To the Scared Mom Facing an Apert Syndrome Diagnosis
Dear Beth,
When you go to the doctor today, you’re going to get a sucker punch. I’m sorry. It’s going to hurt. Even without the pregnancy hormones, this one will be a low blow. There’s nothing I can say to prepare you for the cruelty of that doctor and his nasty delivery. Listen to me.
When he says, “You do not want to carry this pregnancy to term,” he’s not being deliberately cruel. He just doesn’t have a clue. He doesn’t know that you already fell in love with your daughter. He doesn’t get it. And he might not ever. Don’t waste one iota of energy being angry. Just move on. He’s the first in a long line of people who cannot see your daughter and only see a diagnosis or a prognosis. Believe me, the cliché is true: it’s his loss. It must be a sad and lonely, filtered and false world.
Hang on tight to your mom’s hand. Know without a shadow of a doubt that your doctor is an exception. You will meet a lot of doctors and most of them are incredibly kind, brilliant, wonderful people. Many will fall in love with your sweet girl. She’s a charmer. There are a lot of people with a lot of beliefs, but almost all of them would be horrified to hear how this man spoke to you. Please, don’t let that sucker punch form any festering opinions.
You’re about to step into an unfamiliar world. Honestly, I don’t want to tell you too much. You will survive those early weeks when your baby is born. You will not have time to process some of the things that will come your way, and in a way, that will make it easier. You will just face them. Don’t dwell on that; you can do it.
Own your confidence. Sometimes that will mean wearing a little makeup even though you’re in the ICU and you know no one will care. Sometimes it will mean arguing with the surgeon in your sleep clothes before you’ve even brushed your teeth. Own it. Whether you’re in the hospital worrying or at the mall conscious of staring, hold your head high and smile. Be proud.
Don’t be a martyr. You can focus on all the wrong things and spend your life miserable, or you can choose to seek joy. This is true for everyone, but it’s going to be more of a temptation for you than it used to be. People all around you — good people who love you — will say they’re sorry a lot. Especially at the beginning, you’re going to hear a lot of pity. It’s well-meant, so don’t get upset. But don’t let their perception of your difficulties define your perception of your life. Pick your head up and show them why they should envy, not pity you. There is a lot of joy. Find it and celebrate it.
You will throw parties. Home from the hospital parties, birthday parties, no one was sick this week parties and tea parties.
Laugh a lot. Live the life you want your children to see. Be active. Be a force. Love. Laugh. When people tell you not to laugh in the NICU or the PICU, tell them this: It’s there, more than anywhere else, you need to laugh. When people see a smile, they often smile. Decide right now that you’d like to be surrounded by smiling faces. You don’t know what people are going through. If they don’t smile back, say a prayer for them. It’s OK to laugh about what your nurse did last night or your favorite college memories, even when your sweetheart is ill. Do you think she — sedated, intubated and scared — would rather hear hushed whispers or laughter coming from Mom? Hold her hand. Kiss her. Love her. And laugh. A lot.
Shake off the guilt. You will feel guilty for laughing. Don’t. You will feel guilty for crying. Don’t. You will even feel guilty for celebrating the birth of your next child. Shake it off. You are allowed to celebrate. You are allowed to have feelings. And in spite of all I said in the last paragraph, you are allowed to cry or be angry. Don’t immerse yourself in those feelings, but honey, they are real and normal. Feel and express. Find an outlet.
Don’t hide your faith. You don’t have to get on a soapbox, but honestly. This is who you are. You will lean on God. You will hurt. You will question. You will see miracles. God is listening and answering. He is also speaking and calling, so you need to listen and answer too. And it’s OK to get mad at Him. He can take it. Keep listening.
You will have an on-again off-again relationship with special needs networks. Sometimes they’re a judgment-free haven where you can ask questions and vent and talk to people who get it. Sometimes they’re depressing. Remember that the world is full of all kinds of people. Just because you share a diagnosis doesn’t mean you share anything else. And that’s OK. Take what they offer and don’t feel like you have to be all in or all out. Sometimes it will be just what you need. Sometimes you will need distance. That’s OK, too.
You’ll lose some friends. That is going to hurt. But you’ll make friends too. And you have a strong, supportive family. Be prepared to be amazed by how strong and how supportive.
And here is the biggie: fall in love with you husband. Again and again and again. You will go through this together. Statistics on marriages with medically complicated kids are bad. Scary bad. And you need this man. When you need him the most, you will be separate because one of you will be camping out in a hospital chair. Get on the phone and tell him exactly how much you miss him. It will be both harder and more important to go on dates. Hug him and hold him and do what you can. Go on dates, if you can. Stay up too late sometimes. You will think it is irresponsible because you are already sleep deprived. I promise, neglecting that relationship is more irresponsible. You think you love him now, and you are right. But that love is only a seed. Tend it and watch it grow.
Craft store gospel truth: Live. Laugh. Love.
Good luck. Pray for me.
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Beth is a Catholic mother of three. Her second daughter was diagnosed prenatally with a genetic syndrome called Apert. In the first year of her life, she spent more time in the hospital than at home. She has had several surgeries, beginning with an emergent neurosurgery when she was a week old.
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