For Jooniper

Try as I might, when Avery was a newborn I couldn’t imagine my life with him. All I could see was sadness and heartache. Sometimes, just looking at him would make me cry.

Almost four years have passed. I wish I could reach back to that new mother. I’d tell her the things that took me a long time to learn, so she’d have them in her heart right from the beginning.

I’d tell her that its okay to be scared, and to feel sad and lonely. You’d be surprised how many other mothers feel the same. The mothers who struggle the most early-on become the strongest. Their resolve is like steel forged in fire.

If you don’t feel like you think you should feel, fake it. Sometimes going through the motions is good enough. Soon, the motions become habit. After a while, the habit becomes real. It’s a place to begin.

Doctors do not always know what is best for your child, or your family. You know more than you think you know.

Your baby will grow into a whole, unique, complete person. Different doesn’t mean broken.

Having a baby, or child, or person with Down syndrome in your life means it will be full of surprises. If you are a person who doesn’t like surprises, you will learn to appreciate them.

The love you feel for your baby will be one of those surprises. Your understanding of it will appear when you least expect it, like sunlight breaking through the clouds.

The love you get back will surprise you even more. It is the gift so many of us talk about, the silver lining. It is pure, like the love of any child, and unchanging. You may not be able to imagine it just yet, but it is there.

It will wait for you until you are ready to accept it. And as with all good gifts, the only thing you have to do is say yes.

By jennifergg

I am a writer, a reader and a chaser-afterer of my blue dog Sam. Pinwheels is my blog about life with Down syndrome.

8 replies on “For Jooniper”

Oh my and now I am crying too! What a terrific gift, and thank you for sharing it. Congratulations too, to your beautiful family on your newest addition!

You talk about surprises. Our 3 year old son with Down syndrome communicates quite well with sign language. On Friday we took both of our boys to see Santa. When Santa gave our son a small stuffed animal I asked him to “thank Santa” He signed thank you. Santa immediately began signing to our son and they had the most amazing conversation! Santa asked him what he wanted for Christmas and he responded with the sign for dog! Then he signed “I love you Santa” My wife and I started to cry. It was the best gift we could ever ask for.

Thank you for your comments, I really appreciate them.

It’s easiest for me to talk about my life with Avery as it is now that I am more used to being his mom. But I think it’s important to remember the early days, too, which were harder for me, but were also the foundation of our lives today.

C.S. Lewis is one of my favorite authors. And yes, I do believe the experience of coming through grief ends in subtle, unexpected ways. (But I think he says it much better than I do.)

Thanks for reading, Gillian. I really appreciate your comments, you have an invaluable persepective. Welcome!

I love what you have to say, Jennifer. In my first few months, my anquish pushed me to reading things on suffering. In the book “A Grief observed” by C.S. Lewis I found a passage similar to what I think you are saying. He wrote regarding his deceased wife, Joy. These few sentences tell about his own grief and moving on. “There was no sudden, striking, and emotional transition. Like the warming of a room or the coming of daylight. When you first notice them they have already been going on for sometime.”

I have expectations that one day the warmth will be completely across the room in my life regarding my daughter. I probably will be surprised as to how it got there.

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