved ones. All its missing friends and broken relationships and extracted toxicity. Tomorrow remains as unknown as today was to yesterday. We are on that journey, that ticket clasped in hand, the conductor shouting all aboard, let's ride. The destination board turning as we pass, hurried to get rolling, we know nothing of where we are headed but only that we go. We go into mist. We go because we must.
I reminisce.
Thanksgiving is as important to me now as it was to me as a kid, 14 years later in a country different than the one in which I was born. They don't celebrate it here. They don't but I will always. I celebrate. I give thanks.
I reminisce.
Then.
When we met as Family.
Then.
When we weren't dissipated, dwindled, mist.
Then. When we WERE. How I wish I could offer my son that, flawed and challenged as our life was then, at least it was not this mist. These silverfish. Cloaked progress. Muddied waters.
How do I find the road for him? I cannot get it wrong but so little of this has gone to plan.
This house, that was supposed to be the new Permanent. This house is only temporary. This is a station on the line. We got off here but I think we now await the next train. It feels...off. It feels like a funhouse mirror. Like that gingerbread cottage in the woods.
The thickness, the density of childhood dissipates as the years chew away at our hopes, our momentum. We wield the sword and slay the dragons, guard the castle. We dream our dreams, they morph into necessity, they morph into caring for what is larger than ourselves. They morph. And we are lost even to ourselves as we try to claw back what it was we were after in the first place.
I reminisce. I will not falter. I reminisce.
Three days will mark three years since the final Thanksgiving we spent with my father. My father who would have plenty to say about the fork this road took after he left us. My protector lives on in me. I deliver what he gave me to my son. There is no alternative. I know what I have to do and I do it and it really is that simple.
That Thanksgiving was one of the worst days of my life. Dad was dying. Dad had little to be thankful for on that day. He couldn't bear to look at Rukai, who'd crossed an ocean to be with him. Couldn't look at him because he feared so desperately that his only grandson would never know him. I promised him that he would and I won't let him down. If I do nothing else for my past in this present, I will not let him down.
That old Us was there again. But it wasn't us. It was the misty us. The toxic us. We were all vagabonds of the journey, tatty and frayed like a discarded tapestry, drawn together by the ending of one story and the beginning of the next. We gave thanks for whatever it was we could recover. That last thread of us that we'd managed to hang on to. And then we argued. And it rained. And we dissipated again.
I reminisce.
How to move on in the story from a life that has A list amounts of baggage. From a life that has so much to be forgotten yet so much I need to remember, because it is only that which cobbles together the path on which we walk. The past makes things matter, even if it is all temporary because we are always on the move. We cannot stop. We cannot falter.
I reminisce.
I reminisce because the history of us is the history of US. The other side of the mist is where my family now will come out, scathed or unscathed, scarred and burnt or covered in a glorious suntan, freckled like a disproportionately sunny Irish summer. Take your pick, we will glow, we will shine, we will rise and fall. We are all part of who we were and I will teach him that if I can do nothing else about Then.
My son wasn't with us Then.
He is here now.
That final Thanksgiving we could only give thanks that we were able to share a table and break bread and break hearts and break the chain of history to begin our tomorrow.
That final Thanksgiving we were thankful that we WERE.
That we are.
That we will be.
I give thanks.
I reminisce.
Sat in this house, that of the silverfish and slurping dehumidifier, that of the smaller lounge and larger bedrooms, of the drive and garage, of the clutter bloody EVERYWHERE and no time in this life to even dust it off.
I reminisce.
The past is firmly set there behind us, with all its sepia tinged sorrows and lost loved ones. All its missing friends and broken relationships and extracted toxicity. Tomorrow remains as unknown as today was to yesterday. We are on that journey, that ticket clasped in hand, the conductor shouting all aboard, let's ride. The destination board turning as we pass, hurried to get rolling, we know nothing of where we are headed but only that we go. We go into mist. We go because we must.
I reminisce.
Thanksgiving is as important to me now as it was to me as a kid, 14 years later in a country different than the one in which I was born. They don't celebrate it here. They don't but I will always. I celebrate. I give thanks.
I reminisce.
Then.
When we met as Family.
Then.
When we weren't dissipated, dwindled, mist.
Then. When we WERE. How I wish I could offer my son that, flawed and challenged as our life was then, at least it was not this mist. These silverfish. Cloaked progress. Muddied waters.
How do I find the road for him? I cannot get it wrong but so little of this has gone to plan.
This house, that was supposed to be the new Permanent. This house is only temporary. This is a station on the line. We got off here but I think we now await the next train. It feels...off. It feels like a funhouse mirror. Like that gingerbread cottage in the woods.
The thickness, the density of childhood dissipates as the years chew away at our hopes, our momentum. We wield the sword and slay the dragons, guard the castle. We dream our dreams, they morph into necessity, they morph into caring for what is larger than ourselves. They morph. And we are lost even to ourselves as we try to claw back what it was we were after in the first place.
I reminisce. I will not falter. I reminisce.
Three days will mark three years since the final Thanksgiving we spent with my father. My father who would have plenty to say about the fork this road took after he left us. My protector lives on in me. I deliver what he gave me to my son. There is no alternative. I know what I have to do and I do it and it really is that simple.
That Thanksgiving was one of the worst days of my life. Dad was dying. Dad had little to be thankful for on that day. He couldn't bear to look at Rukai, who'd crossed an ocean to be with him. Couldn't look at him because he feared so desperately that his only grandson would never know him. I promised him that he would and I won't let him down. If I do nothing else for my past in this present, I will not let him down.
That old Us was there again. But it wasn't us. It was the misty us. The toxic us. We were all vagabonds of the journey, tatty and frayed like a discarded tapestry, drawn together by the ending of one story and the beginning of the next. We gave thanks for whatever it was we could recover. That last thread of us that we'd managed to hang on to. And then we argued. And it rained. And we dissipated again.
I reminisce.
How to move on in the story from a life that has A list amounts of baggage. From a life that has so much to be forgotten yet so much I need to remember, because it is only that which cobbles together the path on which we walk. The past makes things matter, even if it is all temporary because we are always on the move. We cannot stop. We cannot falter.
I reminisce.
I reminisce because the history of us is the history of US. The other side of the mist is where my family now will come out, scathed or unscathed, scarred and burnt or covered in a glorious suntan, freckled like a disproportionately sunny Irish summer. Take your pick, we will glow, we will shine, we will rise and fall. We are all part of who we were and I will teach him that if I can do nothing else about Then.
My son wasn't with us Then.
He is here now.
That final Thanksgiving we could only give thanks that we were able to share a table and break bread and break hearts and break the chain of history to begin our tomorrow.
That final Thanksgiving we were thankful that we WERE.
That we are.
That we will be.
I give thanks.
I reminisce.
Thursday, 19 November 2015
Glow little glow worm.
#RunningForRukai
http://uk.virginmoneygiving.com/MaxineNapal26.2The problem with life is it interferes with running. And blogging. And increasing Ye Olde Iron Arse. But nonetheless I've done my level best to continue all of these despite a honking three day meeting and a night without seeing my little Dude. Yet I survived, I ran, I maximized glutes and I lived to tell about it.
Last Sunday I started a run at dusk, kidding myself that I'd be able to do a couple laps of the local park then finish with a swoop around 'the block'. Needless to say - in the similar vein that I am not Paula Radcliffe - it is not June, it is NOVEMBER (What? How?!) and it gets dark in twentysixpointtwo seconds. So thankfully I had my deliciously green glow in the dark jacket on and after I stumbled through a very dark park to knock out the first lap, moved out onto the pavement for a few more around that mighty block.
Lo and behold pavement is a bit uneven. Who knew?
But I soldiered on, covered my planned just-over-six-miles and made it home unscathed. Have to say I'm not a fan of night running - folks like me have enough trouble coordinating breathing and not dying on a typical run - so I will do all I can to prevent it going forward. It looks like mid-day is my new best friend, although it may be a bit tricky to run carrying a laptop.Needless to say the strength training is not only integral to 'The Plan' but it is also completely having the desired effect, that being 'making me less likely to fall over and die' while running. And bless him, my Mini Coach Rukai is seeing to it that I stick to The Plan. Last time I chugged through my side steps across the kitchen he marched along with me for the full five reps. Forward to the end, I take the resistance band off and put it on the floor. Mini Coach demanded a few more. Apparently he had spotted Ye Olde Pudding Arse. And here I thought he wasn't paying attention.
But he's right - I'm not going to be finished with this or anything else that has to do with him til he says I am. My reason for being, my reason for racing. With pleasure, little Dude.
(Ok, ok, I'm going...)
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