Evelyne Brink
“If you want to reduce the size of almost any problem, simply read It Takes Guts” says coach Steve Hardison. I have had some complaints about my book- people who read it before work arrived at the office late and readers of the evening hours lost sleep because they could not put it down. I apologize but imagine your dream of becoming a mother comes true and then you’re told your baby won’t survive. This is not what any mother signs up for and I refused to believe the limitations placed upon my child’s life. From this, my story unfolds showing life is full of possibilities, trying new things that haven’t been done before and I found myself on a huge adventure through real life with trials, tribulations, threat of losing it all, miracles and so much love.
Everything turned upside down and inside out. It is a story of growth, love, hope and possibility thinking. And it’s the story of the best kid I could have wished for. He’s turning 3 now and his blond curly hair and cheeky smile make my heart beat with joy. Unless he’s running away from brushing his teeth again. “Quick! Mummy coming!” Mummy will get you. Watch out for that kissing attack!
Please tell us about your reaction when you found out your child had ultra short gut syndrome.
It’s hard to hear there is something “wrong” with your child. What does it mean to have no small intestine? On day one it meant “he won’t make it”. My first reaction was not to believe it. It just felt too surreal. I didn’t like my mum and partner crying and buying into this. To me that was just a story. I’d seen him! But then of course it’s hard not to believe it when the doctors say so. There were a lot of tears, a lot of discussing things we have neither clue nor control about. It was very painful but also rather quiet inside. No desperate screaming- I was too tired from a loooong labour and too shocked. It was intense but internal. And we held each other very close. If they ever made a movie I bet they’d show it differently!
How did you find the strength to cope with a parent's worst nightmare?
I think the worst nightmare is losing your child. I was “just” confronted with the prognosis of death. That’s really bad enough. It also taught us so much and gave us a lot: Strength comes to those who use it. It builds. I didn’t have to go and find it anywhere, I would have been too exhausted to do that. I was too tired and too busy being in the very intense moment. I would say that being in that moment is the best place to be because all the tears and worries and pain is located in an imagined painful future. The moment was fine: he was there, alive. So were we. So - that’s what we had and that’s what we got to appreciate a lot because of the threat of it being gone so soon.
I find in less intense times we lose ourselves in our thoughts, tasks and wishes and find very little space in the here and now. We study it maybe, read books about it but to be able to settle into it, that’s magical. It’s really where all life happens and the rich experience of it. Going moment to moment and allowing ourselves not to get dragged into “how will we do this?”- That’s the secret. Not so easy to uphold but nevertheless the key to how we “coped”.
How did it impact on your relationships?
Thomas and I are very strong together when we need to be. He said “we will deal with everything as it happens, we always will”. We don’t run away from problems. Maybe we should because we’ve had our fair share! When the intensity easies I’ve noticed a lot of tensions and issues between us surface. It’s not easy to be under so much pressure so it does show eventually. And that too we will face. I have had lots of visits in hospital. Many friends wanted to see us, my experience is that people come in need for which I am very grateful for. I am lucky.
Please tell us about the bond you had with the medical staff who looked after your child.
How much time have you got? The medical staff were amazing. I have found so much respect and admiration for nurses and doctors. I thought big producers and pop stars would be the inspirational people to hang out with… But it turns out that Paediatric nurses and staff are those incredible selfless amazing and very passionate people I’ve longed to meet. You’d wish they’d train the adult departments. And I can understand that kids are cuter than most of us moany grown-ups but nevertheless… I cannot praise them highly enough. In the book I’ll name some of the top players and the ones that messed up I don’t name. It’s not perfect and mistakes happen. That can be extremely dangerous. You want to stay on top of things…but without the human warmth of the staff I would have been more sad, isolated and forlorn. Instead I was integrated into a social network but had the choice of when I wanted to speak and when I wanted privacy, I was held as if they were friends, and we were really cared for.
May I thank the NHS again for creating such support. Without the NHS, we would not have our child.
Can you tell us a little bit about the steps needed to recovery?
Not having a small intestine qualifies as a “life limiting medical condition”. So there isn’t really a recovery as such. It’s hard to hear that for people sometimes who want to know about a “solution” and “when will it all be ok?” The truth is we don’t know. We rely on a breakthrough in stem cell medicine for that. We fundraise for it to make it happen.
For Tuffel to come home nevertheless it took 8 months (which was way less than the 2-4 years of best case scenario mentioned early on).
A handful of operations, new internal plumbing (too complex to explain in a few words) and his ability to hold his own blood sugar for 10-12 hours. Can you do that? Don’t leave me unfed for that long. Luckily my son has developed that skill.
What were your biggest highs and lows along the way?
I don’t want to take it all away as you’ll go on a bit of a ride throughout the book. I make sure to always follow a light-hearted topic so you’ll never be left stranded in the darker stories and I promise to make you laugh throughout as well… highs are miraculous events beyond our initial hopes and lows are watching our worst fears happen to other parents.
How did you have to adapt your lifestyle in order to give your child everything they needed?
I haven’t worked very much for the last 3 years but actually I did still coach. I work with Channel 4 and private clients- but shall we say I’m rather exclusive as my time only allows for 1-2 hours a week.
I’ve stopped everything, really, initially. For 2 years I haven’t slept through the night as I cared for Tuffel up to 12 times in a night and of course the day…and I happen to be one of those who need their 8.5 hours so that was extremely incredible. I adapted my lifestyle by sleeping for 1-3 hours in the day with my son arm in arm and getting used to feeling awake only a few hours a day if that. I stopped most my activities and outings but I did pick up what I’ve wanted to do for yunks: ballroom dancing!
It’s healthy to create space for one’s self/soul/call it what you want.
What is next for you?
Now that the book is out, I’m available for talks, workshops and group coaching on possibility thinking, overcoming challenges and stress management.
Now that Tuffel has 2 nursery days ( a BIG achievement- it’s a mainstream nursery!!) I can expand my work, writing and networking again.
And then there is of course the dream of Nr. 2…
About Evelyne
Evelyne Brink is a Personal and Executive Coach, professional speaker and author of “It takes guts: A story of love, hope and a missing bowel”, and other books. She helps committed individuals to shine their light into the world and create from a place of deep aliveness. She has been known as UK’s No.1 Madonna impersonator as seen on TV (BBC1, ITV) and has written and produced her own music and shows around the world, as well as many more that never left her head. She loves a laugh, romance and radical honesty, although she doesn’t actually love the honesty bit when it’s personal and painful; she would prefer having a laugh!