LET IT GO AND GROW
by Farah Lyner
When I was young, I dreamt of what my life would be like as an adult. I would be married with a nice house, plenty of money, a satisfying career and two beautiful children. A boy and a girl, preferrably.
Twenty+ years later, it's all here. I have it all. But I didn't expect to fall in love with an expat who would take me to England for nearly 10 years. I didn't expect my "nice house" to be rental with an alley for a backyard. I didn't expect my "satisfying career" to be motherhood. I didn't expect to have my first baby abroad, away from my family. I didn't expect to struggle with infertility and end up with a 5.5 year age gap between my two kids. And I most definitely did not expect my daugther to have Down syndrome.
One may look at the end result and wonder why I would ever feel discontent. But I was a true head-in-the-clouds dreamer. I called it "planning" but I was so preoccupied with the future, that I was very rarely satisfied with the present.
Over the past 20 years I spent a lot of time and mental energy worried that we weren't doing it "right" or that things weren't going according to my grand plan. I became stressed and down on myself thinking I wasn't ambitious enough or that we weren't ahead of the game. I used to feel that being satisfied with what you had was just "settling." It was a cop out. It was giving up on dreams.
My daughter Francesca completely changed my perspective.
Her birth was the culmination of all the planning. I had overcome the international moves and the infertility, we were back in New York, we had just rented a little house near the city and I was about to have the baby I had dreamed would complete our family.
When they announced "It's a girl!" my heart nearly burst! It was more than I dared to hope for to have a little girl! And then they handed her to me and my world crashed down around me. I looked into her eyes and I knew.
I started to say "Does she...?" but then I stopped myself, not wanting anything to ruin my most perfect moment. Not wanting it to be true. But I knew my baby had Down syndrome from the moment I looked at her.
The next few weeks were an excruciating exercise in letting go; letting my hopes and dreams slip away one by one.
At first her diagnosis was just suspected, and I held on to the hope that the doctor's suspicions were unfounded. But when her test results were confirmed, I had to accept it. I felt like I finally had everything I wanted with one huge caveat. There would be no manis & pedis, no mother-daughter matinees at the ballet, no shopping trips for prom dresses or wedding gowns. There would be no defiant, sassy little girl who would one day grow into a strong, successful, independent woman. And what would it mean for our family? How would Down syndrome affect my son? My marriage? My career?
I told myself I needed to get over it and grieved for the loss of the daughter I had always wanted.
As the acceptance of our new reality began to set in, that old urge to plan it all out returned. We were thrown a curve ball, but I would get us back on track. I entered research mode and began to learn everything I could about Down syndrome in order to see what our future would look like. But it was useless.
There were so many variables. I thought to myself, well, she's completely healthy so that has to mean she'll grow up to go to school, live independently and have a great job. But, I found that wasn't a predictor of anything - I encountered kids and adults of all levels of functionality regardless of their health status. I struggled to find other indications of what our life would be like.
Finally one evening I was researching college programs for kids with special needs. "She could go here!" I excitedly told my husband. "Are you worried about where Tristan is going to go to college?" he asked reproachfully. "Well, no," I admitted. "Then why are you making yourself crazy worrying about Frankie?" he said.
Something clicked then. I realized I couldn't possibly know what her life was going to look like and that that wasn't necessarily a bad thing. Because the future was beyond our sights, I had no option but to focus on the present, to take each day as it came.
With this epiphany came the realization that this could be applied to my son's life as well. Actually, to all our lives. Every single aspect. As a result, I have become more content with life in general. We still have goals, but they are more immediate and more attainable and the future seems less daunting, smaller, quieter. I am more thankful for what we do have and have achieved instead of worrying about all we don't have or haven't done.
The birth of my daughter has been a huge lesson in letting go of what I thought life would and should look like. I have learned to not only accept it for what it is, but to enjoy it as well. I realize that spending all of your time and energy planning out a perfect life is like organizing the most amazing party that you don't actually get to attend.
I am so glad I figured it all out in time, because what a party it has turned out to be!
Frankie is 3 now and has grown into that sassy, defiant little girl I grieved for the loss of. Her temper is fierce but her laughter is musical. She is quick and strong and smart in ways that I never expected. I have learned that that old saying that all children have their own strengths and weaknesses, means ALL children. There are many things that she does better than her brother did at her age or that her typcially developing peers do now.
Yet, somehow, despite all of this that we have going on, life is completely, utterly, boringly, beautifully...normal. There are days we are consumed by Down syndrome, but more often we don't even think about it. This is what we mean when we say "more alike than different." The diagnosis is SO much scarier than the reality. It has been an incredible learning curve but I can honestly say that today I feel every ounce of that same excitement that I felt before I knew she had Down syndrome. I am proud of her every day and I cannot wait to see what she does next.
Her future is bright and the possibilities are endless - and for the first time in my life, I am very much looking forward to whatever surprises this future will bring.
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Farah Lyner is a mother and writer living in Queens, New York. She’s a former Communications Manager, and you will often find her blogging over at Eyes Like Sapphires. Farah shares stories that inspire and empower others through her personal journey navigating life while raising a daughter with Down syndrome and a son who is totally devoted to his younger sister.