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.