Wednesday, April 9, 2008

Wordless Wednesday's getting wordier

It was my hope to convey she's watching Cinderella in her princess dress. Yes, I did make it. Those were curtains from a box of material. Ok - think about those hanging in your kitchen? Totally sure why I made into a dress up dress. Ugh - kitchen curtains like that - probably matched the big flowered wallpaper too? Vinyl seatcovers and bad linoleum anyone???

And just a quick thought about Joshua. If you'll notice - in some of the comments, there's a woman named Maria D. who's 27 weeks pregnant with Elijah. Elijah has a severe encephalocele like Joshua's. And she said today - the cele is growing and she's not happy about that. Maria - this is not condemning, just conveying my story ok?

At 28 weeks (must be when they can finally compare stuff???) the doctors said it was growing, I could definitely see it for myself though, and it was depressing. I'd been praying it would "grow back inside". No such luck for us...

But (I think it was my midwife who said??) that means his brain is growing! You don't want him to sacrifice any brain tissue! I think that's part of why Joshua did so well - his brain was all there! Of course it wasn't all working together, or doing its job. But I'm convinced he wouldn't have made it as long as he did if there was less brain, pieces missing, smaller cele... all of that. His skull measured small from the first scan, so there was never enough room for all of his brain inside - so if the cele had not grown, he'd have been missing portions.

I got to a point that I was glad it was bigger. I knew the outcome was going to be bad, no matter. So its not like a few more centimetres of cele was going to change his diagnosis. It just meant his brain was all there - that he was growing like normal - that he was a baby - not a mutation.

Xo Marie - praying for you. It's a sucky road to walk - but it had precious rewards. Even if that's only holding him for a few hours (whether he's here or not) it'll still be a precious reward.


  1. I agree...shiny orange curtains are not so cute. Oceana is adorable though, and looks really cute in her princess dress.

    If you don't mind my asking, where did you get the pattern?

  2. Concerning the dress/curtains...the dress is beautiful, and I agree. Curtains would be hideous! They'd probably go well with my mis-matched indoor paneling though! LOL.

    Very sorry to hear about Marie and her baby. It's good she has someone like you to help her through. I will pray for you as God uses you in her life. Blessings!

  3. Susie - thinking about you and praying for all of you. I'm sorry I haven't let you know more often, but you are on my mind every day. I miss your posts. I was glad to see you post today. Take care.

    Babyfit Jan 08 Mom
    (twosweetpeas, mommytojohn)

  4. Hi Susie (Elijah's mom here) just got back from Bible Study. It is amazing how in your blogs I find so many answers to my questions that go round and round in my head at all hours of the night when I should be sleeping or during the day when I should be doing things like washing dishes or doing laundry. I like what you said about "PRECIOUS REWARDS" I have been told and asked so many times about how hard I'm making it on myself by keeping him. BUT I LOVE FEELING HIM MOVE INSIDE ME AND KNOWING HOW PERFECTLY ALIVE HE IS. TODAY FOR THE FIRST TIME I COULD ACCTUALLY DISTINGUISH HIS LEG AND BOTTOM POKING OUT THE RIGHT SIDE OF MY TUMMY!!! I WOULD NEVER TRADE "MY PRECIOUS LOVE" for anything I JUST LOVE HIM SO MUCH! I love having him to love and Steve & I appreciate your willingness to share so much!!! WE LOVE OCEANA'S Dress!!! Boy girl do you got talent with that sewing machine!!! Curious did you sew your wedding dress??!!?!!?
    ALL OUR LOVE Elijah's mommy

  5. Susie,
    Those are beautiful photographs. Especially sweet Oceana with her pretty princess dress.

    I will keep you all in my prayers and I will add Maria to them also.

    God Bless and Take care

    Sonja in Florida

  6. Went to check on Joshua's blog and caught up on some of the blogs I hadn't had a chance to read. I AM SCARED I MIGHT NOT BE WITH THE RIGHT Doctor!!!!! first of all, last month at my appointment She told me it was better to have him natural and today I read on Susie's blog exactly what I was afraid of If Elijah has this "waterballoon like sac" hanging outside his head holding his brain DUH wouldn't you think it will bust during labor !!!!!! well my doctor said it was the best thing. Yesturday we went to another appointment and I asked her for an MRI and she said NO! you dont want to see that, if I thought it would make you feel better I would but you don;t want to see all that " it's not good news" and she walked out!!!! SO IS MY PRECIOUS CHILDS LIFE IN THE HANDS OF A DOCTOR WHO DOESN'T VALUE HIS life simply because he was formed wih his brain outside of his head?!?!?!?!?!?!?!?!?!?!? I always thought somthing bad could happen to him if he came through the birth canal!!! WHY DID'NT SHE TELL ME!!!! I AM JUST FURIOUS!!! PLEASE HELP ME PRAY THAT THE LORD CHANGE HER! MAKE ME MORE BOLD WHEN I GO IN TO SEE THE DOCTOR IN TWO WEEKS!! GIVE STEVE THE BOLDNESS TO SPEAK UP FOR OUR BABY BOY!!! AND THAT GOD ALL MIGHTY MAKE THIS WOMAN SEE THE VALUE OF LIFE!!! MY BABY boy is just so beautiful he is so precious! we just got our 4D ultrasound and DVD (will add picture tomorrow)yesturday his heart is perfectly strong all his organs are functioning. HE LOOKS LIKE HE IS SLEEPING!!! IT IS HARD enough to know that God's will for my sons life may not be for him to be here with me but rather that the Our Sovereign Lord may desire for Elijah's life to begin in Heaven. NOW WHO Does this woman think she is to make these types of desicions for me?! and based on what!?!?! that my sons "malformed" (in her words) head makes him worthless to her!!! I am sorry lady but my GOD says that HE (GOD) formd him (ELijah)that HE made all the delicate parts of his body...Psalms 139:13-17 Then why does she think she can possibly be so careless with my sons life!?!?!?!!!???! THE WORD OF GOD PROMISES ME & ELIJAH THAT NO WEAPON FORMED AGAINST ME SHALL PROSPER!!!! AND I INTEND TO STAND ON THAT PROMISE!!! GOD ALMIGHTY HELP ME AND MAY ALL THE PEOPLE OF GOD WHO PRAY PLEASE LIFT THIS SITUATION UP TO THE THRONE OF GOD!!! I am more than glad to accept the perfect will of MY LORD AND SAVIOR!!! BUT TO LET THIS WOMAN TAKE MY SONS LIFE FOR GRANTED I THINK NOT!!!! PLEASE WE NEED SO MUCH PRAYER PLEASE PASS THIS BLOGSITE TO ALL WHO WILL PRAY!!!!!!!

  7. Susie,
    Could you please verify Elijah's blog address? I can't seem to get to it, I would love to support her and offer prayers. Thanks