Posts Tagged ‘child’

Welcome To Holland

I have an online support group that I use for Wesley’s rare kidney disease.  One of my fellow support groupers just shared this wonderful poem.  It brought tears to my eyes.  It is a wonderful illustration of how I feel about Wesley.  

“I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” 

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.”

Rituximab

The dreaded day is almost here.  I got a call from Wesley’s nurse, Stephanie, yesterday to tell me that the insurance approved the rituximab.  I knew it was coming, but I was very unprepared when she told me that I should bring Wes in this weekend.

I was at work when I got the call.  I hadn’t even told Wesley anything about it.  He has begged me to take him to the water park all summer.  I talked to Brad about it, then called Stephanie back and asked her if it was possible to come in on Monday to do the infusion.  I really wanted Wes to have at least one more fun day before we destroy his immune system.  Thankfully, she said that would be fine.

When I came home from work last night, I planned on sitting down with Wesley and explaining it all to him.  But the information had already been leaked.  First thing he asked me when I walked in the door was, “Am I going to get a shot when I go to the hospital?”.

Before NS, my little man was so good about needles.  He didn’t cry.  He was always very cooperative.  I think he handled it so well because I always prepared him for it and let him know it would hurt for a second, but then it would get better.  When he was diagnosed with NS, we were being admitted into the hospital and this nurse insisted on wrapping Wes in a blanket to put his IV in.  They all held him down and I was at his face trying to comfort him.  Looking back, I totally should have spoken up and told them not to do that.  It really changed things for us.  Now, he cries every time we get blood work or anything to do with a “shot”.

So, there I was trying to explain things to my little boy that no little boy should even need to know about.  He was confused with the hernia surgery.  He was thinking that was why he was going into the hospital.  I guess we will be dealing with that one later.

My baby is scared.  During regular conversation, he will occasionally throw in a question about what is going to happen at the hospital.  I have tried to reassure him that I will be there the whole time and he can lay in the bed and I will lay next to him.

Last night, I couldn’t sleep because I was trying to think of ways to make this less miserable for Wesley.  I thought maybe I can buy him some new p.j.s to wear all day so he will be comfortable.  And wrap a bunch of presents for him to open through out the day.

The children’s hospital is very good about having plenty of things to keep kids busy.  I suppose I shouldn’t worry so much.

I always feel so alone dealing with this disease and the treatments.  Nobody that I am close to understands.  Wesley’s disease is invisible, you can’t see it.  People always just assume he is doing fine.  I feel like nobody understands a word I say when I am talking about it, and I am sure that is mostly true.

At work yesterday, when I found out that this rituximab thing is for sure going to happen, I was near falling apart.  I work in a pharmacy and one of the pharmacists that I work with has dealt with autoimmune stuff for years.  He has been on steroids, he has taken different medicines, he even tried one similar to what Wesley is going to have.  I really found consolation in him.  He himself has been in a similar situation as Wes.  It made me feel a ton better to talk to someone who is above my level in understanding this stuff.  I think he has no idea at all how much better he made me feel about this choice.

So, our weekend is about to begin.  We are going to a wedding today.  Wesley is especially excited about the “party” (reception).  Then tomorrow, it is water park day!  I don’t care if it’s pouring down rain.  As long as the water park is open, we are there!  I must make a trip for new pajamas and a few toys.  Then, Monday at 6:00 am, we are off to the hospital for an overnight stay to get my kid into a drug free remission.  As long as all goes well, we will be home Tuesday!