That is one of my favorite quotes ever, from Randy Pausch. If you haven’t watched his “Last Lecture” I highly recommend you set aside an hour in your life and do so. You won’t regret it.
Tomorrow is the anniversary of our D-Day. Diagnosis day.
I won’t bore you with a long diatribe about how ours came about. Here’s the $0.50 version: We were waiting for results on genetic tests. We had been scheduled to see a geneticist, then duPont called us to reschedule, and with a different doctor. I hung up the phone, and something in my gut told me to call back. I called back. I confirmed the appointment again, and asked “And do you know why we have been moved from Dr. So-and-so to Dr. So-and-so#2?”
It was late afternoon, before a long holiday weekend. No one to call. No one to talk to…..for days. Just us and the internet. We looked it up, and there he was. The behaviors, the characteristics, the similar facial features, it was all there. No doctor had told us, I had tricked some admin into telling me. But there it was, all hope of his delays just being “developmental delays” and hope of him catching up and becoming ‘normal’ were gone. Yes, this did become his official diagnosis, and from a doctor and highly specialized blood test. It is also my husband’s birthday. So try as I might to forget my D-Day, I can’t.
We only told close family that weekend, and I remember one person saying to me, “It’s not the end of the world.” I won’t rant about what to say and not to say at delicate times in people’s lives. But yes, it absolutely is the end of the world. It is the end of the world that I had been living in; the world that I saw my child and my family living in no longer exists. It was the official beginning of a whole new world. Which at times is much less poetic than a Disney song. Anyway, that’s just an aside, so if you ever hear the “it’s not the end of the world” comment, you have a rebuttal.
So here I am, four years later. A relative newbie in the special needs world. I believe that I have gone through the stages of grieving, as all the books and websites tell me I should. Perhaps veterans in this world will tell me I have yet to begin. Whatever. I know that I’m a practical person. Painfully practical. Two mantras I live by are “Focus on what you can control” and “You gotta play the cards you’re dealt.” My son has a genetic disorder, a duplicate chromosome. A major flaw on the most basic form of human existence-our genes. Those are the cards I was dealt. A rare disorder- there is nothing that can be done to cause nor prevent it. One in 20,000 and we’re the one. I can’t control that.
What I can control is his day to day activities, his schooling, his therapies, his diet, his opportunities. That’s right–I can control his opportunities, what is presented to him as an opportunity to progress, but I can’t control his progression. If he’s not progressing, I can present him with new and different opportunities for success. But that’s it. (and I already have a post started on how do we determine when we’ve presented them with enough opportunities)
Last week at his IEP meeting, it was discussed that we all wanted him to progress to a specific math skill–being able to visualize and process what two of something looks like, what three of something looks like. Just yesterday, my 2-year-old came to me with a blankie in each hand and said “Mommy! Two blankies!” Ouch. No lie, it hurts. I’m sure those of you out there, who have children that are younger than your child with special needs, you understand. You understand the occasional sucker-punch you feel when the younger surpasses the older. The mixed emotions of wanting to be happy for the younger child for achieving a new skill, while at the same time, feeling that longing that both would progress in the usual, prescribed order.
But what I’ve found is that for the most part, those negative feelings, while severe, are very fleeting. They come, and I don’t dwell on them. I can’t change my son on a cellular level. I can’t. I’ve come to accept that. I’m also practical enough to know that energy spent wishing for the whys, the what could have beens, for the most part is wasted energy. Whether its emotional, physical or mental energy, spending it that way is not productive. And therefore, that won’t help my son, which will only create a downward spiral for both him and me.
In life, we have to learn to accept that there are some things we cannot change. We have to learn to work with what we have been given. When we first received our diagnosis, and talked with the geneticist, she told us that we really should prepare for a life of continual care for our son. That he would never be fully independent. I went into Mama Bear mode with a “How dare she! She’s never met our son! How dare she define us!” She wasn’t defining us. She was telling us facts. As far as we know, there are no adults currently living independently, that have the same condition as my son. I have come to accept that fact.
When you accept something, it means you are tolerating it without protest. And settling, by definition, means “to be satisfied with.” I’m no longer protesting, but I’m hardly satisfied. I’m just not going to allow that dissatisfaction to rule my life. You can reach a level of acceptance. You are not settling. I am no longer going to protest the fact that my son has a duplicate chromosome and the challenges that go along with it. I will never be satisfied. Ok, maybe someday I will, but I still won’t consider it settling. The now-deceased Randy Pausch gave a quote in his Last Lecture that really resonates with me. I don’t remember the exact words, but it’s something to the effect of “when parents set too specific goals for their children, it makes life complicated.” Well, no shit. But seriously, that was my “A-ha!” moment.
All those losses I grieved for my son–the normal schooling, going to college, getting a regular ole job, married, kiddos, the white picket fence. Those were all my goals for him. Mine and mine alone. He was a baby when we got his diagnosis. He certainly hadn’t set those goals for himself. My goal for him now is to be happy, and not at the expense of others. That’s it. Who am I to define his happiness? It was very liberating for me to get real with his diagnosis, what is available for us, and simplify my goals for him. It allowed me to focus on what are realistic goals for us at the moment-as far as his speech, education, etc.
Acceptance is not settling for less; we are just no longer protesting what we cannot change.
Have a great 4th everyone!
Latest posts by Lisa
- What to do when your desired (out-of-district) IEP placement rejects your child. - July 18, 2019
- SUDEP. It’s time to say the word. - July 17, 2019
- IEP Compensatory Education (Comp Ed): What is it? How do I get it? - June 21, 2019