Something Good

19 Feb

I’m coming down with something. My throat feels scratchy and sore this morning. A had the same thing a few days ago but he’s feeling better now so he must have passed it on to me. I guess my immunity is at an all-time low these days if I manage to pick up every virus that comes to the house.

I am worried about Alphonse, though, and how a new bout with sickness will upset the balance of his body even more. Last night, we went to see his psychiatrist for a review of his meds. She wants us to start weaning him off Risperidone so we can move to a new drug, Aripiprazole, sold under the brand name Abilify. I spent much of last night reading up on Abilify, which was approved in 2009, after years of off-label use, for irritability in persons with autism . I am also preparing myself for the pending meltdowns that will ensue with the gradual removal of Risperidone, gearing myself for the showdowns and battles of wills.  As much as I am afraid of any more changes in our lives, we really do have to see if Abilify will modulate his moods better. Risperidone, at 5 mg/day, does not seem to do it for him.

We’re seeing another doctor this afternoon, this time, a DAN doctor, one of only two in the country. We’re currently looking at a possible cause of this regression but I don’t want to preempt the diagnosis and announce it unless she confirms it. In my heart, I am convinced this is it but it’s difficult to focus on only one cause without considering others and ruling them out first. I know the antipsychotics will treat only the symptoms of his irritability, aggression, and violence but we need to find out why this is happening. It’s the only way we can head it off when it happens again next time, and I’m pretty sure it will.

Meanwhile, I bask in the love of my family and friends, drawing from them the strength to face this yet another day. When you are surrounded by people who have more faith in you than you have in yourself, their overwhelming belief and trust in your abilities outweigh even your frailties. 

To A, whose shoulders carry the burden of my tears, thank you for always being my soft spot to land on.  I say it every day and at every possible moment, but let me say it over again: I love you.

To Alex, who shoulders on cheerfully each day, thank you for the text messages for your tired old mom. My son, you give me a reason to smile each day.

And then there are people who go the extra mile for me, for Alphonse, and for our family. These are people who owe us nothing and who need not do anything for us but do so out of the goodness of their hearts and the generosity of their spirit.  These are my helping hands.

To Patricia, my fervent ally in this struggle of our lives, you have my deepest gratitude for your help, wisdom, and knowledge. You are my divining rod in these confusing times.  

Mei, Auden, and Ron, my grade school friends whom I’ve only reconnected with again last year after 33 years of separation, you are my most valuable lifelines to the world. Because of your friendships,  I don’t feel so isolated anymore.

To my gorgeous friend Sally (and she really is beautiful, no kidding),  your beautiful gift brings me warmth in the mornings, brightening these dark days with the sunshine of your love.

And to my new friend Lyra, who amazes me with the depths of her unselfish spirit, I cannot thank you enough for opening your heart to us. Far from your side of the world, you have reached out  with love and we are forever humbled by your friendship.

I often think we are alone in this struggle and finding all this love, I realize that we are not. There is a bright sunshine streaming in the windows this morning. It reminds me of better days and happier times. It reminds me of love. And of that, I have plenty for today and tomorrow. Thank you, my friends.

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One Response to “Something Good”

  1. geri February 19, 2011 at 11:48 am #

    P, these people are angels sent to you by God. Get well soon and praying you will find answers.

    Last Wednesday Dr. Oz had a special show on Autism and it made me think of you.
    http://www.doctoroz.com/videos/what-causes-autism-pt-1

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