Honestly, I'm exhausted and feeling rather hopeless tonight.
Froggy is having seizures again, and on top of that, she's not eating. The second we put her in the booster seat, she says, "down." Food has suddenly become unimportant. And it's making this mama sick with worry.
Tonight, she was awake til 11pm, because of her eye deviations. I was finally able to rock her to sleep, but she twitched and her toes tightened, and her brow curled and it just breaks my heart to watch something else 'wrong' with our sweet girl.
I'm to the point where I'm just angry. I'm angry Froggy has CF, I'm angry she has seizures, I'm angry she isn't eating, I'm angry that I can't do anything about it. I'm powerless and angry that I'm powerless. I'm angry that this feels unbearable, and I'm angry that I'm not stronger.
I'm angry at God and at myself and at my husband, because none of us can make anything better. I'm angry that nobody can fix this, I'm angry that our little girl has CF and now seizures, and some kids are just perfectly healthy. I'm angry at those other kids. I'm angry that we are so far from my family. I'm angry that I'm feeling sorry for myself and I'm angry that I am the only one who is angry.
Most of the time I can focus on the positive aspects of our lives, the fact that Froggy is so wonderful and such a joyous person. Everyday, I laugh out loud at least 200 times because of something she does or says. Tonight, after treatment, I was trying to do her percussion, and she was running around me in circles screaming, 'Rosy mommy, rosy, mommy." I realized that she had taken the song "Ring around the Rosy" and modified it for her mommy.
I'm angry that at night, when she has finally settled down, I can't just find solace in her loveliness, because I'm still too angry about all of the things I cannot change.
I'm angry because other people have things worse, and other people have things better, and neither point makes me feel any different, because it doesn't change anything. It doesn't make me feel any less angry that there are people starving, or people driving Hummers. We're still where we are, and they are still where they are, and misery doesn't really love company after all.
I'm angry that Froggydaddy isn't angry, that at the end of the night when I'm losing my mind with exhaustion and worry and feel like our lives are falling apart, he says, "she's going to be fine." It sounds good, and you'd think it would make me feel better, give me some hope, but it really just makes me angry, because nobody knows. I'd like to be positive about everything, but it doesn't feel right anymore. I've been positive, I've believed that everything would be okay when she was diagnosed with CF. And as soon as we adjusted to CF, the seizures started. And there comes a point where you have to look at the situation and say, "it may not be okay." We were never promised anything.
I'm just angry. Tomorrow, I'll feel better. The sun will come up and Froggy will snuggle into my neck and say, "Mammmmaaaaa!" And all will be right with the world. It's just as the day wears on that I feel the weight of things. I wish I had the hope and positivity that FD has, that Froggy will be okay. And in my heart I believe that too. But right now, I'm too angry to be satisfied with hope.
Sometimes I just think, "okay, we're ready for the good news." That big check that eleviates our financial woes, the call from the doctor that they found a cure, a medication that stops Froggy's seizures. If only. I read somewhere that you'll never be happy if you keep asking, "if only". If only I had this, I'd be happy. Yet, every night I find myself asking the same question, "if only."
9 comments:
I'm not even going to pretend to offer comforting words, both because that's not what you need right now, and because there aren't any that would do any good. You're in Anger Phase at the moment, and you need to ride it out, not deny it.
When you've come through this phase, have a look at one of my favorite books, 'The Tao of Pooh'. No solutions, no preaching, no solve-it-all notions...just a book that always leaves me a little more calm, serene, 'quiet' after reading it.
See you on the other side ....
Oh honey - I am so sorry you are feeling alone. Itis only right that you are angry - I'm angry FOR you. It's not fair - it's not. As a mom myself I get where you are coming from about being worried about your child and people saying "It'll be ok. Everything is going to be fine." When Kaylen was going through her period of stopping breathing and passing out and I was holding a blue, limp child im my arms until she came back around there was not ONE SINGLE thing that was ok in that. Not one. When you are the primary parent to a child with medical stuff it is never, ever ok. You can't for a single second pretend things are ok. I know you need a break, You know you need a break. The thing is this: you won't take one because you can't bear to be away from her. I understand.
Be angry. Cry, scream, yell and kick. You need to get it out.
I'm here if I can help. I know I don't know what it's like to be in your shoes but I'm here. I'm here.
Oh E! I have been thinking about you since we talked yesterday. You are not alone in your anger. In your rage. I am right there with you -screaming at the injustice of it all.
I love you. I support you. I am sorry that you are feeling so helpless. There is nothing worse for a mama -there really isn't.
I am angry with you. You are not alone and I keep you and your family in my prayers.
hugs froggy mama. hugs. jcn
i love you.
chanin
I'm thinking about you and your family... I won't pretend to know how you are feeling but I think you have every right to be angry! Its just so unfair.
Hang in there, Elise! You are SO aware of and articulate about how you feel. You are amazing, and Froggy is so lucky to have you.
Sending prayers,
Elizabeth D.
Thank you everyone. I so appreciate your love, understanding, encouragement and empathetic anger.
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