Little Faker

See this chickadee?

She's been foolin' us.

All this time.  That girl has been all, "but I can't eat with a spoon!  They're the spawn of the devil himself, and you're NOT.  PUTTIN'.  THAT.  IN.  MY.  MOUTH.  I don't even know what to do with that nastiness that comes off of that thing." 

I mean, she may have some mental delays (whatever), but that sneaky little smile up there says it all.  I can hear it in her head even now.  "Nanny, nanny, boo boo!"  She's loved every bit of it, I'm sure, but . . . GAME OVER!  Do you HEAR ME?!  For the past four days, missy Maya has been downin' some spoon feedin'.

Four days ago, Craig said, "I don't know what's happening, but she's just gettin' it"!  So, yesterday Craig was gone and I decided to test the waters myself.  You see, kiddo and I hadn't been meshin' real well at feeding time.  We decided it was probably best that Craiggers take over for a while.  But yesterday . . . I mean, it had NO.THING. to do with jealousy of seeing the baby whisperer take control of the food reins and knock it outta the park . . . I don't think.  I just wanted to see what *might* would happen if I sat down at the high chair.  I envisioned an old western film where the two dudes are gettin' ready to do one of those gunslingin' duels.  You know, the 'let's see who moves first' kinda deal? I stared at her, and she stared at me.  She knew it was comin', and she darn well knew what she had up her sleeve. 

I brought out my guns (i.e. baby food) and she brought out hers (i.e. tongue).  From that point on, the battle raged.  Fast forward, people, and I WIN.  I WIN.  I stuck with it . . .

Ok, ok . . . enough.  Seriously.  The real story?  Maya wins.  She's three-years-old, and she's gettin' the hang of finally learning what its like to eat like a three-year-old.  We sat down tonight after last night's jar-and-a-half success and tried again.  A jar-and-a-half.  It wasn't pretty, and her bib looked like a rejected Picasso canvas, but she got at least half of it in her belly.  Tonight?  Even better.  Tonight we got even braver.  We managed to empty TWO JARS and a little bit of oatmeal cereal when things got a bit too soupy.  And we managed to do it with about half of the mess we made last night.

Things got exciting around here for a while.  We were all yellin' and hollerin', and she was gettin' down with it, too, with her little grins and all. 

I've tried to hold all of this optimism back thinking it may have just been a fluke.  But I think we may have it!  I emailed her therapist yesterday, and she replied back saying at some point, it just has to click.  I think Maya's brain may have been hearin' a morse code machine or something, because that's exactly what it did.  It just clicked.  PRAISE.  THE.  LORD.

This is honestly a ginormous answer to many, many prayers.  There were times my mind was seriously wondering stuff about feeding tubes, and there was even a tiny bit of discussion about it with the therapist last week.  Nothing like we were about to 'go there', but we all just talked about it.  God heard us, though, and as usual, he came through . . . shinin' like a Porter Wagoner outfit, I tell ya.

In other news . . .

We had our final checkup with the cardiologist today.  He said that every time he examines her, he learns something new.  This time he did a lot of imaging with her pulmonary valve.  This is what Dr. Chambers said may have to eventually be replaced.  He explained that sometimes with the kind of surgery Maya had, they surgeon will cut completely through the valve to do whatever it is he needs to do.  That pretty much makes the valve useless, and it has to be repaired immediately.  He didn't say this, but I imagine that they probably take care of this while they're doing the surgery for the original problem.  I mean, I'm not a doctor, but . . . well, you know. 

Anyway, They didn't cut through her entire valve, but they did cut through part of it, which kinda made it a one way street.  Go 'all or nothin' with me here, ok?  Basically, her valve works some, but not exactly like it should.  Its all good for now, sorta like her patch covering up that hole, but eventually that valve will probably have to be repaired, too.  So now we're looking at two eventual problems.  Nothing in the near future, but when she really gets growing they'll have to be addressed.  I guess when I said 'final checkup', I just meant that we don't have to go every month anymore.  He still wants to see us every 6-8 months to keep checking on those other pesky little issues.

But for now, well, we're just gonna eat.  And I'm ok with that.

And since you're so happy for us, too, go make yourself a sundae.  It's Friday, people.

Love,

Paige

Fire And Ice

Gavin and I did the coolest thing today. Sometimes school can get boring, but then sometimes you can make candles. Candles made out of wax and ICE!

This was so much fun, and really easy to do.

Wash out a milk carton and grab your materials . . .

 

Make yourself a double boiler using a wide pan and a large tin can.  Put several cubes of wax into the can, and let the hot water do its thing and melt the wax . . .

 

 

 

Once the wax has melted, gather up a bunch of ice cubes and alternate layers of ice and glitter (you want to make sure you've got glitter going all through your candle) into your milk carton . . .

 

 

So, I skipped the part about tying candle wick around the pencil and letting it drop into the carton.  You should do that before doing all of this other stuff. 

 

Moving on . . .once your wax has melted completely, carefully pour it into the carton . . .

 

 

 

And here's what you've got . . .

 

 

Tomorrow we'll untie the wick from the pencil and peel away the paper carton.  The melted ice will leave holes all throughout the candle, making for a pretty little piece of decoration.

 

Check back for the finished product!

 

 

 

 

 

 

 

 

The Truth

We're smack-dab in the middle of Gavin's school day.  He's working on science and I've just changed Maya's diaper and took her to a new 'center', so I have a few minutes to write about the truth of these days.

Rewind just a bit . . . I started making frequent trips to Birmingham a few weeks ago for Maya's therapy.  Right now, we're concentrating on OT just so she can figure out how to eat.  Plain and simple . . . how to eat.  Oooooh, no.  NOT plain and simple.

When the therapist says, "I'm not sure how we're gonna handle this", you know the ride has just begun, and the hill you're descending down is about to go into a black hole.  A hole that is JET BLACK, and gives no hint of light from the other side. 

We're in the hole, and its dark. 

Things are hard.  They're hard for us as Maya's family, and I know they're hard for her.  She doesn't understand the rubber contraption that's being circled around her mouth, just to get her used to a different feeling.  She doesn't understand the syringe with the big tube on the end that's put way back in her mouth.  She doesn't understand the feeling and taste of the food that's put on the back of her tongue.  To her, its an invasion.  To us, its basic. 

She has no idea how to make herself swallow.  While being fed with a bottle, the food is just automatically put down her throat, and she doesn't have to make an effort to get it where it needs to go.  Her cognitive skills are so low right now, that her brain has no idea what to do.  We don't know if its from her Down's being so severe, or if its a combination of that and the neglect she suffered in an institution.  We'll never know for sure, but the truth is, we're all frustrated.

I've prayed so hard over the last couple of weeks for God to give me the understanding and patience I need to get through her at-home part of her therapy.  I mean, how in the world do you TEACH a person to just simply swallow? 

God has answered my prayers, and I've made it through these feedings with a renewed since of compassion for my little girl.  When I stop to think about all of the things she's missed . . . love, touch, food, eye contact . . . all of those basic things in life, I have to literally 'renew my mind' and realize that this little girl is in need.  She's in need of the basics, and the truth is, God has brought her here for us to provide those things for her. 

I know that I've painted such a pretty picture of adoption.  What I feel like I've failed on, though, is bringing the truth to some aspects.  I would never, ever want to discourage a family that's considering adoption.  And I would never, ever want to change a thing that's happened with us over the past year.  The hard part of it is not knowing what in the world really happened with your child.  WHY did whatever-that-was have to happen?  How long will these hard things last?  Will she EVER talk to me?  Will she EVER learn how to eat food?  Will she EVER learn to walk?

Remember where that point of obedience to the Lord comes in, and you develop that compassion for tiny children who never even know what they're missing? That's when you become overwhelmed with a sense of urgency for those just like Maya who are dying simply because they're 5, and they've been moved to an adult mental institution.  This happened to Stacey, a little girl in Eastern Europe with Down Syndrome.  She 'aged out' of her orphanage and was moved, and died just a few months later.  WHY?  Because she was neglected.  Sheer neglect.  You can't treat a mentally disabled 5-year-old as an adult and expect him or her to thrive. 

Every day takes a new energy.  And every day, God provides that new energy.  While we worked on feeding this morning, God gave me the encouragement I needed.  Maya swallowed probably 30% (I have no idea how I came up with that percentage, but it seems to make sense) of what was put in her mouth.  That seems like a low number, but compared to other days, this was a pretty successful feeding time. 

She doesn't enjoy it at all.  She fights for most of the session, but somehow a little bit made it to her tummy.  We're hoping that the more we do this, she'll recognize the routine and keep swallowing.  As far as her PT goes, she doesn't enjoy her tummy time much, either, but if one of the other kids gets in front of her as we're working, its enough of a distraction that we can get through ten minutes or so of playtime in that position. 

My friend and sounding board, Tesney, wrote a blog post last week kinda laying it all out.  All adoptions require sacrifice, extra time, lots of money, and all aspects of understanding.  With very special needs, though, comes a whole different myriad of emotions and requirements.  But this is absolutely what we wanted, and what God wanted.  One thing that's extra-special about Maya is her happiness.  She's been through so very much, but she still gives the sweetest smiles and squeals of laughter.  Even during feeding sessions, before her tears have even dried on her face, she'll find something to make her laugh. Sometimes in her crib when she's alone, I'll hear her laughing.  Simply amazing. 

I've said it before, but I really do think God reveals himself to these special kids in very special ways.  His heart is so incredibly close to children, and I believe that sometimes he must comfort her in a way that we're still not able to recognize or do.  I know that Maya's life now is so much better than it was three months ago.  I don't say that to bring attention to Craig and me, but God is the one that called us to this purpose.  He's the one that is equipping us with what we need to provide for ALL of our kids everyday.   

Sometimes I really do have to stop and think of what God has blessed us with.  He's given us a child that can find happiness, joy and contentment is almost anything. 

Many times, I have stopped and thought of the ways that he's confirmed what we're doing.  And I have to stop and think of my thankfulness to him for the people that have made things easier for us.  Just last night, I met a lady that I was buying a jumperoo from.  We were messaging back and forth on Facebook, so I told her a little of our story.  She was selling this thing to me for $15, which was a steal as far as I was concerned.  Maya loves the jumperoo in the church nursery, and its great exercise for her legs.  It was very much worth $15.  Twenty minutes after I left, I got another message from her saying that her heart told her to tear up my $15 check.  She wanted the toy to be a gift.  I can't tell you how many times something like that has happened.  Sometimes you just need a little confirmation to help you to keep going.

So what's the truth?  The truth is that this whole process is hard.   Its trying.  Its tiring.  We're trying to make sure that our other children continue to feel important, too, while helping one who is weak just learn how to adapt in a home and family.  The other truth, though, outweighs all of that.  The truth is, Maya is precious.  God made her perfectly.  God knew her whole picture.  God is using this whole bunch of us to bring his plan for her to light.  And we're all a family.  A family of six . . . praise the Lord for our full quiver!

The truth is that no matter what challenges we face, God is giving us a love for Maya that makes us want to see her as he does.  And because of this, we'll fight for her, claim her, and help her to be everything in the world that he wants her to be. 

Love,


Paige