I have discovered something about myself.
I’m angry. Very angry.
And I hold it all in and turn it on myself. I’m so mean to myself in my head it would probably make you cry.
It makes me cry.
And I think most of my self-hatred is due to all of this anger. I’m a kind, compassionate person who refuses to expel her anger on others…so where else could it go but inside?
But I’m trying to truly love myself and, therefore, I need to express my anger somehow.
I am so angry at Cri du Chat syndrome. Even though I love my daughter, and all that comes with being her mother, it doesn’t mean that I’m not angry about it. I try to be positive, and I’m really thankful for all of the wonderful things she’s brought to my life, but it doesn’t mean that I’m unaware or don’t feel all of the shitty parts also.
I’m angry because everything for Olivia is a struggle. It’s not fair. She has braces on her teeth, glasses for her eyes, scoliosis brace at night, still wears Pull-Ups, can’t communicate very well, can’t ride a bike, can’t hang out with friends, the list goes on and on and on and it’s so frustrating. It breaks my heart every single day.
She doesn’t have friends. She doesn’t seem to care but it makes me so sad and, frankly, angry too. She is amazing and sweet and hilarious and fun to hang out with. Why wouldn’t someone like that have friends? Because she’s “different” and that just sucks. I love hanging out with her, her brothers and family love hanging out with her, why doesn’t anyone else? Why does she eat lunch alone?
School for Olivia hasn’t been going very well. We are battling a bit. That makes me ridiculously angry. It’s unfair that someone as precious and vulnerable as Olivia has to endure anything but perfection while at school. I’m sorry, but that’s how I feel. And I’ve told you before, I’m ok with being that mom if I have to. But, damn, it’s exhausting. And frustrating. And heart wrenching. And makes me angry. Why does it have to be so hard?
I’m angry because she’ll get her period soon and won’t understand why or how to handle it. I’m angry because I’ll have to handle it alone. I’m angry because I think I’ve had enough of that kind of bullshit to last a lifetime and I think I should get a pass on this one.
She won’t get married, won’t get her license, won’t go to college, won’t live on her own, won’t have children, won’t do so many things. It’s so unfair.
We have to take her wheelchair/stroller everywhere we go. Grocery shopping is getting to a be a real challenge now that she’s getting bigger. Everything is! There’s no quick stops to the drug store or the grocery store or the library. There’s no leaving her at home alone even though she’s almost 14.
And for me? I’m exhausted. All of the time. I constantly worry about her. Matt and I have to work so much harder at our marriage because of our stress thanks to her syndrome. Every day is hard. You’re never “off” when your child has special needs. Ever. And the thing that makes it even more difficult? It never ends. Sometimes when I hear people complain, I just want to scream. Maybe they’re complaining about potty training or not sleeping or not being able to go out to dinner and I just want to explode because it’s temporary for them. Eventually their child will use the potty. Eventually they will sleep. Eventually they will grow up and have a life of their own. But not Olivia. Our struggles are never ending. It’s not temporary. It’s forever.
And, yes, trust me, if you’re a regular reader you know that I love my life, I am positive, I always look for the silver lining. But, as stated numerous times in The Fault in Our Stars, pain demands to be felt. And the longer I hold it in, and pretend it’s not there, the worse off I am.
So I’m seeing red. Lots of it. I’m angry.
There. I said it.
Oh. I. Hear. You. I always considered myself to be a positive person, but lately, I’m angry and cynical and all of that yucky stuff. When people post “positivity” quotes on social media, I cringe. When people tell me that I need to look on the bright side, I burn up inside. I, too, recently told a friend that people don’t understand that their “terrible twos” woes are going to end one day. The issues they are presently dealing with will subside in a month or two. I have been at this for 7 years, and know there is no end in sight.
And, like you, I know better. I know that I experience the simple joys that many people don’t. I have accepted many things in my life and made changes accordingly.
Yet, I refuse to deny my feelings. If I’m having a hard day, no cutesy quote on social media is going to make me see things differently. I KNOW ALREADY! (is what I want to say) but I want to honor the fact that THIS. IS. HARD. and that it’s for life.
And, I never get a mental break. Everything we do takes twice the effort and it’s not because I’m choosing to make my life difficult (yes, I’ve been told that too!) Who in their right mind chooses to make their life difficult? I want to be able to grab my purse and have my kiddo hop in the car to quickly pick up milk. I would love to not have to pack my house and to coordinate carrying him to the car, be sure he can wait in there safely while I lock up the house. I have done it a million times, and it’s hard each and every time.
I am thrilled that you have shared this, Tiffany, because, to be honest, I sometimes ask, Why don’t other parents in my shoes look like they’re struggling?
Sending you hugs and a high five, fellow mama! I definitely hear you. grrrr
I get it. Not to the same degree you do but I know it is just hard. Hugs!
Just remember God has a plan for everyone. You may not see it just know it’s there. It will all make sense in the end.
This was a beautifully honesty, painful post. I get it. I hate Cri du Chat too. I’ve said a million times that if I could take it away from Olivia, if I could give her that missing part of her chromosome back, I would in a heartbeat. I’d do it because that missing piece of her DNA doesn’t make her the beautiful, sweet, loving person she is. It just makes life hard. It makes her have to work harder than everyone else for the same results. If she could have that part back who she is wouldn’t change but the challenges would be eased.
Live is hard enough with added challenges.
Rage as much as you need. You are not alone in your anger.
I wrote a long paragraph and then deleted it.
Just sending you huge hugs and knowing I understand every word.xxxxx
It’s okay to be angry, because sometimes life is unbearably hard and unrelentingly unfair. The important thing is that you can see it, admit it, and try to wrestle with it as best you can.xoxo
You always stop me in my tracks with your writing. So much honesty and emotion. I can’t even pretend to understand you heartache, but only know I have my own right now that is very real. If I could take away any of yours, I would. Life is hard, annoying and crappy sometimes. It is good to just put it out there. I think you are amazing, strong and definitely a hero to me. I am here if you need me. Love you Tif!
I know I am late to the conversation, but wanted to add to the chorus of voices. It is acceptable to be angry. Explore it, understand it and eventually, the hope is to make peace with it however you can. xoxo