Tuesday, March 20, 2018

If it Had Been Up to Me...

If it had been up to me.....

We would have started expanding our family much sooner than we did. I was the one who kept bringing up the topic of children. Jason certainly wanted them, but while I could only think of cuddles and cute onesies, he was thinking of how we would manage a growing family. The poor guy. Each time a friend announced a new pregnancy, the discussion about children would start up again. I remember a very specific time when I burst into tears after hearing about another friend's impending addition. Eventually, after 6 years of marriage, I convinced him.

If it had been up to me, we would have missed out on Abby.

If it had been up to me....

We would have had a typical birth story. There would have been no need for a frantic trip, 6 weeks too soon, to the hospital.... in the middle of the night.....through a snow storm. There would have been no need for an emergency c-section. There would have been no need for Abby to be flown by helicopter to a bigger hospital, while I stayed behind. It wouldn't have been two days before I could see my daughter, or six days before I could hold her.

If it had been up to me....

It wouldn't have become normal to leave our newborn each night in the NICU, while we stayed with family. We wouldn't have had to make due with "Abby Upates" by phone when we were missing our little one. It wouldn't have been a month before we could bring her home.

If it had been up to me, I wouldn't have seen so early that my daughter has the heart of a lioness.

If it had been up to me....

I wouldn't have had a child with a heart defect.....or diabetes......or Down syndrome. Abby wouldn't have had to have so many doctor's appointments in her young life. She wouldn't have learned that those trying to help her, sometimes hurt her in the process. Abby wouldn't have had enough shots and finger pokes to make the bravest of people shudder. Abby wouldn't have to work harder to learn what might come easily to others. Abby wouldn't have learned early on that she lives a world where others, even whole countries, think her life wasn't worth living simply because she has one extra chromosome.

If it had been up to me, I would never have known the incomprehensible joy that Abby brings to this world. 

You cannot imagine how very thankful I am that none of this had been left up to me, because I cannot envision a world without Abby in it.

Tomorrow is World Down Syndrome Day.

Tomorrow I encourage you to fill your day with joy - in honor of Abby. Wear your mismatched socks, and when someone asks you why, use that as an opportunity to tell them your favorite Abby story. Tell them how fierce and funny she is. Tell them how she dances and sings through life.  Tell them that she is so very brave. Tell them that she has a smile that lights up a room and a laugh that tickles your ears.

Tell them that we need more Abbys in this world, because now, if it were up to me, everyone would be able to experience the joy and warmth of Abby's light.

Happy World Down Syndrome Day 2018!!

Thursday, March 1, 2018

A New Frontier

When I first held Abby, nearly a week after she'd been born, I could hardly see past the next few hours, let alone envision what our lives would look like down the road. Hormones, middle school, the teen years, high school?....Those seemed miles and miles down a road we'd just begun.

Our focus became getting her to breathe on her own. Step. Next came the task of building her endurance to drink three ounces without falling asleep. Step. A wireless baby? Yes, I'll take it! Step. Finally, she weighed over 5 pounds, which meant we could take her home. Step.

There have been so many baby steps along this road, that I've failed to see how very far we've come. I feel as though at some point Abby, started running, and I have yet to catch up. And so here I sit, wondering how it is even possible for that tiny baby I held so long ago to be a teenager.

Today Abby turned 13.

We've traveled those miles and miles and now the things I didn't need to concern myself with "way back when" are right before us. In so many ways I feel just like that new mother sitting beside her daughter's hospital bed. I have the same questions I had back then. How will we know what is best for her? How will we prepare her for the challenges she will face? How will we protect her from cruelty? How will we help her come into her own?

It would be easy for me to get discouraged by this feeling of being back where we started if it weren't for one important difference. You see, I have something that 2005 Elizabeth didn't have. I have a 13 year history with Abby.

One of the best pieces of advice that we'd ever received was from a physician in the NICU where Abby was taken after she was born. After we'd peppered him with question after question about what the plan was for our daughter, he quietly said, "Abby will let us know what to do next." I remember thinking that was ridiculous. We were at a world renowned hospital. They should have a plan. But I watched, and sure enough, Abby led them. They knew just how to listen and she let them know exactly what she needed.

Abby has never wavered on that. If she needs (or wants) something, she will let you know.  Along with that, Abby has a radiant joy that impacts those she come across. She has a stubbornness that won't quit, but a spirit of empathy that reaches out to those around her.

So, as we head into this new frontier, as we step onto the pavement of "the teen years", I will remind myself to listen better to her, because even though I may not know all the answers to the questions that are flooding my brain, I do know Abby. And, if I look back I can clearly see that any road traveled with Abby is bound to be filled with joy.