Tuesday, March 21, 2017


Twenty nine years ago we welcomed our first baby into the world... he was born just two weeks after I turned twenty, and when I held him in my arms for the first time, I felt like I was a new person. It's hard to describe that transition ... I just know that one day I was a wife, and the next I was a mother - and from that moment forward I was connected forever to another human being... a part of my heart was now living outside of my body.

It doesn't matter that my baby is 29 today - he will forever be "my baby", and no matter where he is or what he's doing, who I am is wrapped up in who he is... and the same holds true with all of my babies.

I've heard people claim that motherhood doesn't define them, but for me that's a perfect description of who my children are to me. They make me who I am. I can do a lot of things in life - invest myself in hobbies and interests and passions - but there is nothing that has a hold on my heart like my children. I'm so grateful - so, so grateful - for the privilege of giving them life.

If you would have told me twenty nine years ago, that this day - March 21st, World Down Syndrome Day -would one day hold another special place in my heart ... I honestly don't know what my reaction would have been. As a twenty year old first time mommy, whose idea of perfection was the tiny golden haired baby she held tightly in her arms ... I truly don't know that I would have embraced my future with wide open arms. I don't know that I would have understood the genuine joy and honor - the privilege ! - of being entrusted with not just one, but two designer gened little girls.

But Lily changed me. And the transformation was just as drastic, just as eye opening, as the one I experienced when Jason was first placed in my arms. If the birth of my first baby opened my eyes to the miracle of life and forever changed the person that I was, then the birth of my tenth child widened that perspective one hundred fold, and made me into the person I am today.

And Madison was just the icing on the cake.

Today, tens of thousands of families across the world are celebrating the GIFT that their loved ones with Down syndrome are.

We celebrate our loved ones, not in spite of their differences, but because of them. Lily and Madison were uniquely created - there was no mistake here, they arrived in life exactly who they were meant to be. I believe that with all my heart.

Today, more than ever, I am so honored to have been given the gift of raising my girls.

In honor of this day, I've joined with my fellow Ds mama and advocate, Krista Ewert, to help promote a very special book she wrote called This Is Ella. You can read more about Krista's project HERE.

To help celebrate World Down Syndrome Day, Krista is giving away one copy of her fabulous book, This is Ella, to one of Lily's readers here on A Perfect Lily.

This book will be available in November of 2017, and the winner's copy will be mailed to them at that time.

To be entered to win, please visit Krista's This Is Ella, kickstarter page HERE, and then come back saying you did so in the comment section below.

For a bonus entry, please leave a comment telling me how Lily and Madison - or others you know with Down syndrome - have impacted your life.

We are so blessed to celebrate this day with all of you - HAPPY WORLD DOWN SYNDROME DAY !!


Mdeel said...

Visited her Kickstarter page! What a WONDERFUL book! I hope to purchase one in November when it is released. I love reading your blog (although I rarely comment). I am originally from north of Vancouver, WA. I love being able to relate to different places you visit etc. My oldest son (4.5 years old now) was born unexpectedly with Down syndrome when me and my husband were 19 years old. We now have a total of 4 children (4.5, almost 3, 18 months and 3 months). Our household is very busy, but we wouldn't change a thing! Love seeing the pics of your girls, lots of them remind me of my oldest son. We typically try to do something on 3-21 , but not this year as this mama is sick :( Mom's should not be allowed to get sick. Anyways, can't wait for this book to be released.

cara said...

Love you all!!! You are so blessed to have two extra specials! And they are so blessed to have you! You have inspired me and encouraged me so much these years. xoxoxo

Unknown said...

What a beautiful project! I will be purchasing one for my friend come November. I am blessed to have had several wonderful families in my life who include a child rocking an extra chromosome. Rosie is also a special wee girl who we had hoped to adopt, but due to the social service system in New Zealand at the time - we were sadly unable to bring her into our family. She is such a perfect ray of sunshine and is forever close to my heart. I hope to adopt in the near future Lord willing. A close friend also has a baby boy who has Down syndrome. He's precious and giggly and reminds me of God's joy all the time. I've been following you for about four years now and it's been such a privilege to have a window into your lives and to pray for your family. Your have all been such a blessing and encouragement to me ��

Unknown said...

Such an amazing project! Ella looks like such a ray of sunshine and the world needs to see more of that kind of joy. I have been blessed to have several families in my life who have had children rocking an extra chromosome. A close friend has a precious, giggly wee bany boy who happens to have Down Syndrome and he constantly reminds me of God's joy as Liam loves big and bold. Their journey has not been without difficulties but they embrace him as the perfect wee man God created him to be. Another special soul in my life has been Rosie. We had hoped to adopt her, but due to the social welfare system in New Zealand at the time and the complexities of her case, we were sadly prevented from welcoming her into our family. But she had already grabbed my heart and will always occupy a large part of it. I've been following your family for about four years now and I am so blessed by you all. It's such a privilege to get a window into your lives like this and it is such an encouragement to me. I hope you adopt a child in the near future (Lord willing) so I'm learning as much as I can about parenting now! Thank you for sharing your lives with me 💕

Pogue Mahone said...

It's not Down Syndrome....it's UP syndrome!

katrynka said...

I'm excited to support this project and read the book! I am planning to get the book bundle so I can share it with some local schools, and maybe some parents of patients with DS.

katrynka said...

I have not met your children, but I am a pediatric physical therapist and I have loved many children with special needs, including DS. Thank you for sharing your family on your blog, I love to read your posts!

Katrina said...

It looks like a wonderful book. I shared the Kickstart page on my FB page so others can learn about it and know how to enter to win.

I have followed Lily for a very long time and she helped me realize how much I would love to adopt a little girl with a little something extra too. Unfortunately, you know how that turned out but my little girl, Natasha, has still changed my life and the lives of others even though she still lives in her orphanage.

We have a book coming out too :) It doesn't really focus on Down syndrome as much as it focuses on how good and love can shine through even in very hard times. If any of your readers want to go like "Natasha and the Christmas Wish" on FB I would love it. I plan on sharing a book with you when they are ready in May and also giving you one to give away if you want.

Thanks for sharing your beautiful family with us and for showing the world how Down syndrome is beautiful instead of something to fear.


Unknown said...

I look forward to reading that book! Your girls are precious! Happy World Down Syndrome Day!... a day late 😉

Heidi said...

Visited the Kickstarter page. What a neat book she has made. I found your blog when I was expecting my 9th child in early 2010. I have enjoyed watching your family grow and have learned so much about downs syndrome from your girls. Downs syndrome is not something that scares me like it used to. Thank you for sharing your family.

Tina Zimmerman said...

Wow SO NEAT! We need more book like this around! We have A down Girl here at our church, who is a sweetheart. Also we have friends who are adopting a Downs From China! I also grew up with a Downs cousin, who bless' me very time we visit! They truly are sweet and awesome children!