It’s been an exceptionally difficult week for me. While Brendan Bjorn’s pressure sore has thankfully healed, the area remains red with thin skin and the cavity of the sore remains. We have been out of the house 4 times now since his sore healed about 2 weeks ago after it had kept him bedridden for over 4 1/2 months. This morning, I see a spot of the skin that is once again about to open back up.

And my heart sinks. 

It can’t open back up…please…no. Declan has a follow-up haematology appointment next week in Dublin which will mean Brendan Bjorn must be in his wheelchair for at least 3 hours, and most likely that will end up being about 5 hours, if not more. This poses a real risk for the sore opening back up by the pressure of him sitting on it for so long.

And my heart fills with worry.

Brendan’s new battery operated, articulating shower trolley came last week. He won’t be able to use it until we move into a fully disability-suitable home. I just can’t carry him from one room to the other again. Last time I tried, I fell over backwards while he was in my arms, but fortunately his wheelchair caught me fall and he was unharmed. I gave him a bed bath yesterday and it just isn’t sufficient. I can’t rinse his beautiful thick hair fully, so it leaves him with residue that flakes off with his already dry scalp, despite the special shampoo. There is no sign of us getting the needed special housing Brendan requires. No sign, no word, no peace, no glimpse of security.

And my heart feels hopeless.

My youngest son is miserable, trapped in a house in an area he rightly feels afraid to even go for a walk in. He blames me, truth be told – and I accept my mistakes, my faults, and my failure to provide him a forever home in a good neighbourhood surrounded by friends. This week has been especially hard as he’s home on Easter break for 2 long weeks with boredom compounding the issues of isolation and unhappiness.

And my heart knows he deserves so much better than I can give.

I need to get in for a mammogram…still. It’s been put off for over a year now. As there still is no in-home respite (and with the loco parentis clause I wouldn’t be allowed to leave the nurse alone in the house anyway) it will just have to happen with Brendan in tow. I again have pain in one of my breasts. I mention this only because as full time carers, and I think especially as mothers, we tend to put our own health way down on the list of priorities, and we really should not do that! I am scared, yes, but can’t get lost in thoughts of what if. After all, there can’t be any what ifs when so much depends on you being healthy yourself.

And my heart ignores the fear of what could happen.

Tomorrow is Easter, a traditional day celebrating the resurrection of Christ. It is a day also traditionally filled with family and friends gatherings, laughter, happiness, and fun. And maybe a bit of church. The boys and I won’t be going to church. I need to keep Brendan’s sore from opening up before Declan’s medical appointment on Tuesday, so in bed he will stay until then. Anyway, I don’t believe in only showing up to church on Easter and Christmas. Hypocrisy at its finest, in my opinion. As for the family and friends gathering, it will be the 3 of us…me and my two precious sons…as always. Together, alone. I’ll make a special dinner which 2 of the 3 of us can eat. I’ll give Declan an Easter basket and likely raid half of the loot inside. And then, it will be a day like every other day.

Lucky for me, I have these 2 boys who save my heart from shattering into a million tiny pieces when my world hurts so much. They deserve the world without any of the hurt.

Today marks 28 years since my mother, Joan, passed away from cancer at age 60. It was only a few months after I turned 24. I missed her actual passing by just a few minutes – something I regretted for a long time, even though the doctor assured me it was for the best. I’m not sure if it was, but, that’s the way it was meant to happen, so be it.

I loved my mom. And I liked my mom. She had an innately caring and gentle soul. She was artistic. She was a romantic. She loved deeply. And, she was funny. In her last couple of years alive, we became friends as adults. We both realised she was dying, so we took the opportunity to leave nothing unsaid. It was probably the greatest lesson she taught me, and she taught me in her dying.

When I was a pre-teen, my Dad’s mother told me that my Mom wanted to abort me. Shocked, I didn’t believe it, but as my Dad didn’t deny it, I felt it must be true. It weighed heavy on me for years to come. One day, many years later, while Mom was washing up the dishes and we were chatting, I said I had something to ask her. As she was in her last year of life and we now had a very close relationship, I asked her if she had ever wanted to abort me. I told her what my Grandmother had said. She stopped washing the dishes and she looked me in the eye. “No. Never. I didn’t plan any of you, but I never wanted to abort you. Absolutely not.”

And with that, years of heaviness lifted.

Whether it was the truth or not doesn’t matter to me. It was her truth at the moment as I know she loved me deeply, and as I stood there, the tears fell. It was now my truth, too.

My Mom struggled with drinking (as did my Dad). They divorced when I was 8 years old, and by the time I was 9, I moved out of my Mom’s house and to my Dad’s in another city nearly 4 hours away. One of the most desperately painful memories I have to this day, is the day I moved away from her. She stood at the doorway at the top of the stairs to the house, crying. I looked out the car window, also crying, as my heart was ripped out. I didn’t want to leave her, but a child is easily manipulated by words of one parent against another. And so, I left, though my heart always remained, in part, with her. My Mom.

When she was diagnosed with cancer, I decided to move back up to my childhood hometown. We had another couple of years to be together, learning about each other, sharing stories, family history, and matters of the heart. We left nothing unsaid, nothing unasked. We held hands. We hugged. We said all the “I love you’s” that went unheard for far too long. 

The last time I saw her alive, laying there in her bed in the nursing home where she had just been transferred from the hospital in expectation of imminent passing, she thanked me. My Mom thanked me for caring for her. (The tears streaming down my face as I type this, missing her desperately…still) I wanted her to eat something, anything, and was trying to spoon feed her some ice cream. No, she wasn’t hungry. And she was no longer in pain. So I sat there holding her hand. She smiled gently at me and told me how much she loved me, her brilliant blue eyes just as brilliant, but tired, so very, very tired.

I’ve lit a candle for her this morning, as I have done every year since her passing. And as once again I can’t make it to a church (a fact she wouldn’t care about at all, truth be told), a candle at home will suffice. I wish she could have seen me become a mom, too. I wish she could have known my boys. But some things just aren’t meant to be. At least I know she’s watching over us, always.

 

 

Today I can happily announce that Brendan Bjorn’s pressure sore has healed over! 140 very long, depressing, emotionally challenging days. But (and of course there is always a but to such things) now it means the very slow reintroduction of him spending time in his wheelchair. There is no manual, no guidebook, to tell me how long will be too long. It will be trial with hopefully no error.

Slow and steady wins the race, as they say. 

But (yes, again!) the skin where the pressure sore is located will always be about 25% weaker from here on out, so while the sore being healed over is certainly cause to be joyous, I realise it is a cautious joy that I must feel. Not only is that skin forever more fragile, but considering the pressure sore is located at the bony prominence just under his left buttocks cheek, it is going to be a real challenge to keep it from breaking open yet again every time he sits. So, my plan is to start with an hour at a time a couple of times a day and ever so slowly work up from there.

Tomorrow, Brendan Bjorn and I shall go for a stroll – his first one since moving to Dundalk. His first stroll in 140 days.

My soul is screaming for freedom after 140 days. I don’t think people have really understood the desperate isolation that being essentially trapped inside a house, caring, for months on end, has made me feel…and what it has done to my overall well-being. The chronic pain of degenerative discs in my lower back, coupled with the re-emergence of rheumatoid arthritis pain in most of my joints, and having no ability to even go for a walk to get much needed exercise, has been breaking me down. The impact on my mental health from often going day after day with not even speaking to another adult has, at times, caused me to doubt if life is even worth living. The loneliness, hopelessness and frustration over the past 140 days has simply been too much, and not just for me, but also for my youngest son, Declan.

140 days is just over 4 and a 1/2 months. Read that again. Over 4 and a 1/2 months.

Can you imagine? 

It is neither fair nor right that any person or family should be left in this way for so long with no help. We – as a society, a community, a culture, a people – must do better than this.

And those government officials and other professionals who have been entrusted to serve and guard the rights of the most vulnerable in our country, must clearly do better than what they have been doing so far.

 

Brendan Bjorn gave me the gift of becoming a mother when he was born on 1 October 2004. After 4 miscarriages, I held this beautiful baby boy in my arms and rejoiced at not only finally becoming a mother, but at the doctors saying he was perfectly healthy. As we all know now, he is not perfectly healthy. The past 13 years have been a journey I never expected, and frankly, had I been told before he was born of the many difficult challenges we would continually face, I would have told said there is no way I could handle that kind of life.

Yet, here I am.

Here we are.

We are surviving. 

Surviving, yes. Thriving, no. Experiencing life to its fullest potential, definitely not.

As a mother, I am happy that I’ve managed to give my sons the loving little family unit in which we find comfort, despite those incredibly difficult challenges that we continue to face. It takes a resolve of spirit most people will never understand unless you walk in our shoes. Having said that, I am sincerely disappointed in myself on this Mother’s Day (and most every other day, especially lately) that I have failed to give my two sons what they need in a secure, safe, forever home – especially Brendan Bjorn, considering his profound care needs. Yes, some days I even despise myself for being a “failure” in this regard. I admit this ugly truth here because it is part of my journey with Brendan and that is what this blog is about, after all. So, there is the truth of the matter on how I feel.

I also reflect back on my own mother. I lost her in March 1990, so coming up on 28 years ago this week. She was only 60 years old. Cancer. I miss her sparkling, bright blue eyes and the way they twinkled when she smiled. I miss the conversations we would have, especially in her last couple of years when she was sick, and how she revealed to me just what a loving, beautiful soul she was. I miss her gentleness in a world that is often devoid of even simple kindness. And I wonder, what she would say to Brendan Bjorn if she could stand next to his bed and stroke his thick brown hair? I can only imagine…and it makes me smile, though it’s bittersweet to think upon.

And what is Mother’s Day without thinking about the line of mothers that have come before us? I also think of min bestemor, my grandmother, who in her younger days before having a family of her own, spent her days living between Norway and America. Her first child was my mother. This morning I sit here looking across the room at the framed photo of her tenderly holding my mother in her arms, just as my mother held me and as I held Brendan when he was a baby – and continue to do so each time I carry him so carefully.

This Mother’s day is filled with poignant memories, administering medications and holding my son as he retched with ongoing feeding difficulties. This is my Mother’s Day, and at the end of the day, it is a day like every other day except for the fact that it’s a gift in and of itself, given to me by the teenage boy who lay in his bed in the next room from where I now sit typing about his journey.

So, to that most special boy who gave me that gift of being a mother, and who has taught me more than I could ever hope to teach him, I love you beyond words, my sweet, sweet Brendan Bjorn…

 

 

On this Mother’s Day, I also think of the many mums out there who have lost a child. This day must be so painful for them, on so many levels, as they remember the joys of their precious child with the heartbreak that comes with no longer having them to hold. My heart goes out to you all.

The UN Convention on the Rights of Persons with Disabilities. Tonight, 7 March 2018, Ireland’s government finally…FINALLY…agreed to ratify this tremendously important convention. Embarrassingly, we are the last EU country to do so. The next step is the Minister for Foreign Affairs must lodge documents of ratification with UN Secretary General. Then, in 30 days, it will be official.

I applaud my fellow disability advocates who have relentlessly pushed the politicians – politicians who have always held the power to see this ratification happen but didn’t.

I applaud the politicians who finally listened, who saw the need for this ratification, and who in turn made sure it would come to fruition.

But where do we go now as a country?

To be sure, the ratification of the UNCRPD is only the beginning. It is a tool we have needed to legally fight for the rights of people with disabilities. It is the way we will (eventually) see no more deprivation of liberty, because let there be no doubt in anyone’s mind, there has been – and continues to be – an ugly deprivation of liberty in Ireland’s disabled community.

There must be ring-fenced and increased funding to expand all services for people with disabilities. 

There must be absolute priority given to disability suitable and appropriate housing for people with disabilities and the families with disabled children. 

There must be more options for adults with disabilities on where to live if they need care but home care is not an option for whatever reason.

There must be a vast improvement in the waitlist timeframes for all medical and therapy consultations and treatments. I would suggest a maximum waitlist of 60 days. 

There must be more grants made available for daily living needs, be it an accessible vehicle, home modifications, or mobility/care equipment. 

There must be proper wrap-around services for people with disabilities and/or the families of children with disabilities – mental health counseling for the family; annual medical checkups if requested; social services as needed; housing supports; respite, in and out of home, as requested; palliative care support for families; and so much more.

There must be more special needs schools and classrooms established across the country – rather than families waiting months if not years for their child with disabilities to simply avail of the basic right to an education.

There is so much more that needs to be improved, reformed, implemented, and brought up to a standard of equality, that I couldn’t do it all justice in this short blog post. As I said above, this is just the beginning. This is the tool we needed to have the ground on which to base our fight for equal rights – often basic human rights – and for the extraordinary needs that many people with disabilities have in order to live their lives to the fullest potential.

I can’t end this piece without mentioning carers, the often silent voices that are forgotten in the discussion of disability rights. Many carers, like myself, are the voices of the profoundly disabled who cannot speak up for their own rights. We speak for them. We fight for them to not be deprived of liberties and human rights while we try to hold our heads above water to attend to their every need at the same time. I applaud all of you. The UNCRPD is for us, too. It isn’t solely for the person with a disability looking for equal rights in the workplace or equal access to public transportation (both extremely important issues, don’t get me wrong).

No, the UNCRPD is also for children like my Brendan Bjorn, and, it is for all of us who are responsible for our profoundly disabled child’s care.

This is our tool, too. And we will use it well. 

 

Ireland is under a Status Red weather warning for a blizzard that is bearing down on our lovely little island. People are buying bread in droves, which I find funny having been through many blizzards while living elsewhere. But there is something about all this that I don’t find funny. A boy and a bed. More specifically, my boy and his bed.

Brendan Bjorn is bedridden (as most of you know) with a pressure sore just below his left buttocks which prohibits him from sitting in his wheelchair. Today is day 128 of him being bedridden. Yeah, 128 very long days. Anyway, his bed is electric and articulates to keep him safe from aspiration, keep his body – challenged by scoliosis, osteoporosis, hip dysplasia and severe cerebral palsy – safe, comfortable and in proper position. The mattress he lays upon is also run by an electric motor. It is a specialised air mattress designed for pressure sore relief. He is also fed over a 24 hour period via a feeding pump. You guessed it, that pump requires electricity to keep it charged.

What happens if we lose electricity in the blizzard?

We are on the priority list with ESB (for those of you not in Ireland, that is the national electricity supplier). However, being on that list will not keep Brendan’s bed and mattress from working if the power goes out. There is no backup power supply. There is no generator to be given.

What would happen if his mattress begins to deflate?

There is no good option, and the only option would be me carrying him to the sofa. That is a dangerous option when it comes to his well-being. It’s a no option, option, as such.

What do I think needs to be done?

For families like mine who have a medically fragile loved one being cared for at home – especially with such profound care needs – I think there must be implementation of an organised, clear protocol to assure best care will be able to continue. For example: Brendan has a disability team locally on which is a social worker. I suggest that the social worker make contact with each family in this situation prior to a major weather event to address what needs they may have if power goes out. If not the social worker, how about the life-limiting illness outreach nurses that children like Brendan are assigned to and who are supposed to be monitoring their overall care?

There needs to be a backup plan for families like mine, but instead, we are left without contact. No plan. No check-in to see if all is ok. Nothing but silence. Where is the Minister for Disability or the Minister for Health or the Minister for Children? Silent…

But I am not silent. So, I add this issue to my ever-growing list of reforms that must be made for families with disabled children who have profound care needs. It is past time for proper, gold standard, wrap-around care services to be implemented in Ireland.

Today across Ireland, thousands of family carers are tucked away in their homes, quietly struggling to do all they can to keep their loved one alive praying the electricity doesn’t go out, while outside a blizzard begins to rage. It’s not about bread. We can all live without bread. What we carers need is proper wrap-around supports, and we need them now.