As expectant parents we develop a picture in our minds of what our lives might be when our baby arrives. Most of us safely deliver a healthy baby and go on to live the family life we anticipated, but for the minority of us this isn’t the case.
Many years ago, sometime after James was born, I was given an essay written by American author and activist Emily Perl Kingsley called ‘Welcome to Holland.’ You may have read it.
Emily wrote……
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared this unique experience to understand it, to imagine how it would feel.
It’s like this…when you are going to have a baby it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, The Michelangelo David, The Gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later the planes lands. The stewardess comes in and says “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place. So, you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy.
But after you’ve been there for a while and you catch your breath, you look around….and you begin to notice that Holland has windmills…and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very very significant loss.
But…if you spend your time mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.
Copyright 1987 Emily Perl Kingsley All Rights Reserved Reprinted by Permission of the Author
The Author
In 1974 Emily Perl Kingsley gave birth to her son. After a long labour she delivered her baby to be told by her obstetrician that he had Down Syndrome and he would be “permanently, severely mentally retarded.” The recommendation of her doctor at that time was to send her newborn son to spend his life in an institution and to go home and tell her family he had died at birth. That in itself is, of course, horrific but was not uncommon. Emily and her husband did not take this advice but instead, with little support, took their son home. Emily’s son grew up in a loving family home and has gone on to appear on TV and write two books, and with the support of his family he has lived his life to the full.
Whilst a widely published and translated piece of work, Welcome to Holland seems to instil different reactions amongst parents of disabled children. Whilst some find it positive and uplifting, others have found it flippant and not at all acknowledging the depth of grief or the long term and complex challenges faced by parents of a disabled child. I think our view of it fluctuates and may be altered by what stage and particular experiences we are currently facing. Personally, I have mostly found it to be uplifting but I respect that this might not be everyone’s view.
More recently I read a book about Autism by Jed Baker, “No More Meltdowns.” I was reminded of Emily’s work as Jed referred to it in his book when talking about parents needing to adjust their expectations. This is, of course, the underlying message in Welcome to Holland. As expectant parents we subconsciously develop a picture in our minds as to what our life may be when our new born baby arrives, how our family will grow and what our ‘normal’ family life will be like. We see our friends and their families leading that life and we expect to ourselves. Naturally, most of us worry at some point during our pregnancy that our baby will arrive safely and be healthy. For most the reality is that we do just that, deliver a normal healthy baby, but for the minority of us this isn’t the case. Many, like myself and my husband Darryl, will not know for a long time that our child is going to be permanently disabled and not lead the life we had expected. The knock-on effect of that too is that our family life will also never be as we anticipated.
Adapting is a Slow, Ongoing Process
Adjusting to a different life does not happen overnight, it takes many years and I’m not sure if we ever do totally adjust to the situation we find ourselves in. It’s hard to put into words the range of emotions we experience as parents as we negotiate the challenges that lay ahead of us. We may go through periods when we envy the normality, the apparent simplicity of our friends lives but that doesn’t mean we love our children any the less, I love James with all my heart, I would do absolutely anything for him but it doesn’t mean that at times of exhaustion and stress and worry it isn’t hard to see a way forward.
As a parent of a disabled child I have always said that he is my responsibility, it may not have been the life we expected or would have chosen but it’s me who will make the necessary sacrifices and I’ve done that his whole life. I’ve missed doing many things, declined invitations, missed out on trips, holidays, parties etc and that’s not even considering how the stress and exhaustion affects our own health but I love James and so, unquestionably, we do what is needed. But I think one of the hardest things is to see the effect having a disabled child has on their siblings. Why should they have to make sacrifices, they didn’t ask to be in this situation.
I was lucky, I’ve never found my self totally on my own for extended periods of time, I had my husband, Darryl, here. Yes, he worked long irregular hours and so sometimes things were a juggle for me, but no more than other families with multiple children. Between us we’d take one child each to bath or feed and when I was alone whilst I sorted one out the other was plonked in the playpen. We’d have a buggy each when we went out as James didn’t walk for a few years, and wouldn’t walk far even when he did, he’d often sit down and refuse to move!! I had a tandem buggy if I did have to take both boys out on their own. That was hard work.
Making it Work
Life evolves for all families and once Harry was past the baby stage and was a toddler and then started school some things became easier, some more difficult. For example, Harry was able to feed himself much sooner than James so I could concentrate more on James at mealtimes. However, once Harry was mobile I had to have eyes in the back of my head. Harry’s development exceeded James’ very quickly and so he wanted to do different things to James so splitting myself in two wasn’t easy. The thing that always made me saddest was that Harry just didn’t have anyone to play with, his friends had brothers to play a game or kick a ball about with. Harry didn’t. When he reached an age to make friendships of his own that in itself presented difficulties for me in either having friends round or getting Harry to his friends houses with James in tow. When Harry joined cubs and then scouts I found it difficult to get him there in the evenings as Darryl was often at work then. I’d have to take James out sometimes on cold winter nights wrapped in his pyjamas to collect Harry, but if it was too late after James needed to be in bed on his feeding pump it just wasn’t possible. Friends helped sometimes but you don’t like to ask too often, especially when you can’t return the favour. I’m sorry to say that there were times when unfortunately Harry had to miss cubs or going to friends parties, but I tried my hardest to limit those occasions.
When Darryl wasn’t working on a weekend we would take the boys out. We had lots of picnics or car-nics in the rain because we could do that with both the boys, but at other times we’d go our separate ways. I remember going to Bournemouth. Darryl took James for a walk along the beach while I took Harry into a train fair, and that’s how we managed to ensure Harry got to do normal stuff he wanted to do. I was desperate to lessen the impact having a disabled brother had on Harry, I didn’t want him to resent James. I knew Harry felt lonely and bored at times having no one to play with.
Respite
When James started going to respite locally when he was around 9 years old the benefit was twofold. Yes, it gave us a break, chance to recuperate and catch our breath, but more than anything it gave us quality time with Harry. We tried to make the most of those times and take Harry to the café for breakfast or the pub for lunch, go to football matches, snooker or ice skating, just do ordinary things but things we couldn’t do with James. Later on we were fortunate that my sister, Joan, was able to come and look after James so we could take Harry on holiday a few times too. We did as much as we could with James but as he got bigger, noisier and his behaviours escalated it often became difficult.
So yes, Welcome to Holland does divide opinion but as Emily writes about discovering the lovely, beautiful new discoveries of Holland I am reminded of the friends and opportunities I have had that may not have come our way had it not been for James. I have had the pleasure of meeting and working with many wonderful professionals, I have learnt so much from so many people, I have become the person I am today because of James. I have made amazing lifelong friends whom I never would have met had our circumstances been different.
“No More Meltdowns” by Jed Baker PHd was an interesting book and I have written a review which will be coming up in the next couple of weeks. Whether or not your child is on the Autism Spectrum I think his book has something to offer all parents.
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