Support for families

When filling out a survey recently it raised the question “Should families with children who are diagnosed with rare conditions be offered counselling at the time of diagnosis?

As a result of my own experience living with post natal depression I would have to say a huge YES!!!  I lived the first six years of my daughters life after she was diagnosed with a rare metabolic condition undiagnosed and living in a daze.  I still can’t remember a lot of those years other than going from one appointment to another, waking up each morning and just trying to get through the day.  My family suffered as a result of my suffering. 

I look back now and believe things would have been greatly different if I had been given counselling or some support from the date of her diagnosis.  Not just me but to our entire family.  We have all had our own struggles with her diagnosis.

It should be arranged for all family members and should be supplied as a free service.  I wouldn’t like to think that others have to go through what I did.  Since being diagnosed, treated and coming out the other side a much happier, stronger women who lives and enjoys every day, I can see the importance of counselling and early diagnosis of Post Natal Depression.  If you can see a family member or friend struggling don’t be scared to offer your support.

I didn’t understand when I was first asked whether I had grieved for my daughter.  I still remember asking “Why, she’s alive?” it seemed stupid.  Then once explained about why we needed to grieve for the child we expected and didn’t get, it all made sense.  This was when my life started to turn around.

I use my daughter and what she has to go through everyday to inspire me to make a difference and be a better, stronger person myself.  My family are my inspiration.

‘Welcome to Holland’ read Part 2 – (a decade on) by anonymous

My daughter is now eleven so I also found the passage “Welcome to Holland Part 2” by Anonymous, says a lot of what I feel and have experienced. I believe my journey has made me a stronger person and made me grow into a totally different person than I would have been if my daughter didn’t have special needs.  After having her I have changed jobs and now work as a teachers aide helping children with special needs and their families, a job that I love.  I am now also writing this blog, doing presentations at conferences and trying to make a difference and help other people that are at the beginning of their journey.  I have learnt to enjoy the smallest successes of my children and enjoy life to the fullest.  Her love of life is infectious…

“Welcome to Holland (Part 2 )” by Anonymous

I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I’d planned.

I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger—the pain and uncertainty. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time.

I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land. I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends.

Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn’t so bad.

I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I’ve wondered what life would have been like if I’d landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?

Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its’ tulips, windmills and Rembrandts.

I have come to love Holland and call it Home.

I have become a world traveler and discovered that it doesn’t matter where you land. What’s more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.

Yes, over a decade ago I landed in a place I hadn’t planned. Yet I am thankful, for this destination has been richer than I could have imagined!

The Passage ‘Welcome to Holland’ Changed My Life

My daughter with special needs was around 6 years old when I got diagnosed and started treatment for Post Natal Depression.  Yes I had been living with it for 6 years.  It was an extremely hard time for me and my family.  At one of my counselling sessions I was told to read the passage, “Welcome to Holland” c1987 by Emily Perl Kingsley. All rights reserved

It changed my life. It helped me understand that what I was feeling was normal for what had happened to us.  That my daughter being born with special needs made our life different but by no means less.  Since this time and through the help of my wonderful family and friends my life is fantastic.  I have learnt to enjoy our ‘Holland’.  Please read and share with your friends.  Even if you don’t have a child with special needs it may help you understand how we feel.  It may also help people whose lives have gone in a different direction then they had planned. 

“Welcome to Holland” c1987 by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books 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 plane 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 that 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 life 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.