Grief Phases for Parents of Children Who Struggle
(Our children) are receptacles for rage and joy – even for salvation. When we love them, we achieve above all else the rapture of privileging what exists over what we have merely imagined. – Andrew Solomon
We all have dreams about who our child will be. When I was a kid, I imagined my own family would be as perfect as my “Sunshine Family” doll set: all smiles, all the time. I had no concept of adjusting my life to help someone else become who he was meant to be. None of us pictures (for example) having a son who is impulsive and unable to function in school, or a daughter who is withdrawn, sensitive and irritable.
When your child doesn’t turn out to be who you expected, it’s a jolt. You’re launched on an unplanned journey – and there’s no turning back. You just have to live through it and adjust to it, open your heart and your mind to new possibilities and trust that you will reach a new normal and be better for it.
Sometimes we put so much emphasis on helping our kids that our own suffering gets lost in the shuffle. But acknowledging our grief is the beginning of moving towards active acceptance. In her book Not What I Expected, Dr. Rita Eichenstein explains “acknowledging and dealing with your feelings – even the so called negative ones – is important not only so you feel better about yourself, but also so you can better guide and nurture your child.”
Grief doesn’t follow a linear path, it flows between phases, rising and receding in unpredictable ways. We each experience grief in our own way. But understanding all these feelings – and knowing where you are in the swirl – is helpful. Grief is hard, but it’s also necessary and good.
Here are the grief states / collections of feelings you might experience:
What it Is: Shock, disbelief and confusion are all initial reactions you may have.
Why it Happens: This is a defense mechanism that protects us from the intensity of our emotions.
What You May Think: “This must be a mistake.” “There’s nothing wrong with my child.” “We don’t need to see a professional.”
What it Is: Lashing out at others or a higher power, resenting your child, or blaming yourself.
Why it Happens: Anger is a way of deflecting our pain (or fear) so we don’t have to face it head-on.
What You May Think: “Why me / why us?” “The school just doesn’t get it.” “If only we had acted earlier.”
Closely related feelings include:
Fear – “How will I manage this?” “Is this forever?”
Confusion – “I used to be so decisive, now I waffle over everything.”
What it Is: Having an intense desire to take charge of the situation; solution seeking.
Why it Happens: By searching for ways to make things better, we feel like we’re being proactive.
What You May Think: “I decided I would do everything I could to help my child.”
Note: Solution seeking can create positive feelings, but can also wear us out – and make us susceptible to pursuing questionable treatments.
A closely related feeling is:
Guilt: “Why did I wait so long before trying a different treatment?” or “I love her, but I feel guilty that I don’t see her as perfect the way she is.”
What it Is: Feeling sad, lonely or guilty about your child’s issues; looking inward.
Why it Happens: You begin to comprehend the full extent of your new reality.
What You May Think: “Other people have no idea how hard this is.” “We’re the only family I know that has to deal with this.”
Note: There is a difference between this grief state and clinical depression. *
Related feelings include a sense of:
Powerlessness: “I don’t have what it takes to make this situation better.”
Disappointment: “I wish he were the athlete I always imagined he would be.”
Rejection feelings can also happen: “I wish I never had this kid.” (It’s normal to think this way on occasion, but if rejection feelings persist, please consider consulting a professional.)
What it Is: Coming to terms with your child’s challenges emotionally; focusing on the options and growth that may be possible.
What You May Think: “My child can succeed in her / his own way.”
Acceptance might sound like giving up, but it’s not. It’s about moving forward with an open mind and a sense of hope. It’s about letting go of old expectations so you can fall in love with your child as he or she is. In Far from the Tree, one mother expressed this concept beautifully when she said: “Children like ours are not preordained as a gift, they’re a gift because that’s what we have chosen.”
It might seem confusing, but even in the acceptance phase, conflicting feelings can coexist. You can accept your child’s condition, yet continue to pursue treatments; love your child, yet wish s/he didn’t have these issues; feel a sense of joy and optimism, yet still experience sadness; be worried about the future and still maintain hope. Embracing this paradox is healthy. A study conducted by Dr. Elizabeth Larson found that parents who accept these conflicting feelings gain a greater sense of control and improve their optimism.
For more on acceptance, check out this blog: Radical Thinking about Acceptance.
Tool: A Simple Grief Meditation
A brief daily grief practice like this can help you become comfortable with your emotions and facilitate healing. This meditation is adapted from the ‘Meditation on Grief’ in The Art of Forgiveness, Lovingkindness, and Peace by Jack Kornfield:
- Let yourself sit. Begin by sensing your breath.
- Take one hand and hold it gently on your heart.
- As you continue to breathe, bring to mind the loss or pain you are grieving.
- Let the story, the images, the feelings come naturally. Let whatever feelings are there come as they will.
- Scan your body – you heart, your solar plexus, your gut – and notice if there is pain. Don’t try to stop the pain, or fix it, or overthink it. Just let the feelings unravel out of your body and mind.
- Allow the whole story to be there. Breathe and hold it all with tenderness and compassion. Kindness for it all, for you, for others.
Book: Not What I Expected: Help and Hope for Parents of Atypical Children by Rita Eichenstein, PhD, explores the phases of grief for parents like us and explains what’s happening in our brains at these times so we have a better understanding of the emotional experience we can expect and how we can better cope.
Guided Meditation: This beautiful mindfulness meditation on “Encountering Grief” from Joan Halifax can help with any kind of grief you’re experiencing. Sometimes, just becoming aware of your grief can bring a bit of peace.
* If you have symptoms that are affecting your day-to-day life or relationships with others, please seek the help of a professional. If you think you need help but aren’t sure where to turn, the National Alliance on Mental Illness (“NAMI”) is a safe resource. They offer a free helpline that responds personally to callers, sharing information and referrals as needed.
Image: Art by M.C. Escher