True Confessions

In my attempt to always stay positive I tend to sugar-coat things a bit. I also hide out or shelter myself and my family at times from the harshness and cruelty of the “real” world.  So, what about the “other stuff”—the bad stuff, the ugly stuff, the tough stuff, and the stuff I would rather not deal with— the stuff called reality? These are the things I have been choosing to ignore, to avoid, to talk around and not address.

Today, I am feeling a little bold though, and I’m seeing the shadow side as something that merely exists. We all have shadows, secrets, real-life junk that we don’t talk about or share. As part of my journey here, I am going to share some of this stuff. Raising children with developmental disabilities gets us attention (unsolicited and not always favorable). Many people have asked me through the years, “how do you do it?” or state “I could never do what you’re doing”. Bold individuals have voiced their opinion of our family, and place us in one of two categories: (1) saints or (2) crazy. I prefer neither. I’m a believer in the “law of attraction” or whatever the popular term of the day is that’s used to describe what people have been saying forever. Basically it boils down (in my opinion) to how one approaches life and each situation, how one feels and thinks, and who and what we draw into our lives; basically our choices, outlook and attitude. We can look at everything as positive or negative, happy or sad, or any other range of thoughts, feelings and emotions, good bad or indifferent.

I don’t actually avoid the real stuff; I just don’t share it. I can’t avoid it, because it exists, but the truth is I’d rather not deal with it sometimes (thus officially removing the title of Saint). I started to make a list of such things, and it got very long, very quickly. This partial list includes doing things for my children such as bathing, dressing and diapering, preparing food, feeding and cleaning up (each meal and snack) while at the same time teaching my children to do it for themselves, arranging schedules, setting up therapies (physical, occupational, speech, etc) and participating and carrying out the therapies in the absence of the therapist. Also included on this list are doctor appointments, choosing day programming, lifting Melissa who weighs about ten pounds less than me, and the lack of privacy in our lives due to some professional from some agency checking in on our progress (or the lack thereof).

Then there’s the tough stuff; such as dealing with the fact that some of my children have been abused or neglected and their perpetrators walk free. Forgiveness falls under this category. Also under this group are the scarier moments in life, those that very well could be life or death situations, such as seizures that come one after the other, surgeries, and various other emergency or medical conditions. There are things like not understanding what my children are trying to express, advocating and determining what is in their best interest. One of the tougher arenas we are moving into is becoming aging parents and still having adult children at home that need as much attention and care as infants or toddlers. We are watching friends our age enjoy their new found freedom, being able to explore their interests freely, as their children grow up and move on. They come and go as they please, take extended vacations, classes for fun, sleep in late on the weekends, take up a new hobby, read the newspaper, or go out to dinner or an event—perhaps even on the-spur-of-the-moment. Ah, yes, I recall vaguely that feeling of being spontaneous, and I smile. The serious side of this category is wondering what will become of our children when we are no longer alive or are unable to fulfill our role.

Some of the most challenging things fall into the category of dealing with our children’s behaviors. Here’s a news flash—there’s no manual for this, and what works for one individual may not work for another! I don’t like this category at all. First of all, it comes with judgment and advice, many times from well-meaning friends, family, acquaintances or strangers. Many times it comes in the form of “you’re a bad parent” or “if you had given your child more attention earlier in life they would be well behaved” or “that child just needs discipline”. Putting aside what others think of us though, the reality is that we have an opportunity to teach others about unconditional love, acceptance and the value of each and every human being. We also have an opportunity to help our children use their potential as best they can at home and in the community. I suspect this objective takes a lifetime to realize.

Ron and I made a decision many years ago to raise children with special needs, not fully realizing what we were jumping into. It would mean me giving up my career goals and living on one income as I would be a stay-at-home mom. It has been a journey that has been joyful, fulfilling, exciting, rewarding and uplifting, but also has been challenging, difficult, frustrating and lonely. I’m beyond thinking daily of the things I don’t like, these things I’ve mentioned, and more, are here as part of my true confessions. Some days the realities, the shadows, the dark side peek their ugly head through and I have no choice but to confront them. But, I’ve built a tool box throughout the years, filled it with tools that I have found useful for a variety of situations and I pull out one or more of those tools and do some adjusting when necessary. I long ago decided each day brings a new opportunity to learn, teach, reflect and readjust. The best decision I’ve made is to surround myself with positive people, those that inspire me to want to be the best person I can be.  More recently I’ve added one more important tool to my toolbox; self-care. I’ve discovered if I care for myself, take time to nurture me, renew and refresh by involving myself in things that are relaxing, challenging, rewarding and meaningful, I am much more able to face any challenges that may present themselves. It helps me deal with the bad, ugly, and tough stuff and the things I would rather not deal with; the stuff referred to as reality.

 With truth and love, Pam

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2 Responses

  1. Honest and well said. This is my first visit to this page, I find it very insightful.

  2. well said Pam!! Its good to know others out there feel the same.

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