Wednesday, July 11, 2012

Pirates, Pools, and The Dalai Lama

A friend posted this on his Facebook wall:

When asked what surprised him most about humanity, The Dalai Lama answered:  "Man.  Because he sacrifices his health in order to make money.  Then he sacrifices money to recuperate his health.  He is so anxious about the future that he does not enjoy the present; the result being that he does not live in the present, nor the future; he lives as if he is never going to die and then dies having never really lived."

This week, Gabriel has been attending a boys' camp.  Each day there is a different theme.  It started with Pirate Day on Monday.  This camp is being hosted by a friend of mine at her house, and when we picked Gabriel up from camp that first day, he was so happy and sweaty.  He had such a great time!  It was such a wonderful feeling seeing him so excited!

Later that day, Dave worked in the yard, planting some Confederate Jasmine against our back fence.  While he worked, the kids and I sat in an inflatable pool that we had bought a few days earlier.  It was so fun and relaxing, sitting there watching them enjoy the water.

That night, I was sitting on the floor with Lily, when Gabriel brought me a book to read.  Before long, I had all three of them sitting in front of me, while I read them a story, like a librarian would to a group of children.  Dave took a few pictures and videos of the event.  He considered it a priceless moment.

It was a PERFECT day!

Yesterday, as Dave and I were driving down the road, he asked me if I would rather he have a job that made a lot of money but required him to work sixty to eighty hours per week.  I told him no.  Time is more important to me than money.  Dave alluded to the above quote.  He doesn't want to be that man who never really lived.  Neither do I.

We reflected on Monday and how we both had such a great day without spending a whole lot of money (sure, we had to pay for Gabriel's camp and buy the pool), but it's not like we took a trip to Disney World and spent THAT much money (and might have even had a better time). 

It's the little things.  We've grown to love and appreciate them a whole lot more.  And I won't say that it's fully because of Lily, because it's not, but staying at home to take care of the kids and being forced to downsize our budget has helped us open our eyes to those smaller things. 

I wouldn't trade that Monday for a thing in this world.  I definitely felt like I was living.

Monday, July 9, 2012

Hateful Words

Dave says I shouldn't give this my energy, but that's easier said than done.  It has been eating away at me all day, and it's now time for a release.  Luckily, writing is a good way to release both the good and the bad energy that stirs within.

I subscribe to Google Alerts for Trisomy 18.  It's an easy way to get news and blogs on Trisomy 18 without having to do a search myself.  It's not always perfect, but I have found new Trisomy 18 families and some interesting information through the alerts.

Today's alert had this title:  "Life with a Trisomy 18 Tard (at the tax payers' expense). 

I know what "tard" means.  So I was curious as to what this article had to say.  I knew it wouldn't be nice, and I should have just stayed away, but at times, it's good to know what the opposing side is saying.

Here are some of the things the person (screen name:  KidlessKim) who wrote this article is saying about a child with Trisomy 18:

  • tard
  • defective loaf 
  • his family is "living in a fantasy world of what they WANT to see" (in response to the child's mother saying that he is "happy, interactive, and loves people")
  • tard loaf
Thinking about this all day, there were so many horrible things I wanted to say about this person.  I created this character type in my mind to make me feel better.  That this was indeed a "bitter, shallow person" as a commenter called her.  

Then I began to pity this person.  Obviously, for such hateful words to come out of a person's mouth like that, there must be some underlying problem.  Cowardice seems to fit.  It annoys me that this person is hiding behind her screen name and her computer screen.

So I have an invitation for her--"Kidlesskim."  I invite her to Charleston, to my house.  I invite her to come to my house, to sit in front of my family, and to look Lily in the eyes and say those horrible words to her.  And I'll record it all, and I'll post it on YouTube and Facebook and show the world what a horrible person she really is.  That's what I want to do, anyway.

And here's the thing.  Here's what she'll get.  Dave, Rani, Autumn, Gabriel, and I (Soleil is too young to understand) will be hurt by her biting words, but Lily?  Lily will look at her, maybe smile, maybe coo.  She'll just go on like any other day, loving her life and not worrying about Kidlesskim and her biting remarks.

So through all of this, with her "profoundly mentally retarded" state, Lily will come out the better person.  Better than Kidlesskim.  Better than me.  Better than the majority of us.  She's the one who time and time again teaches me such lessons about life.   If only I could take the negative junk and go on like any other day, loving life and not worrying about others and their biting remarks.  Knowing what Lily's response would be, for some reason, makes me feel better.

Thursday, July 5, 2012

Pictures of Camp

Here's Lily on her first day with this year's counselor, Margaret.
So studious!

Painting during Camping Week

I was told that Lily took a few sips of water.

Camp wears this little girl OUT!

Lily got to go swimming in the little pool, but the water was quite cold.  I don't think she stayed in too long.

I heard the other day that Lily took 25 steps in the gait trainer!!!  I'm pretty sure they helped her by pushing, being that the gait trainer weighs the same as Lily.  Hopefully, we'll be getting one of these soon to keep at home!

Lily also got to try out this piece of equipment.  Fix your head, Lily!

I'd like to thank all of those who donated to Pattison's this year.  Your donation helps children like Lily have a wonderful experience at summer camp!

Here's a video of Lily and Soleil.  I sometimes have people ask me what Lily and Soleil's relationship is like.  I think there are some people out there who don't believe that a child with Trisomy 18 can form relationships and interact with others.  I hope this video shows differently.

Wednesday, July 4, 2012

Summer Camp 2012 and Happy 4th!

 This is Lily's third week of Summer Camp, and things are going well.  She comes home exhausted and falls asleep around 8:30.  (Normally, she doesn't fall asleep until 11:30 or so.)  The first week, the campers celebrated holidays.  Lily dressed as a fairy for Halloween day, she wore her "Lucky to be me" shirt for St. Patrick's Day day, and she dressed in red, white, and blue for Fourth of July day.  She got to go trick-or-treating, dye Easter eggs, and plant flowers, and trickled throughout the day were therapy sessions, outdoor walks, and dancing "lessons."  I'm told that the OT got Lily to take a few sips from her sippy cup!  Way to go, Lily!

Lily's second week had a camping theme.  She missed that Monday because we were out of town.  But throughout the week, the campers did campfire painting, had fun in sleeping bags and tents, fished in a "pond" in the gym, and took a real hiking and fishing trip.  Again, scattered throughout the day were therapy sessions and other activities.

We're in the middle of Lily's third week.  No therapy today because of the 4th of July, and Lily missed yesterday due to two doctor's appointments.  Camp resumes tomorrow, though, where it will be Athlete Day.  (Monday was Doctor Day, and Lily got to dress up as a doctor.  Talk about a change of roles!)  On Friday, she gets to go to the Ice Palace and go ice skating!

I'm so excited about next week!  Last year, the finale was a luau.  This year, it's going to be a PROM!  How cute is that?!?!  On Monday, the campers are going to make flower arrangements and corsages and boutonnieres.  Tuesday, they get to shop for their prom outfit and have a tea party.  Wednesday is Spa Day, so they'll get manicures, pedicures, and facials.  Thursday is Prom, so the campers will have their makeup done and hair fixed.  Friday will be a field trip to the waterpark.  What a week!!!

Last weekend, we took a trip up past Atlanta to celebrate Joey's 3rd birthday.  Joey also has Trisomy 18.  We spent the weekend with her and her family, and Lily went to her first Braves game!  Joey has been sick for the past few days, so please pray that she gets better soon and the doctors can find out what was causing her high fever.

Good news from Lily's doctor appointments yesterday!  We don't have to see the nephrologist for another six months, and the pulmonologist took Lily off of the Pulmacort.  That was a breathing treatment Lily had to have every night.  We had to follow it with a tongue wiping so she wouldn't get thrush in her mouth.  That's not something that's easy to do since Lily's not thrilled with things being in her mouth unless it's on her own terms.  But the good news is that Lily is down to five medicines:  Erythromycin for motility, Prilosec for reflux, Singulair and Nasonex for allergies, and Iron.  She was on seven (or more if she needed an antibiotic), so five is a nice relief.

Today, July 4th, is a bittersweet day for me.  The sweet--celebrating our freedom and our country--is probably obvious.  But today is also the second birthday of a Trisomy angel, Lilly. (Her blog is I miss Lilly, as I know her family does.  And while I know that they are saddened by her loss, I also know that they celebrate the time that they had with her and their faith gives them strength in their loss.  How I admire this family!

And not to sound morbid, but thinking about one angel always make me think about others.  There are so many others, unfortunately, but a few come to mind because I was more closely involved with them:  Alice (oh, sweet, sweet Alice), Mikayla, Julia, Oliver, Caleb, Nolan, Brianna, Breanna, Grayson. . .Sadly, that list goes on. 

BUT, what strikes me so about the loss of these precious children is the greatness that has come out of the loss.  All, and I mean all, of the mothers of the children listed above have been so inspiring in their loss.  These mothers have walked through their loss with such grace and beauty.  I am constantly saying that I hope I will be able to do the same in the light of my own loss.  
So on a day like today, I am celebrating, sure, but there is also a sadness that keeps knocking at my heart.

I will post pictures of Lily's camp experience later, but Gabriel needs some attention, so we're going to either play superhero or look up knock-knock jokes on the Internet.

Happy Fourth!