Her name was Joan

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March 18, 2019. Today is 29 years since my Mom died in 1990. Cancer. She was only 60 years old. It was a few months after I turned 24. Two years before she died, when she was told she had cancer and was given a prognosis of 6 months to live, I moved back to my hometown to be with her. We got an unexpected 2 years together, having been living in different cities since I was a mere 9 years old.

I didn’t get near enough time with her during my own lifetime. I was robbed of the time I should have had with her. There’s just no other way to put it.

My late father pressured me…an emotional 9 year old little girl who had experienced neglect and abuse…to move in with him and his new wife. He convinced me that my Mom didn’t really want me other than for the child support payments he was making. He promised me we’d get a horse, which I had always wanted. He made me spy on my Mom, keeping track in a notebook of when she came home at night, how late it was, or if she even came home all. They were both alcoholics, you see. But the difference was that my Mom had a heart of gold. I can’t say that about my dad. They both had their demons, but they dealt with them very differently. Between 8 and 9 years old, I was made to choose who I wanted to live with – a decision no child should ever be made to make. I chose him and his new wife.

I occasionally wonder what life would have been like had I chose differently.

Of all the people no longer in my life, living or dead, it is my Mom who I miss the most. If I could choose anyone to sit down with again for even just an hour, it would be her. It seems ironic that the older I get, the more I miss her; the more I need her. I wonder what she would say and advise. I wonder how she would be with Brendan Bjorn. And I wonder if she ever forgave the little girl who inadvertently broke her heart, as her own young heart was breaking, and who was driven away from the family home while her mother stood in the doorway crying. I’d like to think she never even blamed me for that choice.

So on this 29th anniversary of my Mom’s passing, I wonder what she was like before I knew her. What made her the adult she became? This photo of her is one of my favourites. What was she laughing at? Did someone say something funny or was she, even then, just the shy young woman that she was as an adult and so was nervous about having her photo taken? I’ll never know, but I can wonder and imagine. How I miss that big happy smile that forced her bright blue eyes to squint shut! That’s the memory I’ll hold onto today. She was creative, sensitive, loving, passionate, compassionate and kept far too much bottled inside. What’s that they say about the apple and the tree?

For you, Mom. Your memory lives on, as does your love.
I love you. Always. 

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Giving him the chance to be that man

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It’s a difficult task to describe how a mere budding moustache on Brendan Bjorn is making me feel. This is where being a carer to your severely disabled child with a life limiting condition comes into stark contrast with being a typical parent. This is where being a carer of such an angel can play cruel tricks on your heart as your mind is let to ponder a future that won’t be…a future where your son becomes a grown man, goes to University, meets the love of his life, has his own family…and so on and so on.

I decided to let the moustache grow. 

I’ve been shaving Brendan Bjorn’s budding moustache for a few months now but something this past week prompted me to stop and let it grow. Were he a typically healthy young man who will turn 15 in October, I don’t know if he’d want it to grow or if he’d be mad to shave it off every day. It’s up to me. Everything is up to me to decide when it comes to Brendan Bjorn.

His little brother wants to let it grow. 

He said Brendan Bjorn deserves the chance to have a moustache like a man.

And so, it grows.

I don’t think I’ll let it go for too long. It just doesn’t seem right at his age. Or, is it because he is my baby? While I’m not sure which it is, I know I will shave it when the time is right.

For now, I give him this chance to be that man he could have been, even in some very small way…even though my heart is breaking just seeing it there. 

 

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Remembering with tears. Honouring with laughter.

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Yesterday the world lost another beautiful child as a result of CMV, cytomegalovirus. This is the same virus that damaged my son Brendan Bjorn’s brain in utero. Her name was Sami, she was 8 years old, and I had known her since she was just 14 months old.

My heart is broken.

I started this blog 4 years ago in part because I wanted to share with the world what it is like to be on this journey of life with a child who has a life-limiting condition. Yesterday was a painfully stark reminder that, despite going day to day focusing on life in the moment, there is indeed a day like this ahead for my own family. It is that fact of this often cruel life which has me shaking since I heard the news of Sami’s passing.

I remember the first time I met Sami. It was at the 2011 family gathering (called Making Tracks) for those of us with children affected by congenital CMV. The CMV Foundation, which I had established and ran, held this annual gathering so we could all connect, learn and share. So there I was standing at the hotel room door talking to Sami’s mother, Richelle, when Sami – who was laying on the bed – went into what’s known as an infantile spasm. Instinct kicked in and manners went out the door as I walked straight over to Sami and rolled her onto her side to help her ground herself in her surroundings. (You may or may not know what I mean, and that’s ok). From that moment on, the bond was there with both Sami and Richelle.

Having a child with a life-limiting condition is the ultimate in what is not fair about life. It is not the proper order of how life should unfold. Yet, here we are: A precious little girl has gained her angel wings while my son…her beloved friend for years…manages to hang on, his lessons for us not yet complete.

I do believe children like Sami and Brendan are here to teach. 

It is not our job to teach them, for what we can learn from them is far more valuable than anything we might hope to teach.

As such, I have come to realise that one of the saddest parts about this journey is when other people aren’t open to learning what our special children are here to convey: Unconditional love, acceptance, and truly understanding the gift that life is.

This is an indescribably hard journey and I am still learning.
Sami has taught me.
Brendan Bjorn will continue to teach me.

The journey with a child who has a life-limiting condition is hard to fathom for those outside of this path. Signing a DNR (do not resuscitate) form on the child you brought into the world. Choosing the song to be played at your child’s funeral years before it happens…because you don’t know when it will happen. Fighting tooth and nail on a daily basis to keep your child alive, to give your child the best life possible, knowing how it all will end one day, some day, some unknown devastating day that could be tomorrow or could be 5 years from now, no matter what you do. And for some of our families, making the hardest decision imaginable deciding to transition your child into hospice level care rather than continuing on struggling with illness, seizures, surgeries, hospitalisations and pain.

Last night, I put my head on Brendan Bjorn’s chest and I cried uncontrollably. Truth be told, he laughed at me while I cried, but that’s part of his beauty. He made me smile as I told him about Sami having gained her angel wings. I shared memories with him. More smiles. More laughter. I think that is how Sami would like it to be as we remember her.

Fly high, angel. Fly high. 

Sami me and Brendan 2012

 

One month on

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Today marks one month since the boys and I moved into our forever home suitable for Brendan Bjorn’s complex care needs. I don’t think it has quite sunken in to my mind yet as I’m kept so busy still trying to unpack, clean, care, and simply be.

It’s been 4 months since Brendan Bjorn had his life-saving spinal fusion. However, he remains bedridden and unable to venture outside of his home because he is now on another waitlist, this time for a new custom moulded wheelchair seat suited for his new shape post surgery. His pressure sore has finally healed over as of a few days ago. Now it’s waiting for the seating that will enable him to experience the world outside of his bungalow. No child should have to wait for such a required healthcare item.

As I sit here taking a break between duties to write these thoughts, I considered my own history of moving from one house or town to another. By the time I was 5 years old, I had lived in 4 different houses in 3 different towns due to my dad’s job. By the time I was 10 years old, I had moved again, now a total of 5 different houses by that age. I don’t know if that’s an unusual amount of moving because that’s just my reality. It is just the way it happened. By the time Brendan Bjorn was 10, we had moved house 8 time…and that fact breaks my heart. Even so, today I take such comfort in knowing the moving stops here and now. This is it.

This will thankfully be the last home he will know.

This will also be the home where he will, some year, pass away and leave Declan and I surrounded by the most beautiful, loving memories of the boy we both so deeply love and admire. 

And as I look around at this moment, that realisation fills me with a peace that is indescribable and likely only silently, innately understood by other parents who are on this journey with their own precious child.

One month on and no more moving.
A place of new beginnings.
A place of endings.
A place for life and love.
What an amazing feeling of contentment having this home brings to me.

31 January

 

The grey area between being a parent and carer

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This morning while I was giving my son, Brendan Bjorn, a bed bath and a shave, my mind once again wandered into the thoughts of being a full time carer. I trimmed his nose hairs oh so carefully. Yep, it needs done. He has thick, dark body hair and can’t blow his nose, so I need to keep his nasal passages as clear as possible. I also did some manscaping, as they call it. Yep again, it needs to be done. And again, he has thick, dark body hair and as a fully, doubly incontinent young man in nappies 24/7, it is the best way to keep that area clean when he passes what is always very loose stool.

Is that too much to write? 
Is that too much for you to read?

That’s just reality sans the sugar coating. It may not be your reality, but for so many of us who have become more than solely parents, it is our reality. I know men who care for their adult daughters during their menstrual cycle, just as I care for my young man with his more personal care needs. Make no mistake, this is reality.

In my advocacy work for disabled children (of all ages) and family carer rights, I’ve been told on more than one occasion that the work carers like me do is merely being a parent. Is it?

As I cleaned, trimmed, clipped, and cared for my beautiful, precious son this morning, I thought a lot about that statement. First off, no, I don’t agree with it. Having said that, when we decide to have a child, there is no guarantee that dream of the healthy baby being born will be the reality. It is always a gamble, a risk, that it won’t happen the way we hope, and I think anyone entering into parenthood should understand those risks and be ready to adapt, just in case life has other plans than the dreams of the pending parent.

BUT…being a full time carer is vastly different than being a parent to a typically healthy child. 

I think we need more discussions on how to treat parent carers.
There are questions to be asked; reforms to be made.

Should the parent of the child who needs full time care due to severe disabilities have to give up everything when crossing into that grey area from parent to carer? Surely there are other ways that the parent can continue contributing to society and their family with working full time, if that’s what they choose. Why can’t the parent carer be supported with home nursing or nursing in a daycare centre while they are out maintaining their career, their social life, their life as the person they once were before becoming *just a carer* who had to leave themselves behind so to care? Would the government (as some do in other countries) not see that it is to their benefit as well to support an active, contributing, member of society via nursing care during work hours? More jobs. More income. More taxes coming in. Less social welfare. It just might also result in carer parents who would have less struggles with depression and physical health issues related to being confined to home caring 24/7, which would in turn also save money from the public purse down the road.

As I float unseen in that grey area between being a parent and a carer, having left my former self behind, it all seems so achievable and logical to me. I wonder if it is?

 

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As a carer, what home supports do I really want?

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It’s been 12 days since the boys and I moved into our forever home. (I repeat that line in my head because I still can’t believe it). I haven’t written an updated blog piece since. You can guess why. Yesterday was the first day that there hasn’t been someone calling to the house for either Brendan’s services being set up or for household services being set up. I’m exhausted, but it’s a happy exhausted. Yesterday I had great intentions of completing all the paperwork, applications, and emails waiting for me while also cleaning and sorting out the sitting room and kitchen.

None of that got done.

I watched Netflix instead. I do feel slightly guilty, but today I’ve been up since 7am and haven’t stopped moving until now (midday). I guess I needed that rest. Ok, I know I needed that rest.

One of the meetings I had this week here at the house was with a member of Brendan Bjorn’s new disability team here in Co. Wexford. They seem great, may I just add. The conversation about home help came up, and rightly so. In the week since that meeting, I have been thinking long and hard about what I really want…and don’t want.

First of all, readers need to understand that what I want and/or need can be and likely is somehow different than any other full time carer. We all have unique situations.

Home supports, therefore, should all be tailored to meet those unique, individual needs.

Back to the meeting last week. The discussion of in home nursing help arose. Do I need it? Do I want it? My initial reaction was an immediate yes, but that quickly changed as I was made aware that Co. Wexford is following the terrible Loco Parentis clause where the parent is not allowed to leave the home when a nurse is in to provide respite. In other words, the parent is to take respite in the home.

THAT IS NOT RESPITE. NOT AT ALL. 

What that is – in my opinion – is inhumane to the carer.

Just think of it this way: A nurse works a 24 hour shift 7 days a week with no sight of any time off. She does get to sleep at night, but is on call during those hours and undoubtedly is beckoned back to work at least once during the night at least half of the time. Enter time off: The nurse can get 5 hours break each week, but the catch is that the nurse may not leave the hospital. She must take her break there while another nurse tends to her patient. She is not allowed to go meet friends for a coffee, to run errands in town, or even to take a casual stroll in the local parklands to clear her head for those 5 hours. No, the nurse must remain in the hospital (the hospital she is in 24/7, remember) just in case her patient has an emergency that she, instead of the relief nurse, must tend to.

That, dear readers, is Loco Parentis. And for parents like me who are lone parents, no family or friends to step in with respite help, and a child who is again bedridden leaving me housebound, that makes Loco Parentis inhumane. If the above description of the nurse was the reality, you can rest assured it would never, ever be allowed to happen. Unions would never allow it. The public would be in an uproar in support.

But no, we are *just* carers. We have no union. The public don’t walk in our shoes so can’t completely understand. Maybe the nurse analogy will help?

So, what do I want? 

I want to be able to have at least 5 hours a week, free to go wherever I want or need to go. Alone. Without my son whom I love more than life itself. There is an amount of guilt that comes with saying I want to have time without him. Trust me. Yet I also know that for me to be all I should be for him, I need that time to recharge, to unwind, to remember who I am as Tracy.

I don’t need help dressing him or changing him or doing his medications. I don’t need help giving him a bed bath. Now once the housing adaptations have been made and there is a wet room where his shower trolley can be used, I wouldn’t mind help hoisting him to and from for a shower. Otherwise, I don’t need help caring for him while I am here. I need help being able to leave for a respite break.

There are so many reforms that need to be made. Here are some on my mind today:

  1. Loco Parentis must be axed immediately.
  2. Respite must be made available for families like mine but tailored to suit their unique needs.
  3. The Dept of Social Protection and the HSE need to review their policies regarding when a family like mine moves from one county to another: Carers have enough to do without being made to reapply for your disabled child’s Long Term Illness card, reapplying for Household Benefits, and having to call into the local Intreo office to provide proof of the new address because we can’t simply email that proof in (and as is clear from this blog piece, I can’t call into their office).

12 days since the boys and I have moved into our forever home. We are blessed beyond belief to have a home. But to be sure, I will continue advocating for positive reforms for carers and our children with life-limiting illness and disability. Tomorrow is another day and I will then pick up my sword to continue the battle. For now, there are more boxes waiting to be unpacked and a beautiful boy down the hallway who wants some kisses.

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My hopes for 2019

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It’s that awkward week between Christmas and the start of a new year. The big holiday is over and we get ready for everyday life to resume in 5 days time. Of course for carers, we are still working daily caring for the loved one whose life we are dedicated to saving. Still, I think this time between Christmas and New Years Day has always been one of reflection…at least it is for me.

Reflection and looking ahead.

As I reflect on 2018, I can honestly say it was one of the most challenging years I have ever had in my life. The year started with Brendan Bjorn being bedridden due to a pressure sore, and the year will go out with the same. In between, he saw the complications of cruelly delayed scoliosis surgery. Then post op, he saw 2 and a 1/2 months in hospital fighting various infections and trouble with his intestinal system not accepting PEG feeds again. Somewhere in that extended hospital stay, I found myself in the Stroke Unit at another hospital wondering if I’d ever see my boys again. Thankfully, it wasn’t a stroke. And while another health issue was discovered, it is one that I should be able to control (if I can control my diet, that is!). Yes, this year has been hell in many ways: Being apart from Declan for so long; Living in an unsuitable rental home that has restricted me from being able to use a hoist for Brendan’s care; Emotional, physical and financial struggles; and more.

As I look ahead to 2019, I have realised there is something I must do, not only for myself, but in turn for the boys as well. I need to forgive myself. I need to let go of some of the things in the past that continue to bring me guilt, self-disappointment, and regret. It won’t be easy, but it’s dawned on me lately that if I continue to beat myself up for bad decisions I’ve made in the past, I won’t be truly free to enjoy the future. You see, I’ve trusted and believed certain people when I shouldn’t have and I made life decisions based on that trust. It resulted in struggles the boys and I certainly didn’t need. I paid the price, but worst yet, the boys have paid the price…and that has been tearing me to bits inside.

So here I sit today, seriously contemplating what good it will do to continue berating myself for those regrettable decisions. It’s not fair on Brendan Bjorn and Declan. And frankly, it’s not fair on me, either. My heart was always in the right place and I based decisions on love in my heart, and that is what I need to hold onto – and remind myself of – when I reflect. I am going to work on simply letting that negativity toward myself go.

The boys and I have SO MUCH to look forward to for 2019.

We will soon be moving into our forever home, a bungalow for Brendan where his complex medical care can be safely managed. Where Declan can grow up in a small village setting and learn what community spirit is all about. Where I can finally let go and breathe knowing this will be it – our final move in what has been a recent history of far too many moves. And to be sure, it is all thanks to the kindness of friends and strangers and indeed the person who has anonymously helped me beyond belief.

I will never be able to find the words to capture my gratefulness.

So here’s to 2019.
A new start.
A new life.
A new home.
A family on the mend.
A family mindful of the blessings.
A family full of love. 

 

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