Now we are 5

The twins turned 5 today, and I’m stunned, and happy and proud too, that so much time has passed, and that they’ve grown into the little people they are. We celebrated with a fresh rhubarb cake (Bennett’s request) and whipped cream on top (Avery’s) and lots of singing: I think we sang the “Happy Birthday” song at least a dozen times. And too, blowing out the candles, and the wishes. I know it’s not my birthday, but I made a wish anyway: more. I want many, many more years of this happiness.

A few days ago, a mom to a child with DS sent an email and asked, “If there was only one piece of advice you could give me, what would it be?” I didn’t know what to tell her; or rather, I had too much to tell her. This was my partial attempt at an answer:

There’s so much to consider! About learning how to manage prejudice, and about what to say and when to say it, and about how to juggle schedules and therapies and all that. There’s forgiveness, for all of us, and strength, and love, and hope, too. And faith, in yourself, and your child. I guess if I had to pick just one thing, it would be this: let your child show you the way. You will find it, together, and it will be amazing. It will be all the things you hoped it would be; it’s all there, waiting for you.

I don’t think it was a particularly good answer! And so now I’m wondering, what is the one piece of advice you’d want to share with new parents?


19 thoughts on “Now we are 5

  1. The single most important factor in dealing with my son’s diagnosis of DS has been faith…faith that Nathan is part of God’s big plan. A few days after my ultrasound I woke up at 4:30am with the name, “Nathan” in my mind. My husband and I didn’t even consider this name. I immediately went downstairs to look it up in a name book, turned right to “Nathan” and read that it means “God’s gift.” Ironically Nathan was born the day after Christmas, 2005. On days of doubt and guilt, I have clung to that early morning experience.

  2. My one piece of advice: Don’t make the mistake of letting Down syndrome define your child. Every child with DS is as unique as those without it. Treat them accordingly. 🙂

    I read a review of your book and did a bit of research and found your site. So glad I did.

  3. Belated wishes to you and the boys!

    My one bit of advice? Don’t believe in limitations…yours or your child’s. If you shoot for the stars you just might catch one. If you don’t…you never will.

  4. Happy Birthday to the boys! You said it so well! But my advice is to Expect the Unexpected. People always expect the worst or the least out of something and I say aim high, don’t lower standards because of labels, just adjust the pace at which to achieve them.

  5. Happy Birthday boys!!!

    One piece of advice:

    Life as a mother with a child with Ds is really no different from being a mother to any other child. They grow and thrive from the same roots, with the same love and care, and they all blossom into their own little being from the nurturing you provide.

    Some seeds grow faster than others, some grow pink petals while others are yellow, each of them beautiful in their own way, all of them worthy of life. The size, shape, and color of a flower cannot determine its beauty. It’s one’s impression of that beauty that is most important.

    Fear not the unknowns, or the stories you have needlessly placed in your head (built from your own experiences and misconceptions).

    Build your own stories.

    Don’t worry too much about what other people think, don’t think too much about what other people see, and don’t live too much by the standards of conventional living.

    As conventional is overrated anyway.

    Enjoy the milestones with great joy.

    Don’t allow yourself to become too overwhelmed by comparisons.

    Live, laugh, love, and be happy.

    Your child will benefit most from your example.

    If someone would have told me that raising a child with Down syndrome was no different than raising another child almost four years ago, I don’t think I would have believed them, yet reality is that is it so very true.

    My daughter brings great joy to my life. She has a way of making me smile, even on the most awful of days. She is a much a part of me as breathing, and I am forever thankful for her existence.

    She is as valuable an element to our family as any other child, as instrumental in our everyday life as a beautiful note dancing across a well composed page.

    She is who she is—my daughter. A reflection of so many pieces of me, even the extra ones. I love her.

  6. Happy birthday to the twins!

    My one piece of advice would be cliche, but so true. Trust those instincts. Especially when it comes to all things medical. Not listening to doctors and pushing what I felt should be done has saved my children’s lives, more than once, and I’m not exaggerating.

  7. WOW – 5 years – Congratulations!! I hope both boys had a fantastic day. I don’t know what I’d say to another new parent – will have to give it a bit more thought. I do know that for us oldies I’d love to share (or google Merry Makers) a fantastic doco on a dance group made up with lots of different, gorgeous people.

  8. Happy birthday guys!

    My one piece of advice was exactly the same as Michelle’s. 99.5% of raising a child with DS is the same as raising any child – all kids need to be loved, fed, clothed educated, played with and have their needs and dreams supported.

  9. The happiest of birthday wishes to Avery and Bennett! 5 years already!?

    My piece of advice would be to realize your child is a child first and just to get to know them as your child, the rest of the stuff will come later.

  10. Happy happy birthdays, boys!! And many happy returns of the day!

    My one piece of advice to a new parent? Enjoy your child. For all our preparation for our first baby – the baby-proofing, the shopping, the boning up on warnings and possible illnesses – we were caught by surprise by the pleasure of her company.

  11. Happy Birthday Avery and Bennett!! And Happy Birthday to you, too, mom…yes, I think we moms should get at least one wish on our children’s birthdays.

    One piece of advice: You said it, right there in your email response. Faith in yourself; faith in your child. That’s the heart of it. It is the thing we should never lose sight of.

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