Coulda, Shoulda, Woulda…It Doesn’t Change a Thing

I just got the July 2008 edition of The Oprah Magazine. (I think it’s funny how my husband always asks, “Who’s on the cover this month? Oh, look at that…it’s Oprah again!”) There was an article by Martha Beck that really resonated with me, called “Who’s Sorry Now.” It addresses the concept of regret in one’s life, but there was so much there that also paralleled the grieving process that you go through when you think, “That shouldn’t of happened to me.” You get caught in the coulda-woulda-shoulda’s.

Since we’ve been going through the process of dealing with Josiah’s autism, I still find myself cycling back to the idea that this was not supposed to happen to us. It happens to other people–not us. I’m only able to stay in the present for so long before I get dragged back in to the whys, hows, and disbelief that this actually happened. The author wrote, “As long as you’re thinking, That shouldn’t have happened or I shouldn’t have done that, you’re locked in a struggle against reality… That thing you regret? It really, really, really shouldn’t have happened. But. It. Did. If you enjoy being miserable, by all means, continue to rail against this fact.”

FACE YOUR SADNESS

So, Beck goes on to say to think of something right now that your regret, and finish this sentence: “I’m sad that __________.” Here goes. I’m sad that I got to experience over a year and a half of a delightful existence with my son only to have it ripped away from me suddenly. I’m sad that my son can’t play. I’m sad that at 14 months my son was saying the word “no” so often that I thought we’ve got a pip on our hands, to today when my son never says “no” or “yes,” or even understands the concepts. I’m sad that I won’t get to experience the same joys of early childhood as typical families do. I’m sad that my husband isn’t able to play catch with his son now like he had hoped to. I’m sad that my son might get made fun of when he goes to school. I’m sad that he has to practically work a full-time 40 hour “job” just to learn how to do the things that should just come naturally. I’m sad that Josiah can’t have a conversation with me, or ask tons of silly questions about the world like other kids his age. I’m sad that he knows songs, but he can’t just sing them. I’m sad that he doesn’t know how to engage with other people who talk with him at the store, and I have to end up answering for him–secretly weeping inside because I could tell him he has autism but that’s an awkward thing to tell a stranger, so you just say he’s tired. I’m sad that we can’t even go to the local ice cream joint and enjoy a child’s cone like we used to because dairy and wheat are off limits, possibly forever. I’m sad that I don’t know that everything we’re throwing into him now will give him the future that we dreamed of for him.

I’m sad that our joy and moods are tied to how Josiah’s doing that day, ever the rollercoaster. I’m sad that I’m afraid all the time. I’m sad that the questions so far outweigh any real answers. I’m sad that I dread both the present and the future, when I used to bound out of bed full of optimism. I’m sad that my husband and I have lost some of our playfulness, humor, and carefree attitude because as much as we want to take a break from autism, it’s still ever present. I’m sad that we live so far away from our families and right now there’s no way out of that quandry.

DEAL WITH YOUR ANGER

Then, Beck says, “When you’ve fully itemized your sadness, make another list, beginning each sentence with the phrase, “I’m angry at ___________.” Here’s my laundry list: I’m angry at myself for getting my child fully vaccinated, not knowing the potential risks. I’m angry at the government for not protecting us from toxins, pollution, chemicals, and pesticides. I’m angry at the medical establishment for sacrificing or turning their backs on the health risks of some kids to the onslaught of live viruses, antibiotics, and preservatives in the interest of the greater good. I’m angry at the insurance companies who won’t cover the treatments and therapies to the extent that these kids need, causing parents to be put into compromised financial situations that add stress to their lives, pocket books, and marriages. I’m angry at God for not protecting my son even though I specifically prayed every moment of the pregnancy and every day of his life for his health–body, mind and spirit. I’m angry at not getting delivered out of this through quicker healing and progress. I’m angry at the toll this has taken on my friendships, marriage, work, self. I’m angry at the lack of understanding or concensus of what autism is and how to fix it. I’m angry at the fact that I’m still angry.

NOW, MOVE FORWARD WITH LOVE DRIVING YOUR CHOICES

Next, Beck says to grieve what is irrevocably lost, and that you’re finished grieving when you see someone gaining what you regret losing and feel only joy for them. Like getting to the point when you can see other families who are living the life you always wanted with two little perfect kids, and be glad for them instead of envious. Like hearing people talk about the simple things that they get to do with their families and not thinking that they take for granted the beauty of their normalcy.

Finally, Beck advises to reclaim the essence of your dreams and learn to lean loveward. So, as I go forward, I need to dream new dreams. That’s not to say that I’m giving up one bit of the faith and hope that I have that our son will recover, but somehow I need to come to terms with that process, and realize that the future may not plot out the way that I desire or expect. But, I can’t let the fear of risk and failure derail my perseverance. Like Beck says, “Every time life brings you to a crossroads, from the tiniest to the most immense, go toward love, not away from fear. Think of every choice in terms of ‘What would thrill and delight me?’ rather than ‘What will keep my fear–or the events, people, and things that I fear–at bay?'”

Everything based in love is worth doing. And I love that little boy with every ounce of my being. I love him enough to face into the fear, disappointment, and uncertainty of this path we’re forging in order to know that one day it will all be worth it. No matter what, we’ll have no regrets because we will have done everything we could for him. And, with that, we will have also invested in the lives of others in some way through our experiences.

Psalm 34:4-5: I prayed to the Lord, and he answered me.
      He freed me from all my fears.
  Those who look to him for help will be radiant with joy;
      no shadow of shame will darken their faces.

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4 Responses

  1. Hi Tahni, I just wanted to let you know how much I appreciate your honesty. I read Joe’s blog too and appreciate how you guys are sharing your real struggles. We love you and your precious family.

  2. […] as a thank you. …Nancy Colasurdo | Writer – Columnist – Life Coach – http://www.nancola.comCoulda, Shoulda, Woulda…It Doesn’t Change a ThingThere was an article by Martha Beck that really resonated with me, called “Who’s Sorry Now.” […]

  3. I read your and your husband’s blogs occasionally because I (like the person from the above comment) appreciate the honesty and the perseverance you both have in doing everything you can to help your son. You’re making lifestyle changes that more people should be involved in. I guess I’m one of the “more people.” The chemicals that we are exposed to anger me, yet I haven’t taken the extreme steps that you have to eliminate them from at least our little world in our house. I do little things; I didn’t but those flame resistant pj’s for Evan because I had heard about that, and that was a simple step. I had let (against my better judgment) my husband have our lawn sprayed for a couple of years (that was after I had forbidden it for many years). When I got pregnant, I said, “No more.” (Side note….our dog hasn’t had any seizures since the ceasing of lawn treatments). I try to use vinegar and baking soda for cleaning, but I still have the other products around, too. Immunizations….very frustrating. I didn’t let him get the first shot in the hospital, and the nurse asked me why, and said condescendingly, “I just want to make sure it’s not because you think that causes Fragile X.” (We didn’t know Evan’s status when he was born…our choice). Well, what about the autism that some children with FX have? My two older boys both have autistic characteristics; the autism has improved as they’ve gotten older. But did this small town nurse think that she had all the answers about immunizations?? I don’t know, but I do know that when Evan was given that obscene number of shots at 2 months, he had a VERY bad reaction. A couple hours after, his temp. shot up to over 104, for a few seconds, his eyes twitched, and the topper—-he screamed, especially when we touched him. We couldn’t comfort him for approx. 2 hours. I called the doctor, they of course didn’t take it very seriously. Are they going to try to tell me that all that was good for him? I feel guilty that I allowed that to happen. With Evan, I thought that we were going to skip the autistic characteristics….I really didn’t see them when he was under a year, and because of the FX, I was watching closely! Our doctor even made the comment that he didn’t seem to have the autism. Well, somewhere between 12 and 15 months, the hand-flapping started, along with some hand-biting. He has said altogether around 25 words (not all in the same time period)—-we’re down to 1 right now…ball. Gestures are also disappearing; no more clapping, very little shaking the head no..very little.
    Okay, sorry to take up so much space on your blog.
    Keep up the hope. If even one doctor told me that all the things you are doing could help FX, I’d be doing it too!

  4. Beautiful post, Tahni. Thanks for sharing. We are praying with you.

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