Experience…that thing we get as time rolls on…is certainly the best teacher. Some would even contemplate that life is all about experience and the many lessons we learn – if we are paying attention to them, that is. This month my angel with a life-limiting illness turned 11 years old. In that time, many words have crossed my lips (many of them too colourful for this blog!). I’ve cursed God. I’ve thanked God. I’ve cried aloud “I can’t do this anymore!” and I’ve exclaimed “I’ve totally got this handled like the bad-ass mama that I am!” But there is one particular, mostly rhetorical, question that I no longer say. Time and experience…and heartbreak…has taught me to never utter this phrase again.

What else could possibly go wrong?

Well, in short, there is generally an all too long of a list of more things that could go wrong. And I know that all too well. It’s not that I think uttering that question to the universe could actually tempt fate to get worse. I don’t believe that because it won’t change anything.

One of the most important tools for a parent on this journey with a child who has a life-limiting illness is frame of mind. Dare I even say it’s part of the lessons our beautiful angels are here to teach all of us. If we cry out, be it inside ourselves in silence or aloud to whomever is listening, “what else could possibly go wrong?!” it is coming from a place within us of resignation…exhaustion…sorrow…and maybe even defeat, all of which are normal emotions on this rollercoaster ride of a journey.

When it comes to my son and his condition, I’ve made the conscious decision to never utter those words again because I found it took me away from where he is NOW. And as we know all too painfully, all we have with our angel IS NOW. We know that one day, something else WILL go wrong. It just will. Like it did yesterday as we met with the neurologist and she matter-of-factly (as all neurologists do) said that she has no doubt that my son is now having seizures daily, throughout the day, as evidenced by a new facial twitch that has been increasing the past 2 months. And so, one of his 3 twice-daily seizure medications has been increased, an EEG ordered (I’ve lost count of those now), and discussion of a possible 4th seizure medication was had.

And there it was: Something else went wrong.

Something else can and will always go wrong on this journey. It just will. And here is where one of the most valuable lessons we can ever learn comes to light…ACCEPTANCE. Intertwined with acceptance, though, is the beauty of learning to live in the here and now. Not for tomorrow. Not for yesterday. But for today. And today is such a gift. Every new day we have with our angels is a gift like none other we will receive.

So no more utterings of “What else could go wrong?!”

What has gone right today? Did you see that love beaming from your angel’s eyes when he looked at you? No, he can’t say the words, but did you feel that love being shot straight at your heart? That’s it…that’s what today is for…that’s the amazing, awesome, beautiful gift to focus on.

This latest one has been patiently waiting on the window ledge in the sitting room since August. No joke, it’s been there for 2 months. It’s still not filled out. But, reluctantly and with resignation, it will be. It MUST be.

I remember the first time a nurse in the hospital asked me if I had a DNR for my son…and for those of you not in the know, DNR stands for Do Not Resuscitate. (This one is actually titled Advance Treatment Discussion. Less offensive I suppose?) Anyway, that first time…I was utterly shocked and I could even go so far as to say offended. “Absolutely not!” I exclaimed to the poor girl just doing her job, “You do everything you can to save my son if it comes down to it!”

That was years ago.

Things change. And sometimes, they change drastically.

In the summer of 2013, my son Brendan came down with severe bilateral pneumonia. He nearly died. While I sat at his hospital bedside day and night for 11 days, I had the opportunity (and that’s what I choose to call it) to search my heart, my mind, and in the process, to let go of certain false realities. And that is when things changed drastically…I signed his first DNR form.

BUT WAIT, NO! IF I COMPLETE THIS FORM IT’S LIKE SENDING A MESSAGE TO THE UNIVERSE THAT I WANT IT TO HAPPEN OR MAYBE IT WILL PUT OUT NEGATIVE VIBES AND MAKE IT HAPPEN!!!! RIGHT???

Actually, wrong. Totally wrong. Trust me, I know first hand what an internal struggle it is to even consider a DNR on your own precious child. It goes against every fiber of our being as a parent! But somewhere in this 11 day soul-searching experience I had sitting next to Brendan’s hospital bed in 2013, I realised (once again) this is for HIM, not for me. And what is meant to happen for our precious angels on this journey will not be changed by us parents thinking about “that time.” Signing the DNR will not make it come any sooner or any later. It won’t, honestly.

But signing the DNR will do one very important thing…

When that time comes, however it comes, whatever it looks like, we all hope we can be strong, thinking clearly, making decisions appropriately. But who knows how we will be at that moment? We just don’t know. So, I decided I wanted to make the decision on life-saving measures to be taken for my son NOW, while he isn’t in hospital, while I am not under pressure to make such a monumental decision while looking at his beautiful face and holding his soft hand. There it is, done: A decision made that I now can put out of my mind and not have to be concerned about in the heat of an emergency for it has already been decided.

“Escape clause”: But here’s the thing to remember when signing a DNR…if, in the heat of the moment while emergency staff or doctors are working on your angel, you decide you want to change your mind, you can ignore the DNR. You CAN say to them “do everything you can to save my child” and then they must. It IS up to you, ultimately, no matter if you’ve signed the DNR or not, in that moment.

And don’t forget, you CAN (and I say, SHOULD) include instruction as to if the emergency occurs when you are not with your child. This, to me, is the most important aspect of the DNR I have for my angel boy Brendan. The instructions I added are that if I am not present when he goes into a life-threatening emergency, that he IS to have life-saving measures taken until such a time as I can get to his bedside…to say not goodbye, but I will see you again. And then…then I will make that decision to let him gain his angel wings and fly.

That heartbreaking, soul-shattering, life-changing decision.

That decision on when we believe there is nothing more that can be done to save our child…when we decide we don’t want machines to keep our child alive…

When we decide to let our precious angels fly.

It has been 11 years now on this journey with my son Brendan Bjorn, my angel boy who has a life-limiting illness. But to be clear, those aren’t your typical 11 years. You see, when you are a parent to a child with a life-limiting illness, each year is multiplied in some mystical, cosmic way due to the many challenging experiences usually happening on a weekly, if not daily, basis. Those often unimaginable trials by fire that harden our resolve in ways not faced by parents of healthy children. Now I fully realise that if you, the reader, are not a parent of a child with a life-limiting illness, you may not believe me. And that’s ok, because I know I’m right (as I laugh at myself for sounding so condescending and self-righteous).

Here is where I will reveal some secrets about us parents who have a child with a life-limiting illness. This won’t be news to us, but it will hopefully reveal some of our “secrets” to you…our family and friends…so you can understand where we are coming from a little bit better. Maybe. Just maybe.

Personally speaking, I’m an observer. I love to watch people, study their reactions, read their body language, and use empathy to understand their place in the world. My professional background is that of a Master’s level mental health counsellor specialising in child and family work. Enter then being thrust into this journey with Brendan and 11 years of those trials by fire. Result? Countless lessons learned and the hope that sharing those lessons will help others along the way.

This is where some of our secrets come into play.

Secret one: Many of us wrestle with depression and anxiety. And I’m not talking about being disappointed that the Irish rugby team lost last Sunday. I’m talking about hard, cold, all too real depression where you don’t want to get out of bed in the morning and face another day. I’m talking about anxiety where you can’t catch your breath or when you lose your temper at anyone for saying the most innocent of comments that you just happen to have taken up wrong. We need you to know this is real. We probably won’t tell you about it, and we may not even admit it to other parents in our shoes let alone to our partners. But, it’s real…and we need your help at times.

Secret two: Related to secret one…many of us are on antidepressant medication. It’s ok. We aren’t crazy or mad or going to go off the deep end. We are merely trying to hold it together in the face of knowing we will one day be burying our own child. Yeah, that IS hard to read. Trust me, it is damn hard to type as well. But at the end of the day, it is the truth. We need you to remember that is our journey and our daily world.

Secret three: Again, related to the two previous secrets…there have been studies done that parents of children with special needs very often suffer from what is described in psychological diagnostic terms as PTSD. Can you imagine? The same symptoms as many soldiers who come home from a warzone. This is actually a “secret” fact that many parents on this journey haven’t even heard, but hopefully once they have, there will be a sense of relief as in…”wow, ok, so THAT’S why I feel and/or act the way I do at times.” We can have nightmares, panic attacks, bouts of sudden anger, you name it. It is very, very real. (And here is where I strongly encourage any of you experiencing any of these concerns to please seek out professional help in your area. Reach out for help, please. There is no shame, and it is no sign of weakness, in admitting you need a hand. This IS a hard, heartbreaking journey we are on at times)

Secret four: Sometimes the way we deal with all of the above mentioned secrets is to comfort eat. Yeah, that’s right, bring on the most delectable comfort food you can dream of and that is all too often our way to unwind. Well, that and wine. We seem to keep the wine industry afloat. Did I mention coffee yet? Just keep a steady supply of both going. Please and thank you.

Secret five…and I will end with this one because after all, I can’t be divulging ALL of our secrets at once, now can I?: Sometimes we talk too much once we get the ear of an adult that is a non-medical professional. What a treat that can be! Other times we crack jokes at inappropriate times. And sometimes those jokes are a bit off colour. Let us! Why? Because we can go days, literally, of not speaking to another adult, other than the aforementioned medical professionals, and that, my friends, is not pleasant.

So, bring on the wine, coffee, fantastic scrumptious food and without mention of calories, please. A side of antidepressants if required. And loads and loads of understanding, hugs, and off-colour jokes.

I wrote this a few years ago but I came across this morning as I searched through photos while in a sentimental mood. Those moods seem to be more common as of late. Ok, who am I kidding, I think I was born in a sentimental mood!

For my beautiful angel boy, Brendan Bjorn.

My dearest son…

How is it that tears fill my eyes before I even begin to write to you? I can only guess that it is because you hold the key to my heart like no other person ever will. You…my precious, precocious, beautiful son…ARE my heart.

Now, I can imagine parents out there who don’t have a child with a life-limiting illness may read this letter to you and think “Oh, this is the way we feel about our child/children, too.” But Declan, I can assure you, no it is not. As you know, my wise 7 year old son with an old soul to be sure, this journey we are on changes EVERYTHING about life. Everything.

From the time you were an infant and I would lay you next to your big brother Brendan, you would smile up at him in a sort of tender recognition. As the months turned into years, your bond with him…your unconditional love for him…has made me stop in my tracks in awe. I’m smiling now as I type remembering last month you said something to me that I will always hold dear. You were matter of fact but you were also clearly keeping my feelings in mind. You said, “Mum, I hope it’s ok, but I love my brother more than anyone in the world…even more than I love you.” How you melted my heart at that moment! Yes, my love, it’s absolutely ok that you love him more than you love me. Please, please do. Because as you know, as we have gently discussed on far too many occasions, your brother won’t be with us in this life for very long.

A couple of months ago when Brendan was in the hospital for 19 days, I bought you a mood ring at a local shop. Must be the old hippie in me coming out, right? I will never forget later that afternoon when we were hanging out in Brendan’s hospital room, you walked up to him, took off your new mood ring, and placed it on his finger. You said, “Here Brenny, this will make you feel better because it’s on the happy colour now.” Have I told you just how much you amaze me, Declan? You have THE most compassionate heart of any child I know!

Last week, for the (I’ve lost count so let’s just say 50th) time, you stood by your brother’s side as his body seized out of control. His body convulsing, his lungs barely breathing, his skin losing the warmer colours and turning to blue. You said, “Come on Brendan, we’re right here, it’s ok.”
And you held his hand.
And you laid your hand on his head.
And you said how much you love him.
I saw every single second of it while I stood right next to you as I monitored your big brother.

You have seen paramedics at midnight rush into the house to tend to your brother. You have seen your brother taken by ambulance lights and sirens going off down the road while we followed behind. You have seen tubes and masks and IV lines in your brother’s hands and feet often all at the same time. You have been to so many x-ray appointments for Brendan that you now just walk behind the screen and hang out with the x-ray tech, knowing that’s just where to go…and that there are usually a great supply of stickers to be found there!

And you have sat with me, quietly, when I simply could not hide my tears no matter how damn hard I tried. You have taken on a sort of caretaking role unknowingly, but so very acceptingly, and you are innately mastering it.

I know, my sweet and tender child, that much of this is not fair for you. So many times in your life you have already had to sacrifice by not being able to go where you would like or when you would like because Brendan simply wasn’t able for it. So many times you have cried because of those sacrifices. But hear this promise, Declan, and let it soak in…Everything you miss out on, everything you do for your brother and for me, every loving word you say to your brother, it all stays with me. It is emblazoned upon my mind, my heart and my soul, and I promise you, it will all be made good. For you are growing into the kind of man that will make the world a truly better place. You will impart reason, compassion, sensitivity, and great love in whatever you choose to do. My promise to you is that I will never, ever, let the struggles of this journey turn you away from the beauty that you are learning on this journey. You WILL be all that you can be. And that, my son, is everything.

   
 

Every once in awhile, someone says something that brings us to tears. Not tears of sadness, though. I’m talking about tears shed in happiness as we feel understood in the love and caring that is being expressed. You know, that moment when just the right thing is said at just the right time and it hits just the right chord inside of you and then a flood of emotion wells up within you. Yesterday I had that exact thing happen to me in the form of a birthday card for my special angel Brendan.

It read…

“Brendan, I pray for you my child. I know of your suffering but I also know about your brave strength in the face of all this trouble. I love you, your mom and Declan. May God continue to Bless and be close to you”

And then there was a note just for me…

“Dear Tracy, much love and prayers for you. You are strong and wondrous in your caring for Brendan. I hope all is as good as can be…but I know you are constantly in need for your beautiful boy. And then Declan – I hope he is happy, enjoying Kilkenny and hurling. Love…xxoo”

Short, simple, yet sincerely stated and deeply felt. Is it the words said or is it the person who has delivered the words that makes them so meaningful? Or, is it the perception of the person receiving the message that makes it have such an impact? I would hazard to guess it is all of those things.

The card was from the Godfather of my angel Brendan. He’s also the Godfather to my other son, Declan. Oh, and he also happens to be a priest. It’s coming near 22 years now that I’ve known Harry and with that length of time, a friendship sees many words, many emotions, many trials of life, come and go.

These particular words came at just the right time and for that I am incredibly grateful.

When my son Brendan was just a baby, Harry said something to me that will be forever etched on my mind and in my soul. It has become an internal force sustaining me at the lowest points of this journey with Brendan. He said ~

“The saying that God never gives a person more than he or she can handle is not right. He does give us more than we can handle, but He will never give us more than He can handle.”

Wise words from an old friend.  I share them with you now in hopes that it may reach the right person at just the right time, for that is when words matter most.

May you get strength from it as I did.