January 5, 2019 High Hopes

There’s a closed Facebook group I’m in that’s only for parents of kids with AFM. With a bit more than 600 members, we share advice, stories of hope, and a whole lot of questions with each other. Because this disease is so extremely rare, we lean on each other for support.

Last night I was so relieved to read a post from another parent asking the question I’ve been asking myself for what feels like forever now, “Why my child?” This mom expressed in this post all of the frustration I’ve been feeling myself but have been too ashamed to say aloud except to a handful of close friends and family.

I grew up believing I would do big things. I always told my dad I would graduate from UGA and work for Cosmopolitan magazine in New York, but I never even came close. I don’t even know if Cosmo is in NYC, but the point remains that I had some big dreams. Those dreams fizzled away as I battled an extremely abusive relationship that sent me on a course far from what I had imagined. It seems those dreams have only drifted farther away as the years have aged on.

Now, as I sit in the passenger seat on the drive to Baltimore, I wonder if the course will continue to take 180’s. How long will we be in Baltimore? Will it be worth it? Will life always be like this, not for me, but for Annadelle? Will she always struggle as she is now? It’s so hard not to question the future, especially when my track record of making plans and those plans actually falling into place are basically ziltch.

I don’t want you to think I’m Negative Nancy. I can assure you I have put an extra effort into staying positive these days, but I want to be transparent here. I started this blog for other AFM families to read and realize like kinda sucks for us, but there is hope.

So, in an effort to manifest destiny, I will declare now that our journey to Baltimore will be worth it. I know Annadelle will see major gains at KKI, as I have been trusting God to provide Annadelle with a full recovery in order to use her story as a testimony to countless others. There are hundreds of people praying for her daily- praying for complete healing, comfort, understanding, faith, happiness, and so much more- so how could she not be blessed? The word says what we ask for in prayer we will receive. I believe it.

I also believe God shows us His plans through little oddities all around us. Whether it be a quick conversation with a stranger in line at the grocery store or a few words that stick with you from your favorite novel, He speaks to us in ways we don’t always expect.

For me, His reassurance to stop questioning and just trust Him came in the form of a song on the radio. Panic at the Disco’s “High Hopes”

Mama said don’t give up, it’s a little complicated
All tied up, no more love and I’d hate to see you waiting
They say it’s all been done but they haven’t seen the best of me
So I got one more run and it’s gonna be a sight to see

Had to have high, high hopes for a living
Shooting for the stars when I couldn’t make a killing
Didn’t have a dime but I always had a vision
Always had high, high hopes

I guess I’ll take my own advice and trust God that He is working on Annadelle’s full restoration. I’m just going to sit back and enjoy the long ride to Baltimore as Annadelle plays on her iPad and giggles as she conquers another level of Angry Birds.

4 Comments

  1. So proud of you and you beautiful family Neeli 💕. Those of us praying on the sidelines while you are in the game is an honor!

    The Bible says to bear one another’s burdens. You lift so many people up around you with your transparency. It’s absolutely beautiful 😇.

    Chris is one lucky man, You are one lucky woman and Annadelle is one lucky kid to have you two as parents.

    The cheering section is going crazier than it gets in a stadium and the host of angels joining in praise is really moving things 😇

    Hang in there guys because Victory is on HIS Way 😇🤗💕🙏

    Like

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