Last Thursday, I sat in line to drop BubTar off at Pre-K for 30 minutes and no one came to help the kids out of the cars. BubTar is having a panic attack in the backseat.
"Momma! We OVERSLEPT. We MISSED school. There IS no school! We're late!! Momma!!!!"
I assured him we were NOT late and we did NOT oversleep, and confirmed this by gesturing to all the cars in line with us. "See all the cars? They wouldn't be here if we were late, BubTar. We're fine. It's okay."
I got tired of waiting and called the school office.
"Hello. My son is in the afternoon Pre-K class, and I'm in the drop off line, but no one is on duty. Am I supposed to walk him to class today?"
"Uhh ma’am today is an early dismissal day."
"So what line am I in?"
"It must be the pick up line."
"Oh my, I'm so sorry to bother you, goodbye."
It turns out BubTar was right after all. Early dismissal days are from 10:30-12:15. Normal days are from 11:45-2:45. We totally missed school. This was especially a problem, because I am a procrastinator. I was sending money for candy grams AND our portion of the teacher's gift that day. I was in sweats and was not going into the office dressed that way, especially after being the idiot who sat in the pick up line for half an hour.
Friday, Josh had a vacation day and he volunteered to take BubTar to school. It was another early dismissal day, which I had written into my calendar as being from 10:00-12:15. So we rushed around to get him ready for school (because we had slept in) and they rushed out the door.
Josh called 15 minutes later:
"Hon, what time did you say school started?"
"Well, his teacher won't let us in. She says it doesn't start until 10:30."
"Oh crap, can I not get ANYTHING right?"
"I'll just hang out on the bench with him until class time, okay?"
"Yeah, that sounds fine. I'm sorry."
"No big deal, talk to you later."
Five minutes later the phone rings:
"Hon, what is the money for?"
"Candy grams and the teacher's gift."
"They won't accept it. It's too late. The deadline was yesterday."
"OMG, what is wrong with me? I'm sorry...AGAIN."
"It's fine...we're still waiting for class to begin."
Five minutes later, the phone rings:
"What time is the party?"
"I wrote down 11:30-12, but you know how reliable I am, so I'd ask if I were you."
"Okay, I'll call you after I talk to the teacher."
At this point, I cry. I am ruining everything. It was the worst week last week, I was emotionally drained and had been preoccupied fighting for KayTar in a way I never should have had to. She had been implicated as the reason a family member had left their job. The school had published this information in a school-wide letter. They made my child seem like a burden, which she most certainly is not, and I had to fight for her. They sent out our private information. It was a long week. I was out of juice.
The phone rings again.
"You were right; the party is at 11:30. Get ready and have KayTar ready and I'll come back home and we'll all go together."
"I'm not going."
"I screwed everything up...we didn't even chip in for the gifts. I can't go."
"They accepted the money; the room mom said it was fine. Everything is fine now."
"But I still messed it all up...I can't go."
"I'm coming home now. We are going. It's FINE. I promise."
So I resign myself to go, but feel like a failure the entire time.
On Monday, KayTar had an episode that lasted for 8 hours. The pain was much shorter lived, only about 2.5 hours, which isn't unheard of. We kept expecting her to come out of it and we opted not to bother the doctor after hours, because there is nothing they can do to help her. We are out of options and tests. The worst was over in any case.
I emailed the pediatrician* about it yesterday and asked if we did the right thing. She replied saying "I don't know if you did the right thing by not calling. Honestly I would be scared myself if I had a child in pain that long." This made me feel awful. It made me feel like I had failed KayTar and wasn't concerned for her well-being. I don't think she intended it that way. I think it was more about letting me know that even she would be afraid at that point and therefore did not mind my calls. But after the previous week, it just felt like one more mark in the "Losses" column of my life. It felt like "Why aren't you more concerned about your child?"
It IS terrifying. But we have been told they are out of tests that need to be run. We have been told that there is nothing to help an episode once it begins only preventative measures and if they fail, there is nothing else to do but wait. So we waited. I held her on my chest as she writhed and cried. I cradled her and made "Shhh." sounds just like I did when she was a baby. I did everything I could to help her through. If these are going to be a part of our daily lives (or bi-weekly lives) then at some point we have to come to terms with them. I feel badly about calling the pediatrician when I know she cannot help. It seems a pointless disruption of someone else's life. We didn't not call because we are careless, we didn't call because we didn't think it could make a difference. The pain was not long considering our history, but the episode itself was very long. If the pain had continued longer than it had, I would have called regardless, but she was no longer in pain.
We exchanged emails, and every email after that I felt like I was losing more ground. She asked why I didn't cancel the appointment with Dr.Old Neuro. I did cancel it, through the hospital's automated system, but they have me listed as a no-show. She asked if I had a visit scheduled with Dr. New Neuro, because he needs to see KayTar ASAP, and I hadn't. He told me he didn't need to see her for a f/u until after the March MRI. I called to schedule one yesterday and the earliest appointment is July 6th. Not exactly ASAP. I emailed her and told her and the neurologist is going to try and bump us up much sooner than that.
The whole thing just seemed to confirm I am failing a lot more than I am succeeding at the moment. But the things I am failing at seem out of my control. I didn't KNOW Thursday was early dismissal. I didn't KNOW school started at 10:30 on Friday. I should have, but I didn't. That in itself is a failing. I didn't KNOW I should have called on Monday. I didn't KNOW that is what she wanted. I didn't KNOW that the hospital listed me as a no-show to an appointment I had canceled. I didn't KNOW I needed to see the neurologist before March. I didn't KNOW it would take 8 months to get an appointment with him. He didn't have me set up a f/u visit the last time I saw him. I feel like everything is slipping through my fingers before I even know there is anything in my hands at all. How do you catch something if you don't know it is falling?
*I love our pediatrician, and she has been NOTHING but wonderful and helpful to us. Rationally, I don't believe she was scolding me for anything. She was just reinforcing her total availability to us, not questioning my concern for KayTar. It was my predisposition to the sentiment that caused me to view it this way. She has been our savior at every turn.
What an impossible position you are in. In order to remain calm and supportive to Kay-tar, you have to cultivate a hopeful and accepting attitude - you can't freak out during every episode, because that wouldn't help her. But somehow you have to also retain the ability to freak out when it's necessary. And how do you know when it's necessary to freak out? You don't. You might be able to establish some parameters - i.e. call if the episode lasts longer than x minutes - but you can't anticipate everything.
It sounds to me like what happened the other day was that your essential coping mechanism worked a little too well - you disciplined yourself to remain calm, only to be told after the fact that you should have panicked, you should have become alarmed. There's just no way to "succeed" in this situation. And it doesn't sound as if your inaction has changed anything - it's not like there was something they would have been able to do.
As for the school stuff, one thing that reading blogs has done for me this year is to make me not AT ALL eager for Bub to start school next year. I know I'll be right there with you, forgetting things and missing deadlines.
What Bub and Pie said about KayTar - take it to heart. This was you trying to be a calm, good mama in a crisis for your baby.
Do you want to hear about me setting the stove on fire tonight for the second time this week? How about my forgetting that yesterday was pizza day at school and so my poor little kids had sandwiches while their friends had hot pizza? I'm sleep deprived, I'm rushed, I'm distracted. THESE THINGS HAPPEN. Don't beat yourself up - you're just normal and you're doing a GOOD job.
Oh, I am so sorry for what you are going through. I'm not sure I can say anything helpful, because you already expressed that this is out of your control, which I agree with. But I am glad you shared it with us and that I got to listen.
Although you feel like you failed, you know that this is not your fault. But it still feels crappy, considering it is concerning the most valuable people in your life.
You ARE a wonderful mother -- very nurturing, no doubt. Your daughter LOVES YOU. That is what matters. You are the one who has been there for her all along, and that is what she knows.
I have so been there and still am there. I can only tell you that us other moms going through the episode thing didn't call each episode either. It is such a helpless feeling riding it out and if you are like me you wonder...will this be the one that never ends? So the choice you made is same as many parents after going the emergency route and all.
It doesn't seem like the periactin is working for Katie. Have you talked about trying to get flunarizine hydrochloride? They perscribe it in Canada. I know one BPT girl took it with good success. Interestingly it's a calcium channel blocker. The periactin seemed to work well for Anika but we were going to purse the flunarizine hydrochloride if it didn't.
At our metbolic appointment they were so disappointed we didn't get her blood drawn. But I didn't know if she was regular sick or episode sick. Now I know it doesn't matter but I didn't but I felt like such a fool. It just seemed so obvious what we should have done after the fact but beforehand we didn't know so we thought we'd ask them. Sometimes you just can't know...But enough about us.
Don't beat yourself up too much. You are going through some difficult times and handling things as best you can. You can't always know what's right...just do the best you can.
Katie is lucky to have such a wonderful family to help her through this journey. And of course you are lucky to have her too.
Big cyber hugs to you.
One thing you are quickly learning is they don't make a handbook to go with our special needs kids. We have to figure it out on our own. And it's darn tough...especially when you have a typical child to take care of also.
You didn't fail, you're just still trying to find your way on this journey. And realize...YOU ARE NOT ALONE!
Your kids are loved and well cared for and that is all you can do. You will figure the rest out in time.
Try and relax and have a happy Holiday Season.
I wish I could give you a big hug... it all sounds so stressful and I certainly have times when I forget things for school, deadlines etc. The only thing that helps is a big diary that I put everything in immediately. If it isn't in the diary it doesn't happen/exist.
BTW, I agree with your interpretation of your pediatrician's comments - I think she was giving you *permission* to call her *whenever* you are worried etc. I don't think she was criticising your actions.
Oh, wow. You are such an incredible mother that I can't believe that that post was titled, "Failings". That's probably the rest of us on a good day.
I know that likely doesn't make you feel any better, but take heart...we're all human. I wouldn't worry about your pediatrician. One of the things about e-mail is that you can't always get things across. I think it's likely that she was not only saying that she was always available, but also commending your calm reaction.
I won't have much chance to visit over the next week or more, so I am sending you my best wishes for a Merry Christmas!
Are you feeling any better today? Merry Christmas to you and your family. :)
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