I will never forget the day Ashana was diagnosed with STXBP1 & AXD....like almost every special needs parent I know- all I can remember thinking that day was one sentiment over and over...
“It wasn’t supposed to be this way...”
Pregnancy with Ash was complicated but we had faith... We prayed for health, and all the scans and tests assured us, we in fact-had a “healthy baby”.
When Ashana came into our world, and life was never the same! Our family was complete, our perfect precious girl..
Then the seizures hit, and all we could think was.....”It’s not supposed to be this way!”
Then the delays hit, and while other friends babies her age were sitting, then crawling, then walking, and talking....we were still praying she’d hold her head up without falling over someday...and again all we could think was...”It’s not supposed to be this way!”
And then the biggest blow of all, another diagnosis to explain all the symptoms and questions we had and hearing words no parent ever wants to hear....”Life long care”...... "Terminal". Our hearts screamed...”It’s not supposed to be this way!”
We’ve made peace with that day. With both of her diagnosis. We’ve made up our minds that how rare the mutation of these genes are....is just even further proof that Ashana was always meant to be! ❤️
I can’t lie to you and say that every day we wake up and find the blessings in all of this. Because honestly, some days are just plain heart wrenching. Some days I’m angry. Some days I don't think I can get through it. I dreamed of SO much more for my girl! It grieves my SOUL to ever see her in pain, to never know when seizures will come, to see her struggle, to know that she will have to fight ten times harder for the things the rest of us don’t even bat an eyelash thinking about!!
It tears her dad and I apart inside every day of our lives knowing and seeing how badly she she wants to share her thoughts and words that are stuck inside of her with the world, but can’t.
I think the biggest misconception about those who experience grief...is that after a period of time you are healed from it.
Grief never ends. Yes, the pain lessens over time. But more less...you just adapt, and keep fighting.
But some days-you just don’t have the fight in you, some days you grieve what was “supposed to be.”
Some days grief sneaks up on you completely unexpectedly when you are reminded of what won't be in this current world. We won't get to see Ashana off to school with her brothers, she’ll never ask me permission to go out to lunch with her girlfriends, so she can talk about school, or make up, or her sweet crush! I’ll never worry about her when it’s past her curfew and she’s running late. I’ll never wonder if that high school sweetheart could become my future son in law...because those are things my daughter won’t get to experience.
“It wasn’t suppose to be this way....”
This poem below hit home to us. “Welcome To Holland”. (See Photo)
Maybe we didn’t end up in Italy, like we were “supposed to”. But maybe Holland brings us joy and love like Italy never could have! ❤️
