The beginning of our journey is coming to an end

As I sit here pondering what the future holds for my family, I find myself wanting to freeze time. I am scared. This has not been an easy road for me. I am hopeful but filled with doubt. I am accepting but anxious. I am excited but terrified. I need to remember exactly what I’m feeling today. For any day now, life as we know it will change. We will no longer be a family of three. We will grow by one. I will officially be a parent to a child with special needs. I have tried throughout this process to communicate my feelings so that I don’t keep them built up. If I didn’t have my husband and this blog I cannot imagine the emotional turmoil I’d have put myself through. I am so thankful to have these opportunities to express myself.

Now, the months have given way to days and the days have turned into hours – the waiting has begun. I have found myself reflecting on this journey that we started on five months ago. At times, it has been torturous – I won’t lie. Getting a prenatal diagnosis of Down syndrome for our unborn baby was a life altering event. We experienced emotions most people will never feel, and many can never imagine. I often prayed to God to wake me up from this nightmare. But today I have realized that what I once described as a nightmare is really becoming a dream.

We are lucky enough to meet our precious baby boy in roughly 88 hours (or less if these contractions don’t stop!). Our son. The baby we rejoiced and celebrated, then grieved and worried about – will look into our eyes, our hearts, and our souls and take our breath away. Many people do not get the opportunity to meet their babies after a prenatal diagnosis – sometimes by their choice, sometimes not. Meeting our baby will take the scariness out of this prenatal journey and leave us loving a baby – not worrying about his diagnosis.

Our baby was created out of love. God has seen fit to send us a child that will teach the world about love. I know that my story has already touched some people – many have told me so. I know it has certainly changed us. I can’t even begin to imagine what impact my son will have on our firstborn, our friends, our families, and complete strangers. I hope he’ll teach them what he’s already taught me. Tolerance, acceptance, non-judgement, and the power of true love. That is where this “nightmare” turned into a dream. I realized I still had dreams for my child. I had not given up on him – and I never will. I no longer grieve for what I had “lost” but now celebrate what I have gained!

I know the road we’ll travel will not always be easy – but most trips are not complete without a few detours. That’s the best part about journeys – going off route. Stopping for ice cream. Playing in the grass. Pulling over to pet a horse. The best moments are found in the unexpected. Maybe our life had gotten a little too expected. Maybe things were too easy. Maybe we had stopped going off path. Stopped appreciating all the little things that life has to offer. The miracle of our baby has changed all that. I want to appreciate every moment. I don’t want to take anything, or anyone, for granted. I want to embrace the challenges along with the triumphs. I want to live life. Thanks to this journey I have realized that.

There is a story that has often been recommended to me about being blessed with a child who has Down syndrome. It is a wonderful read that helped me change my perspective. I’d like to share that with you.


Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Although I don’t agree with every statement in this story (that the pain will never, ever, ever, ever go away) I am aware enough to understand she is speaking about her experience and that I am living mine. I was lucky enough to get the new “itinerary” for our life’s journey five months ago. I will board the plane knowing it’s going to Holland. I will not be surprised when we get there. Instead, I’ll take the time to stop and smell the tulips. 🌷🌷🌷🌷🌷🌷🌷🌷🌷🌷🌷🌷🌷🌷🌷🌷🌷