Calm Amongst the Chaos

Mama of 5 seeking calm in the chaos

I’m finding it hard to be thankful for Lily’s seizures, which are off the charts right now. But I was challenged to find thankfulness in ALL things and not just the wonderful things like my family, friends, warm house (that we are totally upside down in but that is neither here nor there) and food to eat. And I am not thankful that Lily has seizures, not the act of themself. How can I? They come on when we are having fun. Then they make her whole body stiffen, then she has an odd smile while her body is involuntarily moving and she is clearly not “there” then when that finally fades and it is at least a minute or more, then she is wiped out. She passes out where ever she is. Her chair, the floor and if it is an environment she simply cannot sleep then she will just cry and cry and cry. How do I say thanks for that? BUT what I can do is say thanks God for being with her through it. And while it is hard to sometimes even do that, I have to dig further and see beyond the seizure itself and think about the things in life I would have never known if my precious baby never started having seizures.
I have learned to stick up for my daughter and myself along the way. I learned no is not a stop, just a fork in the road. I’ve learned I am far stronger than I ever gave myself credit for. I would have never met Wendy (my awesome Nashville friend), Tiffany (Emmie’s mom), Kelly, (Janelle’s mom), Carol (Kaitlyn’s mom), Geri (Nathanial’s mom), Linda (Rylee’s mom), Beverly (Cheyenne’s mom), Jean (best preschool teacher alive), Ginny, Marcia, Michelle, Sara, Tara, Mary, Marie, Ms. Amy, Sarah, Kris, Molly, Ms. Ashley, Kris, Marlo, Teresa, Sharon, Jennie, oh my heaven’s the list goes on and on! I know I am missing so many amazing wonderful people who have come and gone in our lives. People who have blessed me and enriched my life to an extent I would have never known. Sometimes I wonder if Lily we’re who I planned and not who God planned would I be who I am today. I don’t doubt my parenting skills, but I do worry about what my priorities would have been.
I’m no saint there isn’t one day that passes I don’t wish to see Lily and Andi Jane interact as sisters should. I wonder what it is like to just say everyone load up in the van and just go. I fantasize about an easier life all the time, but then wonder would I be as honored to be my kids mom? Would I appreciate the stories Andi Jane tells or the simple skill of Ollie feeding himself? Yes some days I feel sorry for myself but other days I am truly thankful to God for trusting us with Lily. So no I am not thankful for the suffering I have to see my daughter go through every single day, but I am thankful for the life we have because of her.

2 thoughts on “Thankfulness 5

  1. Bianca says:

    You know Kim I love how you can express yourself so easily through what you write. Sometimes the things you write are the same feelings that Im feeling.When I read your blog I find it funny and interesting sometimes sad, but I enjoy reading it.

  2. Nicky says:

    i haven't stopped by and caught up on your blog in awhile but thank you so much for writing this! we are still trying to get our claire tested for CDKL5 (insurance is denying it). but i can relate to the struggle of seeing the seizures and hardships daily yet being so thankful for the beautiful gift of our amazing daughters at the same time. claire sees both mary and tara weekly! small world. and we are doing a OT eval with someone named marcia. maybe the same person too?

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