Friday Coffee Chat: Books that saved my life

Carin’s Friday Coffee chat is taking a break on her blog and has moved this week to Jennifer’s blog Girls Gone Reading. Jennifer has been through a lot and tells us about a couple of books that saved her life in problematic times.

At first I thought there are no books that ever saved my life, but actually this is not so. There was a time when a book and a short essay did help me tremendously to realize that not only it was not the end of my life as I knew it, but also that I’m not the only one around who is in my situation.

When our younger son was born it turned out that he had one chromosome too many. I was not completely caught by surprise by this, but it still came as a shock to have your fears all of a sudden become reality.

Now, 5 years have gone by and I am over the initial shock. Our son is adorable, happy and so loving, you wouldn’t believe it. But when it was all new I searched the net and bookstores for information. I found a book called “Aussergewöhnlich” (Extraordinary) by a certain Conny Rapp. Conny, whom I have met in person meanwhile, is a photographer and has an absolutely wonderful daughter who also has Down Syndrome. She put this book together about mothers and their children with Down Syndrome which is so uplifting that I was not afraid anymore. It didn’t tell me everything would be just perfect, but it puts things into perspective. The book gave no advice, was no self-help book and didn’t tell me what to do. But it told me that everything would somehow be alright. And it was.

Conny has a wonderful blog where she posts lots of photos of people with Down Syndrome among others. The photos are beautiful and the kids are all adorable and unique. We met her last year at a photo session at our zoo. If you would like to see our pictures you can see them here.

The second story that helped me to put things into perspective is a very short essay that probably everybody with a special needs child knows already. It is called “Welcome to Holland” by Emily Perl Kingsley. It is often given out by organizations to new parents of a special needs child and it is obvious why. It is a very general essay and even though it was written about having a child with a disability it is extremely adaptable and can be used almost every time when you are confronted with an unfamiliar and unexpected situation.

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  1. That is really awesome, Rikki. I looked at her blog when you sent the link to me. Was that little girl with Sean her daughter? She was super beautiful. I have to admit…I’m a little jealous of the blue eyed people–so pretty (or handsome if you’re a boy..hehe)! She has a really beautiful website. She really does seem to capture people’s essence in her photos.

    Has Conny’s book been translated to English? Sounds like it is a very helpful read for people with special needs kids.

    Do you mind if I ask why you said it wasn’t completely unexpected that Sean was born with Down’s Syndrome?

    Welcome to Holland also sounds really interesting. I feel like I’ve gained a new perspective on major life challenges that change a family since my friend was diagnosed with lymphoma a few years ago. She shared all her treatment and family experiences on her blog and it was amazing how much I learned. I really believe that her adaptability helped her family cope with her treatments over the time period she had to be treated (she often had to commute to a hospital three hours away for treatment so was away fairly often from her 3 small children). Whenever I feel like my life is falling apart, I think of others who despite major challenges in their life, live their lives positively and boldly and I think that’s pretty cool. It makes me feel more positive about my own little challenges!

    Reply

    • No, her daughter is this girl here. I always think of Snowhite when I see her. She is gorgeous! http://connywenk.com/blog/juliana/

      I don’t think that the book has been translated into English. Meanwhile Conny has released a second book about fathers and their children. I haven’t got it but it’s supposed to be equally good.

      I’ll send you a mail about the not surprised thing later today.

      Welcome to Holland is really so adaptable that everybody should read it. It can help you in any given situation.

      Reply

  2. Thank you for sharing this, Rikki. It’s so incredible to get to know people over the Internet, but I really am starting to feel like we all are getting to know each other.

    I have heard over and over (in working with children with special needs, though never with a child with Down’s) that there really is something incredibly special about people who have Down Syndrome… that they have the best hearts in the world, the very nicest people. Do you find that to be true? Not just about your son, because he is your family after all, but others too.
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    • I also heave heard that and read that often about people with DS being especially good hearted and what not. I don’t know really whether this is generally true, because, to be honest, I don’t know that many people with DS. The kids that we have met all seem to be very nice and loving, but of course you only see snippets of their personality when you meet them for a short time.
      But I can speak for Sean and he is incredibly loving and sympathetic. He is in a regular kindergarten and eberybody adores him. He has the knack of getting other kids out of their shell and pulls them into the group. When someone else cries he cries out of sympathy. He’s always happy and nothing can really dampen his spirit. On the other hand he is VERY obstinate and must have his own way. If he can’t have it it is extremely hard to persuade him to accept this. But once he accepted it, it’s all good again quickly. He’s a marvel.

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  3. Rikki, it’s so good that you’ve found these books to give you support. With kids you’re always worried, but when it’s a child with special needs, you don’t normally have a neighbor or family member that can say “It’s only a phase, it will get better” or “Try this, try that, it worked for my son”, because they don’t know either.

    You still don’t know what the future holds, but to have confidence that everything will be fine is so important! These are obviously books that you should make propaganda for in relevant groups/websites. But maybe you’re already doing that.
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    • Yes, you are right. Being confident and optimistic is extremely important. And you never know what the future holds, no matter whether your child is special needs or not.

      Oh, believe me, unless they are living under a rock, every parent in Germany with a child with DS knows Conny’s book and the essay. Once you go on the internet “Welcome to Holland” pops up almost immediately and Conny is what we call “known like a coloured dog” (bekannt wie ein bunter Hund) in the DS community in Germany.

      Reply

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  5. I have been to her site before and I LOVE LOVE the pics…

    One of my god children is Austistic and I am apart of a support group for friends and family of kids with DS and Autisim and days when we have a mix it up – are some of the best days for me..

    Just feeling their arms around you and the wet smooches – UNBELIEVABLE…

    Treasure your treasure and thank you for sharing – I am going to go tickle my little guy now…

    E.H>
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