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Special Needs Parents: I give you permission

February 6, 2013 by Gillian Marchenko

Are you a parent to a child or children with special needs?

If so, I have a message for you today.

I GIVE YOU PERMISSION.

I give you permission to be tired.

I give you permission to cancel a therapy session.

I give you permission to feel weak.

When it comes to your child with special needs, I give you permission to allow a little grief to co-exist with other emotions like love and joy.

Why we need permission

Special needs parents, especially those of us who are people of faith, seem to make silent oaths for the sake of our precious children not to complain. We quietly resolve to make the world a better place for our kids, a place where they fit. A place where we fit.

And that’s right. If we don’t promote our children, who will?

But too often parents assume they can’t share struggles. No, struggles are bad, because people may think we don’t love our children. If we complain, people may look at our kids and only see disability, instead of the million other wonderful things that make them who they are. So we carry on, stuff down the difficult parts of parenting kids with special needs, and attempt to be what others assume are the best parents for our kids.

Friends. This is bad.

What happened to me when I didn’t think I had permissionhappy plain

I speak from experience. I parent four daughters, two of whom have Down syndrome, and one of whom was adopted from Ukraine in 2009.

After years of therapy, doctor visits, scary brain surgeries, hours of purposeful play, and the toil of bonding with my adoptive daughter, I hit bottom. For too long, I kept my struggles and fears regarding my children with special needs to myself.

And you know what?

I fell into a pit of depression. At one point, I didn’t even think Jesus could rescue me.

My life wasn’t working by just forging on, not taking care of myself, and not vocalizing “Hey, I love my children but this is really, really hard today.”

Giving permission

Some of the best ways I love my family and myself  are by verbalizing my struggles and asking for help.

So, today, I give you permission.

If you are struggling with your child who has special needs, I give you permission to say it outloud.

I give you permission to ask for help.

I give you permission to realize and own the fact that Jesus is with you in your pain. He knows how much you love and cherish your child, and he also knows that this path can be difficult.

When I open up about my struggles something amazing happens.

I cry “uncle,” and God whispers “peace.” “Gillian, what took you so long to give this to me?”

I call for help, and Jesus stands up on my behalf. “I’m here. I’m helping.”

I confess weakness, and He claims strength. “Oh, child, finally, you are starting to get it.”

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. 2 Corinthians 12:9

You know what? My vulnerability hasn’t caused my family to question my love for them and my tears haven’t resulted in judgement.

Asking for help and sharing my struggles have brought a deep sigh of relief, a hope for the future, and the validation I crave.

I’m a special needs mom. I love my children but sometimes it is really, really hard.

-Gillian Marchenko

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Gillian Marchenko

Gillian Marchenko is the author of Sun Shine Down, a memoir about her daughter Polly's birth and diagnosis of Down syndrome while the family lived in Ukraine. She writes and speaks about special needs, depression, adoption, and deep belly laughs and lives in Chicago with her husband Sergei and their four daughters. Most Sundays, you’ll find Gillian in the back row of the church Sergei pastors, bouncing a toddler on her knee and giving the older girls the look. The world is full of people who seem to have it all together. Gillian speaks up for the rest of us. Check out her website at www.gillianmarchenko.com.
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Latest posts by Gillian Marchenko (see all)

  • For parents who aren’t ready to celebrate Down syndrome during Down syndrome Awareness Month - October 7, 2015
  • Love pushes us to the front of the crowd, reflecting on a dual diagnosis - April 1, 2015
  • Letting go of self-sabotage on the special needs journey - March 4, 2015

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Filed Under: Gillian Marchenko, Grief Tagged With: Down syndrome, Gillian Marchenko, Grief and special needs, not alone, special needs

Trackbacks

  1. A Wish Come Clear » School Lunches (and the Path of Liberation) says:
    February 11, 2013 at 10:32 am

    […] what if we just gave ourselves permission to be who we […]

    Reply
  2. Special Needs Parents: I give you permission | Gillian Marchenko says:
    February 6, 2013 at 8:36 am

    […] how sometimes as we parent kids with special needs, we need permission to say it’s hard. Read the whole post here … It’s my first time there. I’d love for you to stop […]

    Reply

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