Christmas Morning

I woke up this morning and there was a vast emptiness. Ryan was always full of joy on Christmas morning and would wake us up early to open presents. Ryan always a child, make our Christmas what memories were made from. in 32 years we were never apart at this time of year. My heart aches.

new chapters have birthing pains. We now have to re invent ourselves. We shall go on,
life will be full again. One step at the time. God has given us strength to this point and will continue to uphold us as we move forward.

SON SHINE --- A TRIBUTE TO MY SON RYAN WHO DIED DEC 18,2010

Son Shine
By

Linda Brytak
December 2010

Heart stops,
Squeezes suddenly,
Tears,
Hold harmony hostage

Standing On the pinnacle,
Ryan and angels there.
Buffeted against the wind,
Arms held up in surrender.
Fingers entwined, singing
Songs of eternal praise.

On ebony night they fly.
In auroras’ dress,
shimmering, glittering, throbbing, circling,
embracing the light fantastic.
No air is there between them.
Clutching a moment,
eternity emanates.

Love comes shining through,
Lustrous Phoebe, shines in nights black velvet
Illuminating the way home,
For the weary traveler

Angles lift him up, lest he fall.
Fatal flaws erased,
Triumphant, he no longer waits
Perfection peaks, at heaven’s gate.

At home, at peace, at last.

SON SHINE, A TRIBUTE TO MY SON RYAN, DIED DEC 18, 2010

                                                                   

Son Shine

By

Linda Brytak

                                                                      December 2010

Heart stops,

Squeezes suddenly,                                                                                       

Tears, 

Hold harmony hostage

Standing On the pinnacle,

Ryan and angels there.

Buffeted against the wind,

Arms held up in surrender.

Fingers entwined, singing

Songs of eternal praise.

On ebony night they fly.

In auroras’ dress,
shimmering, glittering, throbbing, circling,
embracing the light fantastic.
No air is there between them.
Clutching a moment,
eternity emanates.

Love comes shining through,

Lustrous Phoebe, shines in nights black velvet

Illuminating the way home,

For the weary traveler

 

Angles lift him up, lest he fall.

Fatal flaws erased,

Triumphant, he no longer waits

Perfection peaks, at heaven’s gate.

At home, at peace, at last.

hmmm, the things you find

Creative Minority Report: Awesome! Pop-Up Hallelujah Chorus at Macy's

www.creativeminorityreport.com.

  I went to the sight and was delighted with the singing of Hallelujah, so much so that I copied the address so that friends might enjoy too.

To my great chagrin this site also doubles as pro satan. Can you believe it? I do not harken to that idiology as my friends can attest to. So enjoy the singing, don't be put off at the rest of the malarky there.

answer me this

Ryan should be dead by now , yet remains happy and able to get about.
There have been no more anti rejection meds since July. No meds for epilepsy. Many a time he has knocked at death's door and through some miracle has bounced back again.
Now he takes no meds for anti rejection, therefore according to all medical knowledge, the body should have rejected the liver a long time ago. No such thing has yet to occur. 
Last week he contacted pneumonia. It should have killed him as he is supposed not to have an immune system. For, if he did have an immune system it would have attacked the liver long before now. a few antibiotics and he's fought off the pneumonia! this is not what supposed to happen.
  it's so true, when God wants you, nothing can stop him. If God doesn't want you,then you stay put.

HEAR YE, HEAR YE

NOW HEAR THIS, 

To all the government lackeys and those who would put my son in an institution because it's more convenient. For those who  tell me that I'm being unreasonable. Damn straight I'm being unreasonable, this is an unreasonable situation.

As for my son, he will remain at home in the bosom of his family surrounded by love and caring.  It is my intention to keep him safe. He will have what he needs when he needs it. I will be with him day and night until his last breath.

If you want your loved ones to end their days in an antiseptic room with a stranger hovering over they take your last breath. Then, fill your boots!

I will remain unreasonable ~ it is an inconvenient situation.

Lord, give me strength

This morning after Ryan awoke, I administered his morning meds as usual and fed him his favorite oatmeal. Soon after he started crying. This was a strange turn of events, why was he crying I asked. He told me he didn't know where he was. Nor did he know who I was. I had to tell him my name. Not ten minutes later he started hallucinating.He was seeing mice and rabbits, then he saw spiders crawling up my arms. Still he didn't know where he was or who I was. The nurse arrived  and was truly stupefied. Nurse Lynda called the druggist to find out whether there were any side effects with the meds he was on. Sure enough hallucinating was a side effect, though extremely rare with the antibiotic he was taking. Even the druggist was surprised. A new antibiotic will be started tomorrow....sheesh

And then I have a meeting with the case worker who wants Ryan to be put into a long term care facility as he has used up his six months of care and now she wants to put him "away" (my word not hers) I refuse. I promised Ryan that he could die at home and that's what I shall do. No government worker whose life is all rules and regulations is going to make my son die in a facility. so there!!!!

Another slide down the slippery slope

 Thursday evening, Ryan was running a temperature, later the next morning he was too feeble to walk or talk. The day nurse wanted to prepare me for the eventual conclusion of this newest turn down with Ryan's health. 
For the umpteenth time I gathered my courage and did what needed to be done.  Back to the hospital for more tests only this time....., this time no blood work, no needles. just an xray to determine ~pneumonia. new medication, but with the knowledge that these drugs will do what they are intended to do. 
The fever is lessened. He's making sense again.he seems not able to walk without assistance and is not eating very well. he sleeps 23 hours a day. I thank God for the strength to go the distance.

new season

I'm watching my beloved Ryan slipping away. He's  been bed bound for four days now, he only gets out of bed with assistance to use the bathroom. 

He has a halloween party to attend on Friday. The Mad Hatter costume is all ready for him, whether he's ready for the costume and the evening is very "iffy". One last hurrah, Lord, just one last hurrah.

Bureaucracy and Social Medicine, A VILE MIXTURE

so, Ryan has had the very bad manners to live longer than the social support system would allow. The night staff has been removed. Reason...it costs to have a nurse stay with him at night. He has over "lived" his 6 months and now the bureaucracy wants to eliminate him from homecare and place him in a longterm care facility.

now I'm to care for him all day and all night as well. Let's pray to God that I can keep up my strength.

At the end of the day it always boils down to money. 

Q How much is your life worth?

A How much insurance do you have?

This means of course that I now sleep on the couch in the room where Ryan sleeps.

Is it too much for me to want him to live out his last weeks at home, letting him pass away in the bosom of his family. To keep him out of an institution?

apparently, YES

sometimes it's like chewing fog

did you know that, no matter what is happening within your life,what drama is percolating in the background. Even to death, still life carries on as the waves lap the shore. Bills must be paid, food purchased, cooked, eaten and the whole mess has to be cleaned up. Certainly I have always been aware that nothing stops for any reason  though i would wish it were so. 

 I would raise my hand, palms upward and yell STOP at the top of my lungs.  my cry would be but mewling cry amidst the din of noise that is life.

  I must now contend with the megalith that is the insurance empire, and attempt to suss out what hoops I have to jump through which will continue to enable me to collect some partial monies which allows me to homecare Ryan. On my worst day at work, when I wanted to scream at customers and throw things. When bosses were breathing down my neck. Nothing was worse than a day where Ryan couldn't stand or hold down food.

Life has such lessons to teach me.   it's like chewing fog

treading softly

So, here we are in October.Never thought that Ryan would make it this far. It seems that he is in a remission for the time being.  It's stressful waiting for the other shoe to drop. Knowing that any day at any time he can simply start failing again. Despite the stress, his father and I take every advantage. On the boat for the weekend. out to visit family. even took him to the mall. we were only there for 20 minutes before he had to be taken back home.Nevertheless, when he has the energy, we go for it.

There have been so many ups and downs so many times were we thought our son wouldn't make it through the week. Then he would rally. He's a fighter all right. He's not leaving until he's good and ready. This weekend is Thanksgiving. We're all going to celebrate with the family. simply amazing!

Some of The Things I Have Learned.

When I became a mother, I wondered if I would love my child enough. Whether I would be a good parent. And now I know.

Ryan has been the touchstone to what is real and necessary in life. I have pared down my priorities so that I can love others.  There is nothing else.  

 I have learned that life at any cost is not worth the price.

What you take with you when you die, is your name and all the love you have shared.


Ryan continues to be happy and still full of quips and double entendres. He has taken on my view of life.  We continue to laugh everyday and live life fully, never taking for granted what the day has on offer.

This episode is as much about me as it is about Ryan. This is a lesson in patience, strength and loving. All of which is God given. I have none of these virtues,yet I asked for them and was given these virtues when I needed them most. People who come in and out of my life are surprised at the equanimity in which I deal everyday with the issues at hand. More than once I have been told how strong I am. At this I have to smile. Knowing that in my youth, I was emotionally weak. I am not that same person. God has moulded me into who I am today.


I have not put my value on  things, which only leads to disillusionment. I have not been brainwashed into thinking that owing things is how we interpret the value of our lives. Things are a substitute for love.
Dying is the microscope by which we illiminate the dross and focus on the truly important.

and the beat goes on

I spent an angst filled weekend just contemplating how I would cope if the nursing and personal support workers were to be removed. I was having nightmares and losing sleep.

Ryan got wind of what was being contemplated and translated overheard conversations about putting him in a Long Term Care Facility as meaning that he was a burden on us. That's when he started talking about committing suicide. 

I freaked out; and called the nurse immediately. She suggested that we take him to  emergency and get him seen by a psychiatrist.  Ryan, by this time had calmed down and so we didn't take him to emergency after all. 

From the health care workers to friends, everyone has had wonderful suggestions to maintain the level of care we have been receiving.  This morning, a lovely lady by the name of Andrea, who holds the title of, manager of Clinical Practice, came by. Her advice was to call our family doctor and tell him what this change would do to our family. He agreed to call the support worker to maintain the status quo.

I sure hope that this issue gets laid to rest. I simply would fall apart if Ryan were taken away and not allowed to pass away at home.

breathing a temporary sigh of relief, I hope this moutain doesn't get any higher.

new twists of the bureaucratic kind

The call came on Friday afternoon.
The official voice on the other end telling me that the care and support for my son in his final months will be removed as he failed to die within the six month allotted time period. His six months is up and now we are facing putting him into a long term care facility. 

this is an euphamisim for warehousing. The sick who have no other means of support are put into a large institutional setting where they are put into small rooms to be largely forgotten until they either die or get better. I think of it as  kennels for humans.
I promised him that he could die at home. And that is a promise I intend to keep. I don't know how, but somehow I will perservere. Social medicine working at it's best I suppose. There is only so much help anyone who doesn't have deep pockets can receive.  I am disgusted, and don't know what I will have to do to keep Ryan at home.

happy days

Niagara Falls was the beginning of our vacation. What a wonderful day. Sun shone on us and we had a great time seeing the sights from atop the  giant ferris wheel. Then on to the aviary exhibt and the butterfuly house. There were a gazillion people from everywhere in the world.

As we waited in line to purchase tickets for the ferris wheel, a lady standing nearby asked if we could use her free tickets for the ride? Could we?? absolutely!  so we had free tickets for the ride. What a way to start, we were thrilled. Arrived home early in the evening, we were all tired out and everyone went to bed early.

The next day we packed Ry up and took him to the respite care facility where he was going to stay for the week. he was happy to be there. Different people and scenery. During the week Ryan's health took a definitive turn for the better. he has a good appetite and is stronger than he has been in months. We are taking advantage of all his good days. alleluia.

Alex and I went directly after to our boat to spend the week on board and visit along the Trent  canal. We had a wonderful peaceful time. It was just what the doctor ordered. The temperatures soared to 33c with humidity factor in the low 40's all the way through to Saturday when the temps took an abrupt turn. Cold wet weather finished the week. We were happy to have had several days of heat. September temps are here. 

We bid adieu to summer with warm rememberances.

As Life Goes On

 We are taking Ryan to Niagara Falls on Saturday. He wanted to see it...therefore his wish is our command. Whatever he wants, he gets. My husband stated that he didn't want to "spoil" Ryan. To that I said DUH! 

how can you spoil someone who's dying?  sometimes I wonder if Alex is plugged in and his batteries are topped up. 


I choose happiness, and with God's help I manage to find a bit of happy most days. This is tough on everyone and it either brings out the better or the bitter.

And Then

The family.. mostly sweet with a few nuts.

  the prospect of a loved one dying before their time is a concept that everyone has had a difficult time with. Ryan s aunts and uncles have always had a very close relationship. Their take on this situation has differed greatly from one to the other. Which is not surprising but it is jarring when their fears and weaknesses fall in my lap. Here am I getting  support with counselling and home care, where is the support for the extended family.  

While others in the family have simply chosen to look the other way and ignore the entire process. The closer relationships are straining under the stress.

How to say goodbye. it s not something that anyone can tell you how to do. It is a process that is gut wrenching yet liberating too. All things depend on attitude and how you let yourself embrace life.

6 months down the road

After the family doctor diagnosed Ryan in April, with aleukemic leukemia, and that he had only approximately 6 months to live. The fight was on.

  He was so weak and fragile that the first thing I did was take him to Toronto General for a full assessment.
They sent him home. "sorry, can't find anything wrong". was the gist of it. yes he's weak, confused and is bed ridden. Tests came back negative they couldn't find anything. My mother's intuition didn't count. "My son is dying" I declared to anyone who would listen. The deaf ear of the medical establishment was listening hard. Tests were done. There was no leukemia...... but they couldn't say what it was.  Ryan was sent home again.

The wheels started turning. I booked off work. There was an emergency brewing and I had to give it due diligence. In the ensuing months after eight visits to the hospital and a slew of  tests, a diagnosis was finally arrived at.  Cirrhosis of the liver, brought on by all the other meds he had to take for other medical conditions.

 We had always known that this day was coming, like the sword of Damocles constantly over our heads, a shadow that followed us on every occasion. We had known that  his transplanted liver would not go on forever. The day had dawned.  The glare of knowing and awareness blinded us with tears and crippled us with pain.

Everything from that day forward revolved around Ryan and his health. 




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