0 In Advocacy/ Brain Injury

The Grief Behind Brain Injury

ethan sitting and looking up
I miss who Ethan used to be.

His personality. The way he would monkey scoot through the house. The way he would spread his array of shoes all over the living room. His “yeah!” and “hey”. The way he would interact with his brother. Really, everything that made him, him.
We are just over 1-month post brain injury and have learned that there is a grieving process that comes with it. And it’s profound. After Brain Injury, people must grieve who they were, and the family also grieves the person who is no longer there, albeit physically present, which feels strange.

When you think of grief, you most often think of someone passing away. So how can you grieve in a situation like this? Because there is still a loss, and sometimes a really big one. In a sense, when Ethan got sick and regressed, we lost him. Not in a physical sense, he is alive, but we lost what made Ethan, Ethan.

I don’t want to get used to a new baby.

If Brain Injury has caused a loss of skill, be it physical of cognitive, you now need to get used to a new person. We need to somehow get used to an 18-month-old who now suddenly has the physical abilities of a baby that’s a couple of months old. All while remembering very well where he was at 1 1/2 months ago. But I don’t want to. I want my old baby back. And I want him back now. I don’t want to get used to a new baby. It may sound dramatic, and it’s easy to think “oh, it will be fine, he’ll learn his skills again and you’ll get him back.” Maybe. Hopefully. But the process is hard. It’s not something we want to go through, and neither does he.

I remember when Timothy learned how to walk again after his Burn accident. We were so excited but instantly overcome with a sense of sadness because there was this strange feeling to have excitement about your child needing to learn something again, which reminds you it had been lost.

I have been able to connect with several other moms whose children have suffered a brain injury which has caused a loss of skills. They’re grieving. We’re grieving. None of us want to get used to our “new” child because we want our old ones back. All of us feel a sense of confusion that we can grieve something that is still very much here physically.

Not only is there a loss of how things were but there is also grief surrounded around the loss of what might have been had it not been for the injury.
Personally, we are still very fresh into the Brain Injury process, and we have no idea what time will bring, but I already find myself worrying about how things will look for him if he does not regain certain skills.

Grief after Brain injury is misunderstood.

Often, individuals (or their family members) who have suffered a brain injury, which has caused a loss are simply not understood when it comes to their grief. They are labeled as being depressed, which really, grief that is left untreated does easily turn into depression.

It’s time that the profound grieving process after Brain Injury gets acknowledged and that resources be put in place, for the individual who received the injury as well as for the people around them, because it’s real. The grief is real. Strange, but real, and it needs to be talked about.

Brain injury is hard enough, let’s not make things harder by ignoring the significant amount of grief that comes with it.

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