By Nancy

A letter to a younger me, pregnant with my first child…

Dear Nancy,

It’s been a rough weekend. I know you’re exhausted, terrified, emotionally spent. You feel like the ‘not knowing’ is going to kill you. The weight of it seems so heavy. But you will have an answer soon. Tomorrow you will get a phone call that will change your life forever. And the ‘not knowing’ will be replaced by new fears that will seem even heavier.

But that’s why I’m writing to you. Because even though the news you receive tomorrow will be devastating, it will turn out to be the best thing that ever happened to you. You will have dark days, when you don’t want to get out of bed and you can’t stop crying. You’re going to refer to them as your “no mascara days” – because even when you’re at your lowest, you still try to find some humor. That’s going to go a long way in the days to come.

Those feelings you had the past few months, that something was wrong with your baby, are going to be confirmed. But a diagnosis of Down syndrome is going to be quickly overshadowed by your daughter’s heart defect. Yes, your suspicions were right about that, too. You’re having a girl. And you name her Lily because that seems like the perfect name for the sweet, beautiful baby you are carrying.

And she will be exactly that. A sweet, beautiful baby. Doctors will warn you that she will arrive early, tiny and blue. They will tell you that you won’t be able to hold her, that she’ll most likely be rushed to another hospital for emergency surgery. It won’t be the first time that doctors are wrong about Lily. She’s going to come into this world just two days before her due date. And weighing 8 pounds, 8 ounces, she will actually be the biggest of your three babies. (Yes, that’s right, you are going to have two more children. And all three are perfect.)
Being a mother is going to be more amazing than you ever imagined. You are going to feel more love and more joy than ever before. You will also feel more exhaustion, more fear, more helplessness… combined with more determination, more loyalty, and more responsibility than you ever thought possible.

As you begin to learn how to be a mother, you will also learn how to be an advocate. Trust your instincts for both. When you think she’s not feeling well and something seems off, don’t be deterred by the lack of a fever or other symptoms. Even though you’ve only known each other a short time, you are the expert on Lily. You will always be the expert on Lily. Don’t be afraid to tell a doctor that you want more tests. Don’t keep quiet when the lab technician sticks her over and over again trying to get blood. When you know something isn’t right, follow your gut. You are rarely wrong when it comes to your baby.

Once Lily’s heart is fixed (and she proves more doctors wrong by coming home just 4 days after the surgery), you’re going to enter the world of Down syndrome. You’re going to do a great job learning about all of the therapies she’ll need and finding the best therapists. You’re going to soak up as much information as possible, attending workshops and conferences, joining support groups, and reading lots and lots of books. Don’t ever stop doing that. You can never learn too much, and the more you know about Down syndrome, the more you’ll know about how to help Lily. But take a break sometimes, and don’t beat yourself up about it. Put down the books on Down syndrome and pick up that novel you’ve been wanting to read. Take a vacation with your husband. Remember that without him, you wouldn’t have your beautiful daughter. You both deserve some time together, so keep making the effort to remind each other that you are more than just Lily’s parents.

Most importantly, don’t be so hard on yourself. Don’t spend hours creating spreadsheets with homework assignments from the therapists, and then spend sleepless nights feeling guilty for not doing the homework. Get more sleep, and worry less. You will think that if Lily is anything less than ‘high-functioning,’ it will be your fault. Don’t. Lily has so much to prove, and it will be your job to help her, but her entire potential does not rest on your shoulders. Learn to accept help. The people who offer will do so because they love Lily, and they love you. Let them. This is not a quest you need to embark on alone. It is a journey that will include many. Some of the biggest supporters will surprise you, and some of the people you thought would always be there, won’t. Don’t hold it against them or try to figure out why. Just let them go and have faith that they are going to be replaced by some amazing people.

Lily is going to lead you to a whole new community who will become your guides, your mentors, and your friends. She is going to teach you the true meaning of perseverance and courage, and she is going to show you what unconditional love really looks like. At one point in the near future, you are going to tell a family member that you just want her to be able to know and convey love. That if nothing else, you want her to know that you are her mother and you love her, and you want her to love you back. I cannot express to you more resolutely that your wish will come true – and that she will remind you every single day how much she loves you.

Her love is going to get you through the tough times. Because there will be more of them. Just when you think that things are going well and you’re starting to forget about Down syndrome, it has a way of reminding you. But the surgeries will all turn out okay, and you’ll actually start to appreciate the time in the hospital with her as quality time the two of you get to spend together. She will be the most polite child many doctors and nurses have ever met, and it will make you beam with pride. You’ll relish in watching her dispel stereotypes as she reads in the waiting room (because she learns to read when she’s 2 – yes, 2!!), or thanks the nurse for starting an IV. And no matter how sick she may feel, or how many challenges she may face, she will always hug you and thank you for being there and tell you “I love you, Mommy.” Those four words will get you through anything.

But I know you. I know that no matter what I say, you’re still going to worry. You’re still going to bear the weight of Lily’s world on your shoulders. You’re still going to stay up at night thinking about what you didn’t do that day, and how to make up for it tomorrow. But at least remember this: You are going to be a good mother and Lily’s biggest fan. You are going to push her like no one else and hold her accountable for everything. You are going to see past the Down syndrome and treat your child as you would any other. And you are going to expect the same from everyone else too – her siblings, her cousins, her teachers, and her friends. Because of that, she is going to flourish. She is going to be the best thing that ever happened to you because she will make you want to be your very best self. Her determination, bravery and strength will inspire you every day. Her joy and compassion will be contagious, and her love for you will create so much light in your life that even the bad days won’t become dark.

You only have a few more months to wait. Trust me, once you see her beautiful face and she wraps her tiny hand around your finger, you won’t feel any sadness or grief. She’s going to be perfect. And you’re going to be happy.

Love,

Your future self – 12 years into this amazing journey