Sunday, November 1, 2015

Help me find a 16th birthday trip from my chronically ill daughter

We've been talking about it for at least ten years. We promised our first born a 16th birthday trip to anywhere she wanted to go. We've been dreaming about it, planning and looking at travel books.

Along the way there have been moments of doubt. Like how are we going to pay for a trip like this? But we have been saving some and doing lots of research. Cause that's just the way we are.

But now as I start really putting dates on the calendar for June 2016 and we are trying to decide if it's going to be London, Paris, Vienna, or Munich the reality hits.

How do we take our chronically ill daughter on a trip like this?

But how do we not? How can I look in my daughter's eyes and tell her that we can't go. Do you know how many times I've said this in her life? 

This is NOT going to be another disappointment.

And here is why.

On the day Maddie was born, Doug bought her first doll. We didn't know if we were having a boy or a girl, so everything we had was gender neutral. After she was born, he went out and bought a couple of outfits and her very first Madeline doll. It was perfect choice for our redhead!
Then we took Maddie home. 

And things got hard. 

As first time parents we had no idea that other babies didn't act like Maddie. oh my. It was really hard and I got very, very little sleep. But we managed. Cause that's what you do. There was a lot of walking around our very small house and she about lived in the sling. She was happy there!

At four months old she got her first ear infection and had her first asthma attack. (I kind of make it a joke, but anytime we see a new specialist and they ask when symptoms started I say that she was good till an ear infection at 4 months old and has been sick ever since.)

At five months she had her first major allergic reaction to an antibiotic, got her first nebulizer and started routine meds.

At six months she started a cycle of emergency room visits on holidays and doctor visits at least once a month.

Since that time she has seen a truck load of specialists, had a handful of surgeries and experienced five different children's hospitals in the state of Texas.

And during all of this time, we have read books and watched a lot of movies. 

There have been many favorites, but Madeline was always on the playlist and reading list!

Can you guess why? :)

So when Maddie was about six we started talking about going to Paris for her 16th birthday. For a time Maddie even worked at learning French.

Then she got sick. It's weird when I'm typing this that prior to her "getting sick" right after her 7th birthday, her regular sick that included twenty doctor visits or more a year wasn't "sick." 

Perspective I guess. 

The picture below is less than two months before she "got sick." But even here Doug had to take the day off and take her in our car in order for her to go on the school field trip. She wasn't strong enough to ride the bus and then walk around the zoo and ride the bus home. 

Anyway, the summer of 2007 our life changed. Decisions that seemed simple, like do we go to the ballgame or not were now major decisions. Maddie spent the summer in bed. 

For the next year or so Maddie saw specialist after specialist and had test after test done. Scary really strange and big word diagnoses were thrown around and discussed and eventually tossed aside. We finally after many doctor visits and even more hidden tears found a great set of doctors and had a partial diagnosis.

IgA Nephropathy (autoimmune kidney disease), a compromised immune system, asthma, significant allergies and chronic pain.

This was a lot for a kid to endure. 

But Maddie has always amazed us. She lives with such grace. And acceptance.

Things that other kids did, she couldn't do. Or if she did, she would pay the price for it with exhaustion, pain and sickness. What nine year old makes a new year's resolution to get strong enough to be able to go back to PE class?

Maddie did.

And what is so tough is that she looks "so good." So normal. Yes, I am incredibly thankful that she is beautiful and looks just like everyone else. But do you know what that means? No one knows her struggle. No one hears her pain. No one sees...

And so over the years, we have learned to manage. Maddie works tirelessly to keep up with her peers. In order to gain enough strength and flexibility to participate in colorguard, she spends her off seasons in physical therapy.  In order stay as healthy as as can she goes to bed early and doesn't do many teenager things.

Every single day is a struggle. 

Every single day is a day on the roller coaster and you never know when the next drop is going to start. It's the life of remission and relapse.

In the midst of all of this, we have always talked about her 16th birthday trip. When her peers went to Washington DC for the 8th grade trip.. and she didn't. We talked about Paris.

When her peers went on ski trips and boating trips.. and she didn't... we talked about London.

When her peers went on camping trips and church camp and.... on and on.. and she didn't. We talked about what we would do for her 16th birthday.

Even now, as the band is raising money for a huge trip to Disney the week before her 16th birthday.. she realizes that she can't go. If any place could have made it work, it would have been Disney, but the agenda is just too hurried for her. She knows that she can't handle the schedule.

So what should I do?

copyright Kimmie's Photography 2015
Anyone out there with some ideas?

We've looked at Adventures by Disney. But how can I spend so much money on a trip when I know that Maddie won't be able to keep up, she won't be able to do half the activities and if we push hard she will end up sick?

We've looked at so many options. But nothing is geared to chronically ill teenagers. 


I need an international trip that provides an opportunity for Maddie to experience a world class symphony or similar type of event. But I need it to come with few lines and a lot of flexibility and access to doctors.


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