I do not need to explain fear to you. You live with it in your head and heart. You put it under your pillow to sleep. You carry it in your pocket during the day. Sometimes you forget it and this scares you, too.
I know you will not let it leave you because you think it protects your child. It is part of you “due diligence” protection plan. The armor that is supposed to protect you both from harm.
I will not suggest removing your ‘Mama Bear’ ensemble. But let’s evaluate the amount needed and see if we cannot pare down those defenses to an effective, managable load.
First, your seizure bag. Is there a blankie or two, a bottle of water, several snacks, a change of clothes, wipes for drool, headache meds etc.? What else are you lugging around in it? More outfits for different moods. Snacks for your groggy baby and the crowd that shows up? Hair brush, hair accessories? You are not going on vacation. You are prepping for a three-minute emergency. Lighten that load.
Next, your purse. You have needed numbers stored in your phone..but what if your battery dies or your phone gets broken or lost in the ruckus.? New fear now foiled. You need several written lists that you can pass off to help while you talk to the doc or EMS on your cell.
About EMS they know alot. I am always glad to see them. YOU are still the mama. They are there to assist, NOT take over. Do not be bullied by EMS with EGO.
Okay. Now let’s talk about that fear in your pocket that balloons into a beast. We cannot stop the ballooning, but breathing squares will keep you steady. Look that up and practice at red lights and waiting in the school car line.
Now look in that pocket. How heavy is that fear. From zero to ten? What is your constant level? If it’s an 8, 9 or 10 get a therapist..today. Do not be a Cortisol Queen. It will eventually cause health issues. Then who will will take care of you and your child?
Take out that fear when you are alone. Sit with it quietly. Get some paper and write down everything you are afraid of. List it ALL. Start with your child dying of SUDEP. There it is! Your number one. Name it and claim it. Keep listing until you are empty.
PAUSE
Go back to that list…when you are ready. Cross off all threats that are totally not in your control. Why carry those in your head? Then study the new shorter list.
How can you lessen your fear? By being prepared. Take CPR. Write instructions and phone numbers and make copies to give to any care givers and family. Keep your phone charged. Assess when you are for an escape plan if an emergency. Middle of movie theater. NO. Sit near the aisle.
Get that fear level down as low as it can go. Get real about the load you are lugging around. Do some more breathing squares. Trust me, they work. Panic helps noone.
You cannot walk around with a level of fear over 6. Aim for 5 and give yourself that extra point for all the uncertainty you must handle.
Do this for you. PLEASE
This is your life, too.
Seizure Mama/ Flower
Seizure Mama and Rose 