Friday, August 28, 2009

I don't expect you to know what to say, because I don't know what to say.
This really and truly has been the hardest week of my life.
All of the prepping in the world can't prepare you for days that we've had.
I am sad. I'm angry. I'm heartbroken. I'm frustrated. Confused. hurting.
But I'm holding onto Hope. Rest assured, God's got me firmly in His grip, and I am kept.

Just a recap:
Monday, JD experienced the worst pain he'd had in his spine, as he tried to lay on the bed that night.
Tuesday, Mom called his oncologist and she scheduled a spinal MRI for the next morning. But also told us that she really really believed that he was relapsing...
Wednesday, MRI first thing in the morning. Dr. Goodman didn't have to say a word for us to know the results. She was wearing it in her eyes, on her shoulders. But she did say a word, lots of them, and our hearts broke then and there. The cancer has spread down his spinal cord. There's tumor near his tailbone, 'highlighting' in another spot.
I can barely stand to type those words.
Thursday, we took Cate to her cardiologist appointment to see if there was something that could be causing her lack of growth. The dr asked why were there, and I gave him the three reasons- her not growing, having a murmur, and my heart history. After explaining the conditions I have, he flipped over her EKG and said nonchalantly, "She has Long QT Syndrome, too." What!? I'm not sure it's really even registered in my brain yet. That, or I'm just numb. Some genetic testing is in the works, to determine which gene the mutation is on, so we can determine the best course of treatment. And in the mean time, and probably for the rest of her life, she's taking a beta blocker 3x/day, every 8 hours.
I have Long QT Syndrome- I was born with it as well, but was asymptomatic until I was a teenager. I ended up having to have a defibrillator implanted when I was 19 because of the severity of my condition. I can't stomach researching right now, can't look at what it may mean for her, as far as activities go. I just can't go there right now... Believe me, I am MORE than aware that there are much, much, much worse things, but this was something I had prayed and prayed that my children wouldn't have.
So now, it's Friday.
A new day?
I hope.

Thursday, August 27, 2009

more crappy news.

As if yesterday weren't enough... we found out today that Cate has Long QT Syndrome.
I can't do this.
I can't handle all of this.
I just can't.
Please... keep praying. This has easily been the worst 24 hours of my life.

Wednesday, August 26, 2009

everything i said yesterday...

times a million.
My heart has never hurt this way before.
I don't know what to say, what to do, what to think. I can't do anything and I can't do nothing. Really- I just can't do this, period.

So thankful tomorrow is a new day...
because I can't handle another minute of this one.

Tuesday, August 25, 2009

If you've ever loved someone with cancer, you know.

You know how my heart is breaking. You know the fears, the frustrations, the desire to take it all away, to make it okay.
You know that there are some days that it just eats you alive. You can't shake it. All you can do is pray and cry...pray and cry.

I'm having one of those days. One of those days where I'm barely functioning, my eyes are red, my contacts feel more like sandpaper, my stomach in knots, my heart in pieces. I just hate this- and if I could come up with a stronger word, I'd use it. It's not supposed to be this way. It's just not supposed to be this way. I know the "right things" to think and say and feel and pray, but my heart is not there today. Today, I'm angry. I want this to stop. I want to ask 'why'. Please, don't tell me "God has a plan" or "He's working this for good" or any of the other cliche (but true) statements. I know. I know those things. And I believe them as truth. But right now, they're tougher than I can swallow, more than my mind can be wrapped around. Right now, I'm just hurting for my brother, I'm tired and I'm sad. I want to ask for a re-deal, a new set of cards to play with. I want, so badly, for JD to feel good, for this to be done. Have you hurt this way before? Do you know what I'm saying? I don't think God is any less in control, any less good, any less love- that's not what I'm saying. Quite the contrary- I know He's good, He's love, He remains on the throne. But friends, this is just hard. I don't know how to do this. I don't know how to walk through this gracefully. I don't know how to be strong when I feel so weak. And so I won't.
Today I'll just be honest; I'm falling apart right now.
Will you please pray for my brother? Pray that he could just feel good? That the pain would stop? That he could sleep? That scans be clear? Could you pray for my family, too? I think we're all more than cracked right now... we're breaking. Could you pray for peace? Comfort? Wisdom? Rest? Doing so will do far more than you could imagine. It's the only thing I know for certain, the only thing I can really cling to. In my heart of hearts, I know, I know, that praying is what will get us through. Friends, we need you to be lifting our arms for us right now. Thank you.
..But if there's no other way-
I'm done asking why.
I'm on my knees, begging You to turn to me.
I'm on my knees, Father will You run to me?
One tear in the dropping rain
One voice in a sea of pain
Could the Maker of the stars hear the sound of my breaking heart?
One life- that's all I am
Right now, I can barely stand
If You're everything You say You are-
Would You come close and hold my heart?
So many questions without answers;
Your promises remain
I cannot see, but I'll take my chances...

PS- After I finished writing this, I was looking around at some other blogs that I read and came across this quote:
"Entrust your loved ones to Me; release them into My protective care. They are much safer with me than in your clinging hands... When you release loved ones to me, you are free to cling to My hand..."
I realized that I'm lacking something significant right now. That so crucial, so hard yet so simple act of trusting. I get it in my head, but definitely am showing a lack of trust in my heart...

An excellent dinner with wonderful friends...
A good nights sleep...
A day at the park ahead...

I feel refreshed.

Everything is gonna be alright.

Monday, August 24, 2009

gain, but at a loss.

Well, Cate's appointment brought good news... I guess.
She's up to 13lbs 0 oz. - a 6 oz. improvement from her highest weight.
BUT- she's been up many many times a night every night since Monday. Last night, I'm fairly confident that she didn't sleep at all. I've been nursing her 3-4 times / night, when usually she doesn't nurse from 8p.m. to 6 a.m. I think that has more to do with weight gain than anything else- and I cannot continue it! It's encouraging that she is indeed able to grow, but I feel like she's eating non-stop, day and night, always spitting up, always having this massive round belly.
I'm not convinced, and I don't think the doctor is either.
We go back in one week for another weight check, and if it's another significant gain, we'll spread out our visits to once every two weeks. We didn't discuss if it's not...
I just don't know what's up with Cate- this not sleeping, constant fussiness, won't let me put her down ever at all for any amount of time. I don't know how people do it, when that's just normal for their baby. I'm praising God for the easiness of both of my newborns.
Anyway, I'm running on empty. I went to bed at 11:30 and was up at 12:10, 2:00, 3:30, 4:50, 5:30, 6:15... And my house is a messy mess and we have friends coming over for dinner, which means no nap for me. So- I probably better get to cleaning. just thought i'd let you know that Cate DID gain weight! Pray for another good gain next week! (oh- I don't know if I mentioned last week that she had an ear infection, but it's gone, so that's NOT the cause of the sleepless nights/fussy days).

Sunday, August 23, 2009


#210 that I love having a baby girl:

Can't get enough of my sweet baby Cate. Or those stockings. =)

PS- If you look closely, you can see my newly painted room plus my second favorite garage sale find- that oversized wood chair. My Mom recovered the cusions for me and I'm in love!

Thursday, August 20, 2009

the little things

Today, my heart is just sad. But instead of going there...again... I'm choosing to remember all the reasons my heart has to be happy. drinking a cup of coffee at 3:30 in the afternoon, while my kids take an extra long nap... on a day when I desperately needed them to.
...having my windows open and watching my curtains blow in the breeze.
...being in love, still, and more so, ten years later.

...a new book shelf- that I've looked at and wanted for years (really!), clearanced 50% off and only $15 more than the cheapo when I was planning on buying.
...a baby girl. My baby girl.

...having a houseful of company, friends that are like family, who encourage and bless every time.
...a little boy and his daddy who look just a like. My little boy and his daddy.

...homemade chocolate chip cookie dough. Enough said.
...A big brother who loves his little sister so much.
...A peaceful run at dusk in late summer.
...A little boy who squats into a starting block position and shouts, "ready! Set! GO!" and takes off running. My little boy who does that.
...A clean kitchen, folded towels.
...A new air freshner in an apple-y fall scent.
...A quiet house, a still heart, a peace that surpasses all understanding.
I feel so much better.
What makes your heart happy?

Wednesday, August 19, 2009

on a lighter note..

Right after I published that last blog, my husband got home.
He asked me how much I loved him.
Odd start to a conversation, I thought.
And then... he went on to tell me that September 12-19 we will be staying in a 3 br condo, 5 minutes from the beach, in Sarasota, FL!!!!!!!!
You have no idea how excited this makes me.
Well maybe you do, but regardless!
I'm sitting here listening to both of my children babble off before falling asleep... some of the sweetest noises I've ever heard. I've got a diet coke (so sue me) and a baggie of puppy chow. My house is semi-clean, the windows are open, and for the moment, all is alright.
It's been a tough summer, friends.
Days like yesterday make me forever grateful for the support system that I have and more specifically, a God who promises to never leave or forsake me, who loves me and cares for me, who is a strongtower. Because otherwise, I'd fall apart at the seams.
I'm really at a loss with Cate's weight situation. It's so hard... everyone has differing opinions on what is right and what is wrong. It makes me feel a little crazy, but I know that the Lord made me Cate's mommy, and honestly, that brings me a lot of peace. We're praying and seeking and open to suggestions, for sure, but we do know and trust the doctor that we see, and respect her opinion tremendously. I battled with giving her formula for awhile, to be truthful. I did not want to do it. But what it boiled down to was this: What, in the long run, will be better for my little girl? If it is indeed an issue with my milk supply, and forumla boosts her weight up and she begins to grow- Praise God. It's definitely a chance I'm willing to take, because the seriousness of her continuing to not grow (or get smaller) far outweighs that of formula. I feel good about giving this a try. She doesn't love the formula, doesn't suck it down like she hasn't eaten in months. She's been taking an ounce or two after some feedings, but sometimes wants nothing to do with it. Other times, she'll take it without a problem. So I don't know, we'll see come Monday, I guess.
Her bloodwork came back good, overall. There were two things that were slightly low, and both seem to indicate being malnourished. Isn't that a terrible word? If there's ever been a word that made me feel inadequate as a mom, that is it. It tears me up to think that this could've been prevented, if it really is just my milk. I can't and won't play that game though, there's no use. She's given me no indication that she is starving and so I will not beat myself up... (listen to me convince myself).
Moving on.... My little brother was readmitted to the hospital yesterday, but is heading home right now. He's been in tremendous pain that pain medicine won't even knock an edge off of. Have I mentioned lately that I hate this? Because I do. I would give anything to take it all away... even to give him a day of normalcy. My heart is just breaking for him. That's all I can really say about it right now, because I just can't cry anymore.

Aren't I a bundle of fun? I'm sorry you, my few dear blog readers, get updates like this. I don't have many chances to write these days, and when I do, it's just an explosion of emotion. I'm not in a deep depression and I don't hate life. It's really quite the opposite. But this is how I process- I'm just a writer, words are therapeutic for me. Someday soon I'll write about all the cute things my kids are doing, or the wonderful date we had for our anniversary, or how in love with my completed down-stairs of my house I am. I just couldn't get there today. But maybe next time...

Monday, August 17, 2009


I went with my gut instinct today and took Cate to the doctor for a weight check.
Mama knows best...
My sweet little girl LOST an ounce in the two weeks that had past since our last appointment.
We ended up running blood work, which we'll have the results of tomorrow. We are now adding formula to each feeding; I'll nurse her like always, and then offer a bottle with 2-4 oz. of formula afterwards. I did this tonight, and she only drank an ounce... which makes me think she was already full. I just don't know what to think. I have a hard time believing that she's simply not getting enough nutrients. Wouldn't there be some indication that she's hungry? Would she be sleeping 12 hours straight at night? Would she stop nursing on her own? Would she begin to spit out her food by the end of the second jar of food? While it would be a simple fix, I just have a hard time thinking that's the case... but I'm hoping it is.
She's 7 months and a day old, and weighs 12lbs 9 oz., only 1lb 4oz bigger than she was at 2 months of age, and way off the growth chart (on the bottom end, that is). She's only grown 3 inches in her lifetime, and has dropped from 75th to less than 10th percentile. Thankfully, her head is growing correctly still and she has maintained the 45th percentile. She's way ahead of the game on reaching milestones- crawling at 5 1/2 months, on all 4 crawling by 6 1/2, pulling up by 6 1/2... She's obviously thriving. And she's as happy as could be. That seems to be the biggest good indicator to the doctor... she said several times how good it was that she was so smiley. I don't know. The Mama in me can't help but worry. We'll have blood results tomorrow, go back for weight check on Monday, and go on the 27th for her cardiologist appointment.
In other, GOOD news, Corban PEED on the potty, on purpose, tonight! WOOHOO! It's the first time ever. He's really, really, really wanting to go potty a lot, and is starting to get the hang of things. I can't wait to say goodbye to (size 4) diapers!! And we had good reports on my brother last week, too. But- Jordan and I rented a movie and he's (impatiently-haha) waiting on me so we can start it, so I have to end this here!
Please be praying for my little baby girl!!

Thursday, August 13, 2009

4 years ago...

I married my best friend...

It's still wonderful.
I fall more in love every day.
I'm so incredibly thankful to be walking through life with this man by my side.
I couldn't be prouder of the man he is, father he is, husband he is.
I couldn't be happier, laugh more, be more content than I am.
Yes, it is wonderful.

Looking forward to the next 40 and on...

Friday, August 7, 2009

ten minute break

Ahhh... A cherished, treasured, luxurious, glorious, (and so on) ten minute break. Ten minutes plopped in my shiatsu massage chair drinking my gas station coffee, totally indulging in sheer laziness without a hint of guilt. Mmmmhmmm.
But once the wheels stop spinning and the heat turns off, it's back to work I go.
This week has been chaos. Complete chaos. Ask my friends Jill or Katie... they saw my house mid-week, and they'll tell you- chaos is an appropriate word. However, we're turning a corner- I'm finally to the 'cleaning' stage of this house purging/project finishing/party preparing week. And I'm mighty pleased with the results, if I do say so myself!
Guess what?!
I bought a new couch today! Well, new-to-us couch, anyway. It's GIANT. Really, it is! It's a 4 part brown sectional and I like it. Yes! Finally! And FINALLY, I finished Cate's nursery, except for hanging a few things on the wall. And I absolutely LOVE the results.
Tomorrow is the wedding of our friends Jamie and Luke. I am so thrilled for them, so excited for all that God has in store, and just the way they've walked in their relationship, done things right- it's so awesome to be a part of! That was a terrible sentence, but I'm running out of time. Anyway, I'm a bridesmaid, Corban's the ring bearer and Jordan is playing drums for worship and emceeing (MCing?) the reception! Very much looking forward to it.
And then Sunday- we're finally having Corban's birthday party!! =) My big brother and his wife are coming from out of town, and a bunch of family is coming up for it. Corban is grasping the concept and was talking about his birthday party right before bed. He was saying "JD hold you birthday party, Grandma hold you birthday party, Isaac hold you birthday party.." It was sweet.
Anyway, my time is up. Off to rearrange my new furniture (and probably do some furniture swapping with other rooms!) I am SO glad that we chose the home we did... it has been a ton of work, but is slowly becoming exactly what we dreamed of- well, nearly what we dreamed of, anyway.
Happy weekend!

Wednesday, August 5, 2009

my favorite things about today

Well, yesterday, now that it's 12:02a.m.

one... That Corban said 'hello' and 'where are you going?' to every person we encountered in the grocery store.
two... That Cate can't nurse for a minute without coming off, smiling so big it swallows her face, and grabbing my chin before reattaching.
three...That my book shelf is finally clean.
four...That I looked at and hung up pictures of Jordan and me together from eighth grade track.
five...That I got a short mid-afternoon nap.
six... That around 8 girls from our jr. high youth group got baptized tonight, and two accepted Jesus then got baptized.
seven... That Corban clapped and yelled 'yay!' at the end of worship, and everyone laughed and so did he.
eight... That I still have leftover homemade brownies sitting on my stove. Just as good the day after.
nine... That Jordan and I had an uninterrupted hour together this afternoon.
ten... That His mercies are new every morning.

Tuesday, August 4, 2009

good news!

At long last, we got word that Cate's x-ray came back perfectly normal. No dislocated hips on her tiny body! PRAISE GOD! I've got to be honest- I was worried!

Now, we've just got to get to the cardiologist and get an 'all is well' there too. It's just got to be...

JD has an MRI on Tuesday. Please, pretty please, be praying for it. Honestly, I don't think I've ever been more nervous for an MRI than I am for this one. I tear up just thinking about it. I don't know if it's just from the weight of this month or what, but it can't get here and over with fast enough.

I made something new for Cate's room today. Once it's completed, I'll post some pictures. Until then... you're left hanging! (And that last word is a hint*)

Anyway, we're putting stuff in a garage sale on Friday, are in a wedding this weekend (all of us, minus Cate!), AND are having Corban's bday party Sunday (which I sent out 24 family invitations for...). But... then comes Monday and our lives begin to slow down, as school starts back up and youth events become less frequent. I am most definitely praising God for that... this summer was ROUGH.
Okay, so my piles aren't sorting themselves while I type, so I guess I better get. Adios!