What would YOU do in my situation?

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In recent weeks, I’ve received a lot of criticism for the very ambitious goal to crowdfund for a suitable, thus safe, bungalow for my severely disabled son, Brendan Bjorn. I knew I would open myself up to such criticism if I launched such a campaign, but at the urging of friends, I decided to take the leap. I had 2 choices:

  1. Raise the funds to purchase the required bungalow
  2. Don’t raise the funds and this summer see my first born son not come home to me and his little brother Declan after his spinal fusion operation.

What would YOU do if you were in my situation? 

I really want people who are critical of this fundraiser to think about it, please. If you have children, imagine one of them with Brendan’s same complex, fragile, numerous medical issues. Imagine you have no family to rely on; no one you can turn to for your son’s housing requirement. Imagine you were told it would be years waiting on the social housing list. Imagine you have tried for over a year to be approved for the low interest housing loan scheme provided but the government but unable to obtain it because, as a full time unpaid carer, your social welfare payment isn’t considered as income, nor is your work considered employment despite it being a long term permanent position.

Imagine that the last time your child was in hospital, just a few months ago, you left for a couple of hours with a hospital aid sitting at his bedside who was to be attending to his needs, yet you returned to find him partially slumped over in his bed while the aid sat trimming her fingernails with all the nail clippings scattering on the floor.

Imagine knowing that if your profoundly disabled, non-verbal son with intractable epilepsy, high aspiration risk, and who is unable to reposition himself if he slips into an unsafe position, is left in the care of anyone else, it will not be safe and his life would be at risk because nowhere, no one, will provide the intensive 24/7 care that you will, and that you do.

What would YOU do if you were in my situation?

There have been some people who have been circulating defamatory accusations privately on social media. The proof in hand, there is nothing I can do about it legally as taking anyone to court is prohibitively expensive. So, all I can do is continue to be as transparent as I always have been, which is probably far too much. I’m an open book, so if anyone has any questions, message me privately and I’m more than willing to discuss those questions with you. Gossip is just that – “casual or unconstrained conversation or reports about other people, typically involving details which are not confirmed as true.” It is the hateful smears of people who, for whatever reason, get a sense of joy or superiority from bringing down others. Sadly, at the end of the day, it is my son – both of my sons, actually – who pay any price as a result of those who seek to harm my efforts to obtain this medically required bungalow for my son. I have no choice but to rise above it.

What would YOU do if you were in my situation? 

Some parents seek to give their children what they need by risking their lives crossing a desert, a river and into another country in hopes their children will know a better, safer, more prosperous, life.

Some parents seek to provide a safe, finally peaceful, life for their children by risking their lives putting them on an inflatable raft and crossing a dangerous sea.

Some parents move from county to county as they desperately try to get the best services, school, medical care, and/or housing for their disabled child with many kinds of special needs.

Some parents resort to crowdfunding to try and save or improve their child’s life, be it for a wheelchair, a medical treatment, a home modification, or yes, even a disability suitable house. I am not the first, and sadly, nor will I be the last. Not until governments of all countries see that those most vulnerable people in their society are those most in need of their assistance will crowdfunding for such requirements end. Until then, parents in my situation go to any measure to protect and provide what their child needs. And sometimes, that means turning to the public for help.

What would YOU do if you were in my situation?

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Living to fight another day

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A few days ago, I sat in this very seat where I am as I write this now, and, I wrote. Instead of writing another blog piece, I wrote a letter stating my last wishes on what I wanted to happen with my two sons after I died. Let me rephrase that: after I took my own life.

Obviously, I didn’t do it. Thankfully, I didn’t do it. Please God, I never will.

Today, a few days on, I feel stronger. I also feel terribly disappointed in myself for having been at such a low point. And, I am more awake to the fact that I am, in some ways, just as vulnerable as my beautiful son laying in his medical bed only a short distance from me now. But alas, I can get up to fight another day on my own behalf. He cannot. So, I must do the fighting for two people.

No, let me once again correct myself: for three people. 

A person should never have to fight to want to stay alive. Nor should people set out to destroy another person’s character. But, as I’ve found out in recent weeks…they do. Sad, twisted, narcissistic gossips who seek attention and adoration can indeed cause severe damage to other people’s lives. And they did. Not just to mine, but as a result, to my sons’ lives as well. That, my friends, is an unforgivable offense.

But hear this: I shall not be brought to my knees again by such people. Why not? Because I have these two innocent, precious sons who I love more than life depending on me to fight for them.

And so I shall. So I shall. 

Words can be an immensely powerful tool. They can bring laughter, induce love, create heartache, facilitate joy, or bring someone to her knees to the point of wanting to let go of life itself. As words have such power, people must truly take care when writing…especially if they are writing about other people…especially if they are writing falsehoods intended to destroy. Wars have been started by mere words. Lives lost. Loves lost. Yes, words are indeed an immensely powerful tool.

May we all use them solely for the good.
For love, truth, healing, compassion and genuine friendship.

So, a few days on from hitting rock bottom, and I am back treading water again. Some might even think it’s a good thing I am such an experienced swimmer in the turbulent ocean of life. I now can’t deny I need a life raft on occasion, but I have again been reminded I must reach out to grab that life raft when the waves are too powerful for me to keep swimming unaided.

For that reminder, and for the blessing of my two sons and for true friends, I am incredibly grateful.

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Having thin skin

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Brendan Bjorn and I have something in common: we both have thin skin. His is literal. Mine is figurative.

Yesterday, after spending less than 3 hours in his wheelchair, Brendan developed the beginning of a new pressure sore about half an inch above his previous one. It developed despite having a dressing on it and despite being in his chair for such a short timeframe. I am heartbroken.

The skin is only slightly opened, but it will now restrict him to full bedrest.
AGAIN.

The weather is glorious today as I look out the window and see people out walking while cars go steadily by. The three of us won’t be going anywhere on this 3-day bank holiday weekend.
AGAIN.

Brendan’s skin in the area of the pressure sore is now very thin. So thin that it will most likely always be a challenge for him. Hopefully, after the spinal fusion this summer, it will relieve much of the pressure that his currently twisted spine is placing on his pelvic bone. Hopefully the sores will be fully healed when it comes time for this life saving operation – or it won’t be allowed to take place due to infection risk. We often survive on hope, I think.

Me? I also have thin skin…the figurative kind…which has been stretched and pinched and poked at the past number of days. When it comes to my feelings and what other people would do or say in an effort to cause me harm in some form, I’ve had thin skin for as long as I can remember. Things like this get under my skin, I internalise them, and once again in that figurative sense, I am brought to my knees. And in all honesty, I once again became so low that I wondered what was the point of going on. You see, when you already deal with depression and anxiety and then have maliciousness directed toward you, that thin skin doesn’t provide much of a barrier.

I sprayed a skin barrier called Cavilon onto Brendan’s pressure sore this morning after gently cleaning and drying the area. As I slowly rolled him back over, I mused wishing there was a skin barrier for emotionally thin skin. Then I looked up at him. He was looking down at me, smiling as he does so beautifully.

YOU are the protective barrier for my thin skin, I thought to myself. You and your brother, and the two of you are why I keep getting up off of my knees and carry on.

What an absolutely priceless gift he has given to me once again. 

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