Hello all, this is a little bit more of a personal post than I normally do. I usually mention my girls, but don’t give away too many details about their little lives. However, this week, I am going to share about my oldest and some big stuff that is coming up. So here are the five reasons I am making it through this week without losing my mind.
Five Reasons I am Making it Through this week
- My husband is literally the most amazing person I know, he keeps me laughing as well as sane
- My girls bring insane amounts of joy and love into my life
- I have an amazing support system in my friends and family
- I try really hard to make lists, even if sometimes I add things I’ve already done, just so I can cross them off
- Not going to sugar coat this one, caffeine, lots of caffeine
Alright here goes…I have shared in the past that my 5 year old has epilepsy. She was diagnosed when she was 4 years old. She has had many different tests and one hospital stay in the past year. She has been on a few different meds and we found one that was working, in fact so much so that we hadn’t seen a single seizure in 8 months. However, that all changed as we were boarding a plane to Disneyland in December and she had a seizure. Her seizures, started happening again on a more regular basis and started to really impact her.
Having a petite that has a medical condition like epilepsy can be completely devastating, and maybe not for the reasons you might think. Of course, the obvious, it isn’t fair, but because sometimes it can rob her of experiences or change her experiences and that is a tough pill to swallow. Sometimes it is hard, because you want to keep your petites safe and you can’t, you can only do your best, and sometimes that isn’t good enough. Other times, it is that you see everyone else with their perfectly healthy children and you get a little jealous. But, that’s not helpful. Sometimes it is the guilt you feel that somehow you caused it, maybe it was the coffee you drank or the stress when you were pregnant or just faulty genetics – again not helpful. At times it is when people say I don’t know how you do it, or when I have a bad day I just think about you and I feel better, not realizing that what they are really saying is you’re my it could be worse person. Sometimes it is just that you feel helpless. Sometimes, the hardest times, are when the worrying and fears of it all get to you and you feel like crying.
With all that said, there are some things that I have learned over the past year. As parent’s we do the best we can. My husband is my strongest support and I am lucky to be in the foxhole with him. We fight and advocate and rally around our petites fiercely. We sometimes need to vent and finding someone who will listen and not try to solve the problem is invaluable. Having a support system is critical, whether it’s a group on a Facebook page or a circle of friends. Sometimes it is just trying to let it go and know that tomorrow will be another day that you made it through this one. The most important thing that I have learned through all of this is that my daughter is an amazing little girl, who is incredibly brave, compassionate, empathetic and smart; that epilepsy is something she has, but is not who she is.
Our petite is going into the hospital for a seven night admission. I am trying desperately to get everything organized and ready so that it is as smooth as possible. I will write more about the planning for such a long hospital stay soon.
5 thoughts on “Friday Five and a Personal Note”
You are an AMAZING mom! Thank you for sharing your story. I know this past year has had challenges, i hope this next hospital stay will provide some answers for you. All of you are in my thoughts.
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Thanks Kerry. It means a lot.
Let me know if there is anything you need! Well be thinking about you guys. Epilepsy is such a tricky thing to go through. Loves to you all!
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Thanks Chelle, we appreciate it.
Zoë is so lucky to have you and Chris as her parents. You are her cheerleaders and advocates, and are making sure she is enjoying her life despite the epilepsy. I’m so proud of you both. This hospital stay will be tough but will hopefully provide you with some answers. We love you.