Today I feel like an emotional basket case! I haven’t blogged in a while and it’s not for lack of wanting to it’s because I didn’t and still don’t quite know how to express what I’m feeling! There’s so much going on in my personal life and I tend to have a hard time separating my feelings into categories! Family… check! Epilepsy… check, check! Instead they all mull around in my brain and make me feel overwhelmed and a tad over emotional!
Meghan has been doing great all things considered! I know I’ve mentioned to some of you about the remedial reading course she’s taking in order to be promoted to 4th grade. She loves her teacher and she seems to be progressing nicely! My only worry is they don’t have a nurse on staff or someone who can administer diazepam if she were to need it. Luckily we live literally less than a block away from the school where the class is being offered! Not that it makes it any easier, I stress about it constantly, but I can get there in about a min if anything were to happen! I am definitely going to approach the school board about making sure someone is available for those programs in the future.
Last week Meg had another seizure! It was upon waking and started out with the usual swallowing episodes, but quickly turned to what sounded like choking and she started to turn blue. I know these things have a tendency to go hand in hand with seizures, but it didn’t make it any easier to watch. I’m used to dealing with focal seizures that progress into leg and arm twitching, her blank stare, random noises, but the last few she’s had are much more violent with thrashing, tongue biting, choking sounds and it kills me! I know she doesn’t remember them, but I can’t seem get them out of my head and I’m petrified. I’m scared to death of SUDEP and the seizures not stopping! I feel like lately I’ve been in a constant state of worry and fear. Recently the doctor suggested and scheduled a PET scan and told me these are generally done to determine whether or not your child is eligible for surgery.
Surgery… another thing that scares the bejeezus out of me! Will it work? Won’t it work? How do I explain it to her? How the hell do I get through it and stay strong if she is a candidate? Will she come back to me the same way she went in? What happens if something goes wrong? What if it doesn’t work? What if it does?
STOP! Take a deep breath! You aren’t there yet! One day at a time! Stop living in the what ifs and live in the present! It’s hard to do sometimes, but I feel as though I constantly have to remind myself to do this! It feels like I’m always preparing for the worst. When we go out, in my head I’m thinking, where’s the safest place to take her if something happens so we can administer her rescue meds? What if someone tries to capture it on a cell phone?
Stress? Yeah! I feel as though I’ve come to know her quite well.
So on days like today, when Meg is at school and I feel like a complete and utter emotional nutcase, I realize I need to take a few moments to let it all out! I have to allow myself, at least for few moments, to take off the happy mask and release what I’m feeling from that box in my head labeled Place Emotions Here! It doesn’t make me weak! It doesn’t make me crazy! It doesn’t make me a bad mom! I think it allows me to process what I’m feeling and get my feelings into check so I can be level headed and taken seriously when it comes time to make decisions, meet with people or answer question. It also allows me to release all those fears and live in the present with my daughter, to laugh with her and teach her life lessons.
I’m not perfect, I’m still learning how to manage all the emotions that come along with epilepsy let alone the ones associated with just being a Mom! I can tell you I’m beautifully flawed and I say this because I know the emotions I feel come out of a place of complete and utter love for my child! I still get nervous and scared, but I’m also a fighter! I want my child to live and to succeed to the very best of her ability! I may cry and beat myself up every once in a while and I might have to learn through mistakes along the way, but I will do everything in my ability to make sure that happens.
Coffee, Chocolate & Xanax 
Wow! I totally feel like you’ve just stolen the thoughts out of my head and put them on the screen for me to read! I seriously could have just written that same post about my daughter Rachael.
She is also getting ready to enter the 4th grade (although she is in the ESE class so does not have to be reading on level to be promoted, they just promote her anyway… otherwise she’d still be in Kindergarten or 1st grade)
But we just had a PET Scan scheduled for this past Tuesday. I can’t even begin to explain what has gone through my head about the whole process. I more often find myself trying to just forget about the ‘what if’s’ otherwise I become paralyzed with fear and concerns.
Unfortunately we had to reschedule the PET Scan (not sure just when yet as we haven’t gotten the call) but Tropical Storm Debby caused the mobile unit (that we didn’t previously know was a mobile unit, I just assumed the equipment was actually AT the hospital) not to be able to make the trip to the hospital. So instead of getting her overnight EEG, then PET Scan and then MRI, we only did the EEG and will have to go back another time for the PET Scan and MRI. Doctor didn’t want to sedate for the MRI if he wasn’t going to get the PET Scan at the same time. Which I’m grateful for as she has almost always had a seizure after being sedated! I wish there was another way to do those tests, but there is no way they’d convince her to remain still… She also has Autism and ADHD, so just getting her to comprehend that she must be still for the test would be difficult, and then impossible as she rarely remains still when she’s sleeping let alone awake and wondering what the heck the noises and lights etc. are.
I’ve not even let myself think about what the results of the PET scan could mean. We’ve been asked about the Keto diet, which I think at this point in her life would be impossible to implement. And then the implant… which I just can’t wrap my head around because it’s only effective in about 50% of candidates the doc said… and if not effective for her, they just leave it in! Too much to think about right now I think.
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I’m glad it resonated with you! Meg’s PET Scan is scheduled for late July and like you I haven’t fully processed what it could mean! We usually sedate for MRI’s so we’ll be doing the same for the PET Scan, but she usually does well with that, for her it’s more the nervous anticipation of getting there and what to expect. Where are you in Florida? wWe’re close to Tampa! Luckily we managed to avoid the flooding, but can’t believe how much flooding we had with this small storm! I hope everything goes well for you both, feel free to email me and add me on FB if you like! Take Care!
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We’re in Bradenton! So not far from you really. You know I can’t remember now how I came upon your blog but I don’t think I knew you were local around here. But yeah, we had some flooding on our road, but that happens nearly everytime it rains a lot or for a long time. But no damage or anything here which we were thankful for. But just made our commute to and from the hospital difficult with the Skyway being closed we had to go the long way around.
It wouldn’t have been so bad if the ‘hat’ hadn’t started to come loose and have to be put back on in the middle of the night. Then they wrapped it so tight that she cried that it hurt every few minutes from 2am to 6:30am when she finally feel back to sleep.
My biggest frustration with the storm was the fact that I didn’t know that PET Scan had to come to us. LOL If I’d realized that prior to going in, I probably would have just rescheduled ALL of it. The overnight EEG was a nightmare for me. Rachael has sensory issues with her head and doesn’t like people messing with her head.
For some reason I’m not finding your name or follow link for Facebook right off here, but if you want to add me I’d be happy to accept the request (I’m Theresa Seibel Emans on FB)
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Oh I hate when they wrap their head to tight! Meg has two scars where they wrapped it so tightly on top of the leads! I went ahead and added you on FB! I’m glad you didn’t have too much trouble with the storm! I’m glad to meet you!
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Kirsten honey, you are doing a fabulous job raising your daughter, keeping her safe – doing more than most moms that I know – all that while keeping your composure doing so. If you need a little “psychotic break” girl take it! Aint nobody gonna fault you for
that!! Matter-of-fact call me next time and I will come over and show you how it’s really done!! I love you sis!
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Ha ha! I would love you to come give me that tutorial! Thanks Ron! Love you too! x
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Babe, I feel for you. I almost cried while reading it because I always have a special spot in my heart for Meg, ever since I got to know you. I know and believe that you’re THE bestest mom she can ever have because you put her first in your mind.
Do try to relax and be calm. You are the hero that Meg do not wanna lose. *sobs*
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Let the love within be your strength, and may the windows to your soul see what you are looking for. My prayers are with you.
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