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




Sunday, July 15, 2018

Trust

We trust society every day with our special needs children and adults. We trust you, and that trust is the ultimate responsibility. These are not just our children, these are society's children.  These are not just our children, these are America's children, the World's children.  Setting aside the fear that our children's disease may ultimately take their lives, we fear that someone might hurt them physically, mentally or abuse them by not taking care of their needs. We fear they may wander, get lost or that someone may shirk their ultimate responsibility for these children, our children.

Let me explain to you how brave you have to be as a parent or caregiver to trust anyone with your special needs children. Here is a picture of a card I pinned to my child when he went to school on one of his first days.

Pinned to his shirt


It's brave to simply put your child in someone else's care, someone else's car or someone's bus. It's brave to trust a teacher, an aid, a therapist, a doctor, a nurse, a babsitter, a surgeon, a friend, a neighbor, and mostly a stranger. It's brave.

Most of society deserves this trust, absolutely.  There is no doubt that there are amazing people out there who enrich the lives of these children, even save the lives of these children who without them these children would not thrive. But, there is always a small fear that someone who is not worthy of this trust will come in contact with these children. It's up to us to care for others.  It's up to all of us to intervene when something wrong is happening, to teach others that this trust is a gift and the ultimate responsibility. It's up to us to be worthy of this trust.

Whenever I am talking to someone who may not be putting our child's interests ahead of their own, I ask for "compassion".  I ask for understanding and help in helping our sons, realizing that our sons have a much greater responsibility as they fight for their lives and their quality of life against a disease, a disease that threatens every day to end their lives. For this, I ask always for compassion and understanding putting yourself aside for the good of another human being, a child. I'm forever grateful for the love and compassion extended to my children when I'm not with them.  Thank you.

Amy