Lost and Alone

“It’s not the load that breaks you down, it’s the way you carry it.” – Lena Horne

 I cannot begin to count how many people have contacted me asking what keeps me so positive with “the load I have to carry.” By this they mean parenting three children with developmental disabilities. I sit deep in thought each time one of these messages appears from people who describe themselves as overwhelmed, depressed, lonely and feeling guilty about it. For the most part these are parents of a child, or children, with developmental disabilities. Some have young children, while others are parenting their adult children who are unable to live independently.  These folks, typically moms, are burned out. Some have been burned out for years, often severely depressed, angry, fearful, anxious and socially isolated. They feel desperate and alone.

These folks love their children and would go to the ends of the earth to care for and advocate for them, making sure every one of their needs is met to the best of their ability. But they neglect themselves—or more accurately have lost themselves. They no longer know who they are because the child or children they care for has become the most important part of their existence.

 I relate to them. I feel for them. I am one of them. I have been there. I am there. I understand.

 I often sit in silence wondering how I will respond to their message. How can I lift them up just for this moment in time? What words of wisdom do I have? Typically they catch me on a day when I am struggling also. Perhaps I’ve just entered a quote on my Facebook status that is positive and uplifting and leads you to believe I live some super-human existence where sadness and grief do not exist. But, I’ve also noticed over the years that people post things on social media that they need to hear themselves. It’s how we justify or deal with our own emotions. Sometimes I say things not because I know better than you, or deal with situations better than you, but because I struggle—with you. I am you.

My own social isolation has changed me into a person I don’t know. It has also made me realize I have to be my own best friend. I have to lift myself up because the only other option is to sink—into a deep, dark hole of desperation and despair. Perhaps this seems overly dramatic. Ask any parent who is raising a child with special needs, especially one who needs total care if it’s exaggerated. Come spend a week in my house. You will learn a lot. You will learn survival skills that aren’t even considered on television reality shows. You will learn our strength and resilience.

 Although respite care may be available to these parents they may rarely use it to have fun or nurture themselves. Instead it is used it to do things such as grocery shopping, running errands or going to doctor appointments. Even if they have the time to do something fun, they often are without a support or social network. They don’t have someone to call and go out to lunch or spend an afternoon shopping with. They don’t know what is going on around town because they know better than to plan such things. Often financial resources are also a concern.

 For those who want to know what I do to stay positive all I can say is I am just like you. I am not upbeat all the time, but often I fake my way through. I have good days, great days, bad days and horrible days. I have no great words of wisdom, no magic potion to make your life easier. I have discovered that my thoughts are powerful and what I think about most is what I attract. That doesn’t mean you always have to be in a good mood, think positive and never get angry. It just means to let those things happen and then let them go.

 Moms and dads who are parenting a child or multiple children with special needs please know your value. We often spend so much time fighting for the world to see value in our children that we neglect finding our own value. Know that asking for help (especially from agencies and professionals) is ok—actually it’s essential. Trusting that help may be a bigger challenge. I know.

 Find a little time to do something for YOU each day. Maybe it’s simply finding a quote for the day that uplifts you. I’ve also learned to do things alone because I know how hard it is to find a friend sometimes during that tiny little window of opportunity you have to get out of the house. For many of us friends are difficult to have because we aren’t able to BE a friend in return. We simply don’t have the time. Just sitting at a Starbucks or local Internet accessible café, alone with your laptop, will help you feel connected to other people. I love it and it meets two of my needs: time alone and time with people.

 Also, try to get some exercise. You don’t have to join a gym or do an elaborate workout or hike to the top of a mountain, but move your body in some way because there’s a definite connection between movement and mood. Cranking some favorite tunes and dancing around the house can lift your spirits immensely. It may even make you laugh and what could be better than that? If you are unable to exercise perhaps you have ten minutes to sit alone in meditation to calm your mind and bring you inner peace.

 Most importantly find something to be grateful for each day. This is the one thing I found most difficult initially, but turned out to be the greatest gift to myself. If I can find gratitude each day for something small it makes the bigger, tougher stuff easier to handle. Eventually you may be able to find gratitude in some of the tough stuff too. Not always, but maybe. It’s worth a try.

I write this to you, my friend, who have reached out to me at some time for help or advice. I also write this to you, a stranger, who have never reached out, but are feeling alone and in need of a friend or professional. (I’m not a professional so still make that call). Most importantly, because I am you, I write this for myself. I need to know that even though I feel as though I’ve lost myself I still have value. I love my children and they have value and they are my passion. I need to always remember to find gratitude, time alone and time with friends. I need to feel connected and loved and uplifted. Much love to all of you and remember each day is a new beginning.

Just trying to express,

Pam

 

“And I don’t know what the future is holdin’ in store

I don’t know where I’m goin’, I’m not sure where I’ve been

There’s a spirit that guides me, a light that shines for me

My life is worth the livin’, I don’t need to see the end” ~John Denver (from Sweet Surrender)

 

https://www.youtube.com/watch?v=MJmH05xnUQA

 

 

 

 

 

 

 

 

 

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6 Responses

  1. Brutally honest, insightful and so full of meaning….this is really the way it is. We survive because we choose to live this life and are comforted by the fact that it is a worthy life. Isolation? Yes, people stay away and even run because to get to close may entail a feeling that one can not simply sit home and be warmed by difference.

  2. Wonderful post. Thank you! I use many of the same things that you write about to help me stay afloat. I’m glad I found your blog through Phil. Rock on!

    • Carolyn, thank you for taking the time to read this. It’s comforting to know others “get it.” We are all a close-knit community with many miles between us.

  3. How very, very true! I, too, have had so many people ask me the same question, sometimes as a precursor to letting me know they’re nominating me for sainthood—which I’m about as far from being qualified for as a serial killer! Sometimes I tell them to come be a fly on the wall in my house any random day, and they’ll discover a person that would appall them. Do I love my two adult children with disabilities that still live at home? Would I do anything within my power to make their lives more meaningful and less challenging? Do I willingly sacrifice whatever it takes to make sure they have whatever it is they need? Yes, yes, and yes! But the person it has made me into is not one I always recognize, and rarely one I like.

    You are so right that we have lost ourselves, in a hundred different ways. Of all the truths contained here, the one I most identify with, and that, I think, goes to the very soul of this issue is “My own social isolation has changed me into a person I don’t know.” This has been the point where I feel so many of us part company with our peers, for our lives are not even remotely made up of the same things as theirs. Even if we have the points of connection with potential friends to build anything around, we certainly do not have the time necessary to be a friend. I found myself reflecting last night on my parents, and how many friends they had—friends from work, from church, from the neighborhood, within the family—and what a wonderful thing it seemed to be. It made me cry to imagine all we have missed out on by having such a different life. It especially stabs to the heart to miss out on so many opportunities to spend time with family, particularly siblings and grandchildren. Over and over and over again, I find myself explaining to people, “I don’t get to be in charge of my choices, my children do.”

    Life for everyone is fraught with challenges and battles—just to be alive is to know what it is to struggle. But I think for parents of children with disabilities, the one thing lacking is a period of recovery—the chance to retreat from battle long enough to get re-armed for the next round. Also missing is the opportunity to face “only” one battle at a time—for while we may face the same challenges of life that are more or less universal in our American culture (like job changes, sick or elderly parents needing our time, adult children needing help to launch out on their own, financial struggles, aging, retirement, our own health deteriorating, etc.) we face them in addition to children that need 100% of our time and energy. We are constantly trying to do what science tells us is impossible: have two things occupy the same space at the same time.

    Fortunately, I think most of us have developed some measure of coping mechanisms, drawn courage from connections with others facing the same trials, and learned to find blessings in the teeniest, tiniest of things. While we have forever traded away some options that look like they might be nice to have (at least from the outside looking in) we have been spared a life of boredom, and been provided with a rich repertoire of experiences. And all of the greatest treasures life has to offer—faith, hope, and love—are just as available to us as they are to anyone else! (And in case you’re wondering: yes, I am saying this as much to remind myself as anything!)

    Thanks for giving us some heartfelt insights, and much to ponder!

    • Wow, if there was anything left out you completed it here. You need a blog of your own to share your journey which has been incredible. You are a gift to all who know you, Sue!

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