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gillian marchenko

Author and Speaker

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Special needs grief in parenthood, Chicago Special Parent article

08.06.12

Special needs grief in parenthood

Parents of children with special needs, do you struggle with recurring grief?

If so, check out my latest article at Chicago Special Parent about Chronic Sorrow. Here’s an excerpt:

The idea of chronic sorrow doesn’t sit well with me. I want closure. Isn’t it bad parenting to grieve a child standing right in front of us? We want the world to love and accept our children. If grief presents itself over and over in our lives, does that mean we love them less?

The answer is no.

Parenting a child with special needs involves a tightrope tension, an almost mystical dichotomy. I love my daughter more than breath, and yet sometimes I grieve, not who she is, never who she is.

I grieve the child Evangeline is not.

Read the rest of the article here. And I’m new at the magazine, so I’d love a like or a comment there if you don’t mind.

The article also highlights 10 tips for managing chronic sorrow.

I’d like to know, have you experienced chronic sorrow in parenting children with special needs? Tell us about it.

Did you like this? Share it:
  1. […] old now, and I am happy to report that once my time of grief over the child I expected dulled (I have to admit, it sneaks up on me here and there still) I’ve learned that having a child with Down syndrome doesn’t mean that life is less […]

  2. […] As a parent of kids with Down syndrome, I don’t feel like I am allowed to talk about the struggles, because that somehow means I don’t love being Polly and Evie’s mom. […]

  3. […] made it difficult to reach out for support. Guilt held me back from allowing myself to grieve, actually prolonging the […]

  4. Susan J says:

    I have raised 3 kids with ADD, depression, anxiety and one has chemical dependency issues. They are now adults. I’m an RN, and my specialty is pediatrics. I have 32 years of experience working with children and families, many with developmental disabilities.
    Ten years ago our oldest was diagnosed with bipolar disorder. She has a good life, married with kids and working part time. Our middle child is an RN also, and doing well. Our son,24 is in great pain right now, abusing alcohol to help him cope. He is in rehab now, in his second week.
    My husband and I have been together for many years, and we recognize the chronic grief we live with everyday. It’s especially difficult right now because our son is self medicating with alcohol, and resistant to psychiatric care.
    I have done a fair amount of public speaking on this topic, trying to help church staff members understand what we experience. We grieve as we struggle to get our kids through school. We grieve the loss of friends who don’t want to be around our “difficult” child. We grieve the financial strain of paying for the extra care our children need. As a couple, we grieve the lack of time and privacy most people our age have. The list goes on and on.
    I have used guided imagery by Belleruth Naparstek (Healthjourneys.com) and found this helpful as I grieved our daughter’s diagnosis of bipolar disorder. My faith is helpful, and many people pray for us. Some days are harder than others. Both my husband and I stay on an antidepressant to help cope.
    I wish I had some magic answer, but if I had to point to one thing that helped the most, it was listening to guided imagery twice a day. It provided a little mental break from the negative thinking that I had going on. I also utilize my pastor for assistance, too.
    Now that we are further out in the parenting process, I find satisfaction encouraging other parents who are struggling with the early years.
    The chemical dependency issue with our son is new for us, and we have utilized Alanon which has helped some. It’s hard when there is an underlying developmental and mental health issue involved.
    Best of luck to you.
    Susan J.

  5. […] As a parent of kids with Down syndrome, I don’t feel like I am allowed to talk about the struggles, because that somehow means I don’t love being Polly and Evie’s mom. […]

  6. […] As a parent of kids with Down syndrome, I don’t feel like I am allowed to talk about the struggles, because that somehow means I don’t love being Polly and Evie’s mom. […]

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