Last year I was asked to participate in a Cystic Fibrosis South Australia (CFSA) fundraising project for the 65 Roses Ball. I was asked to be interviewed on camera – no problem. As it turned out, after all of the planning, the interview happened to fall on the 2nd day of what turned out to be a 3-week frustrating admission. Perfect, because it would be real, I thought.
The first question was up and I was asked “What is CF?”, a seemingly simple question for a normally well-spoken “have it all together most of the time” kind of mum. Five words in and I was a blubbering mess! I was mortified. I thought, “what is wrong with me?” I was really taken back at my uncontrolled emotion. I have been asked this so many times that my responses are well practised and somewhat detached. I normally provide factual and in-depth information, explain the emotional stressors but rarely connect with them. Sometimes when I talk about CF it is almost in a clinical sense. So now it seems that I am human!
It took me back to Matthew’s diagnosis. Rarely do I allow
I decided to show Matthew off for the first time to some colleagues at work, I remember how special it was to show off my gorgeous perfect baby boy. He was exactly 4 weeks old that day. I was as proud as any mother could ever be. Then I got a call, I was trying to feed my baby, he was unsettled and was always hungry! I was flustered, this baby juggling stuff was hard. I heard the words “Matthew has Cystic Fibrosis.” Um, what? I didn’t know what CF was, didn’t know what it meant, and then the words “average life expectancy …”
Chaos, shock, fear, sadness and complete and utter loss of control followed. They must have it all wrong. He looked plump and perfect. Panic. The rest is a bit of a blur but someone did go and get my mum who worked close by. She was there in a flash. Took control. I remember her driving Matthew and I home, tears streaming down her face, that is the worst when you see your mother hurting so bad. When I see my mum cry, I die inside. I didn’t know how much my heart could hurt until that moment.
My mum had contacted the hospital and later that evening we met with the doctor who made the call, not a CF specialist centre. Otherwise, we were expected to wait 5 days before going to the CF Centre. We needed to know what the hell we were dealing with.
We entered a meeting room, my mother, stepfather, my partner, Matthew and I. It was a bright, white light filled the room. I was emotionally spent. The doctor took Matthew from my arms, held him up, looked at him and then proceeded to LICK his forehead. I was mortified. As he laid him down in a little hospital crib he said, “Ahhh yes, I can tell”. People with CF taste salty, this we did not know, but he looked like a normal healthy baby!
I don’t really remember much about that specific meeting other than him outlining all of the statistics and characteristics of CF. Him telling us so flippantly that average life expectancy was around 50 years old….. in fact, then, it was 27 years old, 3 years older than I was at the time! I could not comprehend what he was saying. This doctor didn’t really know what was going on, not in reality. Nor did he have compassion for what we were all going through. None. Our world was crashing down around us and he was licking my child like it was some kind of joke!
In the days and weeks that followed, no one could take away our pain or our grief. There isn’t really much that people can say or do to change it? You just have to ride the wave. In the post came an unexpected card and letter from my Aunty Kerri. She, like all of our family, was hurting deeply for us, for her and what may be. She had written us a letter expressing her sorrow and grief and she had penned a beautiful poem. Words flowed from one parent to another. Words that simply could not be said. Words that were so much more than words. Words that strike a chord deep inside. Words that are so special, so precious that they encapsulate every emotion we were feeling. Words that I will never forget and always found comfort in. She gave me permission to feel it all and that it was okay. The parting words from her said simply:
“The love just comes easy, you don’t have to try. Let little Matthew help you just live life and enjoy. He is wise beyond his years and will guide the way”
Fourteen years later and it is still raw as ever. Many tears have been shed, writing this blog. Emotions of a Child is dedicated to all people affected by a life-changing “diagnosis”. I hope you find it as special as I do.
EMOTIONS FOR A CHILD
by Kerri Trengove
Sheer joy and wonder
at the miracle of such a perfect, beautiful little bundle
Shock and disbelief
That your perfect little child has been given a ‘diagnosis’
“there must be a mistake”
“I’m going to go to sleep and wake up and find that it’s just a bad dream”
For your beautiful little bundle
Self-blame and guilt
That you are somehow responsible for this condition
Sorrow and grief
For all that may or may not happen in the future
Cry for the anticipated suffering
Cry for the anticipated loss of a normal life
Cry for the things in life your child may not have
For your still beautiful bundle
For life’s cruel choice for your little child
“It’s not fair, why us?”
For your little bundle growing more beautiful every day
Heartbreak and hopelessness
Because you cannot change what nature has dealt
Aren’t parents supposed to be able to protect their children from all that’s bad?
He’s still beautiful
More anger, sorrow, heartbreak for all the same reasons over and over
Acceptance and resignation
This is not a nightmare, it’s real and it’s not going to go away
My child needs some extra special care in his life
So be it
For your child who needs some extra special care
Will ensure that you are just the right people your beautiful child needs
That your child who needs some extra special care is still the same special little bundle you loved the moment you set eyes on him
Your child will still need the same nurturing, guidance, support and love in his life that you always planned to give him
He’ll just need a little extra
That you will do everything in your power to allow your child to experience life in the same way that all of our children do
Focus on the things that CAN be done not what can’t be done
Learn all there is to learn, do all that you can do
Because your precious little bundle will no doubt be the one to help you get through
He will make you laugh
He will make you cry
He will make you angry
You will watch him in awe as he grows and learns
That he is doing things that may bring him harm
“Look, Mum and Dad, no hands!”
Not to let the anticipation of what may or may not be, rob you and your precious bundle of the wonderful life you deserve
For the gift of sharing life and love with such a beautiful bundle.
If you are a new or existing carer and/or parent of someone with high needs, you will know how overwhelming this role can be. You will also understand how isolating it can be too.