When Words Try to Hurt

WARNING!  Please do not go back and respond to the comments I'm going to post about.  Please respect my wishes for Lily's blog to not be a warzone of hateful words between one another.  I am merely making this post to share the process I went through and how healing occurred from it, to share that because it is a beautiful feeling.

For the past two days, I have been bombarded by some pretty seething comments regarding my "Hateful Words" post.  While I don't like these comments, I have to say that I respect each and every person's right to have such comments.  This is a blog.  It is a public forum, I must accept that everyone does not hold the same opinion that I have, and that is why I have chosen not to delete what Anonymous (all but one of them) has said.

What these Anonymous commenters don't understand is that their words didn't hurt me that much.  I'm sure they wanted them to, but they didn't.  It was more the situation.  Sure, I wanted to reply back with some biting, sarcastic remark, but I just finished reading a book about Desmond Tutu, and I highly value the way that he handled conflict and epitomizes the ubuntu philosophy where "A person is a person through other persons" and that person knows that "he or she belongs in a greater whole and is diminished when others are humiliated or diminished, when others are tortured or oppressed, or treated as if they were less than who they are" (No Future Without Forgiveness, by Desmond Tutu).  I have admired this philosophy for years and have struggled to cultivate it within myself since learning about it.  Perhaps it is through encounters such as this where my greatest cultivation occurs.

Here was my biggest problem.  I felt misunderstood.  I know.  I know.  I shouldn't worry about that, but as a writer, I strive for clarity.  These people posting these comments just didn't get it.  And that bothered me.  I wanted to respond to tell them that they got it all wrong.  But you see, their words seemed hateful to me, and I knew my responses would sound the same.  I thought about Martin Luther King Jr.'s quote "Hate cannot drive out hate; only love can do that," and so I tried to think of nice things I could say.  Kill them with kindness, my mom would say.  Still, I struggled.  Dave suggested that I just keep quiet, but the problem is that I cannot keep words inside of me.  Honestly, I don't like to write, but I need to write!  Keeping it inside of me is a dagger that won't stop twisting.

So a struggle ensued.  This was not so much about them and me as it was about me against myself.  If I didn't really want to respond hatefully, and I couldn't respond silently, and the kind words weren't there, what was I to do?  Could I really not get in touch with that peaceful place and respond appropriately?  What was my inability to respond with kind words saying about my beliefs as a Christian?  Why could I not respond in a way I know Tutu would respond?  (Silly thought, I know.)

I'm sure the negative posters delighted in my struggle.  They are probably sitting back right now, in self-congratulatory mode, thinking that they have won.  What they don't know is that they won't win because I embrace struggles and recognize them as a chance to grow.  Currently, I am reading Aleph by Paulo Coelho (perhaps by the grace of God I am reading this book), and just last night I read this:  "What hurts us is what heals us."  Exactly!  Those seven simple words gave me renewed strength, and my fight began.

The problem then became "how do I allow this healing?" because I still had the problem of keeping silent.  Part of my plan became that instead of giving them my negative energy, I would give someone well-deserving my positive energy.  A few Sundays ago, in church, a little eight-year-old girl was sitting in the pews a few rows ahead of us.  Towards the end of the service, she looked back at Lily, and she had the most endearing, the purest, look.  It was full of compassion and there was not one single sense of disability in her eyes.  It was all I could do not to cry.  I complimented her to her mother, which was very meaningful to her mother.  I had been meaning to email her mom and praise the little girl again, but never did.  This little girl's look held my hope these past few days, so I resolved to email her mom and explain the situation and praise the little girl even more.  That resolve was step one, and I emailed the mom this morning.

Step two involved trying a few things.  I tried crying my frustration out.  There are times when crying is very cathartic for me, but this was not one of those times.  I tried washing those words away with a nice, hot shower.  This pregnancy leaves my skin itchy, and showers help.  That's about all that shower helped, though it did give me the idea for step three.  And, of course, I did try praying.  Let's just say that I know my prayer life desperately needs to improve.  Unfortunately, none of those worked single-handedly, but I do give credit and say that they all helped get me there.

I still needed step three.  Music.  Somewhere around midnight, I went to my keyboard. . .and stayed there until about 1:20.  Oh how many problems have been forgotten and solved by sitting alone at the piano or guitar!  And I have now added to that list.

I went to bed, able to sleep, and woke up this morning feeling quite refreshed.  I tried thinking about those posts, but my mind just wouldn't let me do it.  Another post came in, and I just laughed when I read it.  None of those words went to my heart, and I didn't feel the need to respond (except I did want to make one correction, but I didn't, and I was amazed at the 54-year-old who made the comment because I think of the maturity the 54-year-olds I know have that this person could use).

And here's the last thing:  the other day, I was listing to Beth Moore on the radio, one of her Quick Word broadcasts.  I believe she was talking about her daughter, but she may have been talking about one of her listeners.  She was talking about criticism, and she basically said that you have to know yourself to handle criticism.  You have to know when to accept it and you have to know when it's not right.  What these commenters don't understand is that there may be areas where I feel insignificant and insecure, but where they hit me, well, those are my most secure areas!  In trying to be hurtful, they were only helpful because they allowed me to do a little self-searching and realize that therein is where my strengths lie.  I AM a good mother, I AM a good person, I stand firmly behind my decision to allow Lily to experience life and will defend that decision to the end, and I am NOT perfect.  (Never claimed to be.)  All of us are children of God, and that includes Lily, and not all people believe this.  They don't have to.  But Lily doesn't know that.  What she knows is that there are plenty of people out there who love her, and that's all she needs to know.    So in a way, I thank these readers for their comments.  In my opinion, they weren't nice, but their words made me stronger and only confirmed that "what hurts us is what heals us."

Aaaaahhhhh. 

AGAIN, I cannot express how much it means to me that you not go back and make comments regarding those comments.  I am healed and today is a beautiful day, and I hope that you can find it in your heart to not give these people any of your energy, but to find a way to heal and grow from their words instead.  Besides, I do not need any affirmations, and That.  Feels.  Good!

Post Surgery

Lily had her surgery for her diaphragmatic hernia yesterday.  All is pretty well.  She's had a few episodes of pain, but medication has helped with that.  She's also vomited a few times, but I'm hoping it's just a post-op thing.  She slept well last night, but her pulse ox kept going off.  That was a little frustrating for a few reasons.  (1) It might mean that Lily needs to go back on oxygen--although that could be the medicines causing that, and (2) it meant that I got very little sleep.  I've already taken a nap this morning!

There are four little bandaids dotting Lily's abdominal area, small incisions where they went in to fix the hernia.  No big, long scar like the bowel obstruction left!  The doctors heard a little upper respiratory congestion, so I believe they're going to have a respiratory therapist come in and do a little therapy with Lily.  I don't know if that means they'll keep her another night or not.  They anticipated that she would be in for one night, but now I'm wondering if they'll make it another. 

I've got a few more pictures to share of Lily in her final two weeks at Pattison's.  She really had a good time, as I think you'll see from the pictures.  And I don't think I ever posted about this, but Lily was chosen Prom Princess (along with one other camper)!!!!

Speaking of Pattison's, one of our local magazines is having a contest to choose a nonprofit to receive their Giving Back Award.  They are currently in the semifinal round, and Pattison's has made it to that round!  If you have a moment to spare, please vote for Pattison's by going to

http://www.charlestonmag.com/givingback/votenow

It's an easy way to vote.  Just choose Pattison's from the drop-down list of nonprofits, give your email address, and then choose whether or not you want Charleston Magazine to send you more information.  Simple.  I'm not sure if the winner receives anything other than community awareness, but community awareness can lead to more support, so I'm all for that!

And Lily Loves Pattison's!!!

At Pattison's, Lily got to try out their gait trainer, and I'm happy to say that she now has one of her own at home!  We're trying to get used to it, and unfortunately, she'll have to take a few weeks worth of a break from it due to the surgery, but she's taking assisted steps in it already!  We're taking it easy by using it predominantly as a stander for now, but we'll work her up to using it more as a walking device.  I just know that that won't take long!

So here are some very overdue pictures!!

Lots of balls!

I'm telling you, one day she's going to be a yoga teacher!

Preparing for the real fishing trip!

Lots of colors!

Fishing Day!

Bandaid Art

I think Lily would rather eat the markers than draw.

Ice Skating!!

You really should stop and smell the flowers

Her first manicure!

Time to go swimming

Lily's first facial!!

Checking out the tent

Getting ready for prom!

Dancing with Daddy!

My little ones

Prom Princess!

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.

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.

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.

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 http://pray4lilly.blogspot.com) 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!

All Is Well

It's been a little over two weeks since Lily was able to come home, and I am so happy to say that things are going so well! She came home able to tolerate her original regimen of feeds, which was amazing to me because  she had been on a fluid diet for about five days.  While I don't know the level of her pain, it sure seemed as if she wasn't feeling any at all.  She was so happy to be home and proved it by rolling around on the floor like her usual self.


Unfortunately, she did have a horrible diaper rash, but it has gotten better.  Her stools still aren't regulated, and we're experiencing at least one blow-out per day, but putting all of that aside, she is doing better now than she was when she was well prior to surgery.  She's not vomited, except when she stuck her fingers in her mouth and gagged herself.  She's not been on oxygen at night, either.  I'm really thinking we should get another sleep study done to make sure we're not making a bad choice keeping her off the oxygen, but she wakes up in the morning and seems well-rested, something that was not always the case prior to surgery.

Lily's even been making a few new sounds, one that I swear sounds like she's saying "mom-mom-mom," but when you look at her as she's saying it, she looks more like she's saying the "f" sound.  I also heard her make a "b" sound that sounded like "bub-bub-bub."  If she could learn to call Gabriel that, it would be amazing!  And she's made the "f" sound in the past.  I take time (probably not enough) each day getting her to watch me make those sounds, hoping that one day she'll imitate on cue and learn to use those sounds to indicate that she wants something.


On Friday, Lily's physical therapist came with a company we've worked with to get Lily's stroller, feeder seat, and stander.  David, the sales rep, brought a gait trainer for Lily to try out.  My phone was full of pictures, so I couldn't take any or get any video, and my camera quit working a few months ago.  David took a video, but I haven't received it yet.  Otherwise, I'd post it.  Lily did so well in the gait trainer!  She took a few steps independently!  Nothing big, but still exciting for her first time!  I hope we get approved for it.  It will not only allow Lily to move independently around the house, but it will also help her build her trunk muscles, which I hope would help her gain more control over her balance.  Plus, she loves to stand, and the gait trainer will give her more freedom of movement than the stander does. 

How thankful I am to be reporting all of this good news!  I'm hoping that I will be able to do the same at the end of July, when Lily's hernia repair surgery will be done.  At least this past surgical experience gives me hope that she'll be able to handle the hernia repair surgery.