Friday, January 16, 2015

SURVIVAL KIT FOR MOMS: 7 items I can't live without!

 So this morning A didn't go to school. It was EEG day. So we got the other five kids to school, homemade bottle rockets and backpacks in tow, and loaded everyone up into the vehicle. It is no small feat in the mornings because everyone argues about who gets to sit where. I see a seating chart in our future.

So Aiden and I went over to the hospital around 9:30am and got him checked in. We had to go to the "big" hospital because the machine at the children's hospital is broken. After waiting for about twenty minutes they called us back. Aiden buried his head into my chest. He was very concerned about this test. You see, he is just now old enough to really remember this. His last one was when he was almost four and he doesn't remember it. He hugged me tight and didn't want to get onto the table.

With some coaxing and a sigh of relief tinge technician finally got the leads on his head. 
This look... Says it... ALL

He was NOT happy.

But his doc said that if this test comes back ok, we may not have to have medication, which is what we've all been praying for since this journey started. No medications, no chronic terminal illness. FREEDOM to just be.

 Well the procedure started with the strobe, which always gives us both a headache and proceeded into me saying, "Just rest" like I have said so many times before.

The first 20 minutes of the hour long test consisted of me talking him through everything that was happening. Then, he asked me to hold his hands, so I took his little hands in mine and snuggled him for a bit. Then, I decided we needed some soft music playing, you see the goal is to get him to sleep. Which, Spoiler Alert, he never did sleep. But as I sat on a step stool by the bed with his hand in mine I told him a story that I just made up in my head. It was about Aiden and Lilly getting lost in the enchanted wood. It was a good story and it had a happy ending. You see, the wicked witch in the story was epilepsy, and the kids who escaped her clutches... Well that was us. 

This EEG, well... it was different. This time there is a light at the end of the tunnel where there hasn't been one for just a little less than five years. It makes me want to cry along with Aiden. This is all about to be behind us, and I feel somehow like I'm cutting off a limb. What the hell am I going to do without illness and "diagnoses" plaguing our daily life??. I wouldn't have wished the last five years of his life on anyone. And yet here we are... About to see a bright light shining over the horizon. But you see, we're not riding off into the sunset this is a NEW DAY. A new life has just begun. We are one family, one unit in its infancy, and we are just learning to walk.

SURVIVAL KIT FOR MOMS: 7 items I can't live without!

Here are some items I have needed as a mom in order to make it through these medical challenges with the kids:

1. God and a good Bible, a good translation (bible app is very good) If you use a hard copy, get one with footnotes... Like an NIV or a Study Bible. 
2. My family & friends, you know who you are! ❤️❤️❤️
3. Survival kit- includes but is not limited to a calendar, tablet, phone, tablet / phone charger (for those unexpected times you have to stay overnight when you just expected a test or two), an activity book for the kiddo, crayons, favorite stuffed animal, soft blanket (or other comfort object), a plastic bag to put soiled laundry in, a clean tee shirt for mom, a clean tee shirt for kiddo, a packet of tissues, current insurance card, cash, lip balm, hand cream, deodorant, and a travel tooth brush. 
4. Respite- be sure you take care of YOU.
5. Support Group- a group of individuals who can provide advice and support through the human side of an illness.
6. Patient liaison- most hospitals have one, someone who's been there, done that and can offer guidance on the financial / insurance end of things.
7. Peace- take time to breathe and reflect on what you CAN control, even when things seem totally out of control

These are just a few things that have helped me. What has helped you make it through a tough time with your child? Please leave a comment below!

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Until next time. Have a great weekend!

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