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,



“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)