So, you’re going along with life, enjoying the “normal” that we all sometimes crave, and suddenly it bites you in the rear. Grief. That sorrow for things passed, melancholy caused by an empty space in your heart.
Courtesy of Ambro via FreeDigitalPhotos.net
True, we all face that mourning when we first realize something is wrong, or our child is first diagnosed, or when an injury changes our child’s life forever. In those times of life people will support us for a time in our sorrow. But once we have worked through that grief, we expect to have a floor under ourselves again. We expect life to move on, move forward, and to have closure with that sadness.
But it seems to me that special needs is the gift that keeps on giving when it comes to grief.
I personally hate it because of the discomfort. I call it “going back to the grieving place”. I am usually dragged back to that place I despise at a time when I least expect it. The sorrow can be brought on by life’s sweetest moments as well as life’s worst. For instance…
- My son having a major bleed where he needs to be hospitalized makes me grieve afresh.
- Slowly looking through old photos of my now teenage children when they were little can bring tears to my eyes, wondering how we ever made it through all of the challenges.
- Noticing the increasing differences between my Aspie daughter and her neurotypical peers as they mature and she remains the same breaks my heart wide open again.
- Hearing that my eldest daughter sat out of her gym class because of her joint pain saddens and frustrates me. We still don’t have a definitive diagnosis or adequate treatment for her.
- Life transitions where we need to train a new educational team always tends to leave me melancholy.
We parents spend so much of our time and energy working on acceptance, inclusion and normalization for our children. It seems that when we are at a crossroads, we are once again forced to face the fact that our child is not like the typical child we once dreamt of raising. Certain things put special needs or chronic illness right in-your-face all over again. We must again admit that we are broken and imperfect as parents, in need of help. Like a tearful toddler that has once again fallen and reaches out for its daddy, we cry out to our Abba Father in hopes of comfort.
Know that this is normal. Grief is a journey, a process. Every person does not follow the exact same path. It often feels more like a maze or labyrinth than a straight A to B voyage. That’s the nature of loss.
I searched God’s word to offer you an example of grief revisited (since we KNOW there is nothing new under the sun). What I ran across was Jacob’s sense of loss from Genesis.
Jacob tore his clothes in grief, dressed in rough burlap, and mourned his son a long, long time. His sons and daughters tried to comfort him but he refused their comfort. “I’ll go to the grave mourning my son.” Oh, how his father wept for him. (Genesis 37:34-35, MSG)
What this tells me as a Christian is that such mourning has existed since the beginning of time. It also tells me that there are occasions when the load is so heavy, we, like Jacob “go to the grave mourning” or find ourselves revisiting sadness over certain things for years.
When you find yourself in the grieving place once again, dear parent, be gentle with yourself. Recognize it as a predictable part of raising a child with special needs. Allow yourself time and space to work through your feelings. Also, know when and if your sadness needs the additional help of outside resources like a counselor.
Revisiting grief may feel awful, but if we know that it is just a necessary, passing phase, we can feel more reassured. It helps to know that we are not alone on this journey.
For further reading: Guthrie on Sad People, Safe Churches, Collin Hansen, The Gospel Coalition, August 4, 2010; States of Grief for Parents of Children With Special Needs, Kristin Reinsberg, MS, LMFT, AbilityPath.org.
Barbara Dittrich
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I loved the article, but I guess I don’t allow too much time to grieve, but lately it seems that dam I’ve have built-is crumbling. My son who was born healthy and so handsome was hit by a car when he was 2 while with his mammaw. It has been 20 long years of taking steps.forward and being pushed back miles with the traumatic brain injuries. My husband checked out of life (we are still married, by checked out he doesn’t want to help, he has been to one meeting the whole entire school years). He is the fun dad who plays video games and takes aniexety pills because he is so “stressed”. My heart aches so much, I pray but lately I feel like i just need to burst, I live far away form my sisters but they have their own problems, my parents have passed and my husband has never tried to be a source of support. How do you be kind to yourself when there isn’t even time to breath? But something us about to break from the load. I tried counseling, we talked about my marriage..the counselor.said she had just lost her husband the year prior,’so I closed down..How could is possible say what is truely on my mind about my husband when she is mourning hers…anyway sorry for the long comment..I guess what it comes down to is I am afraid to break, I am afraid I won’t be able.to recover, my son needs me, my daughter and new granddaughter will need me..My hearts desire is to live past my son so I can watch over him and nobody will hurt him…:'(
Oh, Andrea, my heart hurts just reading your story. Please know that you are not alone in these difficulties. Aside from God being with you every step of the way, He sends you people to uplift you. The Side-By-Side Parent Mentor Groups my ministry leads is full of moms who share these same heartaches. If you have an interest in learning more, please feel free to e-mail me at barb@snappin.org. Until then, may the God of all comfort and the Father of compassion soothe you with His love.
Boy, can I relate to this. I was born with my disabilities, but wasn’t diagnosed with some until adulthood. I was born partially sighted but lost my sight over tiem. Then in September of 2013 I had surgery that could’ve restored some of my sight but didn’t. Little things bring me back to the grieving place re my blidnness, like needing a picture for a blog post but knowing I’ll never be able to see pics.
I also have autism which was diagnosed in adulthood, and have mild motor deficits which don’t have a diagnosis (maybe was diagnosed with mild CP or dypsraxia as a child) and a mental illness diagnosed in adulthood. I realize more and more that titme passes by, my age peers are starting to get families of their own (I’m in my late 20s) while I will likely always need some care and not be able to suppor tmyself let alone a family.
I sit here almost crying as I write.
Oh, Astrid. Sending you a virtual {{{HUG}}}. Those ARE things to grieve about. And as I stated, each new phase and stage can reintroduce that mourning. The sense of loss is real. Please be assured that you are not alone, and there are so many of us walking this journey alongside you.
Barb,
Thanks for giving parents permission to grieve their children’s special needs situations as often as they need. My child is whole and healthy now, doing very well, and I still grieve what we lost when he was whisked 750 miles away for surgery at birth. Friday is his birthday, and as much joy as the day will bring, I will grieve for our baby who lay on an operating table instead of in our arms that day.
Stopping by from the DifferentDream.com Tuesday link share.
Jolene
Thanks for sharing your heart, Jolene. I feel the same way when our son’s birthday comes around because there was so much trauma at birth.
Feeling a lot of grief lately when my almost 10 year old with hemophilia, ADHD, ODD, and muscle tone issues was just diagnosed with aspergers two weeks ago. I think I cried for about 2 days. He also has an aspie older brother with Tourettes and a younger sister with medical issues from an extended NICU stay and problems during toddlerhood.
Oh, Jen, I am praying for you as I write this. Like I said in this post, be gentle with yourself. You NEED to grieve at a time like you are in. While I don’t know your exact journey, we also live with hemophilia, Asperger’s, severe ADHD, severe allergies, asthma, anxiety disorder, and some unknown joint arthralgia between our 3 children. It can all be so overwhelming sometimes. Feel free to get in touch with me through any of the venues listed in my bio. Take comfort in knowing that you are not alone in your challenges.
Barb, amazing, amazing post. Thank you!!!
If anyone could write on this right now, you are the girl!
Thinking of you and smiling! Colleen
Thanks, Colleen. I’m sure YOU could do a handy job at writing on this topic as well. As I continue to say, we’re all limping to the finish line arm-in-arm together.
Grieving is definitely an ongoing journey. It crops up in the most unlikely of places when we least expect it. I’ve found I need to face it instead of avoid it. Embrace it. Do whatever I need to in order to get through it (cry, scream, punch something, etc.). Then get over it… until it hits again.
Absolutely, Kerith. Your comment gives me more of a visual to handling this grief: We need to ride the waves rather than thrash about fighting them. Grateful to be walking this journey with parents like you!