A picture is worth a thousand words...and exponentially so!

It's been soooo long since I've blogged and for good reason - we've moved!  Pure disaster, I tell you.  I won't go through the details (most of you know them - gas leaks, rainy moving days, broken drawer tracks, etc.), so I've decided to capture my life in pictures for this blog post...plus some explanatory captions.

But first.  Emma, the whole reason for this blog in the first place.  She has a bladder infection.  Boo.  But we saw no signs of it at all; it just happened to be caught during some routine urological tests at Shriner's.  She also is paying for her unwillingness to wear her glasses.  Her eyes are turning more, and now her brain is attempting to figure out what correct vision is.  It's basically trying to use one eye at a time more than the other, which in the end will result in a lazy eye.  Her doctor told us she HAD to wear her glasses.  She also has to wear a patch over one eye for 30 minutes a day, alternating eyes and days.  It's like she understood exactly what the doctor was saying...Emma has miraculously been 110% better about wearing her glasses.

Oh, also, let me catch up on last year's blog posts:

September 8, 2010

September 13, 2010

September 16, 2010

September 20, 2010

Now let the fun begin!


Old house being packed up:

 

New house, two days after we moved in.  Yikes.

New house, 8 days after we moved in.  Can't tell much of a difference, can you?  We somehow continue to unpack and get settled, yet the to-do list grows...

How on earth will we ever get settled?  I don't see a light at the end of the tunnel.  But I DO see a happy little girl who is free to crawl wherever she wants in our single story house.  And she's the reason we do it all.

My blessed life

Life is chaotic right now.  I feel like I say that a lot, but I don't want you to think it's a complaint.  More of a statement of fact.  Fact: Emma, Lola, and I were all sick today.  Fact: I packed 6 boxes today.  Fact: I worked from home today.  Fact: I emailed, scanned, signed, received, dropped off, initialed, etc., etc. lease documents, insurance documents, and purchase documents.  Fact: life is chaotic.  And to that point, I just panicked a little because I couldn't find any of my pictures to upload to the blog on this computer.  That's because I'm on my work computer...I can't even remember what computer I'm using.

Here's the proof:  a naked baby talking on the phone, dialing who knows what number...just as long as it's not 911.  I swore I would never be that mom who leaves her child on the floor wearing nothing but a diaper, ESPECIALLY when her fat rolls cover the sides and end up making her look like a little boy with a white wee-wee....she's going to kill me one day for publishing this picture.  But in my defense, I had to derobe her while I vacuumed up the rice cereal that she sprinkled across herself and the carpet...imagine Tinkerbell's fairy dust...well that's what Emma did with 6 tablespoons of rice cereal.  Oh, wait, how could I forget to tell you that Lola thoroughly enjoyed licking up the cereal, which turned into a thick paste in her newly washed and cut (as of yesterday) beard.  Agh, a couple more things: Emma's left eye is turned in because she's not wearing her glasses and absolutely refuses to do so...and the wisk and pot are on the floor because they entertained her while I cleaned up the aforementioned dog and carpet messes.

More proof: this living room is a visual representation of our lives at the moment.  Notice the guilty party on the right trying to escape the scene of the crime.

(PS - Russell, if you read my blog like you say you do, this is what I want for Christmas: a camera strap like Allison has that has a little pocket in which to put the lens cap because I've lost it approximately 37 times today.  I have found it each time, but not easily.  Allison got hers on Etsy.  Get in touch with her or Holly or Magee or someone like that to find a cute pattern.  Thus endeth the does-Russell-read-the-blog test.)

And I love every minute of this chaos.  Ok, well, I could do without cleaning up after a sick dog and child and not feeling 100% myself.  But besides the gory aspects of cleaning up after a sick dog and child, I am so blessed.  You can tell by looking at the enormous number of doctors' appointments for Emma next week that our daughter is not well.  You can tell just by looking at my +20 lbs post-baby weight that things are not perfect...and you can CERTAINLY tell by looking at the pictures above that our house is not perfect.  You can tell by looking at the giant stack of Emma's medical files that these past 2 years have been anything but easy.  But today we are happy.  God loves us, and we love Him.  Our friends and family love us, and we love them.

Ok, I will leave you with a video of Emma doing some of her favorite things: playing with a wipe, pulling the wipe apart, putting things into a pile, dismantling said pile, and answering Mommy's questions in her own language.  This video is also the perfect example of the strange little wave Emma has developed in an effort to unstick things from her hands.  WARNING: this video is 5 minutes long and could be conceived as boring...but not to me (or grandparents, either, probably), as I rejoice in the blessing of every moment of Emma showing us her personality.

Pictures (finally, right?)

Go tigers!

Please, just a taste?  If I smile very sweetly and cut my eyes at you, pretty please?

When it's too hot to play outside, just use the indoor playground: stools and a high chair.

Check out Emma's first tailgate last year!  September 4, 2010

Do you know what I'm talking about?

I cannot cool down.  Ever.  Awake.  A.M.  P.M.  Air conditioning.  Sleeping.  I cannot cool down.  Do you know what I'm talking about?

This is sooooo not a big deal in the grand scheme of Emma's life, but I gotta be honest with you - having a child that must be held (as opposed to her walking on her own volition) makes a sweltering summer downright fiery hot.  Bless her heart, she's hot-natured, too.  She gets out of her carseat and wakes up from naps with damp hair and a sweaty neck.  But it's so darn cute because then her ringlets REALLY curl up.  It's amazing to see how long her hair is when we wash it, but when it dries, it doesn't look any longer than it was 4 months ago because those blonde curls just get tighter and tighter!

Tomorrow we're taking Emma to the Clemson game with us.  She's my excuse to not go into the game.  That's right.  I'm not going into the game.  It's too hot.  I'll be feeling those occasional, itchy sensations of the sweat running down my back enough as it is.  Gross, I know, but you know what I'm talking about.

The rule tomorrow is that whoever is holding Emma sits in front of the fan.  (My father-in-law has a generator that we use to run a fan and the tv/satellite dish; otherwise, I wouldn't subject Emma to this awful heat.)  As a result, I anticipate a more-intense-than-usual battle to hold the Doodlebug.  So if you're going to the Clemson/Troy game tomorrow and want to sit in front of a fan, watch the game on tv, and sit in the shade of a tent AND a shade tree, come visit us at Lot 10 and hold Emma!  We will have plenty of food and drinks, and of course we share.  We're from the South!  You know what I'm talking about.

I hope I get the chance to get some good pictures tomorrow.  Pause, let me go pack the camera...check.  We're bringing Nan and Granddad's Radio Flyer wagon for Emma, which she LOVES.  Some of you may remember that she thoroughly enjoyed her stroller while we were at the beach.  Well, the wagon is even better because she can hold on to the sides and twist her little head all around to take in all the sights, not just what's in front of her.

Ok, enough about the game.  Emma has had a great and mischevious week.  She is branching out in terms of what she's eating and how much adult food she's eating.  My mom had the revelation this week that we might have to start........




ORDERING EMMA HER OWN PLATE!!!!!




How exciting!  Depending on what it is she's eating, Emma (on a good day) is capable of eating a kid's plate. 

We are also getting closer and closer to moving.  The funny thing I just realized is that if you walk into the 2nd floor of our townhome, it looks like we're moving tomorrow.  The first and third floors look exactly the same as a year ago.  That's a product of us spending more time in the den and kitchen; therefore, we pack up what's around us.  I guess we'll have to start hanging out on the other two floors more in order to get packed.  Oh!  Maybe I'll cool down by hanging out on the bottom floor...it's always very cool (sometimes even chilly) down there.  I can't remember what it's like to not be hot.  I have always said that fall and winter are my favorite times of year...it's when you can snuggle up and pack on the clothes and blankets and get cozy.  Summer is the WORST - you constantly sweat.  And you can only take off so much.  I'm so hot that I swear, if anyone lays a hand on me, they will pull back a sweaty nub.  Except Russell of course.  Russell, I love you.  Please continue to love me at my sweatiest. 

Ok, time to catch up on last year's blog posts....here's what was going on with Emma this time last year.  Wow, how things have changed!

September 1, 2010

Feed me

To continue with where I left off on my last post, Emma is eating better and better each day.  So far today, she has eaten a whole scrambled egg.  Two nights ago, she demolished a biscuit just like a normal kid, which is significant not just for her eating and feeding herself, but also because she didn't mind getting her hands dirty.  Here's the evidence:

See those shiny things on top of her eyes that make her look kinda nerdy?  Those are GLASSES.  Yes, her glasses.  She wore them for a pretty decent amount of time that night.

And here's a shot of Lola just waiting for some bites of deliciousness to hit the floor (some of you may have seen this on Facebook):

Emma is sleeping better and better with her mask on in her crib at night.  As for the naps, we're still taking baby steps, but they are definitely steps forward.  God has answered so many people's prayers regarding the naps at Nan's house.  Emma isn't sleeping in the crib at Nan's house, but she IS sleeping on the bed with Nan and with the mask on, and this is definitely a step in the right direction.  The last few days have been wonderful with these naps, and my mom is feeling much more comfortable and at peace with putting the mask on her baby girl.  (By the way, my mom's nickname for me my whole life has been Baby Girl, but I think I've been dethroned.)  Russell and I have tougher skin than our mothers, so on the weekends, we have been putting Emma in the crib for her naps.  Those haven't been pretty - prolonged periods of crying before she finally gives in, and the naps aren't as long...but I'm not discouraged at all.  Some families deal with worse sleeping habits than this with kids who have no medical issues, so I know that the Lord is watching over us. 

My dad managed to condense the Flip camera video that my mom took the other day of Emma eating her roll.  I don't have the time right at the moment to figure out how to save the Flip video to my computer, so hopefully this link will work:

http://sharing.theflip.com/session/7f3da2b754b13f567d268b0d397551a9/video/108324391

The Bee in My Bonnet

You probably remember that last spring I got a real bee in my bonnet about children not being able to receive VitalStim therapy at the hospital due to some stupid financial bureaucracy.  I was on a mission to get the funding or simply an administrative kick in the hiney wherever it was needed in order to provide this therapy to all kids who needed it.  Well, God decided to do it Himself :)  I didn't have to do anything, really, and the hospital now has the electrode expenses in its permanent supply budget, and there is no financial obstacle to getting that therapy to all kids.  However, there IS a personnel availability obstacle.  Emma's speech therapist is the ONLY person certified to perform this therapy, and she has a pretty intense waiting list of kids who need it.  So the next step is to pray for the hospital to shell out the bucks to certify another speech therapist and probably buy another conducting machine (I have no idea what it's actually called, but it seems to be a machine that conducts electricity.). 

During Emma's last therapy, Dru, her therapist, commented that Emma will probably be more of a long-term patient with the VitalStim therapy.  We were kind of expecting that the VitalStim wouldn't correct her swallowing quickly.  Luckily, the hospital's blockades to the treatment have come down, so there's not an issue with continuing the therapy.  Three interesting things have happened with Emma's eating habits.  Actually, let me back up and explain her eating habits first.  Emma's food needs to be relatively smooth, non-grainy, skinless, and dissolve quickly if possible.  She can't drink anything because she chokes on it, and she has ZERO interest in a sippy cup or straw because she has such awful texture issues.  The texture thing is common to all kids with spina bifida, even those whose symptoms are not as severe as Emma's.  Emma doesn't put anything at all in her mouth because of those texture issues, which is great when she's crawling around on the floor....not so great when we're trying to teach her to pick up small pieces of food and feed herself.  That brings me to the 3 "events": (1) At my parents' pool on Saturday morning, Emma suddenly leaned down and started trying to drink the water.  No idea what that was about, but we're going to be talking to her speech therapist about giving her liquids.  (2) Emma was sitting on Mama Jane's lap and out of the blue, reached down, grabbed a piece of artichoke and put it in her mouth.  We grabbed it out of her mouth, mainly out of shock, but also out of concern that she would choke on it.  She has learned what it looks like when we all sit down to eat and that something on a plate is meant to go into her mouth.  (3) This morning my mom set down a fresh roll on her high chair tray, along with small pieces she had torn off for Emma to eat.  Emma picked up the whole roll and starting biting small pieces off of it and chewing them like a big girl.

It's pretty obvious that these milestones are significant for Baby Emma.  But let me tell you why they're so significant to me.  Other moms get to watch their children discover and do things on their own, with no therapy, no training, no encouraging, no prayers for their children to accomplish simple tasks.  Nature just runs its course with other kids.  I have finally been able to watch my daughter take major developmental steps with no prior practice, no therapy...she did these things by herself, out of the blue.  What a blessing to be a mother.

PS - My mom sneakily got her Flip camera out and videoed Emma eating the roll.  If Emma had known she was being filmed, she definitely would have dropped the roll and started waving and making googly eyes at the camera.  I'll try to get a copy of it to post on the blog.

Moving on

It's been 16 days since I last blogged, and quite a lot has happened...and not happened...and is yet to happen.

Here's a change: the "not happened" actually has to do with Emma.  She is still cruising, literally and figuratively.  She has been great sleeping with her mask in her crib at night, mainly because she's too tired to care.  She usually sleeps through the night with it.  Naps are a different story.  With her busy schedule, it's hard to have Emma at home when it's time for a nap, which is never the exact same time every day.  When she IS at home and sleepy enough for a nap, fighting the mask and crying isn't pretty.  But we'll get there.

The "has happened" is about our house.  We have a signed offer on a new house, and it will be inspected next week.  I don't want to spill the beans about where it is or anything yet because we still have to have inspections, a survey, and an appraisal.  But we hope to close sometime during the last half of September.  It's one story for Emma, and there's a good-sized fenced-in back yard for Lola.  The last time we looked at the house, there was a renegade (and rather large) cat sitting in the back yard watching the wildlife.  I'll be having a word with the neighbors about that cat.  I don't have a problem with other people's cats, but I personally don't want a cat.  Neither does Lola.

When we feel comfortable with the inspection and appraisal, we'll take the next step with our townhome.  Here's the "yet to happen:" we're going to lease our home to a wonderful couple who we feel certain will take great care of our house. 

Emma is still a sweet little girl with a lot of love to share, as you can see in this video with our friend, Rob.

I have a lot of catching up to do on last year's posts:

August 5, 2010

August 12, 2010

August 18, 2010

Medical updates

I feel like bullet points tonight.

• Today Emma's VitalStim therapy was cranked up to level 10 (this is significantly higher than it had been, but I don't know at what level it maxes out), and she DIDN'T CRY about it.
• Emma's sleep specialist informed us on Monday that we have to start Emma on strict behavioral sleep training.  This involves Emma being awake, laying her in her crib at 9pm, putting the BiPAP mask on, and leaving her.  Yeah.  Right.
• We have a strict schedule to follow with Emma's sleep training, with varying minutes of leaving her and coming in to comfort her.
• So far, we have not followed the schedule.  Because she hasn't needed it :)  Girlfriend is sleeping like a champ.  We've only done it for one whole night now; night #2 is successful thus far.
• Tomorrow the sleep training applies to naps.  Yikes.
• Emma's choking has gotten better (well, less frequent...severity is the same), but it hasn't gone away.  We are hoping the VitalStim is slowly but surely taking care of this.
• She still refuses to wear her glasses.  With gusto.  And her eyes look terrible at times.
• Emma's knee immobilizers came in, so tomorrow at therapy, we'll see how she does with these little contraptions that force her knees to straighten so that we can start to teach her how to stand.

Ok, enough with the bullets.  Emma is happy, happy, happy.  Russell and I have a new reason to be happy, happy, happy.  We think we may have found a house we like.  We haven't even seen the inside of it yet, only pictures, so I could be completely wrong here.  But the wheels have started turning.  It's a little rough around the edges, but nothing that some one- or two-week projects can't fix.  And since our house is STILL on the market, we are considering leasing our house.  I cannot even tell you how much I DON'T want to lease.  Ever since our house has been on the market since last October, I haven't felt any sense of urgency because I knew that God was taking care of us.  But something feels different now.  My personal plan/what I thought God was going to do was for us to sell our house and then move into another one.  Of course, we all THINK we know what path God will lead us down.  Now...I'm not so sure.  I'm still pretty nervous about possibly renting our house, but judging from the astronomical number of phone calls I've had about renting, maybe this is God's direction for our lives at this point.  What matters in the end is that we trust that He will protect us financially and provide us with a home that is safe for our baby girl.

Save it for Halloween

Several things over Emma's life could be classified as scary - her open incision, all those weeks in the hospital, the constant choking and throwing up...all very scary.  Now it's taken on a new meaning.  One of her favorite things to do now is to scare us.  She yells at us like a monster and we fake being scared.  She gives us varying degrees of laughter in response to our "fear," depending on her mood and energy level.  Tonight was a pretty standard giggle.  I wish I could get a video of her good gut chuckles again.  Here's what I'm talking about - tonight I pretended to read the paper and hide behind it while she yelled at me to scare me.

As I edited this video, Emma heard it and came crawling over.  She laughed at the computer and then started making the scary noises again.  Hilarious.

I also realized that I haven't posted links to last year's posts.  I'll catch up!

July 11, 2010

July 12, 2010

July 17, 2010

July 27, 2010

July 31, 2010

My heart is just exploding with joy right now.  I don't know if I can express it in words.  The joy and love I have for this little girl is so immense, and coupled with an equal amount of praise and gratitude to God for blessing my life with her....well, my heart just feels like it can't hold all that emotion!  My happy, joyful, grateful heart is completely full, crowding my body, crowding my lungs.  I feel like I need to laugh, cry, hug, and snuggle for hours, just to get some emotion out of my body so I can breathe again.  I'm swimming in love for my little girl, love that's all the way over my head....and then I have to go back to work tomorrow morning after a 3-day weekend with my precious one.  But I know that there will be a huge smile and outstretched arms awaiting me when I get home.

Trying to survive

I feel as though my life is in danger.  At the beach last week, Emma was held, not made to wear her glasses, skipped therapy, and wore herself out with all the busy beach and pool activity every day.  My mother is now paying the price.

Emma spent the beginning of the week being whiny about being on the floor at my parents' house, as opposed to being held, as she so often was at the beach.  Two short weeks ago, she reached for the floor at every opportunity because she wanted to crawl and explore.

Emma REFUSES to wear her glasses.  I don't mean waiting 10 seconds before she takes them off...I mean pushing them away as you're bringing them to her face and if you DO manage to make contact with her face, she rips them off on one side while you're still trying to get the other side hooked behind her ear.  It's awful.  And her eyes are starting to turn in more as a result.

Emma skipped 6 therapy sessions last week.  She was miserable at OT and PT on Monday.  She didn't want to do anything, and she wanted to be in my lap or on my shoulder the whole time.

Emma absolutely exhausted my mom and Aunt Eva on Wednesday.  Actually, Tuesday and Wednesday, Emma talked non-stop.  Non.  Stop.  She has had so much to say this week.  And after she got over her desire to be held at the beginning of the week, she's been getting into things even more than she used to while crawling around.

I haven't gotten off scot-free, though.  Emma had terrible nights with her sleep masks (both of them) Saturday through Monday nights.  Finally, we've had a couple of better nights.  Today I spent a moment reminiscing, remembering what it was like to not have to deal with glasses OR a sleep mask.  And having the whole bed to ourselves.  Rewind to November.  Ahhh, now that was nice.  So that reminscing caused me to fast-forward...to what would it be like to have a child WITHOUT special needs.  Now I know that all children are difficult in their own ways, but to simply lay a child down in a crib at night and not see them again until in the morning...wow.  And to not have to worry about how long a child has worn his or her AFO's...has she been in the stander today...how long has she been in the stander...having a week with less than 5 appointments.  One day.  One day I'll have one of those kids.  I do not regret having Emma in any way, nor do I hold any of this against her.  But you have to understand my perspective.  When your first child starts creeping towards 2 years old, you start to think about that second kid.  My experience with just one child makes me think I can't do it.  But I have to remind myself sometimes of how difficult Emma can be, just as reassurance in my capability to have another child one day.

My cousin, Lindsey, forwarded me the daily email devotional that she gets every day, and I want to share some of it with you, in light of what I just wrote about Emma.  The devotional begins talking about a lady who has 4 kids, 2 of whom are twins with cerebral palsy.  Here's what that lady has to say: "although God can heal them, I’ve had to learn to spend my whole life praising Him simply because He is God – whether He heals the girls or not. I decided very early on that God is still God no matter what He allows in my life. I can trust Him even when I can't understand Him."  The devotional also says this: "In every situation, I come to a crossroad and have a choice: I can pout or I can praise. I can turn away from God because I don’t understand or I can turn toward God in full assurance that His understanding is enough for the both of us – even if it hurts – even if anger lingers – even if doubt looms...We can and should choose to bless His name through the pain, which astonishingly can bring His joy into our hearts."

Some days are easier to praise God than others.  I like to think that having God in my heart is what keeps me looking forward to having a less needy child, yet not resenting Emma at all.  I think there are a lot of special needs moms out there who resent their children.  I believe that trusting God and praising Him is what is necessary to value simplicity in other areas of life yet still love your special needs child for everything that she has been, is, and will become.

Back in the saddle

I feel like I've been run over by a Mack truck.  Mack?  Mac?  I don't know.  Whatever.

I don't remember the last time I went on vacation and didn't feel like I needed a vacation after my vacation.  Taking Emma to the beach was so incredibly fun...and so incredibly exhausting.

It turns out that Emma enjoys the ocean, but doesn't enjoy the sand.  Or being on the ground, even on a towel.  Or sitting under a tent on the ground.  Or sitting in her Bumbo.  Or sitting in her own little camping chair.  No, the only thing that will do at the beach is either being in someone's lap or in her stroller.  Even better, having the closest standing person hold all 25 pounds of her.  Maybe next year she'll feel more adventurous.  Walking her in her stroller or holding her in your lap or sitting in the water with her is not all that bad until the heat index gets up to around 105.  But seeing that beautiful blonde-haired, blue-eyed girl basking in the sun, getting a tan on her chubby olive-colored legs, loving on our family, and enjoying her naps on the beach was worth every trip dragging her stroller through that torturous hot sand.  Our nephew Mason could not have been any sweeter to her.  What a little angel he was.  All week long I tried to get him to change Emma's diaper, but he just kept telling me that pirates don't change diapers.  (Apparently, that's a children's book.)  I pray that he will be that sweet to the little sister he'll be getting in December, but his mama isn't so sure.  Ok, enough with the chitter chatter - here are photos of our delightfully fabulous week.

The set-up

Sweet Mason

Loving on Mama Jane

Ahhhh, beach naps

Beach tigers

Mason and Uncle Russ, neither of whom owns a John Deere.  Actually, I think Mason owns an assortment of John Deere paraphernalia

Another delightful nap

Oh, how she loves Daddy...and the pool

Hmmm...wonder how I could get up there...

Mason and Emma were in charge of breakfast

Oh, hi!

Mason the Pirate and Lindsey the Piratess

Russell cackling at the train car that has derailed under him and Emma.  Don't worry, no one was injured.

Where I've been

The beach!

I will post more details and pictures about the beach later, but right now I have something I need to get off my chest.

I subscribe to a great message board for moms of kids with spina bifida.  And the last few days' posts have been filled with pregnant mamas who have just found out that their kids will be born with this awful birth defect.  Confession time: these mamas irritate the fool outta me.  How dare you get so upset...no, not upset, MAD...that your child may have to stay in the hospital for two weeks.  Try three months.  And don't even get me started that you're upset that your little boy might not be capable of having sex.  ARE. YOU. KIDDING. ME.  I just get so frustrated with people who right off the bat don't do any research or attempt to learn anything about the birth defect at all and get so upset about things that are so trivial in the end.  These same people posting these asinine questions are on the SAME MESSAGE BOARD as moms who have questions about catheters, cone enemas (NOT pleasant), surgery after surgery after surgery, permanent breathing tubes, and permanent feeding tubes.

I know that I was somewhat in their shoes at one point, but I guess I'm bitter.  Not because Emma's so bad off, but it's just frustrating to watch my child turn blue every day, choking and fighting for her breath, while simultaneously throwing up.  And there's a mom worried about her child staying in the NICU for 2 weeks.  PLEASE.  Call me insensitive, jaded, rude, whatever.  But there are far worse things.  I just want to say to these women, "Your child does not have Downs!  Your child is not mentally disabled!  Your child can live independently!  Your child will even be able to swim!  Do you not understand how much worse it could be?!"

Sorry for the rant...some days I just can't take it when people aren't grateful for what they have.

OH WAIT.  Speaking of being grateful for what we have.....I think....just maybe....there's a possibility....that the VitalStim Therapy might be working.  Emma has had 5 sessions I think (I've completely lost all sense of time since I've been at the beach), and she has choked a significantly fewer number of times since we've been at the beach.  Maybe it's coincidence, maybe it's the salt air (it would be awful if we had to move the whole family down to the beach, don't you think?), but I'm hoping and praying it's the VitalStim.

One of the Mary's

Back at the very beginning of writing this blog, even before Emma was born, I posted about how we came up with Emma's given name, Emary.  She comes from a long line of Mary's, one of whom is her great-great Aunt Mary on Russell's side.  Aunt Mary passed away on Monday, July 11, and we had all her services today.  Aunt Mary was 87 years old, had been a widow since 1977, and had no children.  Mary Jane and Uncle Robert WERE her children, essentially.  She took good care of her great-niece and great-nephews, and she was a part of Russell's family just like a grandmother would be.  Aunt Mary's health had deteriorated in the last few years and had pretty much gotten to where she couldn't walk or move very much.  Now she is walking in Heaven with her beloved sister, Dot, and her husband.  In fact, Russell's Aunt Kathey said today that she thinks that Granddaddy (Aunt Mary's brother-in-law and Dot's husband) is driving Mama Dot and Aunt Mary around in Heaven, just like he always did here on earth.

Since Aunt Mary is now feeling no pain or sorrow and is walking with Jesus, I think it's only appropriate to post our first video of Emma's first version of walking.  I certainly hope that she will one day walk on this earth...but if she doesn't, she, too, will walk with Aunt Mary in Heaven.

During all our family time today, I got some great shots of Emma with Aunt Kathey and our cousin Chesley.  I especially love that Chesley and Emma are sticking their tongues out at each other.



Welcome to Holland

Some of you may have heard this story before, but I just thought I would share with so many of you who haven't heard it.  I have read this story on many occasions in the last year or so, but I was reminded of it again today.

“Welcome to Holland" By Emily Perl Kingsley, 1987

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

And here's what my little blonde-haired, blue-eyed Dutch girl has been up to:

"Helping" me blog (by pulling out the contents of my wallet while I type)

Learning to play with Lola.  No one is happier about this than Lola.  Finally, a playmate.

You see me rollin'

Emma got her new stander on Friday!  The one she's had was a loaner, so now she has her permanent stander.  Luckily, I have great insurance, so they covered the cost of the "optional" wheels to make it a mobile stander.  The big wheels on the sides pop off, and they're not necessary for the stander to work.  However, they make it really easy for her to move around once she figures out how to use the wheels.  She was only in it for about 30 minutes Friday morning at therapy before she realized that moving the wheel a little makes HER move.  I believe she will be VERY mobile VERY soon.  Oh, and it's pink :)  At least, as much of it is pink as possible.  It looks kinda red in the pictures, but it's a sassy raspberry pink.

And here's a shot of Emma with her beloved Magee.  Let me tell you something about Magee: she has some sort of quality that I don't think can be named.  Before I had a baby, I just knew that dogs loved her, even my parents' little Maltese who was possessed by some sort of evil doggie spirit.  She somehow knew that Magee was safe and kind.  Then we had Emma.  Because of all of Emma's health issues, she's not familiar with many people outside our immediate family.  Except for Magee.  It's not like Magee and Emma hang out one-on-one all the time, but Emma can just sense that Magee is the best friend, caregiver, and Momma (one day!) that anyone could ask for.  To be perfectly honest, Magee is one of the few non-family members I'm comfortable leaving Emma with - not because I don't trust my friends, but Emma can be a scary kid to care for.  But Magee....you've just got that certain something.

Please keep the family of Jamie Garrett in your prayers.  We are friends with his brother, Scott, and his wife Laura.  Jamie was reported missing in Vail, CO since last Tuesday, and, sadly, rescuers found his body yesterday.  Jamie loved his family and had a great vacation just a few weeks ago with all the Garretts.  He was a wonderful uncle to Scott and Laura's daughters, as evidenced by the pictures on Laura's blog with his nieces.  God, grant his family peace and comfort.

Last thing - a look at last year: July 8, 2010

You've been outsmarted

Our church had our annual 4th of July celebration; here are a couple pictures of our little patriot enjoying herself:

Now, about the title of this blog: I blogged a few weeks ago that my college roommate, Abbey, came to visit for the weekend.  Abbey witnessed firsthand what many of you have only seen on the blog: Emma tossing toy after toy after toy off the tray on her stander.  Emma doesn't get too upset that her toys are all on the ground, but you can only leave a 1-year-old immobilized for so long without providing her with toys...that she will promptly throw on the floor....and she doesn't get upset that her toys are all on the ground, but you can only leave a 1-year-old immobilized for so long without providing her with toys........you see where this is going.

The other day I came home to a package on the front steps from Amazon.  I thought to myself, oh, that must be something I just ordered.  (I have an addiction to Amazon.  Best prices, free shipping on most baby- and non-baby items with Amazon Mom.  I didn't even realize that I HADN'T ordered something.)  When I opened it, I found a new toy with a note from Aunt Abbey that challenged Emma to throw THIS toy off the stander.  God love her, Aunt Abbey bought Emma a Melissa and Doug toy with (drumroll, please) SUCTION CUPS.  Emma doesn't even attempt to pitch it overboard.

I love Abbey Elaine Diehm Zachar!

Happy New Year!

July 1 is quite possibly one of the most significant days of the year for some people.  First of all, it's my mother-in-law's birthday (Happy birthday again, MJ!).  Second, it was the first birthday that my grandmother spent in heaven - she would have been 101 here on earth.  And finally, it's the first day of a new fiscal year for almost all government entities.  I know this sounds horrendously boring, but both my personal and professional life have been revolving around July 1, 2011.  Work actually gets....not easier.....let's just say less complicated for me after July 1.  I won't bore you with the details.  From a personal standpoint, Emma's allowable therapy hours under Medicaid start over, which means.....VITALSTIM THERAPY IS BACK!

Beginning tomorrow, Thursday, at 3:00, Emma will start her VitalStim speech therapy to try to retrain her throat muscles to swallow correctly.  7 weeks (one week break for the beach) from now, she'll have another swallow study to see if it helped.  In addition to the speech therapy, we're going to try doubling the amount of OT and PT that Emma gets during the week.  She currently receives 45 minutes of simultaneous OT and PT, but now we're going to do 45 minutes each of back-to-back independent OT and PT twice a week.  She will get to have therapy with her new boyfriend, Chris, her all-time favorite therapist, once a week.  Last Friday, Chris stopped by briefly to say hi to Emma at therapy.  She pushed away from the therapist who was holding her and made an army-crawl bee line to Chris.  Let's just hope he can get some good work out of her!

Emma held out until 10:00 Monday night at our church's Fourth of July celebration because there was no way she was going to sleep with all those people everywhere.  Of course, the moment her head hit the car seat, she was out.  Literally, out like a light in the parking lot.  The last couple of days she has been a little booger for my mom, fighting sleep and just being nosy.  Oh, and she wore herself out swimming in Mama Jane and Granddaddy's pool on Sunday.  I anticipate that either tomorrow or Friday she will collapse and pull a Rip Van Winkle on us.

An entry from last year:

July 5, 2010