Sunday, November 29, 2015

A 4H Seamstress

During the month of October, Lexi learned how to sew!  She under the guidance of her mentor, a retired seamstress Linda, made a dress for the local 4H competition!

Lexi did incredible!

Lexi learned about the entire process from picking out a pattern and choosing fabric to sewing seams and putting in a zipper.

I was and am amazed at her work ethic and ability.  Miss Linda didn't sew this dress. Lexi did!  Can you believe it?!

After the dress was made, Lexi wore it to the local 4H competition. We have never been to anything 4H, but I have been watching 4H and FFA kids for years and am always so impressed with their public speaking, their work ethic, their manners and just their way of handling adversity.

I want this for Lexi. ( I also want scholarships for college.. but we are a little young for that as of yet.)

Anyway, Lexi competed in the Junior Construction Dressy category.

She not only had to interview (maybe the hardest part of this entire process for her) but she had to model her dress as well. She was MAD at me about this as she was blindsided. But so was I! When I say we didn't know what we were doing, I'm not joking.

But she did FABULOUS.

Here Lexi is at the competition.

 Lexi won a 1st place ribbon and advanced to the District round. (We didn't even know that you could do this!)

Here are all of the local competitors.

And then it was time for the District 4H competition. As a Junior, Lexi was not eligible to advance to the state meet. (Good to know.. something to prepare for when she gets to high school!)

The competition was 2 hours from home and it started at 9am. I'm glad I got this picture of Lexi as they were calling role as this was the last time I saw her until she was finished at noon!

She then had a break as she wasn't competing in the other events. (shock.we didn't know about those either. next year...)

Then it was time for the fashion show. This time Lexi knew what to expect, but she was still very serious. She did think having a raised platform to walk on was rather cool.


Lexi won 1st place in her category!


 Pretty cool stuff.

And what will she be sewing next year? No clue. Lexi and Miss Linda have a great bond and I'll leave it up to them!

Monday, November 16, 2015

Recycled Painting

I have started painting over paintings. It's freeing and scary at the same time.  I have a stack of canvases that have paintings on them that I didn't like or didn't finish. So, I am using them and giving them new life.

Not sure what I'll do with this little painting, it's an 11x14 I think.

But I like it a lot.

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.


An October Recap

Halloween has come and gone. Thank goodness. I've never been a fan of Halloween, but we participate in some of the fun stuff so that our girls will have memories.

Cause I really think that is one of the greatest gifts of childhood. The memories of family events... whatever those family events are, it doesn't even matter... just DOING things together and laughing along the way.

And so, here is a recap of some of this year's October memories.

1. Family pictures with a grumpy Kylie.

Isn't that hysterical?! I love it! That is soo her! But she did smile for some of the pictures.
If you need a great photographer and live in central Texas, Kimmie's Photography is great and very reasonably priced! Click here to go to her facebook page.

2. We carved pumpkins.

3. We had family time while Doug recovered from knee surgery.

4. We joined thousands of other families on our town square for trick or treating.
I'm not even kidding. The town shuts down the square and people line the sidewalks trick or treating. My girls don't as no way am I going to stand in a line for a couple of hours to get candy. But we don't have to as three churches have events at the same time on the square. So you start at one side with one churches "trunk or treat" go to the middle and play games and jump in the bounce houses at another churches event and then finish off on the other side of the square with a "fall festival." 

It is insane. But really fun for the kids.
And since the streets are closed, and the police are at the street barricades, it's really great and safe event! And if I had to guess, I am sure that it is the city's most popular and well attended event of the year. It is so crowded it feels like Disney World!

5. Maddie went to a school dance (and even dressed up!)

6. Lexi went to a school dance and of course she dressed up!

7. Kylie had "Book Character Day" at school.
She went as Lady Bug Girl. It's one of our favorite books.

8. And finally we went trick or treating.

And in the midst of all of that.. we had band contests. In case you aren't familiar with the world of marching band.. October is a very busy month. Actually from August 1 to the end of football season is pretty hard core, but October it is insane.

This is pretty much how we saw of Maddie the last few months.

But the hard work paid off. Yesterday the band won lots of awards and are now finished with their contest season!

And there you have our October.

Did you notice that Kylie wore three different costumes... that is so Kylie! 

Sunday, October 18, 2015

Strength and Dignity

"She is clothed with strength and dignity,
    and she laughs without fear of the future."
Proverbs 31:25
Yellow Jacket Band Photo.. not mine. I wish.
Maddie rocked her performance on Saturday for the UIL contest. Well, the entire band did, but of course, I was focused on my girl.

It is so wonderful to watch her come alive on the field. 

I know that we savor these moments more than most as we know just how fleeting these times are. But for today.. she is doing well and able to do what she loves.

We are so thankful.