When You Don’t Know What To Say

The day Willow was born, my husband and I made a decision to be open and honest with our other children about their new sister’s health and diagnosis. We kept it simple and left it open for questions.

Ages 4 and 6 at the time, we told Bella and Laken that their new sister had something called Down syndrome. All it meant was that it might take a little longer for her to learn some things, like how to walk or talk. We also told them that Willow had 3 holes in her heart and was very sick but that a surgeon would be fixing the holes in a few months. I don’t remember them asking any questions or showing any fear. I just remember the smiles and love and excitement of meeting their new sibling.

The next month was horrible, simply put. Jaundice, weight loss and heart troubles meant no sleep, lots of stress and almost daily visits to the doctor. It was obvious things were out of control, but whenever one of our children asked about how one of Willow’s appointments or tests went, I tried to be as open and honest as possible. I also kept the answers simple.

Even as Willow prepared for heart surgery, at just one month of age, I remember telling the kids that there was a real possibility that their sister could die, but we were praying to God that that wouldn’t be the case and that everything would come out fine. Was this the right approach? I have no idea.


Open, honest and simple has always been our way. Especially when it comes to Down syndrome. But recently, I messed up.

A few weeks ago, my son, my beautiful son, said something to Willow that both melted my heart and broke it at the same time. It also presented an opportunity for me to be open and honest with him….. but I didn’t take it.

For once, I couldn’t find the words to say.

Willow was doing one of her favorite things, taking care of her baby doll. She walked by her big brother, pushing her pink stroller, baby inside, a bottle and diaper tucked underneath.


“Willow, you’re going to make a great mom when you grow up.”

(Excuse me, I need a couple tissues before I continue typing…..)

“And if you don’t have your own kids, I’ll let you babysit mine!”

As I rushed around the kitchen counter, I felt the tears starting to form. My only response was a big hug and a “Awww… you’re a good big brother, Laken.” Inside I was a puddle of emotion. I wanted to say so much, but didn’t have the words.

See, Laken is right in that Willow has the heart to make a darn good momma. She is love. She takes care of her baby dolls like you wouldn’t believe. She sings to them, feeds them and even shares her orthotic braces with them.


Put a real baby in front of her and watch out. That baby is gonna get a hug.

According to the National Down Syndrome Society, approximately 50% of women with Ds are fertile. It was long thought that males with Down syndrome were sterile, but that is no longer believed to be the case. Unfortunately, there haven’t been enough studies of men with Down syndrome to place a percentage on those that are fertile.

So, is it possible for Willow to be a mommy someday? Yes, very much so. The National Down Syndrome Society also states that 35-50% of children born to mothers with Down syndrome are likely to have trisomy 21 or other developmental disabilities.

This is where my heart is a jumbly, crumbly, tumbly mess.

I look at my little girl with her big heart, loving on her babies, and I imagine her growing up wanting a baby of her own. Of course, I know she’ll be married. Just look at her. She’s gorgeous.


Will I be able to be open and honest with Willow when I need to be? Will I be able to tell her that raising a child is a lot of hard work. A LOT of hard work. Will I be able to tell Willow that raising a child takes a lot of money? A full time job would be required, which by the way, taking care of a child is a full time job in itself. And what if that child has Down syndrome or another disability?

I have no doubt in my mind that God purposely created Willow exactly the way she is, extra chromosome and all. But sometimes, I don’t understand His ways. That’s hard. Really stinking hard.

Yes, Willow would make a great mom in so many ways.  My son is right, he is so right. But, does that mean Willow can be… she should be… she will be?

The simple answer? Probably not. How’s that for open and honest?

While I hate the thought of having to someday talk about this stuff with Willow, I hold on to the picture of her playing with Laken and Bella’s children, being the best auntie you could ask for. Heaven knows there’ll be no shortage of hugs.

I still kind of feel like I failed my son by not talking about the realities of his sister being a mother someday, but I know another opportunity will present itself soon. After all, Willow loves to play with her babies.


As for me, I’m so thankful that God made me a mother. Not only that, He made me a momma of 3 very unique, beautiful children. I don’t have all the answers right now, but I am trying. I am trying so hard. And, I am trusting. Trusting that whatever I don’t understand, He does and that He’ll always be there to help me.

That’s the simple, honest, truth.

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