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.  Yeah, 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  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 need time to themselves and a place to let tears flow.


7 thoughts on “Handling discouragement

  1. One of my tools is the same as yours – time alone. It so easy to lose sight of one’s identity – the identity that is uniquely mine and mine alone. Most of the time I am someone more than just myself. I am Ashley’s mom, the mom that IEP teams curse after a meeting – the mom that doctors learn to either respect or hate – the mom that must be a nurse, a teacher, a cheerleader, a coach, a EMT, and many more things all rolled into one.

    But sometimes I just want to be me and nothing else. The me that likes to read really difficult books to challenge my brain – the me that once in a blue moon will have a wine cooler and think fondly back to the days when each Friday brought Happy Hour after work – the me who likes to get dirt under her fingernails while planting flowers and then the me who likes to take a shower after planting using a girly-scented shampoo to make me feel desirable (if only in my mind).

    Like you, I wouldn’t change my life with my special children for anything in the world. But I do need those times to remember and in those memories find the strength to be the best I can be for my children.

  2. Although my kids do not have such long term issues,
    I do realize how hard things are—
    I happen to get E L E V A T E in my in-box–
    – and that message helps me stay
    focused on the moments that are Joyious.
    Blogging is also a great release for me.

  3. Hi! Firstly, thanks for commenting on my blog – it’s led me to yours and I am off to read the archives in a second.
    Secondly, I hear you.
    It is easy to let fear get in the way and it takes alot to listen to yourself.

    As a Mum to a child who is immune deficient, in a medical environment that knows very little about it, it’s so easy to have them fob us off but I have never taken Ivy into the hospital just on a whim. I do it because my gut tells me there is something wrong.

    Thirdly – My outlets are blogging (it has been my saving grace) and photography and scrapbooking (when I get a chance). They help me to work through things and see the world’s beauty.

  4. I go crazy if I don’t get time by myself!! Often my husband will take my son out of the house for a couple of hours just so it is quiet. Reading is a great escape for me, and blogging has become something that gives me another identity besides just wife/mom/case manager.

    I think it’s good to cry when you need to. It’s easier to deal with reality when you face it and come to terms with where you are at in life and that the future is uncertain. I have learned in the last couple of years to rely on a couple of close friends as well, although there are times where even they will want to remind me, “but he’s come so far!”

  5. hello there! thank you for stopping by my blog and commenting. i cannot wait to read more about you and your family! 🙂

    i just wanted to tell you that i do the very same thing.. for sanity purposes i find time alone… away from the house. even if it is to go to the grocery store alone! it helps!

    and i grieve too. i find time alone and have good cry (or scream into the pillow :). i hate to do it, but it does help a lot.

    but, i would not be as ‘ok’ as i am today without my blog, support group, and other parents like you who are out there to share your thoughts and lives with the rest of us. it has been so theraputic to me to know i’m not alone in the things that i face. i hope you don’t mind if i follow you and add you to my blog! i love to read your thoughts and to share experiences.

    again, thank you for stopping by my blog 🙂


    I, too, love my son so much and he is such a joy in so many ways….but bottom line is this life is hard and it just really sucks sometimes!

    Thanks for your honesty!

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