Wednesday, February 23, 2011

2 Things that make me laugh

"Charlie, I understand that you are just quoting Goliath from your Bible, but telling your friend that you are going to chop his head off and have him on toast is not polite dinner table conversation. Now hand me the knife."


Charlie and I were having hot chocolate after playing in the snow. We sat Emma with us and gave her some marshmallows to play with. She's .... ummm ... conducting an advanced study of gravity lately (read: throwing), so all those little marshmallows ended up on the floor. So I fished a sticky marshmallow out of my hot chocolate and gave it to her. Watching her try to throw it was HILARIOUS!

Then I cheered when she put it in her mouth. Charlie said, "Daddy! She ate her first marshmallow! Mommy, is it gone? Did she actually eat it?"

"Um, let's see. No, buddy, it's back here in her hair."

"Daddy! Emma put her first marshmallow in her hair!"

Apparently we celebrate accomplishments fairly liberally around here :)

Hope you are having a wonderful day

Sunday, February 20, 2011

Tough to swallow

One of the most frustrating questions I have people ask me is, "When are you allowed to start feeding her?"

As if it's really that easy ... just sit her in a high chair and feed her!

I get why people ask; when we first brought her home, people knew about her major tummy surgery and her cleft palate, so they assumed that she had a tube because of that ... and for awhile, I was ok with that assumption. I even kind of embraced it because we didn't KNOW that she couldn't eat, we just knew that she sort of had the deck stacked against her due to her physical issues and she had sort of lost all those instincts to eat when she was hungry because she had been tube fed since the beginning.

And she's had seasons of "good" eating - taking bites, doing some swallowing - but it seems like there's always some illness or .. you know, random facial paralysis ... that stands in the way of her progress.

So I wasn't terribly worried about her swallow study last week. Her feeding therapists just wanted to see what she was and was not doing so that we can proceed with a new kind of swallow therapy in the coming months.

I wasn't prepared to hear about her aspirating.

But she did. She let food straight down that windpipe, never even coughed. She did swallow during the study, twice. But she also let some liquid just sit towards the back of her tongue and didn't clear it up or down, sent some food up her nose, and let some slide down into her lungs.


So she is now not allowed to try liquids. She has an "uncoordinated and inconsistent swallow."

I asked if this is something she may grow out of, or if her therapy could help her move past this. I hate the way therapists say, "Well, she could, but, you know, with her diagnosis ..."

So starting around April we're going to do a therapy called VitalStim, which means they will place electrodes on Emma's swallow muscles in her neck and give her some food and then stimulate those muscles to help her learn to use them to swallow. It sounds much more barbaric than it really is, I promise.

But for the first time I'm realizing that maybe this tube is a permanent thing.

On one level, I am proud of her. She's not just being stubborn about not eating, she's protecting her airway because she knows she's not safe. And I'm SO glad we already have the tube and we don't have to make that incredibly hard decision. She's getting nutrients, she's growing and developing, and if she never eats, she can still live a happy, healthy life.

We'll of course give her every opportunity, but I do have to admit that this was not fun news to receive.

Tuesday, February 15, 2011

Our prayers were answered

The answer was no.

This post has been brewing in my brain for awhile, and now that our pastor has been doing a series on prayer, it's come together in a way that has made me realize that maybe there's something I need to share.

I've been thinking a lot about prayer - especially prayers that are answered, "No."

Now to Him who is able to do immeasurably more than we can ask or even imagine, according to his power that is at work within us, to Him be the glory ... (Eph 3:20)

When we were pregnant with Emma, we prayed. A lot

Dear Lord, you are able to heal Emma. Please put her stomach back where it's supposed to be. Please heal the hole in her heart and make her aorta pump the way it should. Grow another artery in our umbilical cord. Grow her. Keep her safe. Please don't let her die.

Were those prayers too big? Far-reaching? Arrogant? Too bold? Unrealistic? Reckless, even?

Which of you fathers, if your son asks for a fish, will give him a snake instead? Or if he asks for an egg, will give him a scorpion? If you then, though you are a sinner, know how to give good gifts to your children, how much more will your Father in heaven give to those who ask? (Luke 11:11-13)

There were other prayers, too.

Dear Lord, the doctors say she might be different. Please don't let her be different. Please let her be my definition of smart and beautiful, able to do all the things I can do in the ways I can do.

When I was pregnant with Emma, I'd see mothers like me with children like Emma and I'd burst into tears.

Lord, I can't do that! Please don't give me that life!!

The answer to that prayer was no.

And there are many days that I'm not sure WHY our answer was no.

Since then, some answers have been yes, some answers have been no. We've had moments of pure miraculous joy as we've realized Emma has heard us for the first time or is communicating in ways we didn't think she could. But we've also watched her hospitalized and rushed her to the ER and held her during moments of unsolvable pain. We've been frustrated by her ears and feeding issues, and we've been blown away by milestones reached.

Job said, "these are things too wonderful for me to know."
The Lord gives and the Lord takes away, blessed be the name of the Lord.

I've spoken many times on this blog and in my life of the ways Emma's presence in my life has been an immeasurable blessing.

So I know that God is good.

in all things God works for the good of those who love him ... Romans 8:28

So I will continue to praise Him and continue to thank Him.

Just like Charlie doesn't trust me less or love me less if I say no to him when he asks for something that is not in his best interest, my trust and love for the Lord doesn't depend on his answers to my prayers

And I will continue to ask and pray and trust

The Bible tells us to be persistent in our prayers, to pray expecting an answer, to come into God's presence knowing that we have been lovingly INVITED to be there

Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need - Hebrews 4:16

I am certain that I am supposed to be bold, persistent, and faithful in my prayers

And lately, Emma's ... well ... two-year-old-ness is really starting to show, and we're experiencing some frustration around here on a couple of fronts

So I'm going to pray

Dear Lord, use Emma's life - her struggles, her smiles, her joy, her triumphs and her falls - use it all for Your glory. But, please, Father ... Daddy, could it please be in your plan that she be able to talk? Please could she be able to tell me in words if she's sad or afraid? Please, let her be able to say the words, "Mommy, I love you."

It's not about me
I love you

Thursday, February 3, 2011

sometimes you just have to let little thoughts like these out ...

... in no particular order with no particular agenda ...

My last haircut was 6 months ago. It cost $9.99 and Emma was sitting on my lap ... oh, well, don't have time for more than a ponytail anyway.

I just finished memorizing Paul's poem about Christ's humility in Philippians 2 ... memorizing Scripture is convicting stuff!

My husband left a lot of crumbs on the floor last night from his dinner ... which he ate alone with a sick Emma so that Charlie and I could go to church. Those crumbs were not hard for me to clean up. :)

I've lost 7 pounds ... I still think New Years Resolutions are silly

Been thinking a lot about prayer and what it's purpose is in my relationship to the Creator of the Universe. Why on earth would He want to hear from me? Wishing lessons like this and this could be learned without so much struggle.

I couldn't find a Valentines Day card that said what I wanted it to say. Why do they all have pictures of curling up on the couch and foot rubs and barefoot slow-dancing instead of "You are the most admirable, hardworking, amazing father and husband and MAN I could ever hope to be called to honor and respect for the rest of my life?" you know, maybe with a picture of a good ole DAD playing monster trucks with his son ...

just my two cents

Emma is feeling much better today. She is back to giggling at me when I stick my tongue out at her :)