Thursday, March 6, 2008

Because I have more to say

And more pictures - let's not get stupid, right?

Oceana kissing Joshua's feet

Oceana and Miles playing. They learned "share" this week. The word. Not the action - what are you crazy?

Oceana asking for Uh-peez! (Pick me UP PLEASE).

Joshua and Mommy having a cuddle this morning.

Joshua's cele is getting worse. I don't know how else to say it. I wish I didn't have the "hang the crepe paper" - or warn you a bit. But his cele is dangerously full and stretched. And I don't know what to think. We had some tears this morning with our nurse and our friend Bryce & Christina. That's right, even our nurse cried. It wasn't anything in particular, except that we could see it was getting worse - and worse means demise for Joshua, eventually. Every week or two we have a reminder of how serious and ghastly Joshua's situation is - and we fall apart for a few minutes. It's scary to have him here and know that we might not have him next week. We might - but we might. And it's hard to wait for something that doesn't have a date on the calendar.

I found this quote on Sarah Funk's site just now, and I think it sums up what we've been trying to do for Joshua. I plan to get in a lot more cuddles, hugs, and kisses. I don't ever want to regret NOT holding him more.

"And in the end, it's not the years in your life that count. It's the life in your years." - Abraham Lincoln
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  1. Hey Matt, Susie, and you gorgeous kids. I love the photo of Oceana kissing Joshua's feet - that is just oh too cute.
    I am gutted to hear that Joshua's cele is getting worse, of course we will pray for you all.
    I hope your cleaning, packing and house hunting are going well,
    Love to you all,
    From Rae.

  2. Thinking of you.

  3. I have been an avid reader of your blog but have never left a comment since words just seem to evade the emotions. I still don't know what to say other than I AM PRAYING!!

    I constantly have you and your family on my heart. We have recently buried our baby back at the very end of May 2007 and I can relate a "wee" bit to what you are going through although our situation was different and I never held my baby(ies) alive (We've lost 2 like this).

    I admire your precious story and continued love that you shine through your blog.

    PRAYING!! ~Tamara

  4. What a great shot of him. He has such handsome features. **hugs**

  5. Susie,

    We love you and your family. We'll be praying.



  6. Get all the cuddles and kisses that you possibly can. Even when you have 21 years until they leave you, it is not enough. I enjoyed my babies to the fullest and so should you. God bless you Joshua!

  7. My thoughts and prayers are with you, Joshua and your family. I check your blog daily. I am sad to hear that his Cele is getting worse. God will give you the perfect amount of time with him. Just like all of us, God has a date of when he will call each of us home. We have to treasure all our loved ones because life is so fragile. Joshua's fragility is just more clear than most of ours. Your attitude about being thankful for each day is inspiring to me. Your family and Joshua is being served well by your loving attitude and spirit for your family! I will keep you in my prayers!

    Jennifer Bray, SPokane, WA, USA

  8. Wow! He looks just like his mommy! Handsome fellow.

  9. Susie,
    I've been lurking since just after Joshua was born. Your spirit shines through in your writing. I just wanted you to know I am praying for your family.
    Karen from TN

  10. Joshua is in our prayers and I do check the site several times daily but even tho I don't write, I am praying for this precious Angel.
    Cathy & Annabel

  11. I'm Elijah's mom:
    I hope I will be as blessed with the precious gift of time with my Elijah when he arrives! My prayer for YOU, MATT & OCEANA IS: That the peace of GOD, which surpasses all understanding will guard your heart and minds through Christ Jesus. And finally that whatever things are true, whatever things are honest whatever things are just whatever things are pure, whatever things are lovely, whatever things are of good report if there be any virtue and if there be any praise think on these things Phillipians 4:7,8
    I pray that these word be illuminated to YOU ALL as they have been to me through prayer!!!
    All our love The Douglas Family

  12. I love that quote and, as a mother who held her girl inside for 35 weeks weeks and in her arms for 5 days, I can tell you it's true. God is good. His timing is perfect. And you are a blessing to behold as you cherish every moment you are given with this miracle boy.

  13. Still reading and still praying for everyone. I was very saddened to hear that his cele is getting bigger. Enjoy him every moment you can. You have been given such a wonderful gift and you are giving others a gift by being so honest and so incredibly strong throughout all of this. Bless you all a million times over.

  14. Hi Susie,
    From a mother in Australia who stumbled across your blog I just wanted to wish you all the best in revelling in Joshua's life as it is now.
    I was so touched by your post tonight and shed a few tears for your family, which is most unlike me.
    I know how tenuous life is for special babies. I can see how you treasure your son.
    I wish you a wonderful future, full of memories of Joshua and happy times.
    I loved the quote. It is similar to the one
    "Life is not measured by the number of breaths you take, but by the moments that take your breath away". May you have many of those moments with Joshua.

  15. I am praying for you and your family. You all certainly have a lot on your plate right now with so many changes taking place so quickly.
    The little man looks like he has grown and changed...he is so handsome! Your daughter is precious, too!
    Have a blessed day!

  16. Susie,
    I came across your blog several weeks ago and have been reading ever since. The picture of Ocean kissing Joshua's feet is so incredibly cute. I am sorry to hear that Joshua's cele is getting worse. I will be praying for you all, for peace, and for lots of hugs and cuddles and kisses. God Bless you!

  17. I've been following your story for a few weeks now. I have really been praying a lot for you guys.


  18. You are such a wonderful mother I wish there wasn't something I could do to help you

  19. Give Joshua a hug from me...

    I'm praying for you all. For peace and joy.

    Love the picture of Oceana kissing Joshua's feet! She loves her bother!

    I laughed at the sharing thing... Low expectations. I love it!


  20. My heart sank this morning as I was reading your latest post. I have been reading every day since he was born and I guess I always just hoped that he would continue to do well and even "get better". I cannot imagine what you are going through. You ARE a very strong woman Susie and I continue to pray for all of you. I wish they could go in and drain some fluid so it does not continue to put pressure on his brain.

  21. I'm not even sure how I came across your blog, but I've been "lurking" for awhile now, and thought I'd "de-lurk."

    You show amazing strength through this blog, and I'm sure that there are times that you are going to break down - and that's o.k. You are doing everything you can for him right now, and that in itself is awesome!

    I'll be back often! And I'm praying often too! God Bless You!

  22. Susie,

    I have been reading your blog since before Joshua was born (about the time I lost my 4th child to miscarriage), and have been praying for you and your family since then, but have never commented before. There have been many times that I wanted to....but I just haven't.

    Today was different--today, I felt I had to.

    I know you are facing uncertain waters, and I just wanted you to know that there are many, many people (just like me who I am sure have never even told you) that are praying for you and sweet Joshua. God has ordained each of his days, and whatever number He has chosen for him is absolutely the PERFECT number. I will continue to pray that there will be many more days for you to cuddle, hug, kiss, and love on him all the more.

    Thank you for sharing your and Joshua's story with us--I am so thrilled to be a small part of his life by praying for him each day.

    Devin in Illinois (USA)

  23. I visit here every day to check on this precious little boy and see how you are doing. I pray for all of you and ask God to hold your family in His hands and close to His heart. You guys really minister to my heart. I am praying for Joshua extra today and in the days ahead. May Gods peace be all over you and in you.

    Love, Laurie in Ca.

  24. I have been reading since Joshua was a week old I believe and never leave comments but I just had a question- is it possible that Joshuas cele is growing because just as any other child born- his brain is growing and developing- explaining the size increase in his cele just as a newborns head circumference would grow? Also will the membranes grow with the cele or does his growing cele put him at risk for them rupturing? As always- I will pray for Joshua- God has already given you such a miracle in the last 2 months of his life - I pray he has more miracles in store for you :-)
    Elisha - canada

  25. Just wanted to let you know that I am praying for you. May God grant you peace to enjoy each day that you are blessed to hold Joshua in your arms.
    Rachel in PA

  26. Another frequent reader here, from western VA. Thinking of your family in these days of uncertainty. You are loving your kids so well, and have so many darling pictures of them. I see on your list of "favorites" that you are already reading blogs of some amazing women who have walked this road either alongside or just ahead of you. May the Lord give you the strength to face each new day, the ability to find joy in each moment, and a peace that allows you to rest in Him.
    Lori C.

  27. I'm amazed at how many people from around the world are touched by your blog, by Joshua's life. No matter how long he's on earth, he's already made an impact.

    We're praying for you as well.

  28. I wish I were eloquent. I hope you know how many people around the world that your family has touched. Keep doing exactly what you are doing. You are a terrific mom (and Matt's a great dad!). As a mom who STILL hugs and kisses on her daughters (and they have babies of their own!), kissing and hugging and nuzzling and just staring at them never gets old. God Bless all of you.

    P.S. I LOVE the toe kissing pic!
    Jan from Texas

  29. I never realized how much your story affected me until I read this - and shed a few tears, too. I hope it gets better, but if it doesn't, I pray you can feel some peace that you loved him all that you should when he leaves. I have no doubt that you have. He's beautiful!

  30. Susie,
    I've been reading your blog daily (sometimes twice a day!) since Joshua was born. I pray for you and Joshua often. Reading your blog today brought me to tears. I enjoy reading everyday and seeing how well Joshua is doing. Reading that his cele is getting worse just breaks my heart. I pray that Joshua has mcuh more time with you and your family. He is absolutely precious and such a miracle. I also pray for your continued strength and courage. You are a wonderful mother. You have been dealt things that no one could possibly imagine. God bless you for being so amazing.
    I love the picture of Oceana kissing Joshua's feet. That is absolutely precious.
    He looks so much like you, it's crazy. He is such a handsome little man.
    Love and prayers from Ohio and a fellow January 08 babyfit member.

  31. The kissing of the feet is absolutely beautiful!
    I like so many others have no profound words for you. Your family is raised on a cloud of prayers from around the globe. Whether you have another 2 days or decades of hugs this side of Heaven, Joshua is certainly increasing God's glory.

  32. Hey guys it's part of my daily ritual to read your blog. I love you guys and your little lady and your little man. I'm teaching now, and it inspires me to see a situation where parents love so much - it makes me look at the challenged kids at my school even more affectionately than before.

    Kristin McAuliffe

  33. Just wanted you to know that I've been following your story for a while and I'm thinking of you guys. Happy belated 2 months to Joshua! Your family is amazing and we're shedding tears for him here as well.

    - MAOFMANDY from

  34. What beautiful pictures! I am constantly keeping you all in my prayers.

    Laurie in Minnesota

  35. oh i don't even know what to say, just know that you are in my prayers daily. just as your blog title says: be strong and courageous. Psalm 71 comes to mind.

  36. I absolutely love the pic of Oceana kissing Joshua's feet:) So precious:)

  37. thinking of you guys always


  38. Your babies are beautiful! I especially enjoyed seeing Joshua's beautiful face. God Bless You!