Ok friends, I am slowly rallying. Slowly. But rallying, nonetheless.
My friend put it best last night - I am in mourning. First stage is denial, and there I sat after Catherine's diagnosis.
"Maybe it's not as bad as I thought."
"Maybe she's just slow."
"Maybe school will help more than we think."
"Maybe the doctor was wrong and it's something else."
And then there's:
"OH! A new word!"
"WOW! I've never seen her do that before."
"Oh lordy, she's hilarious."
And then there's:
"What if I hadn't breastfed her?"
"What if I had caught her constipation early?"
"What if I had been more demanding of the doctors?"
"What if I would have discovered this SOONER?"
It's gotten to the point where I second guess myself. I talk myself through all the viable options that we had, and there aren't any.
The toughest part is that people aren't quite understanding. My mom, God bless her, figureed that penicillin would fix it. I thought so too, at first. The more I am understanding, the more that I realize this is not fixable. And people don't understand that. People don't understand something you can't readily explain. Like another friend put it, this is not easily explained like diabetes or cancer or food allergies. This is a lengthy explanation. And even then, people still don't understand.
This isn't bad parenting. This isn't a misbehaved child. This isn't a problem we can fix. This isn't a girl who is overtired, or sad, or angry, or a "pistol." Her brain is literally being attacked.
I am seeking counseling, but even so, this blog has helped immensely. It helps me work through my issues and the what-if's and the what-now's. It helps me sort my thoughts out, make sense of them, and be able to face them head on. Just look at the post from Monday. Or better yet, take a look at the one before that. Ayeesh, talk about jumping off a cliff.
It helps me deal with Catherine. The late nights and the night-terrors and the lack of communication. The TEMPER TANTRUMS. God the temper tantrums.
There are so many symptoms that I don't know about, that I don't understand. There are test results that I am reading blindly, which I have no idea how to actually decipher. I am putting together a plan when there are no "plans" that work for every kid. You just have to keep trying, keep managing, keep staying ahead of the disease.
So here's the plan of action:
1) Fix her gut. Gut issues are a huge source of mental health issues, and right now, her gut is most likely the issue that is causing the most problems. So we need to fix the gut. Get healthy gut flora in and get the bad out. Fix the leaky gut. Most likely with dietary amendments, which will be time consuming and costly.
2) Fix her brain. We have her on an IEP for school. That will help IMMENSELY as many of these parents who fight this have to fight it alone. We have a teacher who knows the disease and has seen it in her own classroom. I am thankful for that.
3) Fix her speech. School will also help with that. Eric and I have decided to implement sign language. From what I understand, and what I have observed with Catherine, she has truble with auditory processing (understanding what we are saying to her) and how to verbalize it back. Interestingly enough, the words are in her brain. She just can't understand them, or use them. So I think sign language will help. We just have to figure out what words we need to use the most.
And before I list the things I am terrified about, let me say this: I am a mom. Moms who are worth a damn give a shit about their kid. So before anyone thinks about saying, "You can't let that rule your life, Laura," realize that if I don't think about these things now, Catherine may not have a hope.
So here are the things I am terrified about:
1) School. I am terrified that they will get Catherine on a good day, and she will ace all the tests that will ultimately take away her IEP.
2) Insurance: We are lucky that we have good insurance, but PANDAS is not really a recognized disease and we will have a fight against us. If we are able to get Catherine diagnosed with something other than PANDAS (i.e. autism, auditory processing disorder, ODD, OCD, Tourette's) we will be eligible for Medicare (possibly), which could give us a broader sweep of what would be covered. Beyond that, we would also be eligible for respite care. Not necessarily something I want to pursue as I think that Catherine needs social interaction, but at the same time, sometimes mom and dad justneed a break. And quite frankly, her brothers do too.
3) Her brothers. I worry that they will not understand Catherine. Eric and I talked about how important it is to be a tighter family unit. We do a lot of things as a family, but we also don't do a lot of things as a family. For example, Eric took all three kids on a bike ride on the 4th of July, and in the afternoon, I took James and Catherine to the pool. So although we are out doing things, we aren't doing it together. I am worried that they will reject Catherine (yeah, I know, doubtful, but I don't want them to become resentful of the attention that we have to give them).
4) Social life. Sounds stupid, but I want Catherine to have friends. Right now, she doesn't understand social cues, or when her "friends" want to settle down and stop wrestling on the floor. So she will hit them. I don't know how to fix that.
5) Potty-training. Also seems stupid, but I don't want her in diapers in Kindergarten. Although that's the way it's looking. Also, I just want to be fucking DONE with diapers. You can't fault me for that.
6) I Love You. I want her, so badly, to say I Love You to me. Seems selfish doesn't it? But nothing is better than when your child tells you they love you. She can't say it. What if she can never say it. I know, I know, she will tell me in other ways, but there is something about those words.
7) Illness. I am now terrified by it. I have a list of things we need to do as a family in regard to keeping the house clean. We are having the vents cleaned. I am having a housecleaner come in and deep clean (and then hopefully I can convince Eric to keep her coming every other week). I cleaned the house from top to bottom today. I have bought epsom salts to give her baths to keep toxins off and out of her. I am really REALLY getting into essential oils to help boost her immune system. And I am hoping that we will be vigilant this summer and into the school year. But I am terrified for illness. Strep was the catalyst that started us into the pits of hell, but now that her immune system has turned on her, it can be ANY illness that will catapult us right back where we were.
Is it getting better? Yes. Her behaviors aren't so severe and she seems happier. But her behaviors are still there. We are still trying to manage them. And in the meantime, I am in mourning. I am mourning the loss of the little girl that I thought I had. I am mourning what I thought our family of 5 was going to be like. I am mourning the fight we will have to fight and the battles we will lose... and hopefully win. I am mourning the sleep I used to get, and the stress I didn't have in life. I am mourning time I cannot spend with my boys because I am THE GO TO person for Catherine. I am mourning the carefree days of watching all three of my kids play with each other and eat ice cream. I am mourning, friends.
I am mourning. But I am rallying.
We will survive this. We will help others. We will learn to manage this. We will survive this. There is no other choice.
Until my next breakdown, cyberspace. Until next time.
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