Thursday, September 29, 2011

Lilah is doing great with her wheelchair and using it more everyday.  She's even using it with a more cheerful attitude, which is awesome:).  The wheelchair repairman came this week, and brought a new device along with him for L to try.  I already cannot remember it's name, but basically....it's an upright wheelchair.  It supports her core, and allows for her to bear weight, but unlike other 'walkers', does not require weight bearing for movement--because it has giant wheelchair wheels also.   So, she can do a little of both, still get around, and not get frustrated.  Here's a clip:

video

As you can tell, she's heavy on the wheels and not so much on the legs, but this was her first time and she enjoyed it.  FYI: you'll see one of her 'signs' in the video--when she points to her mouth, she's asking for her paci.  Sweet girl:).  We are so proud of her!

Now, on to the insurance game to see if we can get one of those up in here.

Wednesday, September 28, 2011

Happy Birthday Garrett

Five years ago my life changed.  Two new people were  born, Garrett and me.  These have been the best years (also, undoubtedly the hardest) of my life.  He is an incredible little boy, and we are blessed in every way by him.

 The years are wizzing past, faster each one.  And, he's not a baby anymore.  I know he hasn't been for quite some time, but 5 is different.  He's becoming his own little person.  This is the year he'll start kindergarten.

I have a 5-year-old.  And I am weepy.  Very weepy.  I cannot believe Garrett is 5 and instead of feeling the joyful nostalgia that I've experienced at his other birthdays, I am downright panicked.  Make it stop.  Put on the breaks.  Slow it down. Please.  I want to freeze time.  Hold that still teensy-bit chubby hand in mine and rock him to sleep.

Birthdays are, however,  a great reminder that you cannot stop the clock....but you can enjoy each minute.

Tuesday, September 27, 2011

I feel like I've been spending the last month getting my children's wardrobe ready for fall.  I am baffled by the time, money, and organization it takes to outfit a child for a new season.....cool weather clothes, cold weather clothes, socks, shoes, coats, etc....and it mostly needs to coordinate to maximize the outfit possibiliites.

This is daunting enough before you add in any 'special needs'.  It started with needing button-front baby outfits to accomidate Lilah's heart monitor and then feeding tube.  The needs morphed into needing easy access to her feeding tube for me, but difficult access for her.  Then Lilah's tiny body started getting not so tiny....and her belly grew at a disproportionate rate (because of her severly low tone, they say)....leaving her with the body habitus of an 8 month preggo.  Her feet are the size of a 12 month old...meaning she needs baby shoes that are baby-proof.  Lilah's scholeosis is starting to make her shirts pull tightly accross her back.  Also, she's super hot-natured.   So that goes into account.  All of these needs are not always easy to accomidate, but I have learned a lot over the process.

I consider myself a special needs stylist:).  Kind of like Rachel Zoe for the handicapped population (of my house).  I know, it's banannas.  I like for Lilah's clothes to fill her many requirements-- and be comfortable and look cute.  There are certain brands I go for that are more....shall we say, forgiving.  And, I have many things tweaked by a very talented and creative seamstress over at Cuckcoo's Nest--who has way better things to do with her talent, but loves my girl and appreciates the joy of dressing children.  I have pants shortened, buttons moved, panels added, and things created--the latest creation is a 'belly bra', which I can't explain because the patent is pending.  kidding.

Anyway, my latest undertaking was shoes, because Lilah can and will sniff out velcro like a blood hound, and remove her shoes to chew on them.  She loves velcro.  And shoes.  And both are very gross, especially to bi-standers who think I let my child eat their shoes.  Which I do.  But hers have never touched the floor.  Still, it's gross and she needs shoes that will stay on her feet.  Mostly because I don't have time to put her shoes back on 30 times a day, and apparently neither do her teachers....because I keep finding her bare-feet at pick-up.  I had, what I thought, was brilliant idea.

 I bought 3 pairs of shoes and had an industrial snap put on, over the velcro, at the cobbler.  I'm pretty sure he goes by 'shoe repairman' these days, but I think 'cobbler' is cuter. Anyway, genius, right? I considered buckles, but cobbler-man said snaps would be quicker (sold!) and she couldn't get them off anyway.  I'm sure you can see the writing-on-the-wall here.  Lilah got the first pair of shoes off in 30 seconds, the second pair in 15, and the 3rd pair....well, she just grabbed them straight out of my hands, laughed, and started eating the velcro.  Fail.

shape sorters are the hot ticket in Lilah world these days:)


In the process of cleaning out closets, I found a pair of keds that Garrett wore when he was 10 months.  And they are precious.....she'll just have to always wear red...because she has maxed out her shoe budget.  And mama wants some new boots.

Friday, September 23, 2011

Because it bears repeating:  thankyou for your faithful prayers even still,  outside moments of crisis, for our family.  Prayer is real and powerful and it changes things.  I still have no idea the way to theologically reconcile how that is true along with God's perfect plan for each moment of our lives, from the beginning time.  But, in my aged wisdom (haha), I am learning that there are things about life, and particularly God, that I cannot and will not understand.

I do know that His word is truth and that God alone is able to do more than we could ask or imagine.  It is true for Lilah, and it is true for Hutton.  She is the little angel I asked you to pray for 3 months ago.....and today she is home, with her new heart.

Read her story here.

Thursday, September 22, 2011

Financial Freedom


You might have noticed the very fancy, high profile ITT tech and Zulily and Ann Taylor Loft ads now gracing this little blog.  You all know how savvy I am...and I've managed to sell some ad space to finance some new boots I've got my eye on (in case it's not translating, note the sarcasm.  I'm pretty sure anyone can agree to put ads on their blog).  I hope boots are still 'in' in 2025---the year I will have made enough from 'selling my soul to corporate America' to buy the darn things.  Partly because who knew cowboy boots were so expensive (I'm from Indiana, where I'm pretty sure you can only get utility cowboy boots at Rural King) and also 'they' pay me 1/1000000000000000 of a cent for every time that someone clicks on those ads.
I feel compelled to tell you:  a) I have no choice over content, although b) those ads are, eerily, things I like or love, like The Loft.
So, I wonder if Big Brother watches what I post, and picks ads accordingly.  If that's the case, I am digging the new season at Anthropologie and would also love to see an ad for 30% Western Boots.  Hint.  Hint.
Which brings me to c) I am not payed to review items, although I wish I were, because I am an excellent critic.  Seriously, if I could find a job being a 'reviewer of items', I'd be all over it.

Back to our regular programing.  Up this week:  Dental Visit from Hades and Parenting is for Ogres. Should be fun.

Sunday, September 18, 2011

Ada's Baptism

We baptized our littlest gift this morning.  It was sweet and special and entirely different than the last time, with Lilah.  With her, there was a sense of urgency....a desire to baptize her quickly...a fear we might not get to at all.  But, with Ada, it was a celebration of her life, a commitment on our part to raise her in the Lord, and a seal of the covenant God made with His people....all that an infant baptism should be.

this sweet dress has been worn by 3 generations of babies

I want you to notice that we were early....no easy feat.
 I write very little about all the emotions surrounding Ada's little life...because they are intensely complicated for me.  But, I will say that her 4 months have been the happiest in memory for me--full of a richness and love that brings me to my knees.  Her life has been healing for my heart in ways that I cannot begin to describe.  While certainly not the purpose or intent of her creation, her brightness has filled so many corners of darkness.  That tiny baby's cries and coos have breathed new life into our home, and  her spirit has bolstered ours.

the star was very well behaved



 Ada is curious, loving, sweet, and completely engaged in all the wonders of this world.  Her life is such a precious gift and I am honored that the Lord chose me as her mother.  I cannot wait to see the story he has written for His child.

Thursday, September 15, 2011

Remember this? Well, as luck would have it, that little cow has become Garrett's best friend as of late..he's been changing it's clothes, giving him a bottle, and strapping him in a seatbelt when we travel.  The unlucky part is that today, due to what can only be called 'lack of parental supervision', that cow, who can be gently warmed in the microwave, was incinerated.  The small, fragrant lavender beads that it was lovingly stuffed with were heated to a temperature just slightly under nuclear reactor.

The back-story is that, like it or not, the oldest child of a handicapped sister and a newborn is forced into some independence.  While it may not be ideal that he washes his own hands (a 6/10 on the cleanliness factor) or pours his own cereal (only chunky kinds, he is not ready for rice krispies or anything like that)...it is a necessity for small tasks that he doesn't want to wait 15 minutes for momma to help with.  (and momma doesn't want to listen to the 400 times he would ask in those 15 minutes).  Anyway, warming up the 'microwave safe' cow is one of those tasks that he does...with me hollering out instructions while holding a nursing baby or a feeding tube. "Push 9.  Push 0.  Push Start".  Those are the instructions.  He knows his numbers.  We've never had a problem.

Until today.  Disasters always happen when there are a million mini-catastrophes in the works.  Little baby is hungry.  Middle baby is dirty.  Men are mowing the lawn.  The phone is ringing.  Paul is calling to see if I can get some numbers off his computer.  And then it dawns on me....at the exact same moment that Garrett whines "this cow is never going to be ready"....he has been standing in front of that microwave an awfully long time....it smells funny in here....there is smoke billowing up in my kitchen.  Ohhh  Nooooo!!!!!!

I run over, open the microwave, and it is like scene out of cartoon horror.  Cow has met his maker.  He is smoking and crispy.  And, I start laughing hysterically.  Because I'm sensitive to the needs of my children like that.  Double fail.  But, I couldn't quit laughing, which made Garrett cry even harder.  (Side note:  what is wrong with me that I thought think that is so funny?).  He was genuinely devastated.  He even asked me if cow was in heaven...which just goes to show you how fine the line is between imaginary and real when you are almost 5....or how quick on their feet kids are--because he knows all about heaven, and how you get there.  And that stuffed animals don't qualify.

Anyway, cow quickly made his way outside, away from the smoke detector, with a pair of grilling tongs.  And, because I'm a better 'one-click Amazon shopper' than I am 'explainer of life's disappointments'....a new cozy plush animal is on its way in the mail.  Oh, and for the record, cozy plush animals should, indeed, be microwaved on high for 90 seconds.....and not nearly 9 minutes.

I'm Back

I haven't blogged in awhile because I've been away....on a tropical island, with my husband and an umbrella in my drink.  Riiiiiiighhht.
In reality the days are whooshing past at warp speed, which is odd, because I find myself saying 'it was a long day' at the end of every day.  Our days seem to start earlier, though really, we are just out the door earlier, which means we I hit the ground running when my eyes open...and I'm just too darn spent at the end of the day to write down any of the funny and not so funny adventures we've had.  Here are a few I can remember from the past days:

--Garrett has declared 'Farties' as his favorite candy, and even though I know his little mouth changes 's' blend sounds to /f/...I still laughed for a solid minute.  I am not doing my part as his mother to snuff out the 5 year old potty talk---so help me, I cannot not laugh.  A boy that changes a pack of princess fruit snacks to  "Princess Poopy" and "Queen Stinky" is funny to me.

--Lilah has a best friend at school.  His name is Christian and he is black and she is using him for his hair.  She loves his hair and follows him in her wheelchair so she can love on him and touch his hair.  I haven't actually seen this in action, and am only going on teacher reports...so I've probably embellished their friendship a bit:). But, I love the thought of her having a best friend, so I'm going with it.

--Garrett has given me an incredible gift for his upcoming birthday....he has chosen to have his Daddy take him to a local indoor waterpark instead of having party.  Read:  minimal mommy involvement.  That's right....invitations, cake, bounce house, treat bags...all that crap that you have to do before you watch your child have the inevitable party meltdown is not happening for me.  I am inexplicably happy.

--Ada is by far my favorite child right now.  Happy, quiet, calm, and very appreciative of her mother.  She is a good listener and a great sleeper (although my expectations are notably low).  She eats what she is given and wears what she is told.  She is grateful for what she has and other than being a horrible car traveler and a difficult burper, I have no complaints about her.  She'll be 4 months next week.  Remind me that I said this about her, because I see a twinkle in her eye that makes me nervous.

-I have mastered (though I use this term in the loosest sense), the drop off and pick-ups.  It is not pretty, but I can get it done.  3 children, 2 backpacks, 16 loose papers (why do teachers do this??), 2 lunches,  a wheelchair, an infant carrier, keys, and a cell phone.......nothing to it.  On a related note, I'm taking applications for an intern--the pay is, well....there is no pay.  But, it'd be an experience.  There are similar positions open around here for medical expense secretary, appointment secretary, trash collector, laundry mistress, and put-stuff-back-person.  They are all similarly glamorous.

--the other day, I put Lilah down on the floor in the kitchen to clean her high chair before she went back in it, and I returned from the sink to find her--gone! She had scooted into the playroom (about 15 feet) after tickle-me-elmo.  Of course, it took me 30 minutes to quit second guessing where I had actually set her down before I could be sure she had done it.  I am both proud of her and frustrated that she acts so unmotivated to do it at other times.

 Could you all just be quiet??!!

Tuesday, September 6, 2011

This girl is begging for a pageant.  Toddlers and Tiaras, anyone?? Ada received this as a gift, and I must say....she looks pretty happy in it.  You should have seen her after I got her 'glitzed'...fake teeth, a wig, and a spray tan.  It was awesome.  Kidding:)


Friday, September 2, 2011

I think it's a bad sign that a week of getting kids to preschool has rendered me brain dead and totally exhausted.  Also, I kind of expected to have a cleaned house, organized drawers, made meals, and lost 10 pounds.  Not so much.
Maybe next week.

I love how they both look rather annoyed at me.  
It makes me laugh that the 'back story' of every first day of school picture is a crazy mother, whiny children, and a ticking clock...and then they are supposed to pose with their backpacks...the last thing they want to do at 8am.


If I could read her mind, I think the hardest thing for her about school is no pacifier and no Backyardigans.  Here she is ooching out the last few minutes of both on the way.

Lots of nice clothes...always chooses something small and stained:)


I think our first week went well...everyone seems happy.  Garrett did cry like I was sending him off to labor camp before school.  Sigh.