I spend an enormous amount of time and energy feeling guilty and heartbroken. Really, it's kind of ridiculous. I know this. I wish it weren’t the case, and believe me; I try as hard as I can to make it stop. I run. I exercise. I pray. I journal. I write. I read. I advocate. I help others. I talk to friends. I keep myself busy. For the most part I can manage it well, but every once in a while it becomes consuming.
Sometimes there are obvious triggers, sometimes not. The entire last month has been a big one, and try as I have; guilt and heartbreak took hold of my heart and soul tightly in the last few days. I woke almost every night in a panic with the same thoughts I’ve had on and off for years.
“This is your fault.”
“You’re the worst.”
“Why didn’t you do this or that?”
“If you had only tried this, maybe she would have been able to do this…”
“Maybe if you didn’t spend so much time on advocacy and writing, she would do this…”
“Did you really need that second Master’s degree? Did you need to build this house when you did? Shouldn’t you have just concentrated exclusively on your daughter like a good mom?”
“Why didn’t you just make that phone call?”
The phone call I’m referring to is one that haunts me and probably will forever. I suspected Eve was exposed to high levels of mercury very early in her life. I was so nervous about it that I grabbed the phone to call the doctor’s office, and while holding it to dial the number, scoured my baby books for information on why or if that would be bad. When none of them even had the word mercury in them, I decided I was totally over reacting and hung up the phone. There’s not a day that goes by I don’t regret that.
The end of the school year is approaching, and it’s a big one. Eve is graduating from eighth grade. In addition to her landmark fourteenth birthday, which I thought would mark the finish line of our journey and that not happening, several big moments have happened in such close proximity that it has felt like I am bowling pins being bowled over one by one.
Bowling. That may have been the first trigger come to think of it. Eve has been bowling recreationally for several years now. Our local alley has a wonderful program for kids and our high school is almost always a state contender. We have participated in the junior league for some time.
Along the way we invited some friends to join us. All of our children were at the same level the first year, but then the other two took private lessons and joined the school team. They have skyrocketed into really good junior bowlers. One made it all the way to state. Eve? She’s where she’s been for years. We never did lessons. It was one more thing I didn’t think I could put on my plate at the time. I felt jealous and angry at myself and then ashamed.
One of them also moved out of Eve's classes this year. She did intense tutoring and therapy for a specific issue she had for years. Granted, her issues were less profound than Eve’s, but still. I couldn’t help but feel guilty that we stopped private tutoring 3 years ago to give her a break. Her friend will enter high school as a “regular” kid.
Not us. We had our transitional meeting a few months back where they informed us she will not be at the freshmen center with kids her age, but rather at the senior building because that’s where they placed the special ed classrooms. I almost fell over at the thought. The most vulnerable kids who need their peers and to belong somewhere are being isolated from them completely. How could they do that?
They also then handed me a paper with a number on it for a service if we want to transition her to our custody at 18. She was 13 at the time. I threw the paper away and realized they have already written her off. Stupidly, White Snake played in my head as I did. For years I have felt it is my sad, hilarious, pathetic theme song. It’s been stuck in my head since.
“Here I go again on my own….Going down the only road I've ever known...”
And now we are in the process of scheduling major surgery for her. Eve was diagnosed with rapid progression scoliosis last December. They call it idiopathic, of no known cause, but please. We know the cause: brain damage as an infant. She now needs to have serious spinal surgery in June, to be hospitalized for 5 days, and to manage an intense recovery at home for a month during her summer vacation. Cause that’s fair. That’s just what this kid should have to go through now.
On top of all of that, and planning a graduation party for her that should be to honor a joyous celebration but instead feels terrifying, her older brother has decided now would be a good time to get an attitude and slack off in school.
Add “Maybe if you would have been home after school for him instead of working and going to grad school and made sure he was filling out his planner and doing his homework right away instead of trying to be “hands off” and teach him independence, you wouldn’t be in this situation” to the list of things I hear in my sleep.
I go to bed at night exhausted but doing breathing exercises to keep my “bad mom” thoughts at bay. I usually fall asleep easily, but wake around 3 with them shouting at me. All of the things I believe I have failed at attack me until I have to get up a few hours later. My only consolation is that I know my mind is messing with me and that this is not real. Usually that helps.
Even so, the pain I feel is very real. That’s not something I have ever been able to
talk myself out of. It waxes and wanes, and there are definitely long periods of time I go without feeling badly, but then, out of nowhere, bam! It hits me.
Walking through the mall and seeing a group of young teenage girls shopping together. Scrolling through my newsfeed and seeing picture after picture of my friends’ wonderfully healthy and athletic kids getting award after award. Facebook is at once a lifesaver and a crushing blow for me.
It’s not predictable what will hurt either, so I’m almost always holding up some kind of protective shield just in case. It’s just that it gets heavy a lot. It’s been very heavy lately.
Yesterday was a day it was one of the heaviest. I had been fighting with my son for a few days. I had been on the phone with insurance groups and MRI places and doctors for hours. I had been sending out invitations for an event that feels scary, not happy. And I had been planning to take Eve shopping for the 8th grade dance this Friday. I should have been looking forward to it, but I was kind of dreading it. It was another reminder of well, everything.
The feeling that I will never escape this pain started to dawn on me. I don’t know why, but I thought for a long time that with time I would get used to it, or it would lessen, and I would learn to live with it better. That has not been true. In fact, sometimes I feel like it’s getting worse.
I actually realized sitting at a streetlight the other day that this is likely how it will always feel. Now it’s 8th grade graduation, but then it will be high school graduation and prom. Then it will be college. Then it will be marriage and babies. A career. A life. It hit me like a Mac truck…. It’s never going to stop. I’ve got decades more of this pain to carry. Decades. And it’s only been one.
This was my pathetic mindset as we headed off to the mall to find a dress. Bitter. Tired. Slightly depressed. Sad. Feeling sorry for myself. I wasn’t remotely excited, but I put on my best face and told myself I would enjoy the next few hours to the greatest extent possible for Eve. I was not expecting that I actually would.
A few minutes into the ride, a beautiful day here in Chicago with our windows rolled down, Eve leaned over to turn up the radio. Her favorite band was playing and she wanted me to sing with her. Sing? I thought startled. I remember when she couldn’t tolerate any noise and would cover her ears at the sound of the radio.
We then saw some motorcycles driving by, and she told me how she remembered Dad took her to a motorcycle store when she was little. She said she loved it and wants a motorcycle when she’s older. I told her we would see about that, thinking about her actually driving one.
She then mentioned she wants to go to the Apple store to look at the I-watch and maybe she wants that instead of a phone for her graduation present.
And then she told me she recognized the street we would turn on if we were going to her cousin’s house. She was exactly right. I was stunned. She knew where we were. For a child who is terrified of getting lost because it’s so easy for her to forget where she is, this was incredible.
We got to the mall and headed right to the dresses hand in hand. She was so excited and instantly found 3 or 4 that she loved. In the dressing room, she commented on what she liked and didn’t like about them, and then chose the one she loved best. It was a great choice and looked beautiful on her. I got a little teary at how big she’s gotten. She’s turning into a young woman.
After the purchase, we headed to the shoe department. She picked up a great pair of low heels that would look perfect with her dress. I asked if she was ready for heels, and she assured me she was. She also wanted to know if she could get her nails done before Friday.
The shoes were also perfect. We walked out of the department store and stopped to get a pretzel with lemonade as we usually do at the mall. Together we sat and talked about all kinds of things…from the difference between nylons and tights to the boy she thinks is cute. It was precisely then a very foreign but very welcome feeling hit me out of nowhere, a mixture of gratitude, joy, contentment, and pride.
"You may think you’ve done a lot of things wrong, Julie," I heard myself say. "But obviously there’s a whole lot of things you’ve done right."
Here we were sitting enjoying a pretzel together at the mall. Talking about boys. Just finished buying a dress and shoes for a big dance. Laughing. Bonding. Discussing hair do ideas.
This was a moment I had dreamed of. This was something I was once told would never happen, and that I should never get my hopes up to happen.
This was a child who was never going to speak, and if she did, not in a meaningful way. This was a kid who couldn’t tolerate the radio or a vacuum who now loves nothing more than to blast her favorite songs in the car and sing along. This was a kid who defied all odds, who broke down all barriers, and who fought harder and braver than any person I’ve ever known.
I forget about all of the work that went in to getting her there at that moment. It’s so easy for me to focus on that which I didn’t do instead of what I did. It’s so easy to get tied down by the guilt and pain, focusing on what she still can’t do instead of what she can. It’s so easy to compare her to other kids, always wondering why it had to happen to her, and who she would have been if it hadn’t.
But here, right in this spot next to the pretzel store, ten years of brutal, expensive, lonely, and frightening at times, exhausting work showed its face to me…and it was beautiful.
All the doctors. All the conferences. All the therapy. All the downloaded studies and late night reading sessions. All the chat rooms, Facebook questions, and emails. All the prayer. All the tears. All the doubts. All the fears. All the journal entries.
All the guts.
The goddamn guts it took to take this path. To trust my instincts and my intellect when the world told me I was wrong. That I was smart enough and wise enough to know what was right for her, and that no one, ever again, would make me feel any less capable for any reason.
I lost my breath for a moment at the thought of what we have overcome…at what I have overcome. At what I was able to do for this child in what is the dark ages of information compared to ten years later today. I was no less than a freaking pioneer. And I made it to the other side. That’s incredible.
I will always wonder what else we could have done for her. I will always wonder if we should have found different tutors or done different therapies or gone to different doctors. I will always wonder what life would be like if I had made that call. I will always wonder if moving when we did was a bad idea.
I will always wonder if I should have stopped my career and focused only on her…but then shake my head and realize, no. I shouldn’t have. I have two other children and a husband who needed me to help provide a home and life for them that didn’t revolve around autism. I needed to do the same for myself. And by working those years, I have taken us on amazing vacations and paid for their college tuition. No. I will not feel guilty about that.
I think just by the nature of being a mother, I will always question what I did wrong and what I could have done better. I don’t think that feeling is unique to special needs mothers. Really, I’m starting to understand my own parents and grandparents and their reactions to our choices growing up and as adults so much better.
When you so desperately want the best for your children, and that option is either taken away by no fault of their own…or even by fault of their own…it is devastating. The loss of the best life you wish for your child has to be the worst kind of loss there is. And there’s no diagnosis or circumstance that holds the patent on that.
But one thing I do know for sure…one thing I think a whole lot of us need to remember far more often…is what we’ve done right. That every day, every month, every year, in whatever situation or circumstance you found yourself, you did what you thought was best at the time. You did what you could at the time. And that even if some choices worked out and some didn’t, that’s Ok.
Because the good, I’m positive, far outweighs the bad. What you’ve done right in reality far exceeds what you’ve done wrong in your mind. We just have to remember that. I know I will try hard to do so as the next few months unfold.
The Dance. Graduation. Vacation. A Party. Surgery. Recovery. High School. And all while I write a book and start my next adventure.
I’m sure there will be several nights I still wake drenched in guilt and heartbreak…questioning my priorities, reliving past trauma, burdening myself with the responsibility of results that were not of my making…but when I do, I will dry myself off with what I have done right and fall right back asleep.
Besides. I don’t really have a choice. I’m going to need my energy.
We have bowling lessons and a new tutor starting next week.