How are you?

When she’s not okay, I can’t be…

A simple question I’m asked every day. Each time I answer with a minute to minute response, and depending on who’s asking it’s usually always sounds like, “good, and you?”

Each day I’m surrounded by happy children as I teach 24 loving six and seven year olds. They make me laugh, I love seeing the wonder in their eyes as they learn something new and my cup is filled over and over again as I am reminded of how important my job is (especially now).

Nature is all around me, and I see the beauty in life. I hear the birds singing, see the flowers bloom, feel the gentle spring wind brush against my skin as I lift my chin up to the sunlight to soak it all in.

I have other mom friends and friends who I can trust, who can support me when I need it, and I can return that support. My circle is small, and I am thankful for those who show empathy, don’t friend out of pity but do so because they love us.

My faith has never been stronger, my love for God strengthens every day. The closer I become to understanding, the more I am reminded of faith. I have faith in that I don’t need to know everything. I don’t have control, and all control is in His hands. I don’t need to know, I need to trust.

My home is filled with happiness, a nice roof over our heads, sticky fingers always needing cleaned, messy crafts, spills, stains, laundry baskets, an abundance of toys that hurt your toes and food on the table.

I am surrounded by the most loving supportive family. My mum, dad, sister, and in laws are all loving, caring people who would do anything for my children and my family. All show their love in different ways but still lots of love. My husband has been the love of my life for 23 years. He is still my best friend to this day. He is the only person on this planet who truly knows (almost) my answer when asked “how are you?”

So, I’ve started to ask myself, if I have all this, why. Why is there a deep sadness that lingers in my heart and soul EACH AND EVERY DAY?Why behind my smiles and my laugher are there tears daily? Why when am I happy, am I also a little sad? Why when I take time for myself am I also guilty? Why do I always have a lingering uneasiness deep down? Through many years and many different opinions I have finally realized it is because I AM NOT OKAY. Some may say oh that’s a bout of depression, anxiety or some other clinical term but truth is, it’s not. Trust me when I say, I know the difference. I live in a permanent state of worry. Sometimes my worry isn’t there, hidden away from others. Sometimes out in the open, close by, and other times it’s right there on my shoulder for the world to see. I hear the enemy (whomever you believe that to be) tell me daily I can’t do, won’t do it, don’t even try, crawl back into the worry hole and STAY there. Yet, every day I swat those stories away, erase them from my todo list and get on with it. Sometimes on the worst days I have to crawl and pry my way out of the hole to fill it back in hopefully for good but, usually another day.

With time, I’ve realized this is okay. It’s normal. My normal. We have to stop telling ourselves we have to be perfect. When part of my heart is torn, it’s okay to feel all the feels. It’s okay to cry. It’s okay to share the hard days. It’s okay to NOT be okay. It’s okay to stop allowing petty insignificant situations into my heart to take up space I need for my own healing.

I want to do more. I want advocate for mother’s who feel this way too, I want to advocate for those who can’t for themselves, I want to be a loud mother who is heard and who makes change happen. I am TIRED of there being no “other options.” I am tired of hearing we all have our challenges. This challenge can be healed and fixed. There is not enough funding to support doctors who get close to curing this condition. They literally get shut down and research stops. I don’t know what it is, when it will happen but I’m now moving on to figure out what this looks like. Mark my words, change is coming and team Ailbe is on the rise. Who’s with me?

I will rally, because when’s she’s not okay, I’m not okay.

My precious child. Ailbe age 10. Her seizures present like this right now. She can talk through them. Her breathing changes, she becomes nervous, uncomfortable and confused. Many of you know Ailbe’s story but if you don’t feel free to scroll down and read about her. I once shared her seizures before and I was asked why would I show that. HERE is why, I am sick of this condition going unknown and SILENTLY many suffer daily. Let us be heard. Let those affected be healed.

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