I’ve been seeing a therapist for a few months. A therapist who specializes in grief. Last week she said I’ve graduated, but I’m not so sure I’m done grieving. I may never be done. But I have found hope.
Special-needs parents experience unique grief. Instead of moving through the regular stages and finding resolution, we can be struck with grief at any moment. We go through the cycles again and again.
I asked on my Facebook page what grief experiences have snuck up on them lately. They said,
- When my 6 year old nephew who is only 6 weeks younger than my son read me a book. My son struggles to approximate any word.
- My daughter is 10 and nonverbal, and she was so upset over something this past weekend. I couldn’t help her. She was trying really hard to communicate, and I just didn’t know what to do. Sometimes I feel like she’s slipping away from me, and I don’t know how to bring her back. I feel absolutely helpless. After that moment, I just cried and cried.
- It hits me at the weirdest times. My son is high functioning aspergers. Like when he comes out of the Jr. High alone at pick up and every one else walks out talking and goofing with their friends. When he acts younger than his age at church and all the other kids his age are helping and listening to the service. When my 10 year old says mom, why can’t he act like other big brothers!?
- My youngest is going to be graduating in May and is excitedly making plans to go off to college. My 20 yr old son with autism is home full time now and I need a caregiver if I want to do anything. It’s hard thinking of how different Alex’s life could be if he wasn’t autistic.
- Things hit me out of the blue all the time too…most recently was Valentines Day watching the children at his school excitedly exchange handmade cards and candy. Sounds petty but it was just another reminder of something my precious guy isn’t able to be a part of yet.
- Every single time I hear a child say “Mama”….how I LONG to hear that one day from my son.
Each of us could tell stories of surprising grief. (We can also tell stories of surprising joy!) When I run up against the wall of grief, I open to the Psalms. Psalm 107 is my favorite. Look with me at the hope it presents:
- For those who are lonely and have no place to call home, He “satisfies the longing soul, and the hungry soul he fills with good things” (v 9).
- For those in darkness, in the shadow of death, He “brought them out of darkness and the shadow of death, and burst their bonds apart” (v 14).
- For those who were fools and suffered affliction, “He sent out his word and healed them, and delivered them from their destruction” (v 20).
And the one I relate to most, to those who were going down in ships (those of us on a ride we didn’t know we had signed up for!):
“Then they cried to the Lord in their trouble,
and he delivered them from their distress.
He made the storm be still,
and the waves of the sea were hushed.
Then they were glad that the waters were quiet,
and he brought them to their desired haven.
Let them thank the Lord for his steadfast love,
for his wondrous works to the children of man!
Let them extol him in the congregation of the people,
and praise him in the assembly of the elders.”
We can follow this pattern when grief threatens to engulf us.
We can cry out. We can experience the peace He brings to our circumstances (even if the circumstances don’t change). We can thank Him for His love. We can praise Him with others.
Wherever you are in the cycle of grief right now, know there is hope. Even if you are like me and experience that cycle of grief over and over again. Each time we feel ourselves going down with the sorrow ship, we know God will meet us there and offer the hand of hope.
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I am a 54 yr old Autism dad to 2 boys, ages 20 and 30. I have recently been diagnosed with PTSD due to the trauma endured over the years with our two boys. My biggest fear is my boys being taken care of when my wife and I are gone. Our other kids have promised to take care of them but it is still worrisome for me. I know I should trust the Lord to take care of them. I love my boys with all my heart along with my other 8 kids.
i thought I was done with the grieving process since I had come to some kind of place of acceptance a few months ago and relative peace. So it surprised me when the emotions hit me out of the blue the other night when I got on the floor to hug my little guy. It was brief, but a reminder that grief is still right under the surface.
And then after 17 years they die…and it’s unbelievable how much you miss everything about them. I don’t wish her back because she’s finally free but my whole life, so engulfed in her care, stopped. No goals, no vision.
Two years and I’m finally starting to see life thru the Fathers eyes.
Cherish every day but don’t ever give up!
I have struggled with these grief cycles for almost 30 years and thought I was the only one. I have 2 children with Autism and 1 with other disabilities. The worst times for me are milestone events that other families are experiencing. Thank you for sharing your heart.
My husband recently read Psalm 107 to me when we were struggling with something difficult. It is a gem. Love you, Sandra!
I can really relate to the grief experiences. It helps to know I am not alone in an unusual grieving process.
Great words for hurting hearts. Appreciate your honesty and the truth that grief for us doesn’t end but it does ebb and flow…by God’s grace and His truth, it also changes and transforms us. Colleen
Thank you so much for sharing this. It absolutely blessed my heart today 🙂 I can relate to the part about longing to hear “Mama”. That’s the one I’ve wanted to hear for 18 years now, but if I don’t it’s going to be ok 🙂
Thank you for bringing this up. I feel like there is so much pressure to put on a happy face. I constantly feel pressure to be okay with things. Then grief hits me hard out of nowhere because I’ve pushed it down. If I even cry to my family they suggest I need antidepressants. I think we need to be allowed the space to grieve occasionally for the ones we love so passionately
Amen Sharla. I also feel like I have to be okay even when I am not.
So great and needed. Thanks for talking about this.
SO very proud of you for being a godly resource and speaking through your book in an area that is so needed, where there is such a void. Know God’s working through you will bless so many and I can see His blessing will extend to our special needs community here through your words. God’s blessings on you Sandra. It is a “club” we never signed up to join but He uses it to HIs great glory and He quiets us with His great love.