When you have a six-year-old, born 15+ weeks early, never Google any symptoms.
Rash? She must have measles. Or mumps. Or a tick-bite that can cause Lyme Disease.
Fever? She must have Meningitis.
Stomach Ache? Has to be a kidney stone…again.
Brain hurts? Has to be a seizure. Or seizure-related. Since she’s had one migraine, every slight mention of a head hurt has to be an aneurism, right?!
Body odor at age 6? Has to be early onset puberty.
The last one is what is getting to me. I thought I noticed development in her chest within the last few months. The, 2 weeks ago, I realized my kiddo needed deodorant. Like badly. Took a whiff and thought it was my own and that I had forgotten my deodorant for days. The strange thing is that it’s only one armpit. The other armpit is where the mysterious rash has been located for 12+ months. Doctor’s say not to worry, it’s allergies, but without referrals, you worry.
So, given that the arm with the rash doesn’t smell, I’m thinking blocked sweat glands. Which would explain why it comes and goes. Is there even a treatment for that?
Here’s the deal. No one knows anything. I live in a rural area and drive 2 hours to any specialist she sees. There is one pediatric nephrologist in the state. 2 pediatric urologists. Our local doctor is great and can reign me in from these wild late night tangents most of the time, but I’ve been saying for 16 months that she needs an evaluation. Maybe now they’ll listen to me?
I have to drive 2 hours to the specialist, only to figure out that I’ve been sent to the wrong one because no one knows much of anything about these kiddos that were born so early. It’s like living in the stone age here. Yes, it’s safe, and I know everyone around here, but I’ve considered moving for her to have better health care.
Oh, the Versed didn’t knock her out? She remembered the cherry mask from the anesthesia? Pediatric anesthesiologist realizes, after some major calculations and talking out loud, that because of her severe premature birth and the medications that she’s been on, that her kidneys are processing the medicine so fast that it barely had an impact on her.
Now, I talk aloud. When I’m stumped on my math homework. It’s a struggle, even for those who know computers well, but I’m just starting this journey, so I settled for a 60% on my quiz last week. To be fair to myself, I have had anaplasmosis for the last 2 weeks and haven’t been very good about taking my antibiotics more than once a day. I’ve been exhausted and felt like I had the flu in August. Seriously, I felt like an idiot going to the doctor for weird symptoms. But I did redeem myself by not being hospitalized and getting a 100% on the quiz this week for math. Discrete math is not very subtle, either. It hits you upside the head like a backpack full of bricks. My head feels like it’s full of bricks after I read it and do homework. Except for this week. This week was easy (I did this kind of work for extra credit in junior high, so it’s similar). But most weeks, I’m happy to get a B. I pulled my average for the class up to an 87 after my quiz. I’m hoping I can pull an A-. It’s highly unlikely unless I get 100 on everything from here out, basically. I know I can get 100 on the final, so I’ve got that.
Anyway, my kiddo has not felt well the last few days. The moodiness that started at age 4 could be explained by this scary theory. Brain tumors, brain abnormalities, all of this fits. I just don’t know when I’m being a paranoid NICU Mom and when my Mom-tuition is right and I need to fight harder. I have an inkling that I have to fight harder right now. Something is not right with my sweet baby girl and I really feel like I’m dealing with myself when I was going through puberty. The attitude, the sneakiness, it’s all driving me slowly insane. And I’m not a terrible person. I mean, I hardly ever swear in front of my almost-7-year-old. I’ve sworn maybe 3 times that I can count. One time was when she wouldn’t take her seizure meds, and I just couldn’t beg or plead anymore. I lost my shit and screamed at her.
Is she delayed? Is this the terrible twos and threes, but starting at 4 and lasting until now?
I have a great support system…for me. As you can imagine, I don’t have a lot of friends who have kiddos that are in the same situation as mine. I was part of a group on Facebook, but had to leave because other women kept sharing their pictures of their angel babies. I understand the need to grieve, and that it’s helpful for them. But not everyone that has a micropreemie also has an angel baby. And while I understand it’s helpful for the mother to post the picture to grieve, it absolutely breaks my heart to see a dead baby. Probably because that could have been me. NICU PTSD is real, and she’s a bitch. Had I seen an angel baby while I was in the hospital, I would have lost my shit. Like, broke down and probably need to be committed lost my shit. As it was, I wouldn’t wish my experiences on my worst enemy. I expressed my concern that new micropreemie NICU Moms wouldn’t be able to handle the pictures of the angel babies, but I was outvoted, so I left the group. I believe that there is a time and place for that, and when someone is clinging to every ounce of positivity they can find, they don’t need any of it taken away. Some may argue that it helps prepare them for the worst. For me, it would have ensured that I was worse off than I was (which wasn’t that great to begin with), so I tend to side with how I would have reacted. First time Mom. First and only NICU experience. Maybe it gets easier? I don’t know, and I don’t want to find out. I will help any of my friends who found themselves in the same situation that I was in. I just know I can never be there again. Those were my darkest days and I’d rather not repeat them. I barely came through them, and remembering them is a bit hard sometimes.
So, right now starts a new week for me. For school and for my kiddo. I need to find out who she can see and when. What needs to be done, and how quickly it can be done. I’ve had a bad feeling about her seizures for a bit, so here’s to hoping some quick images can be done to rule out big, bad, terrible things. It’s highly doubtful, but one can hope. She had a 25% chance to make it out of the NICU. So she’s a fighter, but I’m starting to get tired. I’ve been fighting her whole life too, not to mention my life prior to her. Fighting is exhausting. Fighting for what’s right, fighting for what she needs, fighting for what I needed (which hardly ever happens anymore), but it’s all been done. I’m 38 and I feel like I’m my parent’s age. Like I should be all grey. Sometimes I don’t recognize myself in the mirror because I so infrequently look, and it’ll be a week or so that I don’t pay attention to myself.
Being a single Mom is great. The other parental unit made so much more work for me this weekend. I sometimes wonder if he does it on purpose. He called me from the furniture store and asked which bunk bed I wanted for her. I hadn’t cleaned out her play room to make it into a bed room… I had homework due (it was Saturday)…and there was zero communication about it beforehand. Then I spend 2 hours cleaning, and he calls to say he won’t make it because he didn’t get all the parts. That was a lie. He didn’t want to come down and I called him out on it. He called back (like I knew he would) and said that the warehouse was wrong and he had all the parts. Duh. Like I didn’t know that. So then he expects me to help him carry the solid wood staircase. Uh… I just got the okay to do non-impact exercise. Like yoga. I broke my foot last December. I can barely carry my own weight without tripping, let alone a 400 pound hunk of wood…
Anyway, it was a disaster. So when I say I’m a single parent, I’m really a single parent. He’ll babysit sometimes, when I need him to. But he doesn’t actively participate or offer help unless it’s totally inconvenient for me. Let me say this- I’ve been back in school since May. Every Saturday is a total shit-fest as I scramble to get all my work done and my posts in before midnight. I have a class Wednesday night and two on Thursdays. I typically do my homework after those classes, but sometimes I’m just too tired, so I have to wait. I take Friday off, for my sanity, and spend the day with my kiddo, or now it will be taking her to ballet. But Saturdays have always been a shitstorm. I drink copious amounts of coffee and soda (which I gave up 2 weeks ago now) and struggle to figure out what I’m doing. I hate the social part of classes- interacting with so many people I don’t know drives me crazy. My introverted self hates it.
So anyway. Don’t Google shit you’re afraid of before bed. Listen to Pandora Thumbprint. And read Robert Jordan and Brandon Sanderson.