It occurred to me...

...that God has been doing something with Emma I didn't quite recognize.

We have heard for a couple years now that kids in Emma's classes at school and at church just love Emma.  They want to help her and play with her, and they pray for her during their nighttime prayers.  We have always wondered if Emma is nice to other kids and if she talks to them a lot - we don't hear her have much interaction with them, but we also haven't been with in her classrooms, either.

In the last couple of months, Emma has come out of her shell big time.  And she's hilarious.  We continue to hear that other children love Emma.  We've been hearing it more, actually.  And seeing these pictures sent to me from her daily summer camp at our church, I realized something...God is blessing this sweet child of ours with a personality that draws kids to her.  Because she can't walk, kids come to her.  She asks/tells them to come play with her, and they willingly go.  And if she takes off in her wheelchair, they follow.

Four square:

Water day:

I remember a high school soccer game recently when kids were running around Emma, and she was having a blast with them, laughing, even hugging them.

At a 4-year-old friend's birthday party recently, the birthday girl's 7-year-old sister drew Emma a picture that included Emma in her wheelchair, with a note across the top that said, "I love you, Emma!"  Emma had never ever met this girl before.

At a party this past weekend, Emma invited herself to spend the night with a family she did not know, along with another boy she did not know.  I couldn't believe it.  Obviously, she didn't spend the night with them, but who is this child, and what did she do with my shy daughter?  She actually approaches other kids now and asks them their names.  At this same party, she didn't. watch. tv. (her favorite pastime).  Instead, she engaged the other kids who weren't that interested in tv, either.  It was miraculous and so heart-warming.

So God is teaching our child to be patient, kind, outgoing, fun, and funny so that other kids are drawn to her and want to play with her.  Since Emma can't necessarily do all the things that other kids do and go to where they are, He's making sure that other kids want to come to where she is.

There is no better feeling than seeing God love your child.

It finally happened

A while back (no idea how long "a while" is), I posted that I have a fear of that moment when Emma realizes that she is different...and doesn't like that she is different.  It happened tonight.

Emma has central sleep apnea, so she sleeps with a bipap mask.  Today she saw her sleep specialist to hear about the results of her most recent sleep study.  Side note: no major changes.  The doctor did give us a new mask to try on Emma because the one she has puts more pressure on her forehead, and he doesn't like that it could slowly change the shape of her forehead bone(s?).  Because, you know, we don't have enough to worry about.

Anyway, Russell tried the new mask on Emma way before bedtime, just to see how it would do, and she was sooooo upset about it.  She hates the mask anyway (and why wouldn't she?), so putting on a new one when she wasn't going to bed wasn't her idea of a good time.  And then she said several...I mean SEVERAL...times that she wanted to be plain.

I wanna be plain Emma.  I just wanna be plain.  I just wanna be plain Emma.  I wanna be plain.

Over and over and over, through cries and sobs.

After very gentle questioning, I got her to tell me that she wanted to sleep plain.  No mask.  Just plain.  She wants to be plain Emma.

What is plain Emma?  No bipap mask, no "shield" (scoliosis brace), no nightly bowel program, no diaper changes for a 4-year-old, no AFO's, no twister cables, no eye patch, no glasses, no Miralax, no weight management, no crawling, no wheelchair, no stander, no physical therapy, no occupational therapy, no inability to swim, run, walk, or stand alone, no choking on her own spit, no daily vitamins, no sensitive gag reflex, no daily antibiotic, no daily fish oil, no relying on anyone to get in and out of the car, no fear of falling, no avoidance of stairs or curbs, no shunt, no surgeries, no MRI's, no neurosurgeon, no sleep specialist, no orthopedists, no urologist, no therapists, no nurses, no sleep studies, no scoliosis.

Of all these things listed above, Emma has only become aware of how different she is in one aspect: the mask.  The rest of it will come.

Can I be honest?  I want her to be plain Emma, too.  Emma is extraordinary in spiritual and emotional ways, and she always will be.  But my heart aches for the times now and in the future when all she ever wants is to be plain.  If you're reading this, take a moment sometime today to thank God for making you plain.  And if you're not plain, thank Him for the people who are, who take care of you.  You see, we give God the glory whether we are plain or not: we should either be thankful that we can help the ones we love with our own abilities....or thankful that there are those will help us when we're not plain ourselves.

Two months, come and gone

So Reese is almost 3 months old, and I'm just now posting about her being 2 months old.  It happens.  I DID get the 2-month picture, just haven't blogged about anything.  And since I'm so far behind on the 2-month update, you can probably guess that I'm not organized enough to know exactly what stats I'm supposed to be listing here.  So I'll just go with some basics:

• Easing her way out of newborn clothes, but not really full-blown 3-month clothes
• Long and lean: at 10 1/2 weeks, she was 11 lb 2 oz (30-something percentile) and 23 inches long (80-something percentile)
• Still sleeping through the night (like, 10  hours), with or without a dream feed at 10ish, but we still give her the dream feed anyway...why take a chance?
• Graduated from newborn diapers to size 1's at about 9 weeks old because her hiney and waist are so narrow
• Started daycare this week and has had an excellent week!
• Is getting more into a swaddle-binky-mobile pattern to fall asleep in her crib and doesn't need us to rock her.  Bedtime gets a little easier every night!
• Gets nosier every day - wants to be walked around, facing out so she can see what we see.
• Tolerates a wet diaper for about 1 second, and she makes sure you fully understand her discomfort
• Smiles a lot more at us and, recently, her crib mobile
• Finally growing some hair on the top of her head, and she loves to have her head rubbed