The story I must tell…

I’ve been friending up on Facebook lately. I was at a writer’s conference a few months ago where I learned that if you want to publish a book, and actually sell that book, you need a platform. And social media is where it’s at. Since I’m usually a bit of a social media hermit, I started adding folks like crazy. I mean, what good is launching a book if nobody knows about it? As the new friends come rolling in, I do my best to just focus on the smiling faces, both familiar and new, and not oogle too long at their personal details, especially when it comes to old high school acquaintances, where the temptation for comparison is especially strong. That’s what Facebook was designed for, remember?  Comparison.

But research and personal experience both confirm for us that to do that is the kiss of death for our happiness, motivation, self-esteem. Case in point: most of the people I went to high school with have marriages, families, houses, mortgages, careers, businesses. I notice that they take vacations, some really great vacations. I feel a twinge of pain looking at these details. My stomach hurts and I feel a little small. I mean, I don’t have a house. I still live in an apartment on rental assistance. I don’t take vacations. I haven’t had enough money for that.  Until very recently, I qualified for food stamps. My life has not been “conventional” and so I have not landed in the same spot, in my mid-forties looking at the approach of an empty nest, as many of my peers. But in all honesty, I would not trade my current position for anything in the world. Not for a kick-ass house, a blazing hot beach in the Caribbean, or a pot of gold. You see, I put all of my eggs into one basket. All my focus, all my energy, all my resources have gone toward the accomplishment of a single goal. And now, what I have to show for all these years of living is a healthy, capable daughter.

“Um, so what?” you might think, those other folks have healthy kids too. Yes, but most of them started out that way. Mine did not. As a tiny baby, my daughter Haylie was brain injured. There were more than a few tense, terrible nights in a hospital where I kept constant vigil by her bedside praying that she live. And when she did, my prayers changed. Not only did I want her alive, I wanted her alive and well. Call me demanding, but that’s what I wanted. So, the prognoses did not sit well with me: learning disabilities, seizures, developmental delays, cerebral palsy, motor problems, impaired vision, hearing, and speech. None of that was ok with me. Neither was the suggestion that I just take her home, raise her as a normal child, and see what happens. Really? Just sit and watch and wait while this ticking time bomb inside my child destroys any real hope that she will ever have a “normal” life? Watch and wait for it to explode?

It turns out that passivity is not my strong suit. So, during those early years that I did not know what to do I became a pretty high-strung, irritable, neurotic mess. As the days and months turned into years, I did my best to focus on her abilities, her preciousness, her gifts, but the glaring truth, staring me right in the face every time I looked into those adorable big green eyes, was that she had a problem. A big problem. The seizures came more frequently. The doctors upped the meds or tried new ones. Her friends began to pick on her and leave her out as she became less and less capable of keeping up with them in every way. Finally, when I found myself in the hallway one morning, bent over her in a stressed out rage, shouting into her little face about god-knows-what (actually, I’m pretty sure it was about not changing clothes again for the third time before getting out the door for daycare so I could get to work on time just once this week in order to have a shred of hope I wouldn’t be written up again or, worse, fired) I just felt something click inside me. This can’t be it. This cannot be our life. No.

That was the morning my mom gave me the number to The Institutes for the Achievement of Human Potential.

“They can help,” she told me, “I’ve just spoken to a woman named Harriet and she says that they can help. Call them.”

I took the paper and huffed off, wishing my problems and my faults and the growing, steaming, stinking pile of shit that was my life and my parenting skills wasn’t so glaringly obvious. But call I did. And that was the moment my life began to change. That was the beginning of Haylie’s triumphant march down the long road toward wellness.

This is a bit of a spoiler alert, and I certainly hope it doesn’t affect my book sales, but I’m telling you now that she makes it. She makes it. She no longer takes seizure medications, and she no longer has crossed eyes, and she no longer has cerebral palsy, and she no longer has learning disabilities. She no longer has any of those labels in the long list slapped on her by the very well-intentioned mainstream medical community. She made it. She’s in the other room right now looking at classes she wants to take for her business degree with a double major in dietics and gerontology. Or maybe she’s in there planning another raffle to raise money for the maternal health care clinic that our friend started in the Ivory Coast. I don’t know. I don’t have to hover over her anymore, count her breathing, count her grams of protein to carbs to fat. I don’t have to remind her to do a respiratory treatment every four minutes or hop up on the brachiation ladder a hundred times a day. I don’t have to micromanage every minute to ensure that we can fit all of the components of the intense neurological treatment program into each and every single day, seven days a week, to make sure that her brain grows and functions as it should. I did that for years. All of my eggs, that basket.

And now, it’s in the past. Ahead, a bright new future.

So this is my “coming out.” Haylie and me savMy transition from that life as the struggling single mom of a brain-injured kid needing so much help (her needing so much help and me needing so much help) to this new life where I step into my power, share my story with the intention of helping others, and bask in the joy and relief and freedom of watching this capable young woman fly. I have the courage now, and the calling, to tell this story. To tell the truth. The whole truth. Won’t you join me?

still moist,
from cracked chrysalis
I emerge,
wings unfolding,
where to fly
from here?

Please feel free to leave a comment below.

And PLEASE like and share on social media.  The more people I reach with our story, the more children we can help.  And the more moms too.  Moms don’t feel well when their kids aren’t well.  That’s just a fact.  So, this is for the moms (and dads).

With so much love and gratitude,

~ Darci

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44 thoughts on “The story I must tell…

  1. Wow….(as I wipe a tear from my cheek)…..you nailed it !!! Can’t wait to witness the next part of your journey! Thanks so much for sharing……..I’m gonna call ya……….Love, Mom

    Liked by 1 person

  2. Darci, I remember a day, many years ago, when I was able to help with crawl therapy. I remember learning of all of the challenges you and Haylie faced. I was a young mother of two at the time and was so impressed by your strength, your determination. It was so much bigger than I think I could have ever understood. I think you’re amazing.

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    • Thanks, Carrie! Yes, I remember…your mama was one of my biggest supporters and helped me pattern all summer! Can we get her a link to this? I’d love her to see it and follow if possible! Much love, Darci

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  3. Amazing, inspirational story, Darci, and so well written…so far! Excited for the bright future ahead for you both. Can’t wait to read the whole book!

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  4. Wow!!! I’m so happy to say that I had the pleasure of meeting you! You are a special brave woman! God put Haylie in the right place and gave her the best mom!

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  5. What an amazing story so far Darci. Your life is a bigger success than owning a house, or taking fab vacations. Stand tall and feel proud, you’ve done a great job. Good luck to you both for the future. We are all rooting for you. X

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  6. If your book is as well written as this blog then I can’t wait to read it. School doesn’t seem that long ago and it amazes me how varied our lives have become. Yours was full of challenges and i am happy for both you and your daughter now that part of your lives is behind you. Wishing you both health and happiness!

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  7. Darci, life is not determined by houses, vacations etc. It is made by those around us. Your story is one of inspiration and hope and I look forward to reading it all.

    Liked by 1 person

  8. Oh Darci, since you were just a tiny girl, I’ve always enjoyed watching you just be amazing! That has never changed. I always sensed you had a special purpose awaiting you, but wasn’t quite sure what that would be. Then God gave his most special gift to you, he chose you, he knew you were the special mom for a special young lady! The story of you and Haylie is one of love , dedication, and hard work. But beautifully mastered. I am in awe of the both of you! Even though I’ve seen the movie, I can’t wait to read the read the book! I love you sweetie!

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  9. Oh Darci, since you were just a tiny girl, I’ve always enjoyed watching you just be amazing! That has never changed. I always sensed you had a special purpose awaiting you, but wasn’t quite sure what that would be. Then God gave his most special gift to you, he chose you, he knew you were the special mom for a special young lady! The story of you and Haylie is one of love , dedication, and hard work. But beautifully mastered. I am in awe of the both of you! Even though I’ve seen the movie, I can’t wait to read the book! I love you sweetie!

    Liked by 1 person

  10. I read once that, “we grow when we are challenged”. While many go and seek the next challenge, it seems you were handed a basket full. Your story is one of bravery and conquest in proportions only a very few people would truly understand. As a parent, and an RN, you have my respect and congratulations. I’m very much looking forward to reading your book.

    On a side note … I know after I moved away from Bloomington we did not keep in touch, but I did often think of growing up with you and the awesome imagination you possess. Thank you for all the fun times … And say hello to your mom for me from Angie Proctor.

    Liked by 1 person

  11. As a cop, I see what sucks about life daily. It’s horrors, it’s evils, all the things that make people give up. So many use the excuse of “I got a raw deal” and “not my fault, I can’t help it”. Few have your moment of “No, this can’t be it”, and few have the courage to change that. Your story will help others, it will help me to see a different perspective of some of the people and problems I deal with as I work. In other words, I will read your story and that of your daughter. In a heartbeat and with a smile. Incredible courage for you both ❤️

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    • Thank you so much…what a kind and insightful comment! I think that many of the people who have big problems in our society (certainly not all) have some kind of neurological disorganization that keeps them from succeeding and causes them to turn to some problematic adaptations just to survive. One of the reasons I am committed to doing this work and sharing our story is to also impart what I have learned about the brain so that more parents can raise healthy capable kids, so that we have fewer of those social problems. Our society does not really understand brain injury and therefore does not know how to deal with brain injured people. I’ll be writing more about this…

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  12. Darci, I read your piece as if it was the introduction to your book. Can’t wait for Chapter 1. I am so incredibly proud of you. That young girl I knew has become a woman I want to know better.

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    • Thank you, Susan, what a kind thing to say! If you “follow” the blog by clicking the link bottom right you’ll get all my posts to your inbox…I’ve got some book teasers coming your way! Thanks so much for your support!

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  13. Hey congratulations for your first ever blog and good start in the world of social media! Your story is very inspiring. Wish you and your daughter a great success! Love you loads. See you soon 🙂

    Liked by 1 person

  14. Darci,
    I step back into my power is a great way to put your success. I have not seen you in many years and wondered what happened to you. I feel your pain. My son was diagnosed with Autism at 5 years old. Though not life threatening, It has been a challenge everyday. I have caught myself yelling at him because I was so frustrated with the system that I just snapped!!! I am very happy to hear that your daughter is ready to live her life to the fullest. Single moms never quit!!! I cannot wait to buy your book!!
    Gina George

    Liked by 1 person

  15. Darci, congratulations on standing up to the negativity. My husband forwarded me your post because I too, am promoting my book, finally published after two bouts of cancer in the past five years. You are fearless in the face of challenge and much luck with your book sales, which is simply another challenge you will so successfully take on.

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  16. maravillosa!! brava!! write on….I am so happy for you, dar….this is a wonderful adventure. I love the line that, moms don’t feel well when their children don’t….now, that is truth, and truth is what it is all about….i’ll be glad to see more!

    Liked by 1 person

  17. Hi Darcy. Morgan just sent me to your blog, and I was moved. (I’m Melissa Doman’s mom, by the way). I did the well kid program as a single mom with my three daughters, so I bet we have a lot in common. I’m doing my MFA at Rosemont College. We have an event coming up next month called “Push to Publish.” I was wondering where you are with the business end of your book. You’re a very good writer, and I hope the book is going well. I look forward to hearing more about it.
    Teresa

    Liked by 1 person

  18. Hi Darci… I have already enrolled myself for the what to to course for my 20ths old son diagnosed with cerebral palsy… N after reading such a beautiful story of u n ur daughter I’m even more excited that I’m doing the right thing for my baby… Counting my days to attend d course can’t wait anymore.

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  19. OMG, someone who actually feels the same way… I don’t fit into the group nor do I want to label my child. I know there is more but haven’t been able to find the right program. I know my daughter can make it, I just need to know how to help her… Thank you for your rawness

    Liked by 1 person

    • Hi Nancy, I’m so glad this resonates…the right program is one that addresses the cause, the brain. This can be done at The Institutes for the Achievement of Human Potential (the link is on my resources page). You’ll hear more about them if you subscribe to my blog. Best to you and your daughter!

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      • Hi Darci,
        I haven’t been this excited in a long time. I ordered the book and I’m in the process of completing my course application to attend the class in April. I can’t thank you enough for sharing your story. I will keep you posted

        Thank you

        Liked by 1 person

  20. Hello Darci, your story is just great and gives us a lot of hope. I am also taking the course in Mexico in August and I hope I can take my daughter to The Institutes. It is only sad that hundreds of parents with brain injured childs do not have acess to this great treatment because it is so expensive. It is needed a lot of effort on our side to get this accomplished. Thanks a lot for sharing your story

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    • Hi Laura! I’m so glad to hear that you are taking the What to do About Your Brain Injured Child course at iahp.org! It is life changing, for sure! And I understand your concern about the cost…one of my biggest frustrations was that all of the mainstream treatments (that didn’t really help my daughter) were covered by insurance and yet this program that was working was not and we had to pay it all out of pocket. It was a huge challenge for me to raise the money. One of the things I hope to do with my writing is to improve public awareness of the effectiveness of this treatment, that actually targets the cause, and therefore increase support and funding for it. For one thing, once my book is published, I will use part of the proceeds for scholarships for families to do this. I hope you’ll follow me here so you can stay tuned in to the story =) best wishes!

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  21. I’ve recently seen your feature in The Institutes email feature and clicked on to read the rest of the story “in your words” and it was sitting in one of my website browser for weeks now. I’ve either forgotten or just had the time to read it. By 11:45pm last night I remembered and im so blown away at the similarity of our stories! I too get a sick feeling at the thought of my baby boy (who is 17 months just 4 days ago) at not being able to do anything and everything a “normal” person can do! I wish to hear more about your story and talk directly to you if it’s not a problem!? I’m a dedicated mom to make sure that my son will be independent if anything were to happen to me. He has all the same diagnosis and is doing so much better than what the doctors predicted! Thank the Lord!! Will you help my son and myself and show me what you did with your life to make that change? Thank you for sharing your story , Hanna

    Liked by 1 person

    • Hi Hanna, thank you for your comment! The first thing you need to do is to learn about the development of a child’s brain and how to provide the ideal environment for your child’s brain to develop. The place to start would be the What to Do About Your Brain Injured Child Course at The Institutes for the Achievement of Human Potential. The recommended program could be slightly different for children with different types of problems but the general idea is the same: treat the cause, the injured brain. There is so much we learned at that course that I began using with my daughter immediately that made a big difference for her! You will also learn about the ongoing options for help at The Institutes, which is where I learned how to make my daughter well. I will be telling my story bit by bit and adding important information as I go…I hope you will subscribe to my blog so that you continue to get all my posts directly to your email. Big hugs and best wishes to you and your son!

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