What’s in a name

We were searching for this diagnosis…so why when we found it was I so surprised?
and why did it hurt so much.

Ring Chromosome 13.

Maybe it’s just that now there is a name that will haunt the rest of my life, or that with that name there come statistics. 

Statistics that scare the crap out of me. But statistics I have faith we can overcome. Jude can overcome them. He already has. He has proven the doctors wrong several times, and I couldn't be more proud of him.  

 1 in a million. That’s what our Genetic Counselor told me over the phone last week. This condition effects “1 in a million babies, probably less”. Holy smokes. While my head tells me to be mad, and say “In all the world why me?” my heart doesn’t say that at all. It makes me feel, mostly just proud. God chose us to be the ones to overcome the odds. Maybe it’s just me being a mom, but I have this unconditional pride in my son. He is a miracle beyond words, and even if tomorrow is the day we lose him he overcame more in these 6 months than most people will ever be able to say they have.

He is 1 in a million to us. For reasons far beyond any physical conditions, or disabilities.
Jude and his big sister Daisee… Their first picture together:)

Along with this diagnosis comes the opportunity for research. We are getting the chance to let the doctors and scientists research, and write reports, and publish information that has rarely been published. While this doesn’t give us answers right now, it will hopefully give someone else when they’re told their baby is one in a million the answers they’re desperately seeking.

And that is an answer to my prayers. That this whole thing will be so much bigger than us. That God will take the good, and make the good outshine the bad by so much we can’t even question why us.

We know this all won’t change the world… but it could change someone’s world.
And that’s enough for me.

This is for you…

…to my Husband.

You have carried me. I have told you 50 times “I would die with out you” in the last month. I was terrified for you to even be out of my sight, and it’s because I needed you in a way I didn’t know I could need anyone.
 
Today we’ve been married 2 years.
 
  And to say I love you more today than I did on October 25, 2008 would be an understatement.

It was a day we both had waited our whole lives for. We took a million pictures because I didn’t want to miss a second of it. We dance to Michelle Featherstone, and ate yellow cupcakes with fudge frosting. We laughed,we kissed, and we cried. Everyone we loved was there, and it was perfect. I’m not gonna go on and on about how great you are…
although I should about how he does dishes for me when I leave them in the sink, and picks the gobs of my hair out of the shower drain. 
  Just know this babe:
You are a better husband than I am wife. Your love for life, and for me, and for God is obvious. I love that you make everyone around you laugh, including me. A lot. You work at making yourself better, and it makes me want to be a better person for you. I love you.  

Whats a duck say?

quack quack quack

Last time I told you about my day with her she was starting to crawl. Well this week we went shopping. And pushing this girl around in the cart at Target… (she does not like to sit in the baby seat I will let you know that now, so her good aunt let her stand in the cart spilling cheerios the whole time)… she knows how to attract a crowd. I think it was her encore of barnyard sounds as loud as she could that really got the people watching.
She wears skinny jeans.
And pink Converse shoes.
And she does rock pigtails… she also does not crawl anymore, because she runs. 

She loves Daisee. Who she chases around calling “oey”, because her dog is Zoey & all dogs will be called oey.

She is 1 with the personality of a 16 year old. 
gosh I love those little toofers. This week she learned to say Jude. Although I haven’t heard it yet, I’m told it sounds like “dude”… but that’s cool with me. We call him Dude anyway.

Wordless Wednesday

Hey Jude….
Just scroll down to the music and skip right to minute 3… that’s where it gets good.
Naaaaah nah nah nananahhh nananaahh Hey Juuuuude.

Hope

When we first learned that Jude was sick, I began to prepare for the worst. I had no hope that this could turn out well. And to be honest, it made me mad when people would say things like “ miracles can happen”. This is not a situation you can prepare yourself for, but my reaction to it all surprised me. I’m not an angry, negative person… but I started preparing myself to never get the chance to hold my son, and hear him cry, or watch him grow.  
I had to accept that he was not going to live a normal, healthy life… and I was preparing for the worst. It was probably my selfish self-defense taking over my heart and my head, because I felt like it was the only way I would survive. One of those first days after the news I wrote this…
“I will continue to tread water….
I move my feet back and forth to keep my head from going under the water… sometime it does, just for a second slip under the surface, and I can’t breathe. In that second, reality is just too much to bear. And to be honest, it feels good to just let myself sink… to quit trying so hard for just a few seconds to stay afloat, and just sink. But that is only a good idea for so long… So I have to swim like hell again, get to the surface, and catch my breathe.”

But I never hit publish. Because every time I read it I was disgusted with myself for even writing it. Where was my hope, and why did I think this was all about me?

I think in the last week I’ve gotten back into the normal pattern of every day life, and somewhere along that path hope found me. We serve a God that doesn’t care what the doctors tell you.
… He can do all things.

Someone recently wrote me a message, and reminded me that God knew Jude before he was even a thought in our minds. He knows his face, and his hair… his brain, and his fingers… he made them. And he made them perfectly. 
He knows exactly what Jude needs, and what his life will be. I can have hope… because The One who made Jude, already knows.

Why had I not wanted to believe that He could fix every problem Jude has? I was too afraid to get my hopes up, and way too afraid those hopes would be taken from me.  I know the next weeks & months will be a constant battle between keeping hope, and dreaming of what wonderful things could be… and trying to be realistic and preparing myself for losing Jude. But Wade and I are going to continue to believe in Him, and His plan for Jude… and that means we fight for hope. And maybe we’ll get an hour with him. Or maybe we’ll get a day. But we’re painting our nursery blue, and there will be a crib in it. I know it’s a long shot to think that Jude will sleep in that bed, but I’m going to do what any mom would do. I’m going to get ready for my baby…

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. –Romans 15:13

Malia is almost 1

I can’t believe it was almost year ago this pretty little thing came into my life. Well, maybe more accurately came into our friends lives, but I do see her almost everyday. Kim asked me to take pictures of her, and their family after her last pictures (at a indoor studio) was mostly filled with screaming and crying.
Of course I loved doing this…

This is my fav….standing awkwardly in fury big boots &  a tummy that makes me want to grab her and kiss her til she giggles.

“hey lissa aren’t you coming?” :)

You can’t tell me this picture doesn’t make you smile… a lot. I laughed til it hurt when I opened this picture for the first time…and I needed that.  Even in the darkest of days, God puts light and laughter right where you don’t expect it. This is just an exceptionally big smile by the way...she's not screaming at me:)
I love you Malia Grace.

There was a whole lot more I planned to write about today, but I just don’t feel like it…. so why not just show you some cute people to a little Macy Gray instead:)

We’ve traveled to the doctor and back, and saw a very cute little boy face while we were there…you can check out that update here:

http://www.caringbridge.org/visit/judekroeze/journal

the leaves…& the mohawk

Since the trees have taken on this fiery hue outside my office window, the coffee in my black cup has changed to apple cider. It certainly is the most beautiful fall I’ve ever seen, and now as we go on day 20-something of sunshiny bliss , how can we not be thankful. Being a farmer’s daughter, I know very well this October weather is not the norm as my dad races to get the crops out in time for basketball practice to start. He will hopefully be done with a month to spare this year, and for that I am so very thankful.
But we’re sucking it all in, all things fall, at our house. 
Daisee, Jude, and I sat our on the deck and watched Daddy go round and round our back yard this morning with the mower. It felt like a farewell to summer, as it still had a smell of fresh cut grass, but now mixed with the scents of fall..and  watching the leaves fall from the trees as fast as Wade mows them up makes me laugh a little. Would Jude have been a sort of perfectionist like his Dad? (who I know secretly hates fall because he can’t keep the yard looking neat & clean no matter how hard he tries) Like Wade, would he have a photographic memory I could only dream of, and be good at math? Or would he love to write, proofread, and edit… love artsy music, and hate milk, just like his mom.

We think he is the perfect mix of us. Loves sports, and loves his grandparents. And while of course, we can’t be sure if his skills would be in Math or English, I can tell you with certainty he would have looked adorable in the mohawk my sister and I had planned for him. Not the shaved head kind… but just a cute spikey mohawkish type style. The kind we can comb to lay flat when we go to visit Grandma because she told me I could never do that to my children…or she would shave it off. :)

Jude I know you will have the cutest mohawk heaven ever did see… and your hair stylist mama will be so proud.

One week ago

Happy 22 week Birthday Baby Jude!
It was a week ago, almost to this minute, the lady doing our ultrasound set down the machine, looked me right in the face and said

“I”m sorry, but I’m finding some things concerning”.

And the look on her face will stay in my mind forever. I remember her hair, and her expressions, every word out of her mouth like it was slow motion, and I was watching this happen to someone else.

And one week ago, my world spun out of control, and all I could do was hold on for dear life. I moved from room to room, into our car, into another hospital, into more rooms with more faces I won’t forget. The details of what anyone said I’ve forgotten, or probably more truthfully, I never heard. There was one truth I heard that day, and once those words had been said, the rest did not matter.

I’ve been trying to write when I’m having a good “moment”; when I know what comes to my mind will be positive, and I won’t sit here for an hour complaining. But today all I feel like doing is complaining. God has had a way of taking my days and giving me both grief and joy, and I know today won’t be any different. The joy will come back. 

So instead of an hours worth of complaining :)…

I’m just gonna show you Jude’s Halloween costume.

Your aunt Kelsi bought you this puppy hat, and it’s perfect for you. Cute, tough, & tiny.  

Cuz Dude, we have a lifetime of celebrating to do.  We don’t know if we’ll make it to share Thanksgiving, or Christmas, but buddy if we do, you can bet it’s gonna be awesome. I’m going to teach you and show you every “fall” thing I can. Carving pumpkins, and trick or treating with your cousin. We’re gonna watch the Macy’s Thanksgiving Day Parade, because I made your daddy get out of bed last Thanksgiving to watch it with me too. We already baked Pumpkin bread together, and I know you enjoyed, um… several pieces with me. I hope we can bake Christmas cookies, and sing Silent Night in church.  (okay we’re already listing to Christmas music …but that’s only because your mom is obsessed) We’ll probably play in the snow, and maybe go see Grandpa’s farm. And you’ll get to see Mommy & Daddy’s favorite thing… basketball season.  I could continue this list forever, but it’s because we got memories to make buddy… your mama is going to need those memories to hold for the rest of her life.

Your strength…

2 Corinthians 12:10 says:
“I delight in weaknesses,
in insults, in hardships,
in persecutions, in difficulties.
For when I am weak,
then I am strong.”

I came across this verse last night, and felt like it was meant for me... for the way my heart was feeling yesterday. After a few days of running on pure adrenaline, yesterday I was just plain and simply exhausted. I felt like every breath was a struggle out of my control, and I was at my weakest.

I absolutely love to write. Sitting at this keyboard is a place where my world makes sense even when the chaos shakes my world.

And after talking to many people yesterday, I feel lucky. Wade and I have been given a gift. A gift to share our hearts, our faith, our hope; and we are excited about that. We’re excited because people are listening. Hundreds of people are reading what we have to say, and it is humbling, and scary at the same time. But we have a chance to do something that you don’t get every day, and let me tell you, I’m not letting it slip away. This is our calling to tell this story of Love. And that’s what I’m going to do.

And that makes me strong.
Not physically strong under my own power, but a strength that comes from furthering His Kingdom; because at the end of the day, that’s what matters.  When I feel like my body is shutting down on me in moments of unbearable hurt, and grief, I get a strength in knowing we could impact just one person’s life. 

I am not trying to fool you into thinking we’ve got it all together. We don’t. Not even close. We’re in the midst of making decisions, and thinking about things no one should ever have to do.  We’re not supposed to be googling infant funeral expenses when we’re 24 years old. And it simply pisses me off. My mom always told me I can’t say “pissed”, but I feel like in this moment that’s putting it nicely. 

But even today I know God’s grace IS enough. We have a hope, not only for us, but for Jude’s eternity in Heaven. With out God this would be simply unbearable.

And now is my time to be strong. Jude needs his mommy to get out of bed, get out of sweatpants, take a shower for goodness sake, and go to work. And that’s what I’m going to do… Because he’s kicking in there, and telling me to get my butt going.  Life is calling… for me and him, together… and that’s what we’re gonna do. We don’t have forever together, but have today.

Letter to our son.

Jude Willem,
    Mommy and Daddy are sorry baby Jude, for calling you a girl. :) We know with out a doubt that you are a very tough and handsome little guy. (You are just like your dad, tricking us like that! He always makes people laugh too.) We also know that you are such a fighter. This body God has blessed you with isn’t making life easy, we know, but we are so glad that you are giving us this time to know you.
    Jude, your strength is our inspiration, and as along as you fight to live, we will fight for you too. We know that before Daddy & I are ready, God will be taking you to live with Him, but don’t worry little buddy; that is the best place for you.
It will be perfect. You will be perfect. 
Mommy wishes so bad she could go with you. To be honest, I would go for you if I could. Mommy and Daddy will hold you, and hold your hand until Jesus is able to take your hand from ours and lead you with him to heaven.
We can not wait for that day we get to see you, hold you, and kiss your little face. And after that, for the time that we’re apart just know that Mommy and Daddy will have each other, and a lifetime of memories of you.

All our love, Daddy & Mommy

Let me introduce you to Jude

"There is a time to weep, and a time to laugh, a time to mourn and a time to dance."  -Ecclesiastes 3:4

This verse has been very very close to our hearts for multiple reasons… today we found another.

We have found our “time to laugh”.

Our poor little boy was being loved and prayed for as Violet. After our first round of chromosome test  results were finished yesterday, we found that our precious little one, has an X & Y chromosome… a boy. My initial reaction was not laughing at all. I cried and cried, knowing that this mistake had been made. I felt horribly embarrassed that we had named her, and shared our story as if he, was a she. With almost 24 past since we learned the truth, we can now laugh and know this just another curve in the road.  Something we won’t soon forget, but in the scheme of our lives doesn’t matter at all. We never cared if our baby was a boy, or girl, and that hasn’t changed.

With that said, here he is.
Jude Willem Kroeze
 
Jude’s new and improved, very own, boyish, site… 
http://www.caringbridge.org/visit/judekroeze