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.

Letting Go

I am scaling a wall. 

It is large, and it is brick, and on the other side is unknown territory.  I hate unknown territory.  It makes me worry and gives me negative thoughts and just, overall, makes me feel like a horrible person.  It reeks of everything I have no control over and covers me with fear.

Yet, I still scale this wall, compelled to get to the other side.

Imagine, your fingers holding into the cement-filled crevice between each brick.  That's how my soul has been feeling, while all of that unknown has been basking in its glory, knowing all that I do not.

It affects my relationships.  Bless Dave's heart.  He's been sitting here, night after night, listening to me analyze and fuss and worry over everything on the other side.  He's such a positive person, and I feel like I'm infecting him with all of my negativity.

It affects my Heavenly relationship.  Many times when I pray, I'm sitting on a mountain overlook.  I'm on one rock, and Jesus is on another.  And we talk.  Well. . .I talk.  He listens.  Every once in a while, He says something.  But first, I have to make it to that rock.  Lately, the path has been tangled with weeds and overgrowth, and I've had to fight it all--machete-style.  There is no reaching that rock on days the path is like that.

And this is how great and wise and wonderful my husband is.  When I told him that all of that uncertainty felt like I was scaling a wall, he gave me advice:

Just let go.

Just. Let. Go.  Let go of that wall.  Pull your fingers out of those crevices and stop scaling.  Well, now, I'd never thought about it that way before.  I was so hell-bent on climbing.  Let go?  But that means falling.

But that also means freeing my scathed soul. 

So I have let go.  I cannot tell you how freeing those three simple words have felt to me.  I let go, and I let in a more positive approach with less worry for the immediate future.  In no ways have I become Pollyanna all of a sudden, but I am definitely softening the calloused areas.  I'm starting to feel better already.  And to think. . .all I had to do was just let go.

Miracle

I wanted to post this yesterday, but I'm taking two recertification courses and had some reading to do.  I think I've actually posted about this before.  If I could only express exactly how much this means to me...

April 26.  A birthday.  Not mine--that would actually be today--but a young man named Kyle.  Seven years ago.  His birthday celebration at a Chinese restaurant, and one of the fortunes in the 

fortune cookie happens to say

Three days later, Lily Grace was born.

Happy birthday, Kyle.  I celebrate the fine, young man you've become, but with your birthday, I can't help but celebrate the miracle that was foretold on a small, white piece of paper stuck in a cookie in a Chinese restaurant.

Held

Lily got out of the hospital on Friday!  While I rejoice that she is home, I think there's a part of me that is still trying to process the twelve days that she was in the hospital.

Maybe there's a certain kind of shock involved in all of this.

And there are certain aspects of it all that I just keep going back to.  Like the first morning.

Dave and I had texted early Monday morning, around 4:00, and the thought was that I would just go to work as normal, probably try to take a half day, and be at the hospital around noon.  Things felt comfortable in that decision.

Two hours later, I got a text from him saying Lily wasn't doing so well.  I might want to get the kids and get to the hospital.  That was not what I expected.  At all.

I just remember feeling panicked.  The kids were all asleep.  I had to not only call into work, but I also had to put in for a sub.  I just remember sitting at the computer, hands shaking, crying, "Oh my God.  Oh my God!  OH MY GOD!  OH. MY. GOD!"  A crescendo of prayers and pleas and disbelief and panic and fear all balled up into those three words.  Even reliving those words, here, now, brings a certain aftershock from that earthquake that rocked my soul.  I think my body even composed a quick tuck, a deep breath, and a muttered, "Help me do this, Lord" before I got up and figuratively and literally got it all together.

Luckily, my in-laws got to the house before I left, so I was on the road to the hospital alone.  And this is the part I feel compelled to share.  While my legs felt like rubber and my thoughts were on how I couldn't wait to get to Lily and sing our "Jolly Holiday" song, there was also this sensation of peace that seemed to be floating all around me.

It's the same sensation I felt in the PICU.  Now sure, I was worried, but through it all, that whisper of peace hovered around that room.

One of my favorite songs these days is a song called "Just Be Held" by the band Casting Crowns.  While my favorite line in the song is "Your world's not falling apart, it's falling into place," I think this song more powerfully describes exactly what that peace I felt in the car and in hospital was.

I was simply being. . .held.

Take a listen:

So tonight, my prayer, my friend, is that whatever your trouble, no matter how minor, that you, too, find the peace in Him when you give all that trouble over and Just. Be. Held.

It's a Jolly Holiday

When Lily was a baby, she cried a lot.  I can specifically remember a day: she was crying, and I took her outside on the front porch and rocked her, trying to get her to stop crying.  While I rocked her, I sang the tune "Jolly Holiday" from Mary Poppins, Lily-style: 

It's a jolly holiday with Lily.

Lily makes your heart so light.

When the day is gray and ordinary,

Lily makes the sun shine bright.

Happiness is blooming all around her.

The daffodils are smiling at the doves.

When Lily holds your hand,

You feel so grand.

Your heart starts beating like a big brass band.

It's a jolly holiday with Lily.

No wonder that it's Lily that we love.

I can't think of a more appropriate song for this little girl.

One time when she was in the hospital (I think after her bowel obstruction), she was crying, so they let me hold her.  I started singing that song, and she immediately stopped crying.

She knows this song.

When Dave texted me early Monday morning (the morning Lily was admitted), telling me that Lily wasn't doing so well and to get the kids and come to the hospital, there came a time while I was driving, when all I wanted to do was get to the hospital and sing that song to her.

Remind her that this is how much she means to me.  

Even today, when I got here, she was in good spirits, sitting up in her chair, but she wasn't her playful self.  When I was all alone in the room, I sang that song, and I swear, that's when she took my hand and started beating it against her leg and started stomping her feet and started cooing.  It's almost as if she was singing along with me.

Yes, she knows this song.

So if you know the tune, sing it.  For Lily.  This little girl has a lot of people cheering her on and praying for her.  Probably because they feel the same way about Lily, too.

When Lily holds your hand, you feel so grand.

Your heart starts beating like a big brass band.

It's a jolly holiday with Lily.

No wonder that it's Lily that we love!

The Story of Grace

Lily has been extubated!  Now she's fighting the full-face bi-pap mask and withdrawal from some of her meds.  This is just as hard to watch.

We've come a long way.  The nurses keep saying how she looks like a different child from Monday when she was admitted.

I think she won this one.

But others have not been so fortunate.

One night when Dave was here, I got this text:

They lost a little one up here tonight. . .

And we have lost so many little Trisomy 18 babies lately. 

Oh, how my heart breaks for these families.

Yet I sit here, and I am looking at my little girl. . .

. . .and she is still here! 

Dave's text later said

Made me think about the "Angel of Death"

walking around up here.  

Don't know why I had that thought.

But I took comfort in knowing that he/she

laid her hand on Lily and said,

"Not just yet."

Not.  Just.  Yet.

I have no idea why Lily's life was spared and so many others' lives were not.  None of it makes sense.  None of it seems fair.

It's not.

I cannot help but feel that in that sparing, we have a responsibility.  I imagine that Angel of Death looking at us, her hand on Lily's little head, peacefully saying, "Not just yet.  Go live her story."

And boy, is it a story I love to live!

It's a story of life and love.  Hope and faith.  Courage.  And strength.  And growth.  A story of laughter...and tears...and worry.  And fight.

It is the story of Grace. The story of our Lily Grace.

A Series of Fortunate Events

I'm going to take a trip back to about two, maybe three, weeks ago because I'm still trying to make sense of it all.

I had finally found our stethoscope.  The one I usually use on Lily when she isn't feeling so well.  It was outside because, well, we usually keep it in the costume container so the kids can play doctor, and I guess someone must have taken it outside.  When I brought it in and tried it out, it wasn't working.

So I asked Rani if she had one. . .since she's now a dental hygienist.  {Yeah!}  She did, and she told me she would bring it the next time she came to the house.

When she brought it, it was in a bag.  A bigger bag than what I expected.  I went to put it in a safe place (no more costume container), and after I got back, Rani told me that the bag had both a blood pressure cuff and the stethoscope, and I could only have the stethoscope.  So, I got out the bag that I thought was the stethoscope, and put it in the closet.  When I handed Rani the bag, she told me that it was actually in the other bag, so I had to switch bags.  It was quite the ordeal.

(Ok, I'm going to interject here and say that I SWEAR that I looked in one of the bags to verify that the stethoscope was in it because I had gone into that closet A LOT just to get the stethoscope bag in it.  This is important information for later...)

Fast forward to Saturday.  Dave had been working, and all the kids were with me.  Everything went as normal.  When he got home, I went to the store.  I was not gone for more than 30 minutes, but when I got back, Lily vomited.  Weird.  She had been fine all day.  And then she kept vomiting.  Dave thought that she had swallowed something.  We discontinued her formula and gave her water instead.  But she kept vomiting.

I stayed up with her until 1:00 Sunday morning. She was dry heaving by that time, so I assumed she had a stomach virus and went to bed. 

The next morning, when I woke up, she had some dried snot around her nose, so then I thought that maybe she just had a cold and the vomiting was her sensitive gag to sinus drainage.  She also had a fever.

The day went on, and I still believed that she had a cold.  By the time Dave got home and was sitting with her and holding her, he noticed that her breathing was in short, quick breaths, so we got the pulse ox out to measure her oxygen levels and heart rate.  Oxygen was in the 80s (she was snotty and asleep), and her heart rate was in the 180s.  Whoa!  We hadn't seen heart rate levels that high since her bowel obstruction, but I was thinking that she might just be dehydrated!  So I went to get the stethoscope, but the bag that I had put in the closet was the bag with the blood pressure cuff in it! What!?!

So Dave decided to put her in the shower to hopefully open up her airways.

When they got out, he was cuddling with her in bed.  I went up to check on her, and she was breathing so quickly--definitely more than one breath per second.  I put my head on her chest, but really couldn't hear anything.  Then I did a visual assessment of her body and noticed that as she breathed, her stomach stuck out.  Retraction!  (Lily breathes a little differently from our other children, so looking at her lungs/diaphragm area isn't always a good indication.  Luckily, I was looking at her from the side and noticed her stomach.)

We then decided that he would take her to the emergency room.  (Let me also interject that from the time that he got home to right before I noticed her retracting, Dave and I were talking about if we should take her to the ER or not.  It's always one of those things where you just never know.  Sometimes, it's ok to just wait until the next morning to take Lily to the doctor.  When we saw the retraction, we both knew what to do.)

Thank goodness we did not hesitate!  By 6:00 Monday morning, Lily was in the PICU coding and being intubated!

Now here's where the stethoscope comes into the more recent story.  I'll say that I am no professional when it comes to using a stethoscope, but it's pretty obvious when something is going on in the lungs.  The thing is, up until yesterday, LILY'S LUNGS HAVE SOUNDED CLEAR!  The doctors have heard NOTHING in her lungs!  They've seen plenty but heard nothing.

And that is pretty significant. 

Because if I had had that stethoscope, I would not have heard anything in Lily's lungs either.  And if I had not heard anything in her lungs, I might not have looked at her breathing.  I would have blamed it on a hot shower and being warm under the blankets.  And I might not have been adamant about Lily going to the hospital.  I just might have said that we could just wait until the morning to take Lily to the doctor.  And if I had done that, Lily might not be with us today.

The kids taking the stethoscope outside so that it wouldn't work anymore. . .

Me asking Rani for hers. . .

Not putting the right bag--the stethoscope bag--in the closet. . .

Not having a stethoscope to listen to Lily's lungs. . .

Being at an angle where I could see Lily's stomach as she breathed. . .

A series of fortunate events, indeed!

The Walking Dead and the Fight for Life

Lily is in the hospital.  And she is sick.  Three different viruses, sick.  Pneumonia on top of three different viruses, sick.  It was bad.  Real bad. 

But things are getting better.  Slowly.  Her numbers are better, and she's now beginning to breath spontaneously.  On her own.  Above the machine.

She's been ventilated since early Monday morning. 

But she is a fighter.  A Walking Dead fighter.

Yes, Dave and I watch The Walking Dead.  When it was on, I looked forward to watching it.  I think, even though I am grossed out by all of the violence, I am intrigued by the psychology behind it--that of the living.

Think about it.  There are millions of zombies out there and not many survivors.  Luckily, the zombie/survivor ratio isn't all that bad usually. . .until this season. . .but still.

Is there really, realistically, any hope of Rick and his gang ultimately surviving millions of zombies? I don't think so. Yet they hold out hope.  And they fight.  It's just in them to survive.

Every time I watch The Walking Dead and I think about that fight for survival--that inherent fight--I think about Lily and her fight.

She's been fighting since before she was born.  She's been given horrible odds, and yet she fights.

And I am intrigued.

Because here we have a little girl who, according to all the different tests out there, is cognitively around a 9 month old.  Yet here she has this deep-rooted, unstoppable fight for her life.  Even though Dave and I have encouraged her every step of the way to fight, who knows if she's understood it.  Even if she has, I think it's less for us and more for her.  She's doing it because it's a part of her.

We've seen it time and time again:  from her fight to make it to birth, to the fight to take a breath when she stopped breathing. . .three times.  The fight to soar above "failure to thrive."  Conquering the first round of RSV, a bowel obstruction, a diaphragmatic hernia. We see it during therapy, as she strives to push herself past where we thought she'd ever be.

And we saw it when she coded on Monday. . .twice.

We see it on a daily basis. 

Every second of every day, this little girl fights.  And we've said it time and time again:  as long as Lily fights, we will definitely fight for her.

There's No Stopping This Girl!

There is so much I could say, but I'll let the video do it for me...

I am so grateful for how hard the teachers at Pattison's have worked with Lily. The speed at which she has progressed this year has been mind-boggling!  When Lily walked up to me, right after I stopped the video, she was right in front of me. Usually, if she were that close to me, she would put her arms around me.  Not this time. She held on to those handles as tight as she could!  That tells me that she understands what could happen if she let go. And around 1:22 in the video, if you watch her, you'll see that she slightly loses her balance but quickly corrects herself.  Wow!

Speaking of Pattison's, the spin-a-thon went very well!  They raised over $278,000!  Our team raised $3500 and a second team was formed by ladies of our church, and they raised $2030!  Not bad for newbies!  When I see what this school has done for Lily, and I know that summer camp will be an extension of that, I know that the money raised is definitely going to a good cause!  

It seems that today Lily got to job shadow. Just kidding. But she did spend some time with Ms. Christy in the office.  I've always said that Lily should be a yoga teacher, but maybe secretary is more like it.  She's a natural!

Looking at the picture, can you even tell that she has hearing aids?  Besides being able to tell that she hears better, we're seeing a difference in Lily's balance.  Not sure if it's a coincidence, but before Lily got the hearing aids, when she tipped in her walker, she wasn't able to correct herself.  It wasn't until after the hearing aids that her teacher was able to not have to hold on to Lily in some way while she was in the walker.

I'm telling you.  She never ceases to amaze me.

Up to Something Again!

She's gone and done it again!

Once again, Lily has defied our expectations.  There are so many things that have always dangled in front of us, teasing us as to whether or not Lily would be able to do such things.  And there are so many things that we've been able to check off of that list that's dangled in front of us because Lily has been able to do way more than we expected.

I'm sharing two videos.  One, I have finally caught Lily pulling herself up into a standing position.  The other, of Lily brushing her teeth.  (OK, so she's not really brushing her teeth, but it surely looks like it.  She does, however, hold the toothbrush and move it in a back and forth motion.  It's still a big deal because FINALLY, she's opening her mouth to allow the brush in. . .and that's just as big of a deal as her brushing her own teeth is.)

Lily has had some extraordinary therapists since she was a baby.  Every single one of them has helped her grow and strengthen and develop into this incredible little girl who's defying our expectations.  But all of this development that we're seeing her do now--walking using a walker and gait trainer, riding a tricycle by herself, pulling into a standing position--those could not have been done without Pattison's.

You may say, "Yeah, but she'd be at another school, getting therapy services there."  Sure.  But the equipment, the comprehensive care, the developmentally appropriate material--those little "extras" probably wouldn't be at another school in our area.  Pattison's is our Dream Academy!

So is their summer camp.

And that is why, this Saturday, I will be riding once again in their Spin-a-Thon.  It is why I've enlisted Rani and Autumn and my friends, Allison C., Alison C., Heidi D., Jana I., and Julie W. to be on our spinning team.  It is why I secured a second bike and asked other ladies of my church to join us and to fundraise with us.

It is because I Believe.  I believe in the power that school has to help my little girl reach unimaginable heights.  I believe in the love that school has for their students.  I believe in the experiences they know these children deserve to have, despite their disabilities.

We spin this Saturday.  Our goal, as in the past, is to be in the top ten of teams.  So far, we are in tenth place, but the eleventh place team is tied with us, so we've got some work ahead of us during the next few days.

We'd love to have your support.  It doesn't have to be much.  I fully believe that a lot of people giving a little bit can go a long way.  Your support--sure, it will help us get into the top ten--more importantly, though, it will provide four weeks of summer camp, four weeks of daily therapy, four weeks of exposure to arts and crafts and music and extracurricular activities.  That's four weeks extra that these kids get over the regular school year to get stronger and four weeks where they won't lose so much that has already been gained.  And for our kids, that's important!

If you would like to support us, you can find our First Giving page at http://www.firstgiving.com/fundraiser/brenda-reagan/pedal-4-pattisons-2015.  We are grateful for any amount.  And if you aren't able to give at this time, no worries.  Prayers are just as important, and we'll definitely take as many of those as we can get!

I leave you with a few videos and a picture.  

Lily's "brushing" her teeth!

I finally caught her!  Sneaky thing!  We've walked into the

room a few times, and there she is standing!  But this is

the first time I was able to get her on video.  We're in 

trouble now!

Look who got glasses!  Already we can see a difference.  The other night,
there was a block under the chair Lily was at.  She was on all fours, and she
put her head on the floor to look under the chair and reached under it to
grab the block.  We've never seen her do that!  I love checking off her
accomplishments!  I can't wait to see if the hearing aids help!

A Late Update

Wow!  How exciting the past few months have been with Lily!

She has gotten so strong and more aware!  About a month ago, I was sitting on the floor, running Lily's formula through her pump, paying no attention to her at the moment.  She was about five feet away and crawled toward the chair I was sitting beside.  I looked up and over at Lily, AND SHE WAS STANDING RIGHT BESIDE ME!!  She had pulled herself into a standing position!  I did a double take!  Unfortunately, she's not done it again, even though I've tried coaxing her multiple times, but I'm confident she'll do it again. . .and continue doing it!

At school, she walks on a treadmill a few days a week.  I'm not sure exactly what type of position she's in, but the other day, I got this text:  "She went 9 minutes straight with Shauna just a few prompts at the hips and holding her hands to keep them on the bars.  The most we've ever gotten is 6 minutes."  That text was followed by "Your girl is getting stronger and smarter every day!!"  Ah. . .music to my ears!  I asked if they used a harness and was told that they don't usually use the harness with her.  Her therapist usually holds her at her hips.

Another amazing thing Lily has done can be seen in the video below.  The first we've seen!  I'm sure there's more to come!

As for medical, Lily had an ABR (hearing test) and an MRI last Friday.  The MRI was to establish a baseline for her spine.  Both procedures required sedation, so we opted to have them both done at the same time because we weren't sure how Lily would do with the sedation since she's not always come out of it so easily.  I'm happy to say that she did quite well with the sedation, considering.

I've gotten the results of the MRI, but only through Lily's online records.  What that means is that it was in the radiologist's notes, so it might as well have been in a foreign language.  I'm willing to wait on those results until we see the orthopedist.  No big deal.

As for the ABR, Lily has mild to moderate hearing loss in one ear and moderate loss in the other.  That means she'll be getting hearing aids.  I'm a little concerned, but also excited.  I'm not sure how Lily will respond to them, but I'm hopeful that they will open up a world of possibilities.

Lily has a little cold, but she's in great spirits--very active and happy, as always.

I leave you with a few pictures from the past few months.

And a warning that the Spin-a-Thon will be soon.  You know what that means!  Fundraising!

Lily and Andrew "the gingerbread man", a teacher at Pattison's, the day
 of their Christmas party.

This is the night Lily stood by herself and how she looked. . .minus Dave.

Merry Christmas!

Lily and Aria--Christmas at Grandmama's

Soleil and Aria walking with Lily at Pattison's Christmas Party.
Actually, I think Aria was "helping" Lily by trying to push her.

Ah, Lily

Ah, Lily.  You love to make things interesting.  Not that you can help that.  But life is definitely interesting with you.

I am struggling.  That's the simplest way I can put it.  I am sad and worried and trying so hard to stay positive.

Lily had an orthopedist appointment the other day.  Dave took her.  She goes for scoliosis and kyphosis.  Because of the scoliosis (and I guess the kyphosis, too), Lily has to wear what is called a TLSO--basically, a back brace.  The hope is that the back brace will keep Lily's scoliosis from getting worse.

Unfortunately, it is getting worse.  And that is not a good thing.  According to the doctor, she will need surgery.  I'm not sure exactly when that will happen, but when the doctor told Dave that he doesn't want her in the hospital this winter, it makes me think that he's talking soon.

T-18 mommies are telling me that for her to have surgery at 5 is too early.  A nurse who used to work for this doctor is telling me to trust him--that he's well-known throughout the nation for his work with scoliosis, and he knows what he's doing.  I'm reading/hearing that this surgery will change things.  For instance, this nurse told me that we'd have to pick Lily up differently.  I read online that a child who undergoes this surgery would have to relearn how to get out of bed so as not to damage what was surgically done.  What's going on in my mind with that?  How are we supposed to teach that to Lily?  She's an active little girl!  She's mobile!  She's awake in her crib and pulling up on the railing so that she's on her knees.  How do we keep her stationary--heck, how do we keep her moving in the right way--when we are asleep?  Even when we are awake?

I wish I could say that was the worst of my worries.  I worry about the surgery itself.  This seems to be pretty major surgery to me.  I worry about her life after the surgery.  It will be different.  Will she bounce back?  Will she be in pain?  (I've read that children who receive this surgery experience more pain than older kids.)

I mean, will her personality change?  She's such a happy little girl.  I'm terrified of losing that.  And she's come so far.  I understand having to relearn after surgery, but does she have it in her when life for her now is quite liberating.

Dave reminds me how fortunate we are to have Lily now.  We've had five years we never thought we'd have. I know that.  But that still doesn't change one simple thing.  She's my little girl.  And because of that simple fact, I do not want her to be in pain.  I do not want her to lose her spark.  I do not want to lose her.

She's still a little girl--a kindergartener.  She smiles, she laughs, she plays.  She can't run around, but she moves.  And she knows joy.  Probably better than you or I.  I am just so afraid of losing all of that.

So, I don't ask often--at least, I don't think I do--, but please pray.  Whether it be for healing or our peace, for time or acceptance.  Please pray.

I'll leave you with two videos.  One is from the fair.  We were very close to the fireworks.  This is Lily's reaction.  The other was taken at school.  I believe this is the first time Lily stood up by pushing herself up.

The Essence of Human Existence

The other day in church, our preacher gave this pastoral prayer.  It touched me deeply, because this is how I feel regarding life.  I pray that if anything were to ever happen to anyone dear to me, that these words resonate within my soul.

Gracious God, 

That is the essence of human existence. . .that there is the tragic and there is the glorious.  There are the things that hurt us in life and the things that bring us joy in life.  We are always, it seems to be, tossed from one to the other and find balance-- find simply walking in a straight line--a very difficult thing.  We are slung back and forth from dark to light, from blinding brightness, to a gentle quietness. 

Help us.  

Help us to know that in the midst of all of that, You walk with us.  In those times when we would simply whistle to ourselves as we are walking down the street in a sense of contentedness, You are with us.  In those times when it seems as though we are terribly, terribly alone and we hurt in a way that no one has ever hurt before, still yet, You are with us.  Keep us ever mindful, and may we find the ways of thankfulness because You are with us.  

Not because life is what we want it to be.  

Not because all is well.  But because You are with us and all is right--even in the hardness, all is right--in Your presence. 

That's a hard thing to understand.  

So we ask that You would help us in the groping times to find You and the right.  And in the groping and the hoping and the longing we find that our longing reaches beyond our own needs into the wanting goodness for those others around us and those others in far off places.  

Later this morning we will pray together, "Your Kingdom come on Earth as it exists now in Heaven."  May Your Kingdom begin the coming with us and our willingness to live as Kingdom children.  Remembering and holding dear to all those for whom the kingdom seems very far away.  This we ask in the name of Your Holy and Beloved Son.

Amen 

And Amen.

(Just in case anyone was wondering, I received permission from my preacher to publish this.  He wasn't concerned with me sharing his name.  I would love to give him full credit, but for the sake of Internet safety, I've decided to keep his name off of this blog.)

This Little Girl Is Moving!

On September 19, Lily's teacher sent me this video.

Today, she sent me this one.  Boy, has this little girl come a long way.  Happily so!