Friday, March 29, 2019

We can help you

We can help you.

We understand if you don't understand a lot about Autism. We're all continuously learning. We understandable if you don't know a lot about rare disease. We're all continuously learning. We understandable that when you've raised your own children you might think you understand raising three sons. It's understandable to think that one might compare their own experiences and think ours are the same. It's possible that in being helpful someone might think they know what our family needs.

It's very probable though that you might be wrong.

It's not a bad thing to be loved. It's a very good thing. It's not a bad thing for family and friends to invite us to things, or to want to see us. Often times, I am very relieved when you want to come to us instead of us coming to you. I've often told people thank you for forcing us to have you over (LOL). But honestly, it's a relief.

Picture you're a child with Autism or a rare disease. You spend all day "working".  Working hard to comply and behave, working hard to get out of your car and go into school without issue. Listening, trying to communicate, being out in public with people all day long. You're working hard at things people "just do". When you're done working, you want to rest, maybe be alone, maybe do things like run or a preferred activity like watching a show, and you want to do as you choose, and not have a lot of "work" associated with it. You have to work at being brave. You have to work at tolerating things no one should have to tolerate. You comply every week with a treatment that lasts hours. That's your work. Then your parents in their effort to do things want you to go to the grocery store, want you to ride along while we take your brothers to something, or want you to go to a party or event. But, that's not your thing.  You'll have to work at it. It will be work. Now you're working all the time, and it's exhausting.

And the parents are working a lot too - working here, working there, working with you, working out there, all over the place working. Often, to make your thing work we're offered babysitting or time away from our kids.  That's not what we want. It also ignores our basic needs to spend time together, get basic things done without having to work at it and replaces it for where you want us to be. That's great for you but not for us.

We don't want to work hard at living. We just want our downtime to be less work.  Hopefully this helps you understand what happens when you ask us to be somewhere, and why we don't attend much when it requires one of our kids to work really hard. We just want to relax in our downtime and enjoy life with you in it but let's just curtail the work!

XO

Tuesday, October 30, 2018

That Week in August

I wish somehow you could experience this and I could share more with you as a Mom without you ever having to deal with the disease, our sons have, itself. This is a life changing experience for me.  I experience so much in just these week long visits I wish for some of you to experience this with me. I learn about humanity, humility, fear, and how to get past hard things a little at a time. I experience joy, pride, appreciation for simple things like playing in the park, and I get praise, inspiration and motivation.

Our family finished a week long clinical trial visit in Chicago in August of this year.  As the weekend ended, and we got prepared to go on this trip, I kept thinking, " what is going to be the hardest part of this trip? "

It's full of so much to worry about...there are anesthesia events, tests, exams, traveling to and from appointments, getting there, spending countless hours in the hospital, helping the boys each individually get through the week and every son with such different individual needs...and then there was my Dad, LOL my Dad had to go for a walk alone every day (we all understand). Going into the trip though I know what to expect but it doesn't ease my concerns.

I worried about whether I would get any sleep the entire time I was there. I got very little.

I worried about whether I could get up earlier than Nicholas to prevent him from eating or drinking anything before having to report to the hospital for anesthesia.

I worried about how Nicholas would deal with going to the hospital and being on the procedure floor where anesthesia is administered. Would he be OK waiting? Would he be OK being wheeled back for the test?

Would my Dad be OK with my other two sons back at the hotel? I was alone. It was all me and I had to get through all of this for everyone else, period, end of story.

In recovery, Nicholas grabbed my neck and held me close, he cried " Mommy, Mommy, Mommy, don't leave me, Mommy, Mommy."  It was difficult to hear that but I was just so glad to be hugging him. Even when he didn't want to be cooperative, I tried to get him to focus on leaving and going back to the hotel. When I am there with him my whole body is calm, I make sure that I am peaceful, comforting and quiet. The absolute last thing I would ever want to do in the recovery room is make him feel that I am nervous, stressed or upset, I would never do that to him when he is going through something so difficult and scary. He is amazing. He is so strong. I am humbled by him.

After we got past that event, Nicholas had several appointments, required testing, and then to cap the week a dose of medicine in the hospital. All of the days were long, and we had a day without anything planned where we had decided we'd go to the zoo or aquarium. We didn't do anything that day but rest and shop. Nicholas had his heart set on toys from the Disney and Lego stores, and he is a good Nordstrom shopper so that was the ticket for the day.  We got lots of play in at our favorite park.

Everywhere we went people would remark about how caring Jack is for his brothers, and how kind he is and that he really has a special place in his heart for his brothers.  He does.  He is a really good brother.

While on the trip, we got to meet with Genetics to talk about our sons. Alex was front and center during that appointment because Nick gets so much focus being in a clinical trial. What was most striking was the mutual admiration our genetics team and our family have for one another. I was so moved when the genetics team recognized that we have two children with a life limiting illness, and how inspiring we are as a family. I felt humbled by that recognition but equally grateful and admiring of those who have helped us take such good care of our children.  I can't even paint a good enough picture of this visit for you to understand just how wonderful this interaction felt, it was uplifting and remarkable - something to remember. Alex suffered so much early on from this disease and really this appointment was acknowledgement that we as a family have been doing all we can to optimize his health and give him the best opportunity for the best life!  One last time it was just good to hear someone acknowledge that we have two children with this awful disease.

So while August is usually remembered as a leisurely summertime pace filled with days at the pool, soaking up the sun, and playing at the park, ours was sort of that but also doing some much needed hardwork to keep Hunter Syndrome in check and our kids in the best health possible! We know that we are the sum of the people around us who look out for us every step of the way helping us through this hard journey of dealing with a rare disease and living a good life while doing it. Goodbye August, so glad you're a distant memory now.

Much love,

Amy