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Adapting to the HIE Journey

October 26th, 2021  | News  | Self Care

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Some say it’s a grief journey, some say it’s through trauma… the journey with HIE is like no other. It is a multi-layered and complex journey that weaves grief, trauma, adaptation, and other ways to pick apart the experience in the most unexpected, heartbreaking, hopeful, and unimaginable ways.

Recently, we were introduced to Nancy B. Miller’s adaptation stages, and so much of it made sense to talk about the various ways families adapt in this unexpected journey, and why when a new diagnosis or speed bump pops up, that some of this is circular vs. linear.

Survival

What you do to keep going when you are feeling completely overwhelmed because something totally out of your control has happened and taken away your child’s equal chance at life, calling into question your expectations.

Emotions: Denial, anxiety, fear

• Denial: Serves a purpose to keep us from being overwhelmed by all that is happening and all that could happen. A space to ease into a whole world we didn’t expect to be in.
• Anxiety: Can I handle what is coming my way?
• Fear: Who or what will I have to fight?

Searching

In searching, we are looking at two different kinds, inner and outer. We are looking at what we will do with this experience, and does this align with who we think we are and who we want to be, as humans, as parents, and for our children and families. This sometimes can be known as the “fix it” stage… furiously seeking anything and everything to “undo” what has happened.

Inner searching: What does this say about me? How does this impact my identity, the identity of my child, my family?Outer searching: What do I do about this?

Emotions: Guilt, shame, depression, anger

• Guilt: Is there anything good about guilt? It’s limited. It makes us aware something is not the way we think it should be.
• Shame: If you feel self-loathing, that’s shame. Parenting is a shame and judgement minefield. Am I doing enough? (It is always enough.)
• Depression: Know the signs and symptoms – withdrawing from others, apathy, loss of interests, exhaustion, chronic discouragement.
• Anger: Looking for someone to blame, being irritable, projecting anger on others. Upside? Energy producing. Downside? Messy, and can blow up relationships.

Settling In

This is the place that we work to get to, as individuals and as a community. This is when people start using family-centered language vs. the individual. Coping through humor is common, and taking things lighter as acceptance comes that there is still much good to come.

Emotions: Hope, acceptance

• Hope: is a function of struggle. Doing the work to process the struggle gets to the other side. Your best possible life is there, it just may not be what you thought originally, but there is good to be found.
• Acceptance: Finding peace and a way forward with the struggle. Appreciating what IS good, feeling the depth of the experience and the unexpected good things that have come along with the struggle.

Separating

Finding the appropriate amount of independence, leaning in and out of the community that we worked through the above with. Thinking through identity and processing yours and how it may have been intertwined with your child’s before, and where those separations may be now.

Emotions: Independence, Confidence, Discomfort, Identity Processing

• Independence: Feeling a reset of boundaries or belonging to a community or support
• Confidence: Feeling empowered in the journey, strong in this moment and having the ability to see how far you’ve come in your journey.
• Discomfort: Growth and change can be uncomfortable. It can and does shift relationships, boundaries, and support systems.
• Identity Processing: Separating parent identity and independent child and self-determination – “Special needs parent” vs “Parent to a child with a disability/difference/diagnosis” vs “Parent to Max”.

Wrap Up

Everyone passes through these periods in their own way and at their own time. There is no “right way” to adapt. The tasks in each stage may overlap. They tend to have have more of a circular quality than a linear one.