Hazel has been tube fed all her life. A total of 3 years and 4 months almost to the day.
The little tiny naso gastric or ‘NG’ tube that she had inserted through her nose and into her stomach soon after birth didn’t worry me at all in those early days. I’d been there, done that with my first baby. The nurses were always on hand to re insert the tube when it inevitably got pulled out by her tiny fingers. They were expert at getting it back in place with minimal fuss.
It was a temporary necessity. And I believed the optimistic medic who told me ‘she’ll be feeding in no time.’
So, when Hazel finally came home from hospital…some 2 months old and with a feeding tube it was a whole new ball game.
As we left the comfort and security of the neonatal ward, where pretty much every baby had a tube of one sort or another, our hearts were almost as laden as our hands.
Boxes of large plastic syringes, spare NG tubes, reels of sticky tape and other medical paraphernalia too numerous to mention were loaded into the back of our car.
Some parents of children with Down’s syndrome will tell you that one of the hardest things to deal with when they first took their new baby anywhere was fear. Fear of how others would react when they first found out that the baby had the condition.
I was no different and I had (or so I thought) an additional reason to be fearful. One that was literally plastered to her tiny face. Sometimes, the tube was all I could see. I thought it was all others could see too. Of course, it was very conspicuous. There was no hiding it, though I tried.
It took me a week before I finally plucked up the courage to go out in a public place with my new baby. I felt ashamed. Wrongly so – I know that now.
To be fair, it didn’t exactly help that, as I reached the end of that first trip…a quick dash around my local supermarket – the cashier leaned over to get a closer look at my baby. Then, pointing directly to her face she asked, in a very loud voice “What’s that?”
I wobbled, inside and out. Taking a deep breath I mumbled an explanation. Desperate to get out of the store and away from her stares and questions. I was mortified.
Yet, her ignorant question was so inappropriate it was laughable. So, as I walked away, still reeling from her insensitivity, I started to laugh.
I had faced one of my fears.
And I was ok.
I began to see that this young woman had actually done me a great favour. Her intrusive questioning actually became the thing that broke the hold that fear had on me.
As the weeks went on so I my courage grew.
A full lunchtime feed in the middle of Nandos. Purple syringe and plastic tube in one hand, bottomless refill in the other. Diet coke – for me, not her. Made even more memorable by the entire feed coming back moments later, as was her habit. Forcefully. My husband simply got up and went to fetch some more paper towels – they had a cute chicken motif. He then mopped the growing exclusion zone around our table as best he could and I started the feed again.
The waiter asked if we were enjoying our meal. I lied. I didn’t care.
That last sentence is, of course, not true. I felt the stares of every person in that restaurant as well as a few passers-by; we had a window seat. Tube feeding in the middle of Nandos is not normal. So, we had to make it normal, at least for us if no one else. We desperately needed some normality back in our lives after months of hospitals and hiding away. And, this new normality came with its own colour.
Purple is the colour of tube feeding. Purple is the colour of all that goes with it. The syringes, the tube, the pump, the milk even; well, the container! Once a month, for the last three years we have had a delivery of purple. Boxes and crates of purple that fill up our hallway.
And, we are very grateful for the colour purple. It keeps Hazel alive. Without it she would not be. No amount of coaxing or cajoling could persuade Hazel to eat or drink enough by herself to survive. That will, we hope, come in time. For now, we accept that purple is what’s needed and is what’s normal. For us and also for others we have come to know as friends; their lives are purple too. Many of them will always be purple.
I could perhaps write one of those list type books…”Places we have tube fed in”. It would be full of the usual ones that people like us find themselves in…..hospitals, clinics, parks and cafes. As well as a few others… in church, on the train, in the car, in a stately home…….
Oh and the beach!
Memorable for all the wrong reasons. Hazel pulled her tube out, I struggled to get it back in. More stares. Though, in fairness, our fellow beach goers could be forgiven for staring. The screams she emitted as I tried and failed to reinsert the tube were horrific. These were the times when life with a feeding tube all got too much. Stoicism left me and I would throw in the towel. If it weren’t for the expertise of others, I don’t know how I would have coped. Nurses on hand 24/7; we were given open access to our local children’s ward. Or the invaluable support of a mum who had mastered the tube with her own daughter and was there one particularly stressful day when it came out. She calmly put it back in whilst I sobbed. Defeated.
Then, there are those heart sinking moments when we discover that we’ve actually been feeding something other than Hazel. Her cot, for example. The tube silently worked loose, milk seeped out all over the mattress and all who slept on her. Panda, teddy, and Hazel.
Now Hazel has a different kind of tube. Gone is the NG tube as well as the awful struggles that went with it. Instead she has neat feeding ‘button’ right in the middle of her tummy. So much easier on all levels, and not least because her beautiful face is no longer harshly obscured. We have only a handful of baby photos where she has no tube. Quickly grabbing the camera to capture the moment, usually just after she’d pulled it out.
One day the colour will change. Hazel will, in time, learn to feed. With the help of therapists and others it’s what we are working towards, praying about and looking forward to. She will get there, sooner or later. For now, we accept that purple is a huge part of our lives. And, in the unlikely event that she doesn’t, we know that this colour won’t define her any more than her extra chromosome does. Hazel is a joyful, smiley, noisy, cheeky, sometimes cross but most of the time happy little girl who adores her sister. She loves life; even a tube fed one and has no sense of missing out on anything. She would be the first to let you know if she wasn’t happy about something, that’s for certain! And, if Hazel could talk, I think she would say this:
Why spend time eating when you can laugh and play instead?!