Kids are better than adults - part 1

The lengthening process requires her to have 11 "pin sites".  In short, each of these pin sites have a pin - about the size of your pinky - visibly piercing through the skin and into the bone.

Let me give you some quick back story into Lydia Cash.  She loves to be pretty.  She loves pretty dresses.  Pretty lips.  Pretty purses.  And she loves to be TOLD she's pretty.

Pin sites are not pretty.

Given the information I've given you about both the pin sites and Lydia , I am sure you can agree that she was rightly devastated once she looked at the pin sites for the first time.  She refused to have them uncovered.  She refused to look at them.  And if you wanted to/needed to look at them, she must give you permission.  It's her body, so her requests weren't absurd.  We respected that she wanted them covered and got a pink fixator cover for her to wear.  Which she did.  All.  The.  Time.

Enough with the "this process stinks and I can't believe you are doing this to your kid" part of the story.  Let me tell you the bestest part.

But first, I have to tell you about how I can be a horrible person.

After the hospital part, we stayed at the Quantum House for a few days.  It's like the local Ronald McDonald House.  20 families all living on top of one another, sharing a kitchen and common spaces during emotionally trying times.  (So give me a break).  I was in the kitchen having a conversation with a lady from Germany whose family I had grown fond of over the last few days.  We were talking about pins, muscles, nerves, yadda yadda.  There is a third person - a grandma - who is eves dropping into our conversation.  She had a grandson who was seeing the Dr. for a consult and was just being introduced to this life that so many families call normal now.  Eves dropping in this context is 100% completely normal.  Long story short, Grandma starts crying.  In the middle of the kitchen.  In front of my daughter.  In front of me.

I basically wanted to tell Grandma - "Hey, I'm barely keeping my sh*t together right now, so I need you to buck up.  Take it back to your room.  Go break down with someone who can help you.  But me?  I've got nothing to give right now."  I try to be comforting to her.  I really do.

But, I can only imagine the look on my face.  In this moment I was completely judging Grandma for imposing her emotions into my life.

Meanwhile, my daughter amateurishly maneuvers her wheelchair around me parks it in front of Grandma.  As Grandma is crying in the corner of the communal kitchen, Lydia looks up to her and says, "It doesn't hurt.  It doesn't hurt.  Here.  Look." and she opens her fixator cover for Grandma to see.

Before that moment, Lydia hadn't even seen her own pins.  She hid them under sheets, blankets, and covers.  But in that moment, she saw a lady's grief and put her own sadness aside.

Before that moment, I had no grace.  And where I had no grace, this child had kindness. and gentleness.

I pray that she always have the most grace.  The most gentleness.  The most kindness.  I pray that she is always better than me.  And I pray that she realize that these are the qualities that make her beautiful.

Xoxo
AC

The NERVE!

We deal with our fair amount of staring.  Mainly because I'm beautiful and my husband is hot.  But then, you add in the fact that our kid's been wearing a fake leg for a few years and you can see why people would want to look at this interesting family, right?  Now that she has the fixator on - people look just because they don't really know what's going on.  Take this puppy for example:


If you saw this puppy, you would look at it.  Even if you don't like puppies.

It's cute and you really don't understand why he has a jack attached to his leg.  (EDITOR'S NOTE: 1) I don't have an editor.  This is just my way of adding information without completely destroying the cadence of my post.  2) Please understand my sarcasm.  I'm not unnaturally vain. But C'Mon!  That was a funny intro! 3)  That is a fixator on the puppy.  Not a jack.)

But this blog post isn't about cute puppies or even people staring.  Really, it's about the physical nerve that runs through your body.  Currently, Lyd is overcoming some pretty severe nerve pain.  There is a nerve running down your leg that has to be lengthened with the rest of the leg.  If you lengthen the nerve to fast, it gets ANGRY!  Well, we pissed that nerve off.  Nights became unbearable.

Long story short, we had an odd PT time the next day, which lead to a random bump in with the doc, who worked his magic and gave us some relief.  Suffice it to say that the chain of events was completely abnormal for a variety of reasons and was obviously divinely orchestrated.  Why?  Because my God is awesome.

Among other things, we were instructed to slow down pin turns to 3 times a day in order to give the nerve time to heal.  According to my math - and assuming we stay at 3 pin turns a day - that just upped our stay in Florida by more than 20 days.  As the emotionally terroristic girl from 13 Reasons Why would say - F.M.L.  (I'm on Tape 2, if you can't tell).

We had our first real post op appointment last week!  And my girl is now officially back to where we were when this journey started.  Because we gained half an inch - but he had to remove half an inch. . . so here we are.  As I look at the xray, I realize that there is a whole lot going on there.  But just trust me - there is a half inch of new growth there between the two sets of pins in her femur.  Lydia worked her tuchus off for that half an inch.

Finally, I want to say a huge thank you to all those wonderful people who have kept us in your prayers.  Lydia has received cards, gifts, an Easter basket, and trinkets that mean the world to her!  You have no idea what the videos, mail, and packages do for her.  I can't articulate it, so instead, I'll show you.  Now, before someone goes all crazy - it's not grape juice.  It's wine.  And it's not hers.  It's mine.  But I believe that you can tell that - even though it's not hers - the joy of gifts to a child just lifts your soul!  So, thank you.  Very, very much!
XOXO
AC

Long Hair - Don't Care

Hello blogger.  Its been, what?  A year?  Closer to two?  Sorry, I've been doing things.  Important things.  Really, I only activate this status report when surgical years come looming.  First, let's address the elephant in the room.  The fact that I use the term "Surgical Years" in such a nonchalant manner should be concerning.  It's not normal.  But alas, one person's normal is another person's. . . vacation?  I don't know how to finish that sentence.  So, I'll just let it hang out there like that.

We are currently in Florida and will be down here for another 3 months (give or take).  Let me digress for a second.  I'm currently growing my hair out like Rapunzel.  I didn't cut it for a really, really long time.  (Keep following me here. . . I'll get to a point.)  I went to "get a trim" and the hairdresser cut, like 6-8 inches off.  I told her that I wanted to grow it out.  Obviously, she didn't understand me, right?  Well, no.  Why grow hair out if it's just going to be gross?  To have a beautiful mane, it needed to be cut.  I say all that to say this - we are down in Flordia to grow Lydia's leg.  We get to the pre-op appointment for one lengthening and the surgeon tells us that he is actually going to cut out 11 millimeters of her tibia.  Similarly to the version of Amber sitting in the salon chair, I wanted to say, "Umm, I don't think that you understand that we are here to grow the leg. . . not shorten it."  Alas, her ankle is all kinds of wonky too and in order to correct it and move two steps (or 80 millimeters) forward, sometimes you have to take one step (or 11 millimeters) backwards.  I could easily look at all of the metaphorical hair on the salon floor and wallow in sadness, or view this is an awesome blessing that my kid's going to have an extra working joint.  The Cashes choose the latter.

The surgery sucks.  The hospital stay sucks.  She needed a blood transfusion, like 3 days post op, which sucks.  But I would tell you story after story of how she's shown loving kindness to those around her even though she is in straight up pain.  She's met families from Israel, Africa, Poland and Germany; she's learned how to maneuver a wheelchair like Mario Andretti; and she's stared fear/pain/loneliness in the face.  She's 4.  She (and these other kids) are made of steel.

She misses her friends.  She misses her classmates.  She misses her teachers.  She misses her cousins.  She misses her house.  She literally thinks that this will never end.  That she will never walk again.  And that it will hurt forever.  But still she persists.  I dont know what the #Shepersisted hashtag was all about, because I was dealing with other things. . . but Imma drop it - #Shepersisted.

This update doesn't get pictures.  I don't post hospital pictures.  But very soon she will start walking.  Very soon she will make new friends.  Very soon she will discover her "new normal" (as a very dear friend of mine would say).  and very soon you will get to see the feat of engineering that is attached to her body (because you can't NOT see it.  It's huge.  and she's small.)

As always, God shows himself in the pain more clearly than you could ever imagine in the calm.

XOXO
AC