‘I was choking on my own saliva. I thought my life was over. Alex was laying on my face crying and I could feel his tears running down my face.’: Autism mom with lupus describes difficult journey, ‘The thought of not being with him haunts me’

“In the past year, somehow everything has been falling apart with my health. Even though I have had many years of more problems than I have now, my muscles are being attacked. Something is breaking down.

My body goes through full-body muscle spasms if I am overactive, like cleaning out the cabinet in my dining room. When I got out of the ICU in 2016, they gave me a medicine called colchicine and the spasms stopped. After many years, they just started again and this one was like the worst seizures, along with stroke-like symptoms.

I can hear everything, but one by one, I will lose all ability to speak, move, etc. I also jerk violently. I have problems swallowing. I was choking on my own saliva and I guess Kuldip didn’t know enough to call the ambulance. I thought my life was over. Alex was laying on my face crying and I could feel his tears running down my face, all while Kuldip was doing dishes in the kitchen and never explained to Alex what was going on. The episode lasted 30 minutes but it took two hours to be able to make sense of everything. I couldn’t explain to Alex and the next day, I didn’t want to bring up before school because I know he has the power to let it go.

After my mom helped me with what to say, we talked when he got home and put directions on the fridge in case it happens again when we are alone.

The great thing is I found an article and got through it my thick head that we just have to accept everything with the school and there is just not any recourse for us. Once that sunk in, it was a huge weight lifted and helped me move forward.

I’m scared because Alex and I are so close. At times, I feel like he is so scared that he tries to pull away because he is scared of me dying. There really isn’t away to keep him from knowing because this is our life.

I bought a journal to help me not to share so much information. I now have no one to talk to because my mom is so sick, she can’t take in the information. It causes her too much worry and I don’t want her to do that. We talked five times a day for my entire life and now I am lucky if I can talk to her once a day for even 10 minutes. I’m falling apart and so scared to leave Alex because we have no one to take guardianship. We are all so codependent, he will never survive without a loving support system. It’s an awful way to live when you just want to enjoy being his mom.

I love my title as ‘Alex’s mom,’ but I can definitely say, at times, I wish I could take off some of the many hats I have to wear, for just one day — okay, maybe a month — and just be ‘Alex’s mom.’

Without any training or even an understanding of the depth each role would require, we intuitively become our child’s advocate, navigator, scribe, event planner, therapist, teacher, and lawyer. I have never even had a day’s worth of training to fill so many shoes and yet somehow, my intuition shows me the way, just as it does for all of you!

These days, the only way to get things out is to write. Today, I was thinking about changing this page up to share our whole story. I was texting with a friend and she made a comment about how well I understand Alex. She said she doesn’t understand her daughter so well. I feel like this is a lost art and without it, you miss the connection and are basically just some textbook.

She touched on some of my thoughts today while I was doing dishes… My heart aches for any single-parent families who are just getting by while holding down a full-time job and trying to keep up with the necessities of our children with special needs. Or the families trying to make ends meet and are faced with the difficult decisions of which care or therapies they have to sacrifice, due to the extensive cost of care.

I am not ignorant of the fact my family may be better off than others. When your entire focus is on your child’s care and there is no more money to put forth, the emotional impact is enormous.

For instance, once I arrived in MD, I had a team of doctors set me up with the best doctors in the country, who stepped outside of the box and treated me based off of my symptoms and my blood work, rather than turning me away because everything didn’t meet certain criteria. They saved my life. Now that lupus has finally started to attack my brain, the only major organ I haven’t suffered from the effects of this disorder, I wait patiently as they try to figure out the best way to treat me. I am high risk due to my medication. They are already a dangerous mix, but I am unable to give one up for another, so I pray and I look at Alex to give me the strength to find help. If I don’t start trying to strengthen my body, I will lose mobility at an age that is way too young and will take away from the joy I share with Alex, which is already limited and unfair.

I feel thankful because I believe Alex and I patiently observe and listen to others around us, even strangers. You can totally change someone’s day in a split second, just like others can do for us.

At times it’s a major pain in the a**, like a telemarketer who can sense your tone and continues to talk after you have tried to nicely turn down their product, or when you can tell someone is not being genuine with you. I would much rather have someone be assertive and put me in my place because they are holding up their promises.

I think when you are able to sense the tone or read someone’s body language, you should always trust your intuition.

I will never say it is easy with Alex when it comes to trying to help him plan out words or simple phrases to share what has troubled him in his day. Actually, it’s excruciating to watch him suffer, become confused,  and try to tell you something but blurt it out phrases that can be misinterpreted. You have to be patient and go back again in short spurts to not overwhelm him. I have spent 3 long years memorizing every facial expression, body movements, breathing, the volume of his voice to guide me through his roughest days. I am so grateful for our connection because it has helped me to pick up the smallest changes to tell me how he feels or when something has gone wrong.

As I sit here and put my head into my hand to rest, he instantly put his under my head so he could see my face, as he asked me, ‘What’s wrong, Mommy? Why are you stressed?’

The thought of not being with him, before I get to see he will be okay and have some sort of support system (love, guidance, someone to lean on when he is sad, someone to enjoy his accomplishments, someone who will always be beside him) haunts me every day.

I don’t understand why, in the worst part of my life when I was physically sick and could barely walk, I was given the greatest gift of my life.”

This story was submitted to Love What Matters by Melissa Viedt. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.