If Someone Had Only Told Me…

Today I’m participating in a blog hop with the T21 Traveling Afghan Project. If you don’t know about this project, check it out. The momma who runs it is equally down-to-earth and hilarious – and one heckuva crocheter.

The topic is “If Someone Had Only Told Me…”

This is interesting for me because I was absolutely blessed to meet someone just 2 months into this journey who sat me down and told me some things that completely revolutionized the way I approached Rowenna. I only had to get 2 months in before someone told me the things that I needed to hear – and for that I will always be grateful. I am so grateful that someone did tell me.

Here’s what she told me that afternoon:

-Grief is like a wheel. Sometimes you’re riding high and life is good; sometimes you’re at the bottom. It can be work to get back up, but a wheel always turns, and you will be on top again. With time and experience and love for your child, it will take a lot more to move the wheel to the bottom, and a lot less to ride back up to the top.

-Cast a net for support, and cast it wide. Have footing in “Down Syndrome World” and equal footing in the “typical” world. Find supports for yourself, your husband, your extended family, and for your child. The net will lift you up in surprising ways, and surprising people will end up becoming strands in that net.

-Your daughter is capable. It is ok to expect things of her, and to hold her to a high standard.

-Life moves on from the diagnosis. Your relationship with it changes over time. It will not always feel so consuming.

-It’s okay to not like “Welcome to Holland.”

-There are many, many ways to measure success.Your daughter can have a life of her choosing, and the groundwork for that life is laid now with inclusion, education, and expectations.

-Young adults with Down syndrome can go to college and out to the bar with their friends.

-Do your research and listen to your momma gut. The gut is usually right, and it’s ok to question a doctor who tells you otherwise.

-Your daughter is beautiful and will surprise you in so many ways.

I am so glad to have this wise, wonderful woman in my life. These are the things I absolutely needed to hear, and it filled me with so much hope at a very dark, difficult time in my life.

Thank you for helping me to see the beauty in this life with Down syndrome.

Rowenna showing off her tri-corner hat!

3 responses to this post.

  1. What great advice. Seriously. And look at your little pirate girl. Ooh, I want to tickle her!


  2. I think all parents need that advice, regardless of the diagnosis (if there’s even one there). Sometimes, as parents, we forget that our children are more than their diagnoses and that’s perfectly fine to treat them “normal.”

    Also, love that kid. She’s so adorable!


  3. She is so ridiculously cute! I love the expression on her face!

    You had a very wise friend with very wise advice! Thank you for sharing it with the world!!



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