Handling Discouragement

Whew.. life is hard.  Life as a parent of a child with special needs is harder.  Ongoing caregiving of medical needs is hard. Whether it is therapies, assistive devices, g-tubes, trachs, seizures, wheelchairs doesn’t matter.  It is hard. Very hard.  It is exhausting and lonely.  It is wearying.

Weary is defined as exhausted in strength, endurance, vigor, or freshness; having one’s patience, tolerance, or pleasure exhausted. Well now that we’ve straightened that out (as if we didn’t know) what do we do??? Burnout is not an option when it is your own child. You gotta be there.

I have found two important tools for myself.  I’d love to hear what you do….

First, I get out. Alone. I walk around the block, talk to no-one. I am an extrovert, but walking around a pond by myself not even trying to think is amazingly helpful to me. I don’t even understand why.  If I cannot get away from the house by myself on a given day, I go out on my deck and hide from everyone.  I have to find a spot where I cannot hear the voices of anyone I know.  It is so peaceful.

Second, and this is the one I hate the most, I grieve.  Yes, cry, and get all puffy eyed. But first I recall all that I am dealing with, all the duties, all the disintegrated dreams, all the losses of every kind. I want to grieve specific losses.

Grieving seems wrong somehow: “I should be grateful.” “Does this mean I don’t love my child?” “Other people have worse situations.”  Yes they do. So what? That’s my honest response. This life with its shattered dreams, unknown future  and heavy workload is not anything like what I envisioned.  It is filled with hardship and that is the truth. A scale that measures the magnitude of your grief does not exist.

Yes my daughter is delightful. Yes I love her like crazy. Yes she makes me laugh and I enjoy spending time with her more than plenty of other people I could choose to be with.

• No she will not ever be able to tie her shoes.
• No she will not ever be able to feed herself.
• No she will not ever be able to multiply numbers.
• No she will not be able to clean her own feeding tubes and syringes.
• No she will not be able to manage her own health care.
• No she will not be able to have children and raise them.
• No she will not ever be safe on her own.

How can  I not cry about that?

Yes I still have lots of fun in my life. Yes I have good friends that I adore. Yes my husband is a wonderful man. Yes my other kids are fantastic.

• No I will not ever stop worrying about her.
• No I will not ever be an empty nester in the truest sense of the word.
• No I will not be able to go back to school later and pursue another line of work.
• No I will not have the freedom in the later years of my life that would allow me to travel, etc.
• No I did not choose this life I am living.

Is it wrong for me to be sad about any of that?

No.  I don’t think so. To deny emotions is to hold onto them.  They don’t evaporate. To express them is cathartic and cleansing. Only then can I, can we, take a deep breath and continue on in this life we’ve been given. Only after the catharsis can we help our wonderful brains take over and say “I love this child. I can do this.”

Sometimes it doesn’t feel like we are living life.  Sometimes it feels like life is living us. That we are the power source for the lives around us.  But we are more than batteries. We are more than the pedals on a bicycle. We are women (usually). We are strong, dedicated, emotional women.

Whether anyone else sees it or not, we are heroes. Even heroes, no ESPECIALLY HEROES, need time to themselves and a place to let tears flow.