Getting a groove

Last week after our hectic day at Children's Hospital I drove home and began to feel incredibly overwhelmed. Obviously everything has been a lot lately. But driving home and thinking about doing this regularly. The driving to and from DC (which I hate) and sitting in a hospital for roughly 3 hours while he gets fluid on a regular basis felt unmanageable almost.

Even leaving my job where was I going to fit THAT much extra time in my life. And what about Mack? Will I bring him? Do I find someone to watch him? What happens when he's in school? And then I'm clearly worrying too far in the future so I stop.

My logical brain knows that just like everything else I will make it happen. We will fall into a grove and it will become our new normal. We've done this before. When Conor first started therapy and I thought oh my gosh all those appointments. After his first hospitalization and I went to DC EVERY week for like 2 months. When he aged out of infants and toddlers and now we had to go somewhere for therapy instead of it coming to us. Those all felt overwhelming at the time. But they all became normal. So in the back of my mind I know I've got this. But in the front of my mind I'm freaking out a little bit.

Then I started to think about what do we do for the hours we are sitting there. I could let him play DS he loves video games and that's what he does now. I could bring a laptop and get work done while he vegs out. I could get some quiet time reading. But that could become a lot of video games and I hate him playing them so much. And then I realized we could play board games and card games. Because these days will be planned so we can pack ourselves up appropriately. As I realized this I was kind of excited. One on one day built in. Required. With the kid who is growing up entirely too fast. What cool memories we could build with special time together. Even if it's in a hospital bed hooked up to an IV.

I was reminded today of the Welcome to Holland story floating around on the Internet. I love it. Its something I read and reflect on routinely. Especially when I am struggling with how things are or how they have changed.

In case you don't know what this is:

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

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 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.

And so this morning as I thought about everything again I realized I do love tulips. And maybe once we get our grove I'll appreciate the situation for the time it gives me with my little boy. Even if the setting is not so ideal. Holland is pretty cool after all.....

Time for a change

I knew I wanted to be a therapist when I was 16 years old. While the population I wanted to work has changed over the years that always stayed and I worked for years to get there. When I was in grad school I had a supervisor ask what happens after I get licensed. It was weird I hadn't thought about it then. I had spent my whole life with a plan and worked to get there but I didn't think about what would happen after I achieved my goals.

I spent years working in mental health and going to school to ultimately become a therapist. And I achieved that goal. And I've spent the last 9 years working as a therapist mostly with kids. I have loved my job even though at times it is draining. Over the years I've slowly created the job and schedule I wanted for myself as best I could. All that time I have always really wanted to stay home with my kids. But if I had to leave my kids at home I was at least happy to have a job I enjoyed.

This job is heavy at times though. And being a mom is also heavy at times. Being a mom to a kid with special needs is especially heavy. And while Conor was sick it was getting heavier. And I was finding myself feeling too guilty all the time.

I sat in a doctor's office as she told me I should probably take him to the ER in DC. And as I thought about what to do I worried about taking more time off work because I had already been having to take a lot of time off. I felt guilty about not being able to provide the services my patients needed and I felt guilty that I would even consider that when my child's health was at stake.

And so I spent hours in a hospital only to come home at 2am and go to work the next morning. And I knew I needed things to change. So I started working on a new plan. This year this job that seems heavy at times seemed to get more heavy. And my family life well that got heavier too. So when Baby Z died I knew that things needed to change faster then I planned. So I gave my notice at work.

I am excited and very fortunate to be able to switch to my mother's job working from home so she can retire and I can be flexible with my kids schedule. And I can spend more time with them.

After giving my notice things started to feel more real. I had been excited for this prospect. But I am leaving the career I wanted when I was 16 and the patients I truly enjoy working with. I had always felt like I needed a career that helped others. It seemed the way to have a fulfilling life. And certainly it seemed to be what I learned about how to serve God. This has been a little hard to wrestle with at times. But as my time at my job draws to a close I am excited about finding new ways to help others and use my skills to serve those in need. I'm realizing now that I can still have that purpose I got from my career by other parts of my life.

Quitting my job has been a humbling experience. I am having to say goodbye to all my patients. Some of whom I have worked with for a long time. I sometimes find myself feeling frustrated at work when I am not sure if my work is helping someone. Leaving I am reflecting more on how far my patients have come. And I am hearing from them how much their time with me has helped and that is always a nice thing to hear. Additionally I am leaving colleagues that I have worked for years to earn respect from. And in doing so I have realized that I was able to really earn the respect I worked so hard for. It's sad to go but it has been so nice to see and reflect on the impact this work can have.

I'm in the home stretch and soon I will be saying goodbye to all the people and schools I have been working in. It will be a strange transition but I am so excited for this new chapter in my life. And I can't wait to find new ways to provide service. Even if I don't know what that will look like.  After years of planning so carefully I am going to try and let my heart lead me instead....