Tuesday, November 22, 2011

Thank you for ...

I have lots of vivid memories from my 5th grade Sunday School class.

Two men teamed up to teach the class, and had for years.  They were very very good Sunday School teachers.

The only negative memory I have of that class was the prayer time at the end of every lesson.

I think our teachers wanted us to start getting comfortable with praying out loud as a group, so at the end of every lesson, we stood and went around the class and everyone had to say something.

I'm sure it was a good idea on paper, but what it turned into was a bunch of very timid middle-schoolers NOT wanting to stand out in any way ...

So we all said the same thing:

"Dear God, thank you for my family and friends."

Around the circle the chant went, deadpan and robotic, all of us fearful of possibly putting ourselves out there in any sort of vulnerable way, so all of us saying,

"Dear God, thank you for my family and friends."

Week after week, that's what we prayed.  I'm not really sure how it got started, but it was the rut we fell into.

So now, when I think about thankfulness, that sentiment sounds cheap to me.  Like it's cheating.  Like I should be WAY more profound than thanking God for the family and friends I am surrounded by.


God has given me some AMAZING friends.  They support me so wonderfully and challenge me to be a better wife and mother.  I am so blessed by my friends.

And I have an INCREDIBLE family.  My husband and children love me so much more than I deserve, and our extended families also support and love us so generously.  I could not ask for better in-laws, better siblings, better grandparents for my kids, or a better father to my babies.

So my overwhelmingly heartfelt prayer this Thanksgiving is

Dear God, THANK YOU for my family and friends.

Saturday, November 19, 2011

I never met him

We are so blessed in this day and age to have the ability to connect with people all over the world through these strange little boxes.

When we first got Emma's diagnosis of CdLS, it was terrifying to know that no one would know what we were talking about when we said those letters.  When we first brought her home with a tube sticking out of her, it was isolating to know that no one we knew would be able to give us the comforting advice of someone who's "been there."  I'll never forget the panic I felt the first time I saw the bright red in that tube that told me that her stomach was bleeding.  I felt like I was the only parent alive who had ever seen such a thing.  It was awful.

But then I discovered this group of very unlikely friends.  Through this blog and then later through other sites, I "met" some amazing people.  We are mothers, fathers, gay, straight, liberal, conservative, single, married, engaged, divorced, Christian or not.  And we are FAMILY ... even though, in some cases, we've never met.

We all love someone with CdLS.

And through this strange, miraculous technology (for which I am VERY thankful!) we can be in touch at all hours to ask questions like, "How do you stop inquisitive little hands from feeding the bed?" ... and we know that we'll find someone on the other end of the "wire" who KNOWS what we are talking about.

We've been there.

We rejoice like no other because we KNOW what it's like to wait a long time for those milestones.

We bear with one another and hold each other's burdens, because we know the PAIN of ... well, all of what makes this unique road hard.

And we laugh and are comforted because our child is not the only child who will, for example, only walk holding your hand ... we sigh because a push toy won't do and we smile because we remind one another of what a blessing it is to get to walk with them for awhile longer than most. 

It's amazing how much these kiddos have in common!

And I know that it's weird to think about being close friends with someone you've never hugged.  And I know that being emotionally invested in these relationships is confusing.  I wouldn't have understood it a few years ago. 

But I'm mourning the death of a child I've never met today.

And I know that's weird

And I know it's confusing.

But one of our little CdLS boys passed away this week, and we all mourn together.

And yes, we probably internalize it a bit, also, knowing that we have no guarantees.  It's a complex set of emotions, to not want to "borrow" someone else's pain, but to feel it in a way that hits closer to home because ... well, when I saw a picture of his smile, it looked so much like Emma's smile ... and when I heard a video of his laugh, it sounded so much like Emma's laugh.  And when ... well, you get the idea.

We're reminded that, not to sound too cliche', but every day really is a gift from God.

Dear Jesus, please surround this little boy's family with peace and love today.  We rest in the knowledge that he is with you in paradise, but we know he will be missed.

Monday, November 14, 2011

"I wish Emma didn't have CdLS"

Charlie has two little ones in his life who are around 10 months old.  One is his cousin Sophie and the other is the son of a friend of ours who I'll call "L".  :)  The thing that's super fun about this age is that they think Charlie is HILARIOUS!  It's the age where all he needs to do is touch his forehead to theirs and say "Ahhhh-boo!"  and they'll laugh.

The hard thing about that age, though, is that they are just about the same 'size' as his sister. 

If you were to ask me about my 3-year-old's skills, I would tell you that she's probably developmentally  about 12 months old.  She says, "mama" but not much else and she can walk but it's still faster to crawl.  She wears 18-mo clothing just like his cousin, and she's just as needy.

So when we were sitting at lunch the other day, I could have read his mind, watching him watch his sister.  He walked over to her and put his forehead to hers and said "Ahhhh-boo!"

She didn't laugh.
He used to be able to make her laugh ... but these pictures are from Dec 2009

I'm not sure if it's because she's too old for that or if she's just not cognitively or socially typical or if the novelty of her brother has kind of worn off by now, but it clearly affected him that she didn't laugh.  He didn't get upset, but I saw him sit back down, very deep in thought.

"Mommy?  I wish Emma didn't have CdLS."

"Yeah ... Why do you wish that, buddy?"

"So that she could talk to me and I could talk to her"

"I wish that, too, Charlie."

I thought for a long time about the right thing to say next.  (SERIOUSLY, WHERE IS MY PARENTING MANUAL???)  I was proud of him that he was able to give voice to what he was feeling.  I was conflicted about what he said, though.

"But, think about it, dude.  If she didn't have CdLS, she wouldn't be the same little sweetie worm."

"Would her name still be Emma?"

"Well, yes, I suppose, but we love her just the way she is, right?"


"Then, well ... I guess we can wish she would talk and wish she didn't have so many appointments and sicknesses, but ..."  I didn't know how to finish that sentence.

"Yeah, I don't like appointments, mom."

"I don't either."

I thought again for awhile

"You know, Charlie, we don't know that she'll never talk.  We just have to be patient sometimes with some things."

"That's hard."

"Yeah, but that's where God helps us.  Remember your fruits of the spirit song?  He gives us patience."

(he breaks into song) "Cuz the fruits are love joy peace patience kindness goodness faithfulness gentleness and self-control."

and then the moment was over, lost in the silliness of the song. 

Charlie sat and hummed and ate his lunch and I want credit for the fact that I did NOT cry.

I do NOT have this all figured out!

I wouldn't trade Emma for the world
Without CdLS, Emma wouldn't be my Emma
I sometimes hate CdLS
I love Emma

(and, parenthetically, there's this whole theological side of things that i don't really have figured out either.  someday i'll write my "did God give emma cdls?" post, but today is not that day.  i guess i'd refer to Psalm 139 and Ex 4:11, but i'm still sure i'd get it wrong.  either way, i have a strong sense that God doesn't make mistakes.  in fact, i would find it offensive if someone were to say something to me about "the child she would have been" had this terrible thing not happened to her.  but i can think of instances in the Bible where God clearly allows suffering ... and there is certainly suffering on this road ... so while emma is clearly a blessing and cdls is all tangled up in that blessing, i'm not sure whether i could ever separate cdls from emma when i thank God for her ... so am i allowed to wish she didn't have it?  i'm not sure ... but God can handle that :))

Sometimes I think that, when we are both grown-ups, Charlie will have this figured out WAY more than I will.  He gets the benefit of being a child at the beginning and not having the burden of worrying about saying the right thing.  I'm all grown-up and afraid I'll offend someone if I admit to not liking CdLS, but he doesn't have that burdening his process.  He just gets to love his sister.  And as he grows, his love for her will certainly get more complicated, but it will grow, too.  I'm really really proud that he is mature enough in his love for her to admit that sometimes this stinks but that he loves her anyway.

He still thinks she's his silly little sweetie worm :)
(this picture was taken after that conversation ... he still likes her :) and she likes him, too)

I am so blessed to be their Mommy.

Saturday, November 12, 2011

Happy Birthday to Emma

It's hard to believe she's three!

I love her so much, I can't picture life without her, and I'm really really proud of her.

But I have to say, today is a little depressing.

Yes, there are the expected emotions of the word THREE ... now having to tell people that my THREE-year-old doesn't talk yet and that kind of thing.  In many ways, she does seem three to me (can we say DIVA?), but in so many ways, I agree with the strangers who say, "wow, she doesn't seem three!" ... not that it doesn't still sting a little to see their surprise.

But actually, that's not most of why today is depressing.  Today is depressing because, for the second year in a row, we've had to cancel our family celebration of her birthday because she's too sick.  Last year, she was in the ER on her birthday, so I suppose conjunctivitis and a sinus infection (in addition to continuing unresolved reflux issues) is an improvement, but it doesn't feel much better.

On the plus side, though, I can talk again!  My throat is still pretty sore and it hurts to eat and all that ... so really what this comes down to is that I've discovered the best weight-loss plan EVER ... or not. :)  But I think by Monday I will be very ready to join the land of the living!

So happy birthday, Emma!  Your family and friends love you immensely, even though we have to hold you down and put drops in your eyes.


Friday, November 11, 2011

Checking in

Emma is sick and my recovery isn't going as quickly as I would have hoped.
For those who don't know, I've been MIA lately because I had my tonsils out. Yes, I know, I'm a little old for that :)
It's something I've needed to get done for awhile now and when we scheduled the surgery, it seemed like we'd arrived in some calm waters in our crazy life.
But the surgery was a week ago and I'm still unable to talk. I'm weaning myself from the narcotics today because it's time for Josh to go back to work and me to be able to drive. Children's Advil tastes really yucky, btw ... but I can't exactly swallow pills yet.
And on top of everything else, Emma seems to have developed a cold. Poor baby!!!! :(
And, one more time, cue the Mommy Guilt!
I have to say, though, I could not be more thankful! I am SO thankful for our family! The grandmothers have been SO wonderful helping us this past week!!!! And Josh has done a really great job of ... you know ... doing what I do :)
Thank you, Jesus, for my family. I don't know what I'd do without them!