Dear Elaine,

One year ago- August 18, 2016

I see you standing in the hall outside of the NICU, head in hands and tears dripping down your face. Yesterday you received Coral’s diagnosis of Dup15q. She is 3 weeks old. Standing next to you, Dad says, “I wish I could take you to one year from now, so you could see where you would be.   I just wish you could see.”

You don’t believe him. You are so mad, so sad, and so very afraid of what the future holds.  All you know about Dup15q is what you have read on various websites. Your mind is drawn only to the disabilities. You wonder: Will Coral walk? Talk? Be profoundly intellectually disabled?

You are devastated.

As much as you love Coral, all you can see right now is how she is not the baby girl you thought she was going to be. And it hurts deeply to feel this way- to be so confused and so lost.

Sitting here 1 year later, I am here to let you know that Dad was right. These days there is a lot of joy, love, and laughter in your life.

If I could go back to you that day, I would want you to know a few things.

As you imagined, this path is hard. It is challenging and exhausting in a way that is distinct from parenting a typical child. But it is equally rewarding to watch Coral develop and grow according to her timeline. You no longer feel the invisible parental pressure to make sure certain milestones are reached at specific times- for Tate or Coral. Letting go of expectations has made you a more flexible person. You realize that trying to force a milestone is futile. Forward progress is what matters. Patience is the key.

You would not believe how much Coral has accomplished! At 12 months old, you watch her with amazement as she crawls on the carpet to some of her favorite toys and over to the couch to pull herself up to standing. She can feed herself pieces of crackers and puffs, and a few weeks ago she started to use her pincer grasp (sometimes)! A couple of weeks ago you said “hi” to her from across the room, like you have done many times before. This time she turned in Mimi’s arms, looked at you, smiled, and excitedly reached her arms out towards you. An incredible experience. You enjoy beautiful moments when Coral looks deep into your eyes and times when she laughs at your silliness- big, snorting laughter.

Coral and Tate’s relationship will not be what you imagined. This is painful to realize. However, what you can’t see right now is the very special relationship they will begin to form. Coral watches Tate closely, turns to the sound of his voice, and has laughed at him, too. Just the other day, Tate asked you to put Coral in his bed with him. He proceeded to cuddle up with her. (He also poked her and licked her face.)

You will worry- A LOT- about potential medical issues, of which the list is very long and includes difficult to control seizures. When Coral is 8.5 months old, you will practically collapse under the fear, anxiety, and grief that accompany the recognition of her first infantile spasms (a type of seizure). Through research you will feel empowered to take a less conventional treatment approach, and Coral will be blessed with (currently) a dramatic decrease in seizures. The onset of seizures will alter your perspective of worry. There are parts of Coral that are 100% out of your control; all you can do is breathe and make difficult decisions when they arise. A little bit of worry can be useful, but beyond that worry will not change anything except take all of the joy out of life. Now you are mindful of and enjoy each day that is free from clusters of seizures or any medical issues. Whether the reprieve lasts 1 day or 1 year, you are so very grateful for this time when Coral can develop.

Surprisingly, you will stop worrying about certain things, like what Coral will be doing 20 years from now (a thought that elicits tremendous anxiety right now). This dramatic change is a result of pointed advice from a fellow mom of a child with Dup15q- “The future will take care of itself”- and a new perspective on disability. Words like nonverbal, autistic spectrum disorder, epilepsy, and non-ambulatory have lost a lot of their power over you. Disability does not scare you, like it currently does.  You feel more comfortable with letting Coral tell her story.

I wish I could tell you that you will grieve now and then be able to move on. However, sadness will return to greet you at various times. In some circumstances you expect it, like on certain occasions when you see a “typical” baby smiling and interacting with her parents or when you see siblings playing as you had imagined Tate and Coral would; this can hurt in a way that few understand. Other times, the sadness catches you off guard. You may be at the playground or a birthday party, and it rushes in. The feeling can be so intense that you lose your breath for a second over the harsh reminder of the loss of a Coral you had once imagined. BUT the feeling will not last as long as it used to. You will learn to acknowledge the sadness in that moment, to feel it (every part of the discomfort), and then to move through it- giving thanks for everything you have in your life and releasing love (instead of anger or sadness) back to the Universe. Through each one of these cycles, you will feel yourself becoming stronger, more empathetic, and more loving.

Finally, I want you to know that there will be a moment when you find yourself thinking, “If the typical Coral we imagined in pregnancy were here now, our Coral wouldn’t be here.” And your heart will ache, not for the loss of the Coral you had dreamed of, but for the hypothetical loss of the Coral you have fallen so deeply in love with. Your Coral of Ocean. 

It’s too early for you to see all this. Right now, all you feel is grief and your future is painted in fear. But when you start to feel a bit lighter, embrace it. Let go of what you can. Have faith in this unexpected path. There is often hidden beauty in the unexpected.

This is not easy.  At all.  But there are lots of people supporting you on this path; they are ready to catch you on the difficult days and light a candle for you on the dark days. Some of these people are moms sharing a similar path, an inspirational group of women who you will begin to get to know.

In the coming years, I have no doubt that there will be more difficult days, including long periods of intense challenge. Have faith that even in the darkest hours God will see you through.

The experiences gained on this path will leave you to adopt new perspectives over the years. While I cannot tell you what those perspectives will be in 5, 10, or 20 years, I can say that right now, 1 year later, you are a more grounded, a more humble, and a more grateful person with a stronger faith.

Remember to love Tom, always.

And never, ever forget to love and take care of yourself.

With love,

Lainey

Photo credit to Rick Guidotti of Positive Exposure (for the cover image and close-up picture of Coral embedded in the text).