“Do you know what your next project should be?” my husband’s grandfather asked me in his soft New Zealand accent from the Adirondack chair at my side.

We had just given him and the rest of the extended family a tour of our new home — and, as new homeowners do, had shared the to-dos and the not-quite-finished yets. We shared future landscaping ideas and furniture needs, decorating visions and home project plans.

“What’s that?” I replied on the sunny patio, looking into his 87-year-old blue eyes.

“Your next project should be… enjoy it. Your home is perfect just the way it is. You have everything you need. Sure, you can do projects here and there as you desire — but most importantly, you should enjoy.”

I smiled. “You’re right.” And we both leaned back in our chairs and gazed toward the towering oaks that line the backyard.

It was a simple conversation, but one I’ll always remember — not just as a homeowner, but as a wife and mother.

We all too often focus on the not-quite-perfect around us — the projects yet to be done — the accomplishments yet to be made. All the while, missing out on moments to enjoy the blessings before us.

I reflected on this sentiment today and thought it especially applied to being Kate’s mom. Granddad’s advice on our home could have been just as easily applied to me as a young mother to a child with Down syndrome — appreciative of the gift of her life, yet eager to get on with the “projects” — to get her into the best therapies, note her milestones, focus on what is yet to be accomplished.

But really, there is something more important to do than all of the other “to dos.”

To the new mom holding her sweet child with Down syndrome in her arms, frightfully asking, “What should I do next?” — my answer would be:

Enjoy.

Enjoy the weight of your newborn’s body in your arms, the warmth of her skin, the softness of her touch.

Enjoy her coos and cuddles, her newborn scent, the gift of her life.

There are plenty of things to do — as there always are — for every child. But in this moment, and in a million moments to come, always remember to enjoy.

IMG_3752

 

{ 3 comments }

I remember the feeling that came over me in the delivery room when the doctor told us Kate had Down syndrome.

I felt an incredible grief.

And, in a way, I was grieving something — the death of an imaginary dream, a 9-month long fantasy, an idea of a child who I had created in my daydreams who did not have a “disability.”

But the more I grew to know Kate — and the facts about life with a child with Down syndrome — the more my grieving gave way to new life. It awakened in me a spirit of hope and love I had not experienced before, and now my dreams for Kate are bigger than ever.

I know she can do anything that she wants to do — and I know I can help her become exactly who she is meant to be.

To parents who have received a prenatal Down syndrome diagnosis — or the ones who hold your new, sweet baby with Down syndrome in your arms with fear and uncertainty, don’t feel as though your dreams have died.

Do you dream that your child might fulfill a lifelong dream of singing the National Anthem for the Red Sox?

Michael did.

Do you dream that your child might finish the NYC marathon?

Jimmy did.

Do you dream that your child might own his own restaurant?

Tim does.

Do you dream for your child to graduate college and get a job where she changes lives and inspires children on a daily basis?

Bryann did — and does.

Do you dream for your child to find his or her soulmate, fall in love and get married?

Austin and Jessica did.

BootFitting3552

Or maybe you simply dream that he or she will be able to do the simple things — life’s biggest joys.

Your child will be able to do a great many things.

I personally know a little girl who changes the world for good on a daily basis — whether it’s chasing her big brother, adoring her little sisters or filling her mama’s heart with incredible joy.

DSC_0636

I didn’t know it the day she was born, but now I know: she is a dream come true.

{ 8 comments }

Life soars on

April 4, 2014

Kate was my second-born — and this week, we welcomed our fourth miracle, her second little sister into the world.

After Kate’s Down syndrome diagnosis at birth, I wondered what the future would hold for our family. Would we have more children? I remember googling that very topic and scrolling through forums the first weeks after she was born. Would life go on?

Little did I know that life wouldn’t just go on — it would soar.

Kate would become, in many ways, just one of the bunch. Another colorful fabric in the tapestry of unique individuals in our family — while at the same time, also giving her siblings an incredibly special gift in being their sister.

She loved holding her baby sister for the first time the other night and when I saw this pic I thought to myself: if I could have only imagined this image the day she was born.

The one I held with tears and fears the day she was born now gently cares for her younger siblings. Adores her older brother. Rocks her baby dolls and her skinny jeans.

Number four is cradled in my crossed legs cooing. And I am filled with the same awe that I’ve had since my first was born.

Life is so precious.

image

{ 11 comments }

Today is World Down Syndrome Day!

A day that takes place on 3/21 every year, representing the 3 copies of chromosome 21, which is unique to people with Down syndrome. Before Kate was born, I would have barely noticed this day — but today, I celebrate it with a joyful heart.

Whether or not you know someone with Down syndrome, there are many ways to celebrate with the Down syndrome community. After all, when it comes to love, acceptance and awareness of our differences, we’re all in this together.

Here are some ways to celebrate:

1. Share your favorite blogs, videos and stories of families with Down syndrome or other special needs on Facebook, Twitter, by email, or wherever you share.

Here are a few of my favorites: Dear Future Mom (a BEAUTIFUL video created by an Italian ad agency that went viral last week — get your tissues ready), Enjoying the Small Things (a blog that I discovered the day Kate was born that truly gave me comfort in those first few weeks), Down Syndrome: A Year of Grief and Joy (an honest and heartfelt article published by ABC News this month, written by my friend and new mama to a baby with DS, Genevieve Shaw Brown).

Why is this important? For many parents who receive a prenatal Down syndrome diagnosis, they feel scared and alone — as they have never even met a person with Down syndrome, let alone understand what the diagnosis means. The more we share the reality of Down syndrome, the less we are scared of it.

2. Take time to mindfully teach your children about compassion -- and there are so many ways to do that. Expose your children to people who are different than them, talk to them about our differences while emphasizing what we have in common — and set an example by embracing those that others may be weary of. Also, compassion and kindness are examples set not just in how we treat people with “special needs” — but in how we treat everyone: the Target cashier who is going slow, the person who cuts us off in traffic, the coach who doesn’t play our child enough.

3. Celebrate your own special talents. Kate may have Down syndrome — and while many choose to look at this as a disability, I see it as an incredible strength. Some things are challenging for her — while other things come much more easily for her. The same goes for my other two children. We all have different abilities — and today is a day to celebrate those.

4. Get involved in your local Down syndrome community. In a rut? Looking for a way to volunteer and change your life? Find the local Down syndrome society in your area. Volunteer. Help. Make friends. And realize first-hand how we’re all so much more alike than we realize.

“I can’t believe that God put us on this earth to be ordinary.” – Lou Holtz
DSC_0167

{ 0 comments }

World Down Syndrome Day is Friday.

Had I heard about this day before having a daughter with Down syndrome, I may have overlooked it, ignored it, smiled and walked passed it. It certainly wouldn’t have meant as much as it does now, of course. And that’s expected — we all tend to gravitate toward the things that we’ve had personal experience with.

But since having Kate, I’ve realized that, truly, this day is for everyone and anyone — whether or not you have or love someone who has Down syndrome.

The heart of this day is for anyone who is or loves someone who is human.

It’s World We’re-All-Created-Equal Day.

World We-All-Matter Day.

It’s World Don’t-Count-Me-Out Day and World I’ll-Surprise-The-Heck-Out-Of-You Day.

It’s World Different-Is-Great Day. World Be-Yourself Day.

It’s World We-All-Have-Special-Needs Day. And World Wouldn’t-It-Be-Boring-If-We-Were-All-the-Same Day.

It’s World Help-Each Other Day. World Love-Each Other Day. World Serve-Each Other Day. World We’re-All-In-This-Together Day.

It’s a day where we advocate inclusion and awareness of those with Down syndrome — and of all of us.

We are all born to mothers who we hope will love and accept and celebrate us. We are all born to a world where we long to be heard and respected. We all have challenges to overcome and strengths to celebrate — and we all need others to help us along the way.

And on World Down Syndrome Day, it’s a good time to remind ourselves, our children, our friends and family and communities: do not be afraid of what’s different.

Do not underestimate those around you.

Do not count out those who do things in their own unique way in their own unique time.

Encourage. Include. Involve. Accept.

After all, it’s World You-Are-Who-You-Are-Meant-To-Be Day.

I started celebrating World Down Syndrome Day for my daughter, Kate. But now I know: it’s for all of us.

149089_453026236537_509006537_5637706_3852141_n(1)

{ 5 comments }