#Iamonyourside...and other really important reminders
My teenage daughter recently "came out" on Facebook and admitted to her friends, family and some haters, that she had been dealing with significant illness for several months. She let them know, in blunt and direct terms, that she had been ill enough so that the fact that she had been able to get a haircut was significant. To say I was proud is like saying I sort of wanted my cup of coffee on a rainy Monday, where my to-do list was three pages long, I read the message several times because I couldn't believe she wrote it and then posted it. Wow, what courage! This is one brave young lady I brought into the world. Of course, it was met with some concern and some criticism. Well, yeah, of course it was. But for me, it was monumental. See, since December of last year, we had been keeping things pretty under wraps. We didn't have a lot of support or understanding, so we were managing, the two of us, doing the very best we could. It wasn't pretty...tears, frustration, grief, days where one or both of us can't see past how unfair it is. I don't know, but anyway, it's been rough.
I'm not going to lie to you. I have grieved. I am like every other mother out there. I want a happy, healthy, contented and well adjusted child in my home and that child ceased to exist. I grieved who she used to be and have learned to embrace who she i
s. That's what we all want, right? To be accepted for who we are. The plain fact of the matter is that I am grateful for every day. This illness has taught me to look at everything differently, to see it as a blessing even more than before, to know how sweet it is when the day is even moderately good and to just plain be okay even if the day isn't okay. Every day that I wake up and my daughter is still on this planet, in my life, and fighting the fight is another victory, another blessing and a good thing. Yeah, I'm proud. Very proud of her. She is an amazing human being and I can't believe I have been blessed to have her in my life.
My boyfriend and I were talking....boy that sounds weird, boyfriend. Deep breath in .....phew....okay, I can do this....my boyfriend and I were talking about my daughter, about her struggles and how I do my best to support her. Notice I said I do my best. Perfect I am not. Far from it. And I am pretty much okay with that. One of the many things he said that made sense to me was that I need to let her know, especially on angry, difficult days, that I am on her side. Yeah, I am on her side. Which can be really tough for her to know when she is having a difficult day, when she can't see past her anger, when she's mad at the world and I am the closest target. This illness has two popular concepts....one concept is that she is a rebellious teenager, looking for attention. Yeah, okay. Sure. The other concept is that her illness is a result of bad parenting. Okay, yeah. Sure. As I said, we have been dealing with this without a lot of support due to these common patterns of thought.
Recently, we gave up the fight of having Liz stay in school. It wasn't going to work. We both knew it for quite some time, but I couldn't get there. She was playing the game...missing time, always trying to catch up, panicking, stressing, dealing...and it wasn't going well. It was time to let it go. Truth is, I couldn't let it go. I wanted my daughter to go to the prom, to be valedictorian (we had been talking about that since she left the womb), I wanted to go to the school functions and smile with the other proud parents. I wanted to go to teacher visits where teachers mentioned to me that my child was intelligent, bright, inquisitive and gifted and a pleasure to have in class, all the things teachers have said to me since she started preschool. I don't know what to say. Part of me is not proud of that, but it's true. One thing we have agreed on, as part of this recovery process, is to be brutally and painfully honest with each other. Tough to do, but the right thing. So that's my honesty for the day. We've both suffered some loss and it's okay to say it, own it, grieve it, and to push back against it. You never really know what kind of day it's going to be.
So anyway, things were bad, very bad. Then we were getting treatment and she was struggling...through medications and treatment and side effects. Things started to get a little better, then a set back, then a little better, then some side effects. Then, things seemed to smooth a little bit. I really thought things were improving and out of nowhere, the worst possibility loomed. The possibility that she wasn't going to survive began to loom. And you want to talk about scared. Yeah, I was scared and I cried and I did the best I could to get her what she needed without losing complete control. After that, the prom seemed a little less important. Life, that is what is important. It's basic, and it's important.
By now you might be wondering what the hell is this mysterious illness that wreaked such havoc. Well, folks, since early in life, Liz has dealt with chronic pain. The condition continued until it wasn't if she had pain on a given day, but simply how much. Day after day. Then came two more major diagnoses. Didn't see those coming, but they didn't ask my permission. I didn't want to hear them said out loud, I didn't want them attached to my child. This happened to other people, I assured myself in the quiet of my thoughts. No, they were happening to my child and I had to figure it out. They're scary, carry stigma, and are not the kind of thing you want for your child when they grown up. But it's going to be okay. We're doing what needs to be done.
There's been new meaning, new purpose, new priorities in our lives since this all came to pass. I am proud of us....proud of how we keep moving forward no matter how miserable things are. Parenting is not easy and when your child has special needs, it can cut you right to the bone. I have learned a thing or two about dealing with pain and grief and loss. I have learned to be grateful for the basics. I have learned that love is painful, but very rewarding. I know my daughter is a blessing, a gift, and very, very special to me.
I'm not going to lie to you. I have grieved. I am like every other mother out there. I want a happy, healthy, contented and well adjusted child in my home and that child ceased to exist. I grieved who she used to be and have learned to embrace who she i
s. That's what we all want, right? To be accepted for who we are. The plain fact of the matter is that I am grateful for every day. This illness has taught me to look at everything differently, to see it as a blessing even more than before, to know how sweet it is when the day is even moderately good and to just plain be okay even if the day isn't okay. Every day that I wake up and my daughter is still on this planet, in my life, and fighting the fight is another victory, another blessing and a good thing. Yeah, I'm proud. Very proud of her. She is an amazing human being and I can't believe I have been blessed to have her in my life.
My boyfriend and I were talking....boy that sounds weird, boyfriend. Deep breath in .....phew....okay, I can do this....my boyfriend and I were talking about my daughter, about her struggles and how I do my best to support her. Notice I said I do my best. Perfect I am not. Far from it. And I am pretty much okay with that. One of the many things he said that made sense to me was that I need to let her know, especially on angry, difficult days, that I am on her side. Yeah, I am on her side. Which can be really tough for her to know when she is having a difficult day, when she can't see past her anger, when she's mad at the world and I am the closest target. This illness has two popular concepts....one concept is that she is a rebellious teenager, looking for attention. Yeah, okay. Sure. The other concept is that her illness is a result of bad parenting. Okay, yeah. Sure. As I said, we have been dealing with this without a lot of support due to these common patterns of thought. 
Recently, we gave up the fight of having Liz stay in school. It wasn't going to work. We both knew it for quite some time, but I couldn't get there. She was playing the game...missing time, always trying to catch up, panicking, stressing, dealing...and it wasn't going well. It was time to let it go. Truth is, I couldn't let it go. I wanted my daughter to go to the prom, to be valedictorian (we had been talking about that since she left the womb), I wanted to go to the school functions and smile with the other proud parents. I wanted to go to teacher visits where teachers mentioned to me that my child was intelligent, bright, inquisitive and gifted and a pleasure to have in class, all the things teachers have said to me since she started preschool. I don't know what to say. Part of me is not proud of that, but it's true. One thing we have agreed on, as part of this recovery process, is to be brutally and painfully honest with each other. Tough to do, but the right thing. So that's my honesty for the day. We've both suffered some loss and it's okay to say it, own it, grieve it, and to push back against it. You never really know what kind of day it's going to be. 
So anyway, things were bad, very bad. Then we were getting treatment and she was struggling...through medications and treatment and side effects. Things started to get a little better, then a set back, then a little better, then some side effects. Then, things seemed to smooth a little bit. I really thought things were improving and out of nowhere, the worst possibility loomed. The possibility that she wasn't going to survive began to loom. And you want to talk about scared. Yeah, I was scared and I cried and I did the best I could to get her what she needed without losing complete control. After that, the prom seemed a little less important. Life, that is what is important. It's basic, and it's important. By now you might be wondering what the hell is this mysterious illness that wreaked such havoc. Well, folks, since early in life, Liz has dealt with chronic pain. The condition continued until it wasn't if she had pain on a given day, but simply how much. Day after day. Then came two more major diagnoses. Didn't see those coming, but they didn't ask my permission. I didn't want to hear them said out loud, I didn't want them attached to my child. This happened to other people, I assured myself in the quiet of my thoughts. No, they were happening to my child and I had to figure it out. They're scary, carry stigma, and are not the kind of thing you want for your child when they grown up. But it's going to be okay. We're doing what needs to be done.
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