I know exactly what you are thinking. You are crushed. And stunned. And alternately scared and angry.
With Fern’s diagnosis, you feel like your dream of having a little girl has been ruined. The words “Mother of a Child with Special Needs” feel heavy around your neck, and you wonder if you’ll ever feel like yourself again. Will you still laugh easily and loud and often, as you are known to do? Will your friends still think of you as a strong and capable mother? Will your husband still find you sexy? Will you still believe all things are possible? Will you ever truly be happy again?
And you worry about Fern. You don’t want to admit it, but you are wondering whether Fern might grow up to be ugly, or slow, or somehow lack personality. You tell yourself it’s crazy to think such thoughts at a time like this, that it shouldn’t matter, that you should be able to rise above such trite concerns and focus on getting her out of the NICU. And yet, a hundred times a day you wonder, “Am I ever going to look at Fern and think she is beautiful the way I look at my boys and think they are beautiful?”
What you’re really asking is, “Will I be able to love Fern?”
I know you are thinking these things because I am you. It’s only been 20 months since the day Fern was born and I knew, just by looking at her, that she was not at all what I was expecting. I was sickened by the news, absolutely certain that my life had taken a turn for the worse. I know that in a few minutes it will take everything you have to show up at Fern’s bedside and claim her as your own. I remember making a promise to myself to “fake it ‘til I make it,” hiding my fear and shame from Fern and giving her only the best in my heart as she fought her way out of the NICU. I’m writing to assure you that you’re doing fine. Just keep going, keep showing up for Fern.
Not yet two years have passed, and so, so much has happened. All I can say is prepare to be amazed.
You are about to find out just how much your friends and family love you. And you are going to be surprised by how much the community loves and accepts Fern for exactly who she is. When you get home from the hospital, you are going to have a steady stream of visitors. Over 100 people are going to bring you food, diapers, gifts and good conversation. Even more will call, or email, or write to you on Facebook with messages of love and encouragement. You are going to fully appreciate what it means to be overwhelmed with gratitude.
Over the next several months, you are going to learn so much about who you want to be in the world, and you will gain a sense of purpose you never imagined would be yours. It’s hard to explain to someone who is grieving as deeply as you are, but one day you are going to realize that almost nothing upsets you anymore. You will suddenly realize that, outside of loving the people you are lucky enough to have in your life, including Fern, very little truly matters.
Life is going to be so much more amazing than you can imagine. Your eyes are too puffy with tears to see this now, but I promise you that you will be happy again. In fact, before you even check out of the hospital you will surprise yourself by whistling a little tune while you walk. Really, you are a very resilient person. I know that is hardly a comfort in the early days, and you resent it when people say, “If anyone can do it, you can.” It’s a stupid thing to say. But it is also true. You are the perfect mother for Fern, and she thrives as a result.
Soon, very soon, you are going to look at Fern and think, “My God, this child is gorgeous.” Not a day goes by that I don’t stop and wonder at the beauty and wit of our baby girl. She is funny, and engaging, and very pretty. I’ll stop short of saying she’s an angel or a gift from heaven. I mean, she’s almost two after all and she’s quite the spit-fire. But her passion is just one more thing you are going to love about her.
And loving Fern will come easily. I don’t remember when you stopped faking it, but there’s absolutely nothing dishonest about your feelings for Fern now. You. Are. In. Love.
Listen, I’d love to know what my future self would say to me. I still grieve for the little girl I feel I lost almost two years ago. I’m still frustrated and disappointed that Fern has Down syndrome. And I still find myself wondering what it would be like to have a “normal” daughter. I don’t know how long these feelings will last, or if they will ever go away. But I promise you that these are not the feelings that get most of my energy. Life, as they say, is good. I am happy. YOU are happy. Fern is a wonderful, loving daughter and being her mother is one of the most fulfilling things about your life. You only have to give it a little time.
With all the compassion of 20/20 hindsight,
Your Future Self