Today, 30 July, is my mother’s birthday. She would have been 89 if she had lived. Instead, she died from lung cancer in 1990 at the far too young of an age of 60 years, a few months after my 24th birthday. I sit here this morning, still trying to recover from a lung infection that has knocked me off my feet, and I wonder so many things.

What if she didn’t get cancer and she had lived?

What if she had at least lived long enough to meet Brendan Bjorn and see this journey we are on?

What would she say? What would she do?

Would she be proud of me as a mother to my own children? Or would she have criticisms to voice?

I miss her. Even after all these years, I miss her. 

One of life’s lessons I’ve learned is that the closer we get to our own mortality, the more clearly we understand how truly precious – and fleeting and fragile – is life and the time we have to live it. I realise that’s all been said before, so I risk being cliche, but it is true! And those of us that walk a journey with a child who has a life-limiting illness, understand that poignant lesson all too well.

Life takes each of us on unique journeys, yet, at the core of them all, a common thread unites us – the thread of love. We all smile at joy, shed tears at loss, and long to be loved and love in return. She loved me. And I loved her. Those sparkling, bright blue eyes that would disappear into a squint when she laughed – That’s what I’ll remember most today as I look into the eyes of my own two children. I’ll remember love. 

Happy birthday, Mom….and thank you for the lessons you taught to me, in your living and in your dying. Forever and always, I love you. 

 

 

Yesterday, I finally dragged myself and Declan into the GP. We both have lung infections (a nondescript term for what I think, based on past experience, an xray would show is early pneumonia or pleurisy in me). Call it what you will, I am literally sick and tired. Coughing non-stop which is accompanied by a pain in my right lung. Four different medications on board and to say they make me dizzy is an understatement. But, I know that in a few days time I shall be on the mend and feeling better. In the grand scope of things, this is minor.

What isn’t minor is a delay in Brendan Bjorn’s spinal fusion.

Yesterday, not only did I go to the GP, but I received a phone call letting me know that Brendan’s URGENT SPINAL FUSION has been delayed. The delay is due to 1. Emergency cases taking precedence and 2. The consultant’s annual leave in August. What can I say, honestly? I can’t argue with emergencies and I can’t argue a surgeon having his annual leave. Right? Right. So, I won’t. Consider my tongue being bit. (It’s rare enough, so enjoy it while you can)

But I will say this: Having to watch my son’s scoliosis quickly progress over the past 13 months since he was deemed to need an urgent spinal fusion, is desperately heartbreaking. 

It is all I can do now to keep the ever increasing fold between his right lower rib cage and the top of his pelvic bone from creating a skin breakdown. The crease grows more red each week. Oh yes, I’ve been on this journey of creative parental medical interventions for 14 years now (my fellow SN parents will understand this all too well), so I can manage for another couple of months. But, should I have to? Should Brendan have to wait so long with such delays? I think the answer is no. 

Having said that, I will focus on the positive for now:

1. My boys and I can look forward to August now hopefully being spent moving into a suitable, forever bungalow and preparing it in advance of Brendan’s surgery rather than during his surgery.
2. The amazing generosity of the anonymous angel who is loaning me half the cost of the bungalow considering I cannot qualify for a bank or credit union loan as a technically unemployed full time family carer relegated to social welfare. As I said in an earlier blog, it’s the stuff of fairytales.
3. The compassion of the people who have donated and continue to donate to the #BungalowForBrendan fund trying to raise the remaining balance on the bungalow that the private loan won’t cover. My heartfelt thank you can never do justice to the emotion and gratitude behind my words.
4. Brendan’s health. Despite the scoliosis, despite the increase in seizures with this awful heat, he is indeed well. He is fit for his spinal fusion. He is happy, healthy and continues to light up our lives with his smile, laughter and unconditional love.

The plan for our week? Get over the lung infection. Finish the fundraiser. Wrap up the purchase of the bungalow. And then the truly hard work begins – scheduling the move and all that means…transfer of doctors; transfer of pharmacy; transfer of disability services; transfer of 2 different schools; coordinating appointments with new OTs, Physios, and the likes; scheduling the move, including the move of his medical bed by a different company; obtaining an overhead gantry hoist system ASAP for Brendan; and so much more. 

But, we will do it. We have to. And we will give it all we’ve got. 

 

While Brendan Bjorn was in respite at the amazing LauraLynn Children’s Hospice last week, I spent a few days away to recharge my totally depleted batteries. If I think about it, I’d say my batteries needed changed, not just recharged! Whichever, while it was too short, it still did my heart and head good. Now it’s time to look ahead to what will be a busy summer with Brendan’s spinal fusion due to take place and with what I hope will very soon be a permanent move to the bungalow we have secured with a deposit in County Wexford.

Here’s hoping that I recharged those batteries well enough.

Before I look ahead, I want to put pen to paper on this past week away, for there is always something to learn in life, I believe. We as a society, as a culture, should be able to learn from others without defensiveness or insult. We should be able to accept other people into our fold without belittling or excluding those who are different. Here is why I’m starting off with those thoughts: 

A couple of weeks ago, I was on the phone with someone who made a point to remind me that I am not Irish. In fact, because I am very interested in genealogy and had my ethnicity DNA done a number of years ago, this person reminded me that I am “only 4% Irish” in my DNA makeup. Ok…so what? Should it matter? No. Does it matter to some people? Sadly, yes.

Fast forward to last week, when I was sitting around a dinner table with cousins in a different country. (Do I need to add my DNA ethnicity is 44% for this particular country? No, I didn’t think so, but for those who are keeping track, there you have it…I say with a giggle) Champagne was opened, a proverbial feast of traditional foods laid out on the table, and best of all, laughter and conversation flowed freely. Sitting outside overlooking the countryside while we had our dessert of fresh strawberries and ice cream, the newest member of the family – just 3 months old – entertaining us all, while the sun was working its way down the sky was pure bliss.

God how I needed that time and connection!
May it last me for the months ahead.

What I really want to share with you, dear reader, is what we can, and should, learn from other countries. As I mentioned earlier, we as a society should be able to hear these suggestions without defensiveness, without excluding who is speaking because they “are only 4% Irish” or for any other closed-minded or nationalistic reason. Let’s listen. Let’s learn.

And then let’s try to improve what needs to be done to better support families who have disabled children.

I was telling my cousins about how many homeless we have here in Ireland, and how thousands of them are children. They were literally speechless. Momentarily, that is. In Norway, everyone who wants a place to live will have a roof over their heads. End of.

I was telling my cousins about how I get no in home nursing assistance because the 2 available nurses didn’t want to take the 5 hours per week allotted for various reasons. Again, momentarily speechless. In Norway, considering Brendan Bjorn’s very profound care needs, at the very least I would have full time nursing care available in the home while I was at work, but most likely I would have it 24/7 so that I could also get out of the house for not just work, but to…to have a life of my own, as well. The way we are doing things here in Ireland is inhumane and in many ways, cruel and unsafe for all family members. Can you see how it would benefit the society as a whole, too, if parents like me were able to continue with their careers?

I was telling my cousins about how I am resigned to humiliating myself by doing crowdfunding to raise money to purchase the suitable bungalow that Brendan Bjorn requires because the housing waitlist is many years long across Ireland. In Norway, that suitable type of housing would be provided for us so that he could receive the best care needed, and my own health could be saved from having to care for him in an unsuitable, unsafe environment where I can’t even use a hoist.

I was telling my cousins about the whole 4% Irish ethnicity thing being thrown in my face. That was the one time they weren’t immediately speechless. Thank God for laughter in the face of ridiculousness. 

Now, if anyone reading this is getting defensive or annoyed at me and my 4% Irishness (yes, I say that sarcastically to make a point), please, don’t.

Just stop and listen.
Then let’s ask what are we in Ireland doing, or not doing, that they are doing in Norway? How can we improve what we are doing?
Is it a cultural and/or society viewpoint that needs changed as well as governmental policies? I think the answer to this last question is YES, by the way.

I end a week away with a heart that has been refilled with peace and love and laughter and purpose. I look ahead to the summer that will be filled with hard work and what will be extremely trying times, to be sure. But I’ve no doubt, though, that my 2 amazingly precious sons and I will see it through, together.