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 :)

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)

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. :)

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 :)

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. :)

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

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

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 :)