Finding Strength

Let me be blunt.

This week has been HARD.

I say this not to get a woe is me. But to just be honest about the struggles we face in our house. I feel like all week I have been on the constant verge of tears. I'm holding on by the tiniest wisp of a thread.

Why? 

Well. Maddie.

Last week at this time, we were at Disney World with the band. It was touch and go up until we left on Thursday morning if we would be able to go as Maddie had been really sick.  But with lots of meds and a couple trips to doctors leading up to the trip. We went.

We rented a scooter for Maddie and she rode her chair all around the parks. It was exactly what we needed as Maddie couldn't even walk around the resort without help.  We even did breathing treatments before and after the plane rides in the airport with her sitting in a wheelchair. Yes, she was that sick. And yes, I know we took a big risk letting her go on the trip, but quality of life is important too. And being able to go on a trip with her peers was one of those once-in-a-lifetime trips!

Doug and I went along as well as Maddie's support team.

It was a lot of fun.

But this was the price.

We got home from Disney on Sunday night and Maddie went to school on Monday. She had missed a number of days prior to the trip and then one school day for the trip, so she was really behind and knew that she couldn't miss another day.  As she struggled to make it through the day, she came to the realization that there was no way she would be able to try out for the leadership team for her colorguard group next year. She was just too weak to practice the routine that she had created and been practicing for months. That was hard.

Tuesday she went to school even weaker than she was Monday. And then the shakes started. Her poor left hand and arm just shook. And not like tremors. These shakes were jerky spasms. Convulsions. By 6pm she was not good.

So I took her to the ER. They immediately took her back and got her hooked up to monitors. Her heart rate was jumping from 60 to 300 then down to 150 and up to 240 and so forth. It was very scary. And it lasted for a couple of hours! It took the combination of a big dose of steriods, a very potent breathing treatment and a dose of Benadryl to get her body to slow down.

The doctor we had was absolutely the most compassionate ER doctor we have ever had.  (And we have seen a few..) Maybe the most compassionate doctor Maddie has ever seen. She was exactly the doctor we needed. Thank you Dr. Brister. 

After running a number of tests and such, the doctor just sat down next to Maddie's bed and smiled at her and patted her hand and said, "when you get sick, your entire body just gets really sick." I realize that doesn't mean much to most people, but given how many times we hear, "all the tests look good" and "your symptoms don't match what we know about ______" it was nice to just have Maddie's place in life validated. No judgement. No aside comments to me. Just validation to Maddie that she is sick and Maddie is not responsible, nor can she control her body's response to illness.

Later, after making sure that Maddie felt okay, we went home. With no answers.

The next day (Wednesday) was Maddie's 16th birthday.

She spent it in bed. Alone. 

In the afternoon she felt well enough to sit on the back porch for dinner.  

Thursday she was back in bed.

Friday I took her to the specialist in Dallas to have a "challenge test" with the antibiotic she had been on. Because she is so highly allergic to other antibiotics, we had to make sure that she wasn't allergic to this medicine as she felt like this drug was what caused Tuesday's problems. 

Well, she's not allergic to the drug. But the drug can cause the side effects that sent her to the ER.. of course these are very rarely occurring side effects, but that is Maddie's world.

Today is Saturday and she hasn't been on the drug since Tuesday. She's feeling better. The infection in her body is still there, but too bad until at least tomorrow.

Cause tonight is PROM. And she is going. And she is going to be able to enjoy it. I am DETERMINED!

Monday she is back to Dallas to see the cardiologist as this latest tacychardia episode is the second in two weeks.

And in the midst of all of this? 

Lexi and Kylie participated in the colorguard minicamp that Maddie wasn't able to go to. They performed on Thursday evening and were adorable! Maddie sat in the bleachers while her friends led the campers. 

Then, Lexi had field day on Friday and her two individual races. And I wasn't there.

Today I'm doing 20 loads of laundry and I need to clean house.

Here is a snapshot of what my entire house looks like.

Yeah. Ugh.

But the dishes and the dirt can stay. Cause today my sweet 16 is going to feel like a princess and that is worth more than a clean house any day. 

And in a life defined by struggles, pain and illness, today is PROM and she will find strength for it. And so will I.

Because I can

I ran 125 miles in the month of August.  That's the most miles I have ever run in a month.

I'd like to celebrate. And one day I might.

But my heart is heavy.

This has been a hard week for Maddie.

(Of course it's been a hard week, the first week of school each year is hard. With two-a-days, she starts the year worn out and it's downhill from there!)

First day of School

Nonetheless, four days into the school year, Maddie's kidney has flared along with her asthma and she is one sick girl.

Friday morning I took her to the hospital for blood work between a pep rally and an Algebra 2 quiz. Her urine is brown. She made it all day at school, reported for practice on time and performed at the football game.  Want to see her performance?  Click here!

Immediately after the performance I took her home.  Since 9pm Friday night she has been in bed. It is now 9pm Monday.

The only other time she has been out of the house was at 11pm on Saturday night when I took her to the emergency room. Her asthma was out of control and we needed help.

Since the hospital visit she has been on breathing treatments every 3-4 hours along with a heavy dose of steroids. I'd like to think that she could start weaning herself from these soon, but given that she can't even walk across the house without getting winded, we shall see.

She would also like to go to school tomorrow.

So in the midst of Maddie's crisis, I am running longer and stronger than I ever have.  I can feel myself getting leaner and faster.

And it hurts. Cause Maddie can't run.

We are even selling her treadmill.

She wanted to run, but her body can't. We know longer want the reminder.

It's times like these that are hard. I have to remind myself that it's okay to get down. It's okay to eat the donut for breakfast on occasion cause your child is sick and there is NOTHING YOU CAN DO ABOUT IT. But I can't and won't go back to the daily donuts and being 40+ pounds over weight.

Instead, I am going to get up at 4:15am and run.

Because I can.

Summer Camp.. a rite of passage?

A friend of mine sent her daughter to camp this week. This may not seem like a big deal to you, but this friend's daughter has special health needs and has never been to camp. The daughter is going into 6th grade. The camp is a special camp created for kids with health needs. It's an exciting and scary week for the family. A rite of passage if you will.

Why is this important enough to have me dwelling on it all week? Simple. Maddie has never been to camp. She's never been on more than an overnight  anywhere unless I was out of town and she had to stay with family. (She may have spent two nights with a cousin once voluntarily, but I'm not sure..) A month ago she went on her first ever lock-in at church.. and she knows these people and they know her, and I could have gone and picked her up at anytime.

So I'm a little concerned. Maddie is going into 8th grade this year. She is going to have to learn how to go on trips without me. But how do I do it? I looked into the medical camp that my friend's daughter is at, and I'm thinking about sending the camp an email and asking how Maddie can go. It's not easy. Maddie's health is stable and she looks fantastic, but what camp does she fit with? Do I try for the renal camp? The immunology camp? The asthma camp? And because she looks so great, will people think she doesn't fit in? Or do I try to send her to a band camp? And then what happens if she goes into a flare?

I absolutely loved going to camp as a child. It gave me a sense of who I was and taught me that I could thrive anywhere. I wasn't one of those kids that made a bosom friend the first day, but I made enough acquaintances that I could find someone to do something with. I loved making my bed, arranging my stuff, and walking around getting a feel for the camp. I did this at campfire camp, at church retreats, music camps...you name it, I went.

I think that these experiences helped me to be ready for adulthood. I thrived in college, I spent a semester abroad learning different cultures and traveling. I drove across the US by myself to grad school without even knowing where I was going to live. I was ready for adventure.

Maddie doesn't like adventure. She likes routines.

What do I do?