Wednesday, June 8, 2011

Someone DOES know what I mean!!!

I just finished reading an article in the Reader's Digest that I could have written ~ that is if I could articulate what I feel and not bumble around for words and thoughts.

The article is titled "My Daughter, Myself" written by Sallie Tisdale. She so beautifully found my inner most fears, desires and concerns and wrote them for all the world to read.

Yes, her story is different; she is writing about her daughter (whom she adopted when she was a toddler) that has been diagnosed with autism, and she's referencing what it's like to take care of an adult / child, where we aren't quite to the 'adult' stage of life with Alex, yet. But she is so accurate with her words that I literally felt while reading it that she stole pieces of my heart, flattened them out and had them published in a book. If it wasn't so revitalizing to know that someone else understands - REALLY UNDERSTANDS - I might have felt violated!

Now I must interject here to say that I am so lucky to have such a great support system, and a lot of these people REALLY UNDERSTAND like this author does, but none of us have ever said it so plainly yet beautifully. We've been more blunt in our conversations and said, "Where did this child come from?" "What could happen next?" "Can we give him/her back?" And we would always finish the conversation with, "I could only say these things to someone who understands," because honestly, it might sound cruel to say things like that about your child if you don't understand.

Please don't get me wrong, I wouldn't trade adopting Alex for anything!! He is my son. He is my baby. He is the light of my life. But raising Alex, living with all his health issues, mental disabilities and mental illnesses separates me (us) from the "regular" world of parenting. I'm lucky. I KNEW going into the adoption about him having Down Syndrome and Diabetes, as well as a lot of the horrible things he had to endure before coming into our lives. As parents, whether giving birth or adopting, we take what we get. Happily, I might add! But this article lays out that difference that separates 'us' from 'them.'

But as I re-read it I realize these thoughts could be felt by so many people, and not just those people who are raising a child with a disability; what about a wife desperately concerned for her husband who is hiding in drug use? What about the daughter who is taking care of her elderly mother? The teacher who so urgently sees a need for a child, but can't get that need across to his parents? Parents watching their teen child make wrong choices? Anyone who has had to watch a loved one suffer, persevere, or struggle would have these thoughts! Please read the article if you get the chance. Read it multiple times and maybe think of someone in your life who may be living this different life. Then you will become one of those who ALMOST really understands!! And that's one more person we can lean on when the feelings make us overwhelmed with heavy hearts instead of laughter.



Annie (Alex) is a peculiar, sweet, amusing person, irritating and courageous. She (he) is a gift and a conundrum and a ceaseless surprise.

In spite of (and sometimes because of) policies that mandate community-based care, it is easier to find services for some disabilities than for others, easier in one year than in another. That the family is often the best caregiver can lead to the belief that the family doesn't need help.

I feel sad and sorry for myself or pissed off, and then I feel petty because I'm sad and sorry for myself, because I'm complaining when things could be so much worse....How many thousands of people struggle with adult children who are simply immature, addicted, irresponsible? What about all the people who are barely holding on to a crappy job, missing car payments and rent, forgetting to take their medicine and use birth control - the many people who have never been diagnosed as anything but slackers or losers and may in fact have high-functioning autism or mild cognitive impairment or learning disabilities but qualify for exactly nothing?

My resentment, my frustration vanishes when Annie (Alex) is threatened, when I am talking to doctors or to Social Security or standing between her and a hard world.

Annie (Alex) doesn't think like me; my frustrations are not the same as hers (his), and neither are my satisfactions. She may not miss what I would be missing if my life were hers; she might not value what she had if her life were mine.

In other words, Alex is an amazing human being who has survived more trials, challenges and "issues" than I know I would be able to. He is someone who can be mad at you one minute, and after apologizing holds no guile the next. He remembers how we make him feel, not the things we buy or offer him.

He is my hero, and even if there are days I'd like to throw him out with the trash, I never will, and I will fight anyone who even thinks about hurting my baby!

Please read this article. It might just be something YOU could have written!

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