Dear 28 year-old Me,
It's me, You in 5 years. I recently got to thinking about the past five years and what advice I would give you. So I thought I would sit down and write it all out. The things I want you to know. The things you should do different than I did. Maybe it will help someone, somehow know that the future is going to be okay.
You are now pregnant. After years of trying, miscarriage, infertility, IVF and doctors you are pregnant with twins. Soon you will meet a doctor who will give you the worst news of your life. He's going to tell you there is something wrong with your daughter and he's going to tell you it doesn't look good. He's going to go on to talk and you will hear little more than snippets as the world starts collapsing in on you. Later you will wish that the word salad of 'aqueductal stenosis', 'ventriculomegaly', 'hydrocephalus', 'cerebral malformation' were more than meaningless jumble. You will wish you could have paid attention in those moments of pure hell. Here's what I want you to do... take a deep breath. Tell the doctor to slow down and give you a minute. Most importantly don't panic. Know that your future will be tough (as will your daughters) but it won't be as grim as the picture they paint.
She will be born and you will be lulled into a false sense of security. Things will seem fine.
You will soon feel blindsided when your little girl can't hold up her head or roll over. You will spend days wondering, worrying, panicking about what the future holds. Instead of panicking start asking questions RIGHT AWAY. Don't let the docs settle for an unknown brain malformation. PUSH HARD. Find Dr. B sooner. Don't let it go until she is almost two before you get good answers.
And even after they give you the big diagnosis; the mouthful that scares the hell out of you... RHOMBENCEPHALOSYNAPSIS... don't let yourself panic. When they tell you that little is known and her prognosis is unknown trust your gut. You will know that your little girl is going to be okay. Don't let that little voice in that asks "will she be normal". Ignore the voice. Tell it to shut up. Tell it that you know a hell of a lot more than it does. You are the Mom.
In that same vain don't let the doctors act like they are the experts. At first they will all act like they know more about RS than you. It takes you a long while to realize that most of them have never heard of it, have never seen it and never will again. YOU ARE THE EXPERT. You must educate THEM. Don't feel shy about giving them that education.
Life is not going to be easy. Your little girl is going to spend the first few years of her life in therapy, at doctors offices, in surgery, having tests and working her butt off to do "normal" things. You are going to be right alongside her toughing it out. Just know that for every single second you put into her you will get that all back double in the future. You will look back and know that you did every single thing you could possibly do for her. Don't second guess yourself when you splurge for therapy equipment or bring her to another doctor that your family questions is necessary. YOU KNOW BEST!
I think the most important thing I should tell you is to enjoy her. Before long those days where you worried about mechanical (and fixable) things like crawling and walking will turn into worries like will she fit in at school, will she make friends, will she hate the fact that she is "different". These things are not in your control. And I am guessing that 39 year old me will probably write the 34 year old me a letter at some point telling me not to worry about those things. Soon it will be driving and dating!
She's going to be okay. You're little girl is going to amazing and inspire you. When people ask if you believe in miracles you will smile and say yes with no hesitation. She is something very, very special. Don't miss one moment of that journey!
Posted by Kristen Fescoe