Joy

Joy
by Christy McDonald

A year or so before I became pregnant with Bailey, our family was having {what seemed at the time} to be a never-ending string of bad things happening in our little world. The details aren’t important, other than it just seemed like there was one thing after another that made me wonder if we were ever going to experience happy times again. I was working for a woman who was a life coach and during team meetings she would ask us frequently to share one word that represented what we wanted in life. Joy. My word for months was joy. I just wanted to have more of a reason to smile, more of a reason to laugh, to not take life so seriously. It was just one of those times when what we needed was some good, old-fashioned joy.

Things settled down a bit, and circumstances improved here and there. I forgot about how deeply we had needed that extra joy in our lives.

Several months later, I was 18 weeks pregnant and we went to the perinatologist’s office for our 18 week ultrasound. While the 18-20 week ultrasound is useful for many reason, the only one that we ever thought would be applicable to us was to find out the gender of our baby. We went in to the appointment excited to find out whether we were having a boy or girl, and came out shell shocked, knowing we were having a baby girl, she had a life-threatening heart defect that would require open heart surgery when she was still a little baby, and more likely than not, had Down syndrome. To say that we had never contemplated that our child would be anything but perfectly healthy and or would have special needs is the understatement of the century.

We found out a week later that yes, our daughter did have Down syndrome. The rest of the pregnancy continued with frequent visits with the perinatologist as we had officially been moved to the rank of “high risk pregnancy”. We had visits with the pediatric cardiologist, pediatricians, etc, all in anticipation of Bailey’s birth. During the last few months of my pregnancy I remember thinking that our lives were about to be awful. I didn’t know anyone with Ds personally, and was thinking only of outdated, untrue stereotypes. I (now very regretfully) that any joy we had regained in our lives was gone for good.

When Bailey was born, we fell in love with the gorgeous little fighter of a girl that had just joined our family. She was the cutest, squishiest, sweetest little thing ever. Before she was born, we had decided to name her Bailey Joy, the middle name of Joy coming from our niece named Joy who had passed away a few years before.

Bailey spent a couple of weeks in the NICU before coming home. One of my favorite pictures of Bailey is this one – she was just a few days old and still in the NICU. And was already grinning this huge, infectious grin. That should have given me some indication of what was to come.
Bailey newborn
Eventually, Bailey came home from the NICU and we spent five months preparing her for open-heart surgery. Our job was to keep her away from viruses and help her to gain weight so that she would be big enough for the surgery. We fought for every calorie that entered her little body but finally, when she was 5 months old, it was time.
The morning of her surgery, she of course had no idea what was happening. We fought back tears as we waited for them to tell us it was time to hand our little baby over to the surgeons. Bailey’s infectious smile made the morning more bearable.
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She came through the surgery with flying colors, and thankfully now has a healthy heart.

After getting through the surgery and her recovery, life finally settled down and we were finally, finally, able to live a normal life without worry of calories and viruses and heart failure. We started plugging along and months went by.

One day as I was giggling yet again at a famous big Bailey smile I had a startling revelation that had not once occurred to me in all of the months that had passed since I was pregnant with her. Those years earlier when I was praying and hoping for more joy in our lives? We were given more joy – pure joy – to be exact, in one little bundle of smiley girl named Bailey Joy. When she smiles (which is often!), she smiles with her entire soul. People stop and comment on her smile – how her smiling at them was the best part of their day. That her grin lights up the room. That she was named so appropriately for her personality. That JOY describes her completely.

Bailey just turned three and is still turning heads with that big ‘ole grin of hers. She is just like any other toddler in that she throws tantrums (and her food, sippy cup, and anything else she can find), steals toys from other kids, and tells me “no!” when she doesn’t want to do something. And she is the answer to our prayers – perhaps the most unexpected answer to prayer we’ve ever had. We didn’t know years ago when we needed more joy in our lives that it would come in the form of a little girl with Down syndrome who would change our hearts and minds in the best way imaginable.
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When I was still pregnant with Bailey I spoke to a woman who has a son with Ds. She told me that she wished everyone could experience the joy of raising a child with Ds – that she almost felt sorry for those who didn’t get the opportunity to do so. Honestly, I was floored at her statement – I wondered how anyone could feel that way. But she was right. The joy that comes from raising a child with special needs is 100 fold what you give as a parent. We are truly blessed.

*******************

Christy McDonald, her husband, and three children live in Austin. They have a son, Taylor (7), daughter Abby (3), and Bailey (3). Abby, who also has Down syndrome, was adopted from Eastern Europe in January, 2013.
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For more information about Down Syndrome please visit the National Down Syndrome Society.

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