If We Had to Go Through It All Again, I Would Choose Her Every Time

Four years ago, I sat in the hospital holding my 2-year-old baby girl, adopted just six months earlier from Ethiopia, when I heard the word “Leukodystrophy.” I’d never heard that word and was told not to Google it. But I knew by the doctor’s tone, it was very, very bad. If I could take myself back to that day, this is what I would tell myself.

You will cry every day. You will cry more than you ever knew possible. You will cry when you’re asleep, you will cry when you’re eating, you will cry. But then you won’t. You won’t cry every day. You will be surprised when you don’t. And you will smile. And eventually you will smile more than you cry.

No one will formally give you the diagnosis. You will have to request the hospital records to learn the official diagnosis. It’s too terrible. The doctors and nurses have grown to love you and your girl. No one wants to be the one give you the diagnosis.

You will be surrounded with people who love you. At first. Then they will leave. Your best friends you consider your family. Your church. The ones who should always be there. They won’t be. You will tell them you need them. You are losing your baby. You shouldn’t have to lose your friends. They will say they are sorry. They are busy. They love you and pray for you. They promise to do better. They don’t. You will give them specific ways they can help you if they choose. Maybe they just don’t know how to help. You will forgive and move on, because holding on is only hurting you. There is still pain, but there is freedom in forgiveness.

People you don’t know very well and people you haven’t seen in years will show up in big ways. They will amaze you. You will make new friends because of this disease, and won’t be able to imagine your life without them.

She will outlive her life expectancy. You will have to work. She will continue in school because they love her. Your friends at work and at her school will take care of both of you. They will make sure your freezer is stocked so you have something to eat when you’re too tired to prepare it. They will learn to take care of her so you can work. They will come watch her so you can run or go to the store. They will bring you meals and money for meals while you are in the hospital. You will be surprised at their kindness.

You will have to fight for everything. Even her food. You will be exhausted because she will not sleep. And it won’t be the kind of exhausted that comes with having a newborn baby in the house, though well-meaning people will compare it to that. The closest thing I can compare it to is to being in the PICU every single day and night.

She will get too sick for school. Your friends in other states whose kids have this disease will tell you get a nurse to help you take care of her at home. Your doctor will tell you she is doing amazingly well. You are a wonderful mother. You are a wonderful advocate. You are taking care of her while working full time and aren’t sleeping. You need help. You have to move so you can both get help. You will sell your cute little house and you will move. It will be impossibly hard to start over. But it will be good. She will have good nurses every day and night. She will have good doctors. They will love you and trust you as much as her first doctors did. You will sleep. You will work. You will make friends. You will feel somewhat normal for the first time since diagnosis.

Your life will be so very different than you had planned. But that little girl, the one you are holding, the one who has been so attached to you since the first day she met you, she will be a joy. She will be comfortable. She will be happy. Her smile will continue to light up your life, and the lives of others. You will love her more than you ever thought possible. And you will know that if you had the chance to go back and do it all over, you would choose her again and again.

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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