The Truth about the Special Needs Journey

The Truth about the Special Needs Journey -

The Truth about the Special Needs Journey

In November, I wrote a draft for a book. I’ve meant to get around to editing and revising ever since, but I can’t make myself do it. There’s something inherently wrong with what I’ve written.

I have pondered this problem for months, trying to figure out how to fix what’s broken. (Which is impossible, since I haven’t been able to find the problem.) Today it finally hit me. The book, as it is now written, attempts to tell my daughter’s story.

That story is not mine to tell.

It’s also true that I can’t tell our family’s story. I don’t know the inner thoughts and perspectives of each member of my family.

The only story I can tell is mine. The only story I know inside and out is the one I’ve lived.

So I’m going back to that manuscript, and I’m going to revise it so that it does a better job of documenting my special needs parenting journey.

I have grown and changed a lot in the past ten years. I am not the person I was before our second child was born. I have learned a lot about myself, and I believe I am stronger, more compassionate, and more kind because of everything we have been through. I am better at setting boundaries, managing my time, and standing up for myself and my children. I am less selfish, more generous, more sleep-deprived (just wanted to see if you were still reading 😉 ), more health-conscious, and more patient. Would I still have developed all these characteristics if I wasn’t walking the special needs journey? Maybe so. But would I have developed them to the same extent? Probably not.

The journey is hard, but it is mine. The perspective I can share in telling our story is my own. The struggles, pain, joy, laughter, and heartache are mine. They have shaped who I am and who I’m becoming, but I see them only through my own eyes.

When you’re overwhelmed by all the medications, advocacy, case management, therapy sessions, hospital stays, and specialist appointments, remember the truth about this journey. It’s yours, and it is shaping you into an amazing person, even as your child’s journey is shaping him.

In what ways has your journey shaped you?

This entry was posted in Parenting, Special Needs. Bookmark the permalink.

5 Responses to The Truth about the Special Needs Journey

  1. Beth Mora says:

    Your post….your passion… brought tears to my eyes. I’ll be one of the first in line to buy your book. Your story will bless many!

  2. Mary Gemmill says:

    I hear you, and thank you for sharing this as it was helpful to me today.
    I agree, that our special needs children[ mine is 40] are used of God to mold us into who we are today.
    I look forward to your book, which will help many see the hand of GOD in their journey with their special needs children. We need such a book to help us focus on all the good God has wrought in and through us because of these children.
    I know I have great compassion for such parents because I’ve had such a child.
    Mine is nearly finished a doctorate, but has never worked and may never hold a ” proper” job. He has Aspergers.
    We face many challenges…mine has come home to live with me in my retirement because independent living drove him to drink as he was just not coping.
    He’s safe here with me and will stay until his studies are complete….but then what? I have no idea. I am thankful that GOD knows and I know He will tell me in the right time.
    God Bless you.
    Mary, New Zealand.

  3. Mardra says:

    Yup. I understand completely and encourage your new vision for your book. Claim your story and also the realization it’s your alone. It will make it more powerful for you and the reader, I’m sure. And honest too. :)

  4. How has my special needs parenting journey shaped me? It made me who I am and birthed a ministry for parents raising kids with disabilities and special needs. I wouldn’t trade it (or my son) for anything. Thanks for adding this post to’s Tuesday special needs link up.

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.