Month: February 2017

 

When you’re childfree and overflowing with fuzzy dreams about how your shot at motherhood will go, you never expect to find yourself with a child with additional health challenges. Statistics are something that happen to other people, right?

Don’t get me wrong, you know that nothing is a given. But in your heart of hearts, you don’t expect to be ‘that Mum’. The one that gets the sympathetic looks. The one that people are afraid of saying the wrong thing to. The one that gets respect but that nobody wants to be.

Cystic Fibrosis. Epidermolysis Bullosa. Cerebal Palsy. Down Syndrome. Epilepsy. Autism. ANYTHING can land at your door. There is always a condition that’s ‘better’. And there’s always a condition that’s worse. And while you hope your children will be blessed with good health and a straightforward path, there are no guarantees.

I wanted to write this piece for Mums who are dealing with a diagnosis, whatever that diagnosis might be. No matter how serious or manageable. Because I was that Mum. I am that Mum. And I want to give you some hope.

You can’t wave a magic wand and fix your child’s ills. You can’t stick your head in the sand and pretend it isn’t happening. And you can’t run away from the fact that you’ve become ‘that Mum’. But it’s not all doom and gloom.

You will have a bond with your child that is completely unbreakable. You will learn new skills and gain new strength. You will make the most of every single day, because you understand that nothing in this life can be taken for granted.

Yes, you will cry. Yes, you will feel sorry for yourself sometimes (you’re human). You will look at friends who seem to have it ‘easy’ and wonder, why me? Why us? You will curse God or the lack of one. You will fight with your partner or family out of sheer frustration. You will cry when no one is watching. And you will feel hurt that you never dreamed possible.

But you will get back up. You will channel your explosive emotions into positive action and you will make a difference to your child and to the world – they are after all, one and the same thing.

When you receive a new diagnosis, it’s a lot to take in. Sometimes, too much. It’s overwhelming and you can feel like you’re drowning in a sea of worry, fear and self-doubt at your ability to cope. But believe me, whatever your child has got, YOU’VE GOT THIS. Your love for them will inspire you and change you in ways you never thought possible. So keep your chin up. Keep your heart open. And most importantly, keep your faith in yourself. You are stronger than you give yourself credit for.

Illustration courtesy of Olivia Golden

 

To my one and only son,

I wanted to write you a letter for you to read when you get a little older. I’ve said these things to you in my head a million times and thought it was time to put them down on paper.

Right now you’ve just turned seven and are full of life, full of mischief, and also full of questions about your little sister and her Cystic Fibrosis.

I just want you to know that I understand it’s not easy being the sibling of a child with a lifelong illness. I see the worry on your face when she’s not well and can’t stop coughing. I see the deep-thinking going on behind your eyes when you should be thinking about football or Lego instead. I know that you’re dealing with concepts and realities that should be way behind your years. You love your sister and worry about what it all means, as do I. But it pains me to think of you having similar thoughts.

I also know that you resent CF some days. You even resent your sister at times! And that’s ok. You’re only human. And a seven-year-old human at that! It’s not easy when everything has to work around nebs and physio sessions, even when you’re not the one who needs to do them. It’s not easy when you’re told we can’t go here or there because it’s not CF friendly or because it will be too crowded and it’s cold and flu season. It’s not easy when your sister is in the hospital and you’re passed from pillar to post. These pillars and posts may be your Nanas or Aunties, all of whom you adore, but it’s still unsettling to not be in your own home with your family around you. And to wonder if your sister will be ok and when she is coming home.

I feel such heavy guilt at times when I think about you and how your life has changed because of CF. You went from the world revolving around you as our firstborn, to having to fight for a look-in! Know that you are still my world and that, in truth, I admire you more than you will ever know. You sit at the kitchen table and talk with me about O2 sats and meds with such maturity and understanding. You tell your sister you can’t hear her blows during physio if I’m struggling to get her to do her Acapella properly. And she ALWAYS does the next one better because she wants you to be happy with her. You suggest games like Mr. Wolf to get her moving because you know it’s good for her lungs. You are such a crucial part of this family’s fight against CF; perhaps the most crucial.

You don’t do these things because you have to. You do them because that’s who you are – a deeply caring person who always thinks about other people and how they might be feeling. That is a magnificent thing to say about a 7-year-old! Yes, there are days you’ve had enough and tell me ‘I wish no one in this family had CF!’ And believe me, so do I. Please let it out when you’re frustrated. It’s so important. I promise you that our house will always be open and honest and I want you to know that you can always tell me how you’re feeling, even when the feelings aren’t good ones.

We are all so lucky to have you and I look forward to seeing you grow up into the wonderful human being that you so naturally are. We always say that your sister is a Superhero for being so brave with her illness. But she’s not the only Superhero in the family. Sibling Superheroes are real too. And you are the most super of them all.

Love you lots and lots like jelly tots,
Mam xxx

Illustration courtesy of the talented Olivia Golden