This was originally published in January of 2012. Since then I think my prayers may have been answered. I may have had maybe 1 day off from worry.
The other 364 days of the year, my mind still spins with these questions.
Only each day, I probably add a new one.
Sometimes just before I drift off to sleep panic completely takes over.
The weight of 'what ifs' becomes unbearably heavy.
Their sadness...their worries...their lack of a worry free childhood is just too much.
I have so much guilt...you would think that I am a Jewish mother.
They say you can't have faith in God and still worry.
Tell that to my brain that won't shut off.
Dear Worry,
Please go away.
You're not welcome here.
I would like just one day without you.
Just one day...of not walking on egg shells
Worrying that I will set some one off and there will be a meltdown.
Just one day...with no phone calls or e-mails from school
Just one day...with no fires to put out
No fights to break up.
No screaming in this house.
Just one day...of not thinking about medication and how it's effecting my child
Is it making things better?
Is it making things worse?
Is it making him tired?
Is it causing him to gain weight?
Is it causing regression?
Just one day...not searching for answers.
I'm addicted to knowledge.
I want to know...to understand.
I want to make things better.
Just one day...of not wondering
Am I doing the right thing?
Am I making matters worse?
Am I doing too much?
Am I doing too little?
Am I spoiling him?
Of course I'm spoiling him.
I just want to ease his pain.
Just one day...of not feeling like my parenting is being judged by someone.
I know I shouldn't care.
I just wish the judgement , "I could do it better" and "All you have to do is..."did not exist.
They have no idea what it's really like to walk in my shoes.
Just one day...of not worrying about his anxiety.
Just one day...of not wondering
Will he ever live on his own?
Will he ever be happy?
Are we running out of time?
Will he ever find true love? True friends?
Will he treat his future wife the way she deserves to be treated?
Will I have grandchildren?
Just one day...of not wondering...
Will I ever find myself again?
Will my marriage survive this stress?
Will we ever be on the same page in what to do for these children?
Just one day...of not worrying that he will do something to get himself into trouble.
Will I ever get "that" phone call?
Will his anger get the best of him?
How real is his threat of self-harm?
You can never be too cautious when it comes to his life.
Just one day...of not trying to figure out
What can I do to make him happy today?
How can I make him smile?
All the while feeling deep inside...
nothing I do will elicit the kind of happiness I want for him.
Just one day...of not feeling the pain that he feels...the worry that he feels.
Where is my magic-pain-depression repellant cloak?
I need it today.
Worry, Worry Go away
Come again another day.
Today...I give my worries to a higher power
He's going to take the wheel
He's a much better driver than I
Where I search the map...
He already knows the route
He knows exactly where our journey ends
I have to try to remember when worry comes calling...
Refer him to my driver
Logging you in...
Adelaide Dupont · 285 weeks ago
And for those of us who knew and appreciated these points in high school to a greater or lesser extent - always good to have a refresher and feel them through the current and future generations who we survived to be able to see.
I especially appreciated points 5, 7 and 10.
And young women not settling or settling down yet is a good thing.
"It's never too late to live our dreams" - but it may be too early for some of them!
And 8 of course.
nicole · 243 weeks ago
Risa · 230 weeks ago
LAH · 221 weeks ago
Maira L. Coral · 216 weeks ago
I was looking for information for my Multi-Genre Disability Research Project from my Early Childhood Special Education class on the web, when suddenly I came across your blog. I started reading this out of curiosity and I want to tell you that as you said yourself, you will not be Amanda Gorman, but you managed to make me shed some tears, perhaps because I felt totally identified with your words, especially in the part that you speak of your son. My son also has Asperger's syndrome, he is 19 years old and he is in the second semester of College. Also like yours, he takes classes from home, likewise my eldest daughter is also taking college classes from her room. At the same time, that I work as a preschool teacher from my kitchen through a computer, my husband sleeps in the room during the day because he works at night. Also in the afternoons I myself take virtual school classes. I am a 51-year-old Latin woman who began to learn the English language as adult, so maybe you find some deficiencies in my writing, however, I was very moved by how proud you express yourself about your son. Referent your mother, I liked the humorous tone that you give when your talk about her, so I did not want to miss this opportunity and stopped my assignments for a moment to let you know that your words do make a difference, since they reach the heart of at least those who have opportunity to read you. I want confess you that is the most long I have written to someone I don't know, because your words inspired me, thank you...
Gavin Bollard · 209 weeks ago
Thanks for this post. I've been very distracted of late and so this was how I found out about our friend Kate. Kate's struggles were very real but they were so constant and so wide-ranging that it was difficult for people around her to address them. I think it's going to take a while longer for me to process all this.
I learned so much from Kate because she was always quick to point out the many injustices in the world. In her glory days, she was very much a crusader and she cared for everyone. Over the years, as her situation took its toll, I came to realise that it was the fact that she couldn't be put in a single specific category, that made the system fail her. She needed help that they weren't set up to provide.
She needed more care and she needed to be less alone. I'm so sorry that this has happened.
For a long while we were corresponding almost every day but a couple of months ago, I realised that she had become so stressed that nearly every interaction I had with her was starting to trigger her. I backed away to give her a bit more space. She only had a little time that she could stand to be online and there were too many things that she wanted to do in that time. I thought that by taking a step back, she could reach out to more people who might be geographically closer and able to assist.
Kate was a beautiful soul and she will be sorely missed by all of us.
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Spoil your cat · 121 weeks ago
Many of these living arrangement aren't good, and many of the people who run those places really don't have the residents' best interest at heart. Those places are like old age homes and foster homes, where you sometimes hear horror stories. They're hard to trust. But then there are good ones, of course.
The best thing for an autistic adult is either to go on living at home or working and renting an apartment and living independently, but that isn't always an option.
Duncan · 112 weeks ago