Dear Parental Units,
It seems that I’m the recipient of an opening in the space-time continuum, and being as I’m a very brainy baby, I’m going to take advantage of it. I don’t know how long I’ll have to say all of this, so here goes something!
I just popped out and I know you are so glad that the pregnancy is over, that you are through labor and delivery, and that I have ten fingers and ten toes. My head looks normal and I’m breathing and crying. All is well (for now). Enjoy the next six weeks because after that, you all are going to enter a world that you don’t know you are unprepared for. Good luck—we’re all going to need it.
Six weeks from now, Mom, you are going to decide to take me to the pediatrician because my eyes don’t look right. I’m not tracking stuff, and you and Daddy are concerned. On that day, you are going to get a bucket of news you are not ready for. I’d have liked for both of you to go instead of just Mom. You see, if you both hear the news together it will be better that way. So many times mommies have to hear difficult news without daddies being present, and that isn’t right. I can tell you that getting your kid diagnosed with disabilities is bad enough, but often it is the mother who hears it first, on her own. Even though the woman (yes, in 1959 you won the doctor jackpot and got a woman) is going to spend time with you, remind you that this is not your doing, that you had a very mild case of rubella and nature happens, and she’s going to try to help you deal with it all in one day, I’ll tell you now that her good intentions won’t do the trick. Don’t feel bad. Doctors still don’t get it, and in time I’ll come to have friends who are doctors and they’ll validate this fact. Talk about it and help others to go through what you have been through. Sharing will be good for you and others.
So, take me home and get that home nurse and learn and enjoy having me. Let me explore, and let me be the happy soul I am. Let me grow up in the loving secure environment you both want to provide for me.
I Can Feel That I’m Getting Older.
Now, growing up is tricky. You are going to want to shelter me from bullies, failure, and all things that go bump in the night. Unfortunately, you can’t. You are going to want to hide when I come home from school crying because of the bullies. I need you to put your arms around me and let me know that you love me, and when I shed tears, cry with me so that I know it is OK and that you hurt with me. That would be the best!!! But the era you are raising me in will teach you differently, and you will hide the pain you feel. I’ll grow up and gain insight into this, and it will be alright.
While I’m on the subject of things that hurt: Don’t trust caregivers. I know that in the 1960s you won’t think that your daughter can be harmed by any form of abuse. The disabled are hurt by angry people and sometimes well-intentioned do-gooders who should not be allowed to work anywhere near them. I’ll be hurt, but I’ll get through this as well. All three of us are victims of having had this happen to me. You didn’t know, so don’t feel guilty over not knowing. When you do find out it will be because the time is right and I will heal from past pains.
I need to tell you that you began to do some good things for me in the late ’60s and early ’70s. You need to pursue those things even more and give me the jump-start on my career planning, and help me to see that I can reach my dreams. Just because I’m disabled doesn’t mean I can’t achieve what I want. I know my limits and I don’t need society putting false limits on me.
I’m Feeling Even Older as I Write This.
Dad, you and I are going to turn out to have passions in the same areas. Social injustice is something we will both come to understand. I’m glad that you will work with, and respect, women. I’m glad that you will be open to that.
Mom, you are going to wind up raising two daughters who have health issues. It is going to change our family. I’m glad you will have Joyce because she’ll be things I’m not. She’ll be easier to raise—trust me on this one. We will both cause you and Dad to grow beyond what you ever thought you’d have to do, but in the end it will be worth it.
As I grow up, I’m going to want to do it all by myself. I’m going to want to be just like the other kids. This is going to be hard on you, Mom, especially because you and Dad decided you’d stay at home with the kids while we were growing up. He won’t be home as much as you might like for him to be, but I know that you will tell him everything and he’ll be in the loop. But, back to the being like the other kids. This is something that many disabled kids feel, so try to understand and let me do it myself unless I ask for help. Let me struggle some and then gently offer, even if I make a stink. I’ll understand when I’m older and all grown up.
You should put me into Girl Scouts. Give me outlets that will help me to make friends and to achieve goals. This would also help society learn that the disabled CAN participate. This is very important for girls!!!! This is something you won’t think of doing, but I wish you would. I can tell you this because it is something you would think of if I had been born at a later time.
Help me discover who I am as a young girl so that I can grow to be a strong woman. Putting me in dance and swimming lessons is going to help me to become more coordinated. It is also going to fill my intense need for being in and near the water. I’ll learn from these, and even though the dance will be hard, it will plant some seeds.
I’m going to have insight into what I need. Listen to me because others won’t, and as you support me you can know that I appreciate the fact that you value who I am. I’m going to raise a wee bit of hell along the way and you two won’t understand it, but you will accept it and love me.
When I reach my teen years I’m going to struggle with who I am becoming as a woman. Part of this is normal for all teenagers, but there are special issues that are associated with disability. How I wish someone would author a book about this stuff so you both could read it! Unfortunately, there won’t be a book. Maybe in time I’ll write that book, or maybe someone will beat me to it.
Early on in life you are going to turn me on to books and I’ll devour them. I thank you now for this gift. Reading and learning will be one of my great joys. It will allow me to stand equal with anyone.
Oh, Something Is Happening
Mom and Dad, I’m going to thank you, now, for all the time you will give to me. Driving me when I can’t drive, reading to me when my eyes just can’t see straight, and staying with me when I freak out because the depth of things is hard for me to see. The times when you have held my hand and helped me navigate going down to rivers, and other hard-to-get-to places, will be appreciated. I’m going to thank you for trying to keep the family in “normal” mode and doing things that my siblings enjoy. They will need that.