I’m going to share here, because here is one of the few places in our world where honesty still lives.
I have been angry. Anger I didn’t know still existed. With the exception of Christmas and Easter, I haven’t been to church in over a year. I have been angry with God and the world. I was angry about everything.
I have been angry about Alexander’s struggles.
I have been angry that our lives were going to remain so stressful and …. difficult, because I don’t know what I would ever do if he wasn’t here.
Very few people even know that I have been angry, I have hidden it. I laugh, tell jokes, go to work, and am usually “happy.” But, inside – I raged.
I honestly had no idea where this anger had come, because I haven’t been angry…. Not in a long time, and Alexander was 5 years old. I wrote a blog about Alexander. People told us on a regular basis that Alexander has changed their lives. I found extreme happiness knowing that Alexander might be merely teaching them not to say the “R” word, but his life was such a positive testimony to people. What happened to the list of blessings I used to count?
That God gave us 3 beautiful children?
That Alexander was the true innocence?
That Alexander made us slow down and enjoy our lives together?
The list… was too many to count.
Last night, we listened to a friend of my husband speak. She is battling stage 4 cancer. Listening to her, I was inspired. I felt it; that smile in your heart that is hope. She spoke about her struggles, her triumphs, and all the things in between.
She said these words, “When something happens to you, you can do one of three things: become defined by it, become weaker by it, or become stronger by it.
It was at that moment my anger left. I realized… I had let us become defined by Alexander’s syndrome. For years, I became stronger because of it. I chose option 3. “When did I stop becoming stronger and start becoming defined? If I have the choice of the three, I want to be stronger, not defined.”
I woke up this morning happy. I saw our blessings again. I smiled a real smile. I didn’t worry about the future because the future wasn’t here yet. I remembered to live in the day. The thoughts racing through my head now were, “Our life is amazing. Remember when Alexander was fundraising and we received $15,ooo in a month? These things happened because so many people love and support us. Alexander continues to progress, even after a seizure. Alexander is loved and loves so freely.”
The list… was too many to count.
We all need to remember to keep ourselves from becoming defined by the syndrome. Pick option 3. Because it is so much better to become stronger than defined. Stronger is Happier.
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Ola, sou do Brasil e tenho uma filha de 6 meses chamada Lara com a síndrome wolf hirschhorn e venho aprendendo muito com ela. Gostei muito desse depoimento. Também escolho a opção 3. Mais forte é mais feliz sempre
I been praying for you and your family all along and I know how frustrating things can get,but know this God never gives up on you no matter how angry you get He knows your troubles and is there for you.How do I know because He got me through tough times in my life and I know I could not have done it alone.God is good all the time all the time god is good.You just have to give all your anger to Him and he will see you through it trust me i been there.
You took the words right out of mouth. This is my story, I know, oh to well. Thank you for sharing. I hope one day soon I will become stronger and happier, not defined.
What a powerful and honest post. Thank you so much for that. Sometimes I get so entrenched in the day-to-day that I forget to think about bigger things — like what Elsa means to others, or what our future will look like… things that maybe could get me feeling emotional if I meditated on them. Most the time, I feel like I’m just digging. Elsa isn’t verbal, but sometimes I think she is watching me and thinking, “STOP. Just be with me today.” I get so caught in measuring medicine, cleaning spit ups when she’s sick (she is this week), putting on AFOs and in hearing aids, etc. I think she is begging me to pause and watch the amazing things she is doing, no matter how small. Thanks for the reminder to slow down and think big things, even if they bring dark thoughts. There are lessons in the darkness too.
Congratulations on facing your anger and conquering it. Anger pops up in me. I hate it. Maybe we don’t chose it, but hanging onto it is a choice. I did not experience much anger towards Rochelle. She’s adopted, my choice. Anger came 35 years later when at age 65, after spending more than half my life caring for a dependent child, both my parents were diagnosed with dementia and came to live with me. That is when I experienced the kind of anger that wells up in response to a situation I didn’t chose or want. Now I have more compassion towards this sort of anger. But, like you, I need to chose to be made stronger and count my blessings, and I do.