Posted by Rebecca Bingham, Special Needs Mommie | Posted in The Special Needs Mommy | Posted on 09-06-2010
A few years ago I was asked to write a few posts for the literary magazine Segullah. At the time I was dealing with the diagnosis of our little Ace. My son had also been recently diagnosed and we were already dealing with the issues our preemie daughter Nori had (she was then 18 months old). I was a little bit overwhelmed. There is a part of me that is a bit embarrassed about the things that I said and felt. I could almost shake the old me and tell her to lighten up. But, then I remember that this is a process and a journey.
I find myself NOW thinking all the things that other experienced mamma’s told me THEN (and I couldn’t quite believe them). Confronting your new life can be scary and frankly, it does focus on the things that you will not have, rather than the wonderful things you do. I think that is OK. Mourning the old idea is a very important part of embracing the new one. So, in retrospect I guess I am not embarrassed about how I felt. It was real and it was true at the time. So, wherever you are on your journey– journaling is a good thing so you can see how far you have come. Part 2 next week……
When I found out that Grace had DS, no one told me what to do. Everyone told me what to feel (“you must be so shocked” or “this must be so awful for you”). Everyone told me that she would be happy or sweet. Everyone told me to read the short story called “A Trip to Holland.” No one told me that I would read it and want to throw it across the room. No one told me how to get from being devastated and sobbing on my bed to being a happy-go-lucky mom of a special needs child. Nobody told me that negotiating the distance between the two places was going to be much trickier than I anticipated.
No one told me how to tell my other daughter that her sister had Down Syndrome or how to explain what that meant. They didn’t tell me that my explanation would lead her to believe that all people with flattened facial features, like her Korean friend Nicole, or people with upturned eyes, had Down Syndrome.
No one told me I would come to hate the word “retarded.” Not because I was ashamed that I have a daughter who is retarded, but because my blood would actually boil whenever I hear it used in a flip or casual way. I want to shake the person using the word and ask them if they really know what they are saying. No one told me that I would hate these people because while they get to talk about being “retarded” and I have to figure out how to raise my retarded child as WELL as how to teach my typical children not to be ashamed of that word.
No one told me my relationship with Grace would be complicated. I love her but I am also afraid of her. I want her to be who she is at the very same time I wish I could wave a magic wand and make her typical. No one told me that by the time she reached the ripe old age of three months I would already be mourning the fact that she won’t get married or have children of her own.
No one told me I would have to learn a new language. There would be new medical terms, abbreviations, and lingo used in therapies, with the doctors, and the social workers. There was new protocol on how to set goals for her and how to mark their achievement. No one told me I would have to gear up for a potential battle about school and I would have to decide if I wanted her to be mainstreamed, included or separated, or what the difference is between them. No one told me I would have to learn how to plan for her future without us while making sure she never had enough assets to make her ineligible for Medicaid. No one told me that I would have a daily internal debate about which I was more worried about, me outliving her or vice versa.
No one told me that when I went to a day center for the first time to check out services offered for my daughter. I would feel the same feelings wash over me as I had when I visited as a teenager. No one told me that even when it was MY child in question, I would still feel uncomfortable at the day center. I would still wish I could run out of there. Nothing changed. The fact that I was raising a special needs child hadn’t changed anything.
Wasn’t I supposed to be her greatest advocate? Wasn’t my role, for the rest of my life, to be the one that fought for her? To challenge others to see her for all the things she COULD do? No one told me I wouldn’t want to do those things.
No one told me I would dread the day she was finally born because it would mean that we would become “that family.” No one told me I wouldn’t want to bond with her because it was too scary for me to think about it. No one told me I wouldn’t want to look at her when she was born because then it would become real.
Everyone told me that everything would be OK. Everyone told me about their neighbor/friend/ward member that had Down Syndrome and was really nice/really happy/bagging groceries. No one told me I would come to hate those words. No one told me I would want to snap and shout to the universe that I wanted just a bit more for this child—all my children—than to hope that she could be a grocery bagger someday. I had even said the same thing to another set of parents once. No one told me how all the things that I said to other people would come back to haunt me.
No one told me I would ever have a discussion with a doctor in which terminating my child was the assumption. No one told me how it would feel to have a geneticist sit me down and give me a laundry list of things that could go wrong with her and then give me the choice if I wanted to go continue the pregnancy or to terminate. No one told me I would actually have to put my pro choice stand to the test.
No one told me how to handle this experience. How sometimes I would feel so defeated and cognizant of how unfair this was, and then so guilty because the reality is that I have a healthy child who has the expectation of a long and full life.
How many mothers across the world would give anything for the privilege of raising their child to adulthood, to have access to medical care and education? I have lived and worked in countries with mothers who have not had the same expectations.
No one told me how thankful I would be for my husband who has never been anything but an enthusiastic father to our Gracie girl. From the first minute we knew about the Down Syndrome, he has been perfectly fine with her whole package. And, in a moment of uncharacteristic candidness, he admitted that he knew he was being selfish, but that in some ways he felt relief. He knew he would always be able to provide for the needs of this special daughter of his and he didn’t worry about her making choices that would hurt other people. I hadn’t thought of it that way, but he was kind of right. No one told me that I would resent—just a little bit—his willing acceptance of who she is, while I still struggled with some selfish and petty issues.
When I look back, I realize that maybe someone did tell me these things and I just couldn’t hear them. Maybe part of my journey is to get all this stuff out of my system early so that I can move on to being the best cheerleader special needs mom around. Maybe I will look back on this in about 5 years and shake my head and laugh about what a foolish person I was. Heaven knows I do that about our adoption stuff all the time.
Continued next week……