Shipwreck

I am reading a book that I just have to tell you about.  It's called How to Survive a Shipwreck by Jonathan Martin.  I was interested in reading it because (1) it was recommended by one of my favorite famous people, and (2) I thought it would teach me how to survive what I thought was my own shipwreck of a life--you know, the crazy, chaos-filled whirlwind that sometimes just seems like...well, a shipwreck.

A few pages in, I realized Martin is talking about shipwrecks.  Those like lost loved ones, divorces, cancer diagnoses.  My immediate shipwreck was more like a homemade Lego boat sinking in a kiddie-sized swimming pool.

But I've heard that you can drown in a tablespoon of water.

And relatively speaking, my shipwreck does sometimes feel like something I'm drowning in.  But I have been through other shipwrecks that have been of Martin's Titanic proportion.

--A divorce, where the sandy bottom scraped reminders of how I had failed to keep a family together

--My Nana's death that plunged me for the first time into the darkness of death

--A Trisomy 18 diagnosis that is a cement block tied to my ankle, forever pulling me to new depths

Preparing a funeral for Lily before she was even born, watching her little body turn blue as she lay in my arms after birth, hearing words such as, "Do you want us to perform life-saving measures on your four-year-old?" and "You need to get to the hospital fast.  Things don't look so good."  All of these have made my heart die a thousand deaths as I've scrambled for breath while plummeting to the bottom of this ocean called life.

But Martin says something that hit me hard.  The waters that drown are the waters that save.

Let me say that again.

The waters that drown are the waters that save.

Yes.  Yes.  Yes!  You have to let yourself go all the way under--into the depths of God, into the depths of your own soul, into the depths, of life itself  he continues to say.

And that, too, is where I have been.  He is right.  I have found it time and again, where I am that sunken ship, amidst all the wreckage, and there, I have found Him.  There, I have been lifted with the only arms that could ever lift me out of the weight of that storm above.  He's been there.  Right there.  Every time.  Even when I didn't see Him amidst all the debris.

Friend, your shipwreck may be big; it may be small.  But it is yours.  Own it.  Because I tell you with the deepest of sincerity, He is there.  Right in the middle of it with you.  Search that wreckage for Him!  He's ready to lift you out of those troubling waters.  But friend, you are going to have to face that shipwreck head on.  You may even have to sink a little more. Just like I have had to do.

I won't lie and say it will be easy.

It won't.

But don't be afraid to face it, and then let Him help you through it.

He's been waiting all this time.  I promise.

Normal

I had an interesting revelation tonight.  At church, a young boy was holding Lily's hands, and Lily was being ornery with him, not letting his hand go, probably scratching him with the fingernails that we've needed to cut for a few days.  Gabriel went up to Lily to help the poor boy and ended up rubbing her head a little roughly, playing with her.  A friend laughed and commented on how people are usually so gentle with Lily, yet here we (her family) don't treat her with the same kid gloves.

As I was playing with Lily tonight, thinking about my friend's comment, it dawned on me how abnormal it must have seemed to her to see Gabriel be so rough with our delicate little Lily.

Then I thought how life with her feels so. . .normal.

I watched her hands as we played high-fives--how absurdly stretched out of their usual clenched fist position they are when we play.

I watched her eyes as they crossed, fighting the sleep that was trying to pull her under.

I heard her insanely loud coos, shattering the silence that we shared in the room by ourselves.

I gazed at her teeth--oh, those teeth--protruding from her relentless sleepy thumb-sucking.

I marveled at all of this and relaxed in what felt completely, 100% normal to me.

And I thought about how abnormal this all must seem to the untrained eye--to those who do not know and love Lily.

What seems abnormal to me are the stares we get when others recognize that Lily is not a typical seven year old.  What seems abnormal to me are the snickers we get because Lily is different in their minds.  It's uncomfortably abnormal.  It's make-my-skin-crawl abnormal.

I don't blame them.  Different is uncomfortable, and some people just don't know how to handle being uncomfortable.  When I come across those differences, I think about all the amazing people out there who love Lily--the ones who accept her hands, eyes, coos, and teeth.  The ones who treat her gently.  The ones who can laugh with us at our strange sense of normalcy, the way my friend did tonight.

I think about them, thanking God for our fortune in having them as friends, and suddenly, life feels normal again.

Marathon

Last night I ran a marathon.  Not THAT kind of marathon--anyone who knows me knows that they created the 0.0 window decals just for me.  Running is not something that I enjoy. 

The marathon I ran last night was just as strenuous, though.  I puffed and panted through trying to keep my mind off of Lily's surgery, which meant trying to keep the negative, scary thoughts away.  They like to burrow deep and eat away at my soul.

Exhausted, I went to bed with my eyes literally pointed towards heaven with the chorus to "Fix My Eyes" playing in my head.  Luckily, I fell asleep quickly; otherwise, I may not have been so successful.

Last night, I ran a marathon and made it to the finish line.  This morning, though, I tripped over some untied shoelace of anxiety, and that's where the race broke as all the negative competing thoughts rushed to overtake last night's lead.

They are harsh and cause raw, festering blisters in my heart.

What if this is our last bath?

Can I memorize the way her fingernails lay into her fingers?  The softness of her skin?  Just in case?

How would I take her carseat out of our car?!?

THAT deep.  THAT negative.

They get macabre, I know, but. . .what if!?  It's almost like I just need to prepare my self.

Just in case.

She's in there right now.  I know she is in good hands, but I can't help but see how her physical vulnerability and my emotional vulnerability are on equal ground. 

It kills me to know that she went into this all happy and not knowing what the heck we were about to put her through.  It seems so unfair because she is the last one to deserve all of this.  Yet she also doesn't deserve the alternative in not having this surgery, so this option is the better of the two.  Not a hard choice to make, but still a choice that is hard to swallow.

I may have stumbled, but I'm still in this marathon.  A friend shared a prayer that will become my own fight song today:  "Be not afraid for I AM near."  I may be surrounded by competitors who are out for blood, but I have a companion in this race (although sometimes I do lose track of that).  He reaches down and helps me up.  Every time I stumble.  He encourages me to continue on this lengthy journey. 

We will even hold hands as I cross the finish line.

I can do this. 



 

 

C is for. . .

And this is why on September 7, Lily will be having surgery on her back. It breaks my heart to see her this way, all crooked and contorted. 

I can remember when she was an infant, how she would lay on my shoulder like a little letter C.  It was almost as if her little body was trying to tell me, "C is for crooked. C is for contorted."

But it's also for cute and cuddly and charming and lots of other positive words that make up her little frame. 

I'm scared to death of this surgery, but at the same time, I know it is what's best for Lily. Eventually, her lungs will be compressed by the weight of her body's leaning and the squeezing of her to cage and her breathing will be compromised. That seems even worse than surgery. 

We have a little over a week to once again prepare for this bodily invasion. I'm doing good so far, but I'm really trying not to succumb to the negative thoughts and feelings that gripped me once before. I want to have good thoughts. I want to be at peace with this. I want to enjoy these last few days before Lily loses all that she's gained in these amazing six years. It's going to be a fight, but I'm hoping all of that loss will only be temporary. 

We've had a lot of positive comments about her doctor and the procedure itself. 

And as we've seen with Lily before, C is also for champion. 

Human Kindness

Breathe, Mom!  I'm not pregnant!

The other day, I was driving down the road.  The car in front of me had this sign on its back window.  Baby on Board.  All of a sudden, this urgency of protectiveness washed over me.  I seriously hoped I was driving safely enough around this vehicle.  I wanted to do it for that baby that was on board that car.

Then I dove in and gave it a deeper thought:  "Wait a minute!  There's not just a baby in that car.  What about the driver?!  Maybe there are children riding along." 

And I got a little sad.

Sad, not because we have to be reminded to drive more safely because there is a baby in the car ahead of us, but sad because we offer up such a protective state when we see a baby. . .and yet, we lose total focus of the mere fact that what we should be doing--what we are called to do--is respect the fact that there is a human being--a living, breathing, child of God--sitting in that car.

Some of us will rationalize that the person sitting in that car is not worthy of our respect.  It may be gender or color or behavior that stirs us to excuse ourselves from showing that respect.  It may be ability, financial or physical, that we think gives us the right to look down on that car's occupant.  It may simply be that the person just. . .well. . .isn't as perfect as us.

Before I went to South Africa, I read Desmond Tutu's book, No Future Without Forgiveness, and I thought I landed on a gold mine.  He talked about this concept called Ubuntu.  At its basic sense, according to Wikipedia, it's "human kindness," but Tutu explains it as much more than that.  "My humanity is inextricably bound up in yours. . .a proper self-assurance that comes from knowing that [one] belongs in a greater whole and is diminished, when others are tortured and oppressed, or treated as if they were less than who they are."

And my life was changed.  That is how I decided I wanted to view humanity.  It seemed to me the way God would want it.  That my human-ness is woven within, and because, of your human-ness, and when you (whoever you are) are diminished, so. Am. I.

Of course, I get distracted.  I get side-tracked.  I, too, forget that if we stripped ourselves of our ethnicity or our inadequacies or our transgressions, we are basically human--soul-bound and struggling to make sense of it all. I, too, forget that we all have needs and wants, and we all pray in some way to be spared from a miserable life, just like the next guy.  Some of us walk away a little more fortunate than others.

But whether our coin was tossed and landed on heads or tails shouldn't matter.  We are called to love.  I don't think it was meant to be that difficult.  We just have this inclination to make it complicated. 

The End of a D.R.E.A.M.?

I remember exactly where I was when I got the call telling me that Lily made it into Pattison's.  The kids and I were driving down Maybank, and we were near this roadside stand where I've purchased flowers for teachers during Teacher Appreciation Week.  I was so excited, and I remember telling Gabriel how she got into the school once I hung up the phone.  And then I got a call back saying that she actually wasn't old enough, but she may be able to get in on a visual deficiency technicality.

Obviously, she had the visual deficiency.

She didn't begin on the first day of school.  Actually, it was about a month later.

And it's been a D.R.E.A.M.

But now that D.R.E.A.M. may be coming to an end.

This is the way I know the story:

Months ago, a letter was sent to the parents of the students saying that PACE was losing its charter.  Whether that is because the district took it away or PACE relinquished it is beyond me.  I've heard one answer from the school and another answer from our local newspaper.  We received a few emails that were very positive in nature explaining that the school would now be called The Pace Center and that a very positive relationship between the school and the district was being formed.

Then I started hearing things.  The first questionable item was a letter asking us to raise $70,000 in a month.  I didn't understand why the school would be asking for this money if the district was paying for the building and the buses, among other things.  Then people started talking.  I first heard about a few teachers and aides not returning.  I didn't question that.  Then I heard that Lily's teacher wasn't returning because she had not gotten her contract yet, and she couldn't risk not having a job.  Turns out, no one has received contracts yet.  Hence, it's not expected that anyone will be returning. . .including the principal.

I'm wondering here:  it might be easy to hire a new principal, or pull someone associated with the school from his or her position to be an acting principal.  Both have happened before.  But the last time I checked, special education teachers were a high needs population of the education profession.  How do they plan to replace these teachers with qualified personnel?  And if you can't find teachers, how do you have a school?

It all just feels very intentional to me-like a suckerpunch.  And I don't like it one bit.

I'm losing sleep, I'm so distraught over this.

When Lily was born, I decided to continue working.  We basically hired a nanny to watch both Gabriel and Lily.  I came home twice a day to nurse.  It was exhausting and very hard on me, but I did it.  And then our nanny got a job in her profession.  Dave and I decided that my staying home would be better.  It beat the emotionally exhausting job of trying to find someone else whom we could trust to watch our kids. . .especially one who cried practically all day long.

Finding people we can trust to leave Lily with is still an emotionally exhausting part of our life.  It's not just worrying about a caregiver staying with her here at home.  It's also about her teachers.  Lily cannot speak for herself, and so it is extremely important that we establish trust with any of her caregivers.  And it doesn't happen automatically.  It takes time.  And it takes a lot of energy.

And here, we are going to have to go through it again.

But the person who's going to be with Lily all day is also going to have to know Lily's cues.  There's a sound she makes when she's about to vomit.  Lily's teachers knew that sound.  Now someone else is going to have to learn it...quickly; otherwise, there is going to be a big mess.

That person is going to have to know her sounds and her expressions.  One early year, Lily was just not happy all day long.  She was crying a lot. . .and she never cries.  The school finally ended up calling me, thinking she was sick.  I came in, and saw that the face she was making was her "I'm in pain" face, and after checking her out pretty thoroughly, I saw that her shoes were too small.  It was an honest mistake, so I wasn't mad, but this just goes to show that you have to know Lily and her expressions to get an idea of what's going on with her.

And I just hope that that person is going to love Lily just as much as Casey and the other teachers and aides love her.  Will that person be willing to come by the hospital to check on Lily. . .four times in twelve days?  Not that it matters, but would that person openly offer to babysit Lily?  What is the depth of love this new person will have for our daughter?

And the school?  If not PACE (or The Pace Center), where?  And what equipment will it be able to provide for Lily?  A treadmill?  Multiple seating arrangements and standers?  A ceiling swing?  All of these types of equipment are part of what helped Lily gain strength and stamina.

As did walking from her classroom to the gym/lunchroom every day.  Is a new school with lots of typical children running around going to be able to allow Lily to get the footage she was able to get at PACE when walking from her classroom to the lunchroom?  Will it be able to keep up the pace (no pun intended) by providing adequate opportunities to improve her stamina, like the treadmill did?

And who is going to administer and attend to this during the day?  Casey was Lily's teacher.  She was coached by the therapists THROUGHOUT THE DAY on ways to help Lily physically, occupationally, and verbally because those therapists were there all day every day.  If I'm not mistaken, in a public school, the therapist comes when she (or he) is scheduled to come, which most of the time is not every day, and certainly not all day.  I could go into the building and speak to any of the therapists when I picked Lily up, even.  I'm not sure that would happen in a public school.

And the nurse. . .sorry to sound needy, but having a full-time nurse who was only having to worry about 30-something children with special needs was a God-send.  If Lily goes into a public school, the nurse there is going to be worried about fevers and insulin shots and inhalers and lice.  If not for the nurse at PACE, I'm afraid Lily would have been in much worse conditions at times.

I could go on and on.  I could talk about the bathroom situation, the air-quality, the condition of the building.  I could talk about the fact that I really don't want Lily to be included in things like library and art and music with a class that may have out-of-control children, when Lily can do nothing to defend herself.

I think I've said enough tonight.

It's just not easy to release control of certain things regarding Lily's care.  But it's even harder to feel like we've lost one of those things that Lily loved so much.  She knows the word "school" and would get so excited when I'd tell her we she was going to school.

Even if the school stays intact, the people Lily (and we) love will not be there.

I'm angered.  I'm saddened.  I'm unnerved.  It's July 18th, and there has been no communication regarding what's going to happen to the school.  I don't even know if I'm supposed to be looking for a place for Lily to go to school.

There's a part of me that just wants to sit back and wait.  I want to fight, but I also want to keep quiet and see if Lily will fall through the cracks, if "they'll" even contact me regarding her schooling.  Based on what's been going on, I wouldn't be surprised if they didn't.

Squatty Potty

When Dave and I went to China, we were pleasantly surprised by the bathroom facilities there.  Our hotel had a typical American toilet, but in a lot of the places we went (including the train), they had squat toilets.  They basically looked like a sink with a bigger, toilet-sized drain embedded in the floor. Google it.  You'll see.  It seemed silly and was uncomfortable on a psychological level only because it wasn't a part of my norm, but the Chinese know what they are doing.  Apparently, there are benefits to being in a squatting position when using the bathroom as opposed to sitting as we do here in America.

 A few months ago, Dave got into this habit of putting Lily on the potty before he showered her.  She would sit there, holding on for dear life around his neck, but she would go potty!  This became a regular for her, so we decided to try it at different times, and again, she would go potty!  Still holding on for dear life.  It wasn't easy holding her there, waiting for her to use the bathroom.

It was time to think about equipment that would allow Lily an easier way to sit on the potty.  I mean, it couldn't be comfortable for her to sit there for five to ten minutes with her legs hanging.  But I didn't want a big piece of equipment taking up one of our bathrooms either.

Our solution?  This. . .

No hanging feet.  No holding on.  No bulky equipment.

This has changed our lives in so many ways.  First of all, when we put Lily on the potty, I'd say she uses it about 90% of the time.  Also, she can sit on this by herself.  Now I'm not going to walk away from her, but I don't have to hold her, and she doesn't have to hold on to me for dear life.  Most importantly, though, this has changed how we test for UTIs.

In the past, we've either had to cath her (which is traumatic and invasive) or bag her (which is a complete mess and takes about ten tries to just get urine in the bag).  In the past, with the bag, we've sat and sat and sat at the doctor's, waiting for her to pee.  It's all been a mess.

Until now.

Now, I just bring a cup home and get a urine sample while she sits on the potty.  I even went as far as to take the toilet seat with me to the doctor's office the other day when I suspected she had a UTI.  She didn't go, but it was worth a try.

As for the UTI, she did end up having one.  The cause?  That pleasant little bacteria, e-coli.  We had an MRI done to test for a fistula, but the results pretty much came back inconclusive.  I've yet to talk to her doctor about it, but yet another UTI with e-coli leads me to believe the fistula is the culprit.  We'll see in June how the doctor wants to handle this one.