Tuesday, May 29, 2012

Pigtails!

I've been kind of vague about it up until this point, but remember last fall when Emma was in pain? 

She started pulling her hair out.

I'd find clumps of hair in her little fist when I would get her up in the morning.  She had bald patches all over her head.

And I'm sure you hadn't noticed, but we stopped being able to put Emma's hair in two cute pigtails.  Her signature "Cindy Lou Who" look didn't work anymore because she had pulled out so much hair on one side.

Obviously, she's feeling better now.  And if there's one thing on CdLS kids that grows, it's their hair :)

So, for the first time since our awful awful fall and winter, here they are!  Her pigtails are back! :)



I know it seems odd, silly ... vain, even ... to be worried about her hair style and to blog about whether I can pull her hair into one rubber band or two.

But sometimes joyful moments come wrapped in oddly-shaped packages :)

Monday, May 28, 2012

SNPs and SNGs

This post is about Grandparents.

Josh and I are Special Needs Parents (SNPs).  We had our world rocked at the birth of our daughter.  Life today looks incredibly different than we ever thought it would.  But we have adjusted, fought, cried, and eventually stretched our definition of Normal to the point where we feel like we are thriving.

People say they are amazed by what we do.  I don't know about that. I'm amazed by people who run marathons.

Can we take a minute, though, to appreciate another group of people whose worlds get rocked?  SNGs - Special Needs Grandparents.

 Because, see, one of the things about Life as We Know It is that we HATE the term "supposed to."  From my perspective, what was "supposed to" happen was I was "supposed to" give birth to a healthy 8 pound baby girl and 3 days later she was "supposed to" leave the hospital WITH me and my husband, and then a year or so later, she was "supposed to" start walking and by now she's "supposed to" be able to verbally say "I love you, Mommy."  None of that happened.  And that's okay.  Really.  This is my life and I am not unhappy.

But how about from the perspective of the Grandparents?

They are "supposed to" be better at this than me.

They (Grandmothers, particularly) are "supposed to" suddenly get much smarter in my eyes, sharing generational wisdom, and instead, they have to learn from me how to do something as basic as feed their granddaughter.

They are "supposed to" be able to take their grandchildren for a weekend trip without worrying where the nearest Children's Hospital is.

They are "supposed to" have tons of advice for me based on the hard-earned experience they've won as warriors who have BEEN THERE.  Instead, they have to ask me if I know why Emma is crying right now.  And sometimes, they have to deal with the fact that I don't know, either.

They are "supposed to" have wonderful pictures from a delivery room as their children become parents.  Instead they have memories of sitting next to a hospital bed watching their children weep as their new baby is rushed away.

They are "supposed to" have lived the hard work once already, and now they are "supposed to" just be able to sit back and enjoy their grandchildren without a medical instruction manual.

But the good ones ... they enter in anyway.  They stretch at a time in life when (I imagine) it's harder and harder to stretch. They support even when they have to face the incredible injustice in the fact that they don't know what they are doing.  They learn.  They learn so much.  They comfort their adult children even when their hearts are breaking as well.  They understand what it means when the parents of their grandchildren say "I need help."  They learn and they grow and they brag and they love.  They surrender their hard-won "expert" status and lean into a life they never could have imagined.




 And they are rewarded


(Side note: my kids have more than two WONDERFUL grandparents.  Please don't read into the fact that these are the pictures I chose to share.  Sometimes you don't have a picture of the things that make people wonderful.  I appreciate ALL of my childrens' grandparents)

Thursday, May 24, 2012

She's lucky she's cute

For those not on Facebook, I'll tell you that Emma was bitten by a tick this week.  I found the tick.  It had eaten it's fill.  I didn't realize what it was at first ... picture when Violet turns into a blueberry in Willy Wonka ... except, you know ... much more gross ... like a big, dark-red pistachio

Anyway, I think she's going to be fine.  She's got some bumps under her arm, but the doc isn't concerned.  At this point, if she's going to get sick, she's going to get VERY sick, which would be a rare thing from a tick bite. 

But then again, my daughter is the EXPERT in very rare, so if you feel like saying a little prayer for the Bear, I'd appreciate it :)

The reason I share that story is to say that I'm a little  on edge today.  And we had an extra appointment today to check the bumps.  And I've been stress-cleaning like a mad woman because there's nothing like finding a TICK in your medically-complicated daughter's crib to motivate some deep house cleaning.

So this is my daughter's latest game:




Stop laughing, it's not funny.

She thinks her tube is hilarious, particularly in the car.

And today, for her next trick ... she was able to detach the tube from the extension while it was feeding her.  Which means she had an entire car ride to play with a super-fun tube that was supposed to be feeding her vanilla-flavored formula. 

(raise your hand if you hate the smell of vanilla)

I looked back and saw her DELIBERATELY putting her formula-spraying tube down into the padding on her carseat.  She then dragged the tube across her pants to see it make a pretty design.  When I said, "Emma!" she looked up at me innocently as if to say, "Yes, Mom?  What's the problem?"

My apologies to the other drivers on I-35 today who may or may not have had to avoid a crazy mom in a mini-van who was trying to turn off her daughter's feeding pump to keep her from feeding the entire inside of the van while we drove.

I changed her clothing, but she was still pretty sticky and vanilla-scented when I dropped her off at school. 

Oh, well. Mom of the Year next year. :)

Wednesday, May 23, 2012

Perfect

I just read a great post I wanted to share with you about Competitive Mothering.  Click here if you're interested

Yeah, it's a thing

See, because the thing is, we are ALL comparing our real selves (including all the ugliness inside me that only I can see) with everyone else's virtual selves.

I find several Mommy blogs to be very encouraging, and I play along in Blogland with the hope of encouraging others.  But I'm just as guilty of feeding into this competition as the rest of us are.

I post adorable pictures of Charlie planting flowers with Daddy, but forget to mention that the dishes didn't get done that night.

Or I post about teaching Charlie some Bible verses, but forget to mention that my inner monologue briefly considered making Charlie WALK home from preschool today because he had one too many follow-up questions regarding the Keep Your Hands to Yourself Rule... 

Can we all agree that none of us is perfect? 

And can we all agree that none of our KIDS is perfect?

So, therefore, can we maybe be grace-filled enough to all let each other off the hook in this competition for just a bit

maybe for just long enough to see what would happen if we let Christ shine through our imperfections? 

He's way cooler than I am, anyway :)

Monday, May 21, 2012

If I were a better mom

Charlie had his preschool graduation today.

For the vast majority of the program, I was so proud of him.

He recited his Bible verses wonderfully, did all the motions along with his teachers for all the silly songs, and played his bells right when he was supposed to.

But

He's learned to whistle.

He thinks it's the best thing ever and he's proud of himself.

So, about three-quarters of the way into the program, he started to whistle in between songs.  Not like, "Hey look at me I'm whistling!" but just quietly sitting in his chair waiting for the kids who would play flowers in the next song to get their props ... and then he absent-mindedly started to whistle. 

His teacher caught his eye and told him to stop.  He did.  Until the next song ended.  Then he did it again.

My world is ending

My parenting skills are garbage.

All I've tried to teach him is gone

The entire program is RUINED

My child WHISTLED!

TWICE!

It is all I can think about

I am a terrible mom

My son has not been trained not to whistle in between songs during a preschool program

If he had a better mom, he wouldn't have done that

This is the worst thing that has ever happened during a preschool program

I have failed him.  Publicly.

If I were perfect, he would be perfect, too

And then ... um ...

Yeah ...

Do you ever have one of those days where the "mom-guilt" just gets so overwhelming that all you can focus on is failure and you just need to follow the thoughts you are having to their logical conclusions to see how ridiculous they are?  That's what kind of day I'm having.

Praying that perhaps one or two of you knows what I am talking about ... otherwise this post is going to look very, very silly.

Say it with me, friends: Children are a blessing from the Lord. :)

Friday, May 18, 2012

Love


I am loving this weather!

Loving this girl.

Loving the Daddy and Charlie playing soccer behind her.



Loving family time


Loving food grilled outside and eaten with a Summer Shandy beer



Loving growing flowers and digging in the dirt





Loving working on a project together as a family


Loving a front row seat to a beautiful brother and sister relationship




Loving the care he shows for her




Loving the trust she has in him



Sometimes when life is really good like this, I feel like I'm waiting for the other shoe to drop.  Not in a pessimistic way, but I just realistically know that we are going to have another rough time someday.  More surgeries or illnesses or sadnesses or whatever.  But I know that God is always good, all the time.  So whether I'm experiencing good times or bad, I know that I honestly do love my life.

Give thanks to the Lord, for he is good.  His love endures forever

Wednesday, May 16, 2012

I'm gonna be really annoyingly proud of this for awhile

video
She's walking!  No more needing a hand or taking hesitant little steps - she's made her move and is claiming the world as her own!




And let me tell you ....
she's pretty darn proud of herself!

Praising God for how far this little girl has come :)

Saturday, May 12, 2012

Boxing gloves on


Three stories:

Emma is showing an interest in trying food orally again.  It's great!  So I called the clinic where she did feeding therapy last year (before her "tummy troubles") and asked how I could get her into the feeding clinic again.  Three different referrals from our Wonderful Pediatrician and at least SIX phone calls later, they offered me a July appointment to evaluate her for feeding clinic.  I understand that feeding clinic involves OT, Speech, and a dietician, and I understand that getting all those people and Emma together in the same room takes a scheduling miracle.  So I said, "Could we please, in the meantime, have Emma start OT with a feeding goal?"  The gal I was on the phone with said that it was possible, but that I'd need to talk to Emma's OT from last year and then get an additional referral from our Pediatrician Who We Love for an OT eval.  I made those phone calls.  Emma is starting feeding with her old OT next week.  I win.

*************************************

Emma takes medicine for acid reflux.  This medicine must be mixed a certain way so that it can go into her tube.  One of the components of the mixture is Sodium Bicarbonate (baking soda, for those of you keeping track).  Evidently, there is a national shortage of Sodium Bicarbonate.  No, seriously.  Pharmacies across the country are having trouble keeping enough of the stuff on hand.  For this reason, Emma's medicine is harder to come by.  Our opening move, on Tuesday, was to order it from Pharmacy A.  They called and said it would have to, instead, be filled by Pharmacy B.  Pharmacy B, however, did not have a "compounding pharmacist" on duty until 9 pm.  When we picked up the medicine the next morning, it still needed to "compound" for 5 more hours.  Emma missed a dose of medicine.  I lose.

*************************************

Last week Emma was summoned to Children's for Cleft Clinic.  This is a wonderful service provided by Emma's ENT wherein all children who have had a cleft palate repair go and spend the day rotating through a team of OTs and SLPs and Dentists and Orthodontists and Nurse Practitioners and ENTs who then talk about these children behind their backs over lunch.  After lunch, the entire team meets with each child and their parents to discuss future care and whether or not a follow-up surgery will need to take place.  They also have dieticians get involved with weight gain issues and feeding and Speech Therapists get involved with speech concerns surrounding cleft palate issues.  For children who had a cleft palate and that's it, this is GREAT!  In Emma's case, it's a few too many cooks in the kitchen.  Her repaired cleft palate is the least of our issues.  Emma already has a dietician through her GI (who followed us VERY closely after surgery) and will be under the watchful eye of a dietician for feeding clinic this summer.  She doesn't need a third.  And she has no speech issues associated with her cleft ... she doesn't talk ... and that has nothing to do with the cleft and everything to do with CdLS.  Now, Emma's ENT is a very ... self-assured, um, experienced surgeon.  In the ultimate act of speaking truth to power, I asked if this yearly day of ... fun ... was really necessary for Emma.  He listened.  We are now going every 2 years for an "afternoon only" chat with just the ENT.  I win.

I'd like to just sigh and say that two outta three ain't bad ... but I think Emma needs more from me than that.

I had NO idea how much hard work, strength, fight, and courage would be required of me when I became Emma's mom. 

She's so very worth it

Friday, May 11, 2012

He still picks me dandelions

He's getting older


He cares about what he wears and wants to make his own choices more and more every day.

His childhood is going by too fast



And I was REALLY mad at a pharmacist's mistake this morning.  So before he left for preschool, I did NOT display love or joy or peace or patience or kindness or goodness or faithfulness or gentleness.

I picked a battle I shouldn't have picked.  He pushed back.  I yelled.  He cried.

I am imperfect.  It makes me sad.




I told him I was sorry.  We prayed.

And then, this afternoon, he picked me a bouquet of flowers.


Children are a blessing from the Lord - Ps 127 

Wednesday, May 2, 2012

Tuesday, May 1, 2012

Assuming

I hope for the best for my little girl.  I really do.

But sometimes I catch myself assuming that certain tasks are just not going to be in the playbook for awhile. 

It's not that I don't want to have high expectations for Emma, but, well, I guess I just feel like sitting down to teach her the letters of the alphabet might just be an exercise in frustration at this point.  I'll focus of the possibility of her eating by mouth instead, I guess. 

And what's hard is that she doesn't learn by following directions.  She can't (won't?) follow any verbal direction, other than 'no' or 'come see Mama!' ... and that second one is really only if she wants to.

But she does learn well by routine.  I didn't directly teach her, for example, to push her arms through the sleeves of her shirt when I hold it up for her.  She just realized that that's what happens next after I pull a shirt over her head and for some reason she wanted to be positively involved in that process :)

So if I were to decide to teach her something, it would have to be a very predictable routine ... which has been hard to institute with all the medical stuff going on lately.  But now that we seem to be slowing down a bit on the medical front, maybe it's time to pick something new to work into our routine.

(inner monologue:  WHY?!?!?!  I'm tired already!  Don't I have enough on my plate?  What if she doesn't get it?  Do I really have the emotional bandwidth for a battle that I may very well lose?  Sigh.  Ok, fine)

I tried this today:


She washes her hands at school, I'm told.  Let's try washing hands at home.  She likes water, maybe this will be a good new routine.

How on earth did she get so big?  Look at her standing there like a big girl!


"Wow, Emma!  You're washing your hands like a big girl!"


"Ok, mom, let me get this straight.  You are LETTING me play with water in the house?  Like, I'm SUPPOSED to stick my hands in there?  WOW!  How did I get so lucky?!?!"

this may backfire in the future ...

Okay, so maybe I can't take credit for having taught her something new, I had to put soap on her hands and rub them together for her, but then she reached out and rinsed them and was definitely a willing participant!  It was a cool thing for me to see her doing something that I had assumed she couldn't do.