Sunday, January 13, 2008

"All his baby glory"

A poster from yesterday or today mentioned the idea of a picture of Joshua without his hat. His encephalocele doesn't bother me - in that it doesn't scare me or gross me out - but I know it looks scary. I know it's sobering to see it. This was my reasoning in not posting his "full" pictures before now. So here's your warning. At the bottom is a picture of Joshua without his hat.

The picture is a bit deceiving, because of the way he's laid down. In actuality, its attached right at the back of his skull - about where a Jewish yalmulca would be - and its only attached by a small area. This photo makes it look like it's attached across his whole skull. If you put your pointer finger and thumb together to form a circle (I'm a 5'6" woman, so keep that in mind for sizing) it's attached by about that much. The cele is bigger than his head, mostly because the skull has grown quite short, so there's 2/3 of his brain in that sack. It's soft and squishy (not that we squish it!) and feels about like a half inflated waterballoon. It doesn't have any bone or cartildge around or in it, so it "flops" which is what scares us.

We are definitely not embarassed by his condition, we're just trying to keep him as safe as possible. As you can probably tell, it's really fragile, especially the membrane. That purple you see is a combination of ultra-stretched skin and blood veins/vessels under the skin that make it that dark purple color. The membranes haven't grown perfectly, so there are funny veins and pulls in some places, but not others. I have wondered if some of it stretched further when he was being born, but there's no way to be sure of that.

Please do not feel obligated to look. If thinking of Joshua as a whole, normal newborn is easier for you - please skip over this post. I tried to find another way to post this, in a separate window, but to no avail. If someone knows how to do this, please email me at mnssams@gmail.com so I can move it into a pop up window. I'd rather not have it as the forefront picture here.


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33 comments:

  1. The picture just magnifies even more how much of a miracle Joshua, his delivery, and his life are. It truly is amazing (and obviously such a God thing) that Joshua not only survived the birth process, but appears to be doing pretty well. Thank you for sharing such personal details with us.

    Nicci
    Bellingham,WA

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  2. You continue to amaze me. I am so happy you have another day to share with your beautiful son. Thank you for the update. We are rooting & praying for you.
    Christina
    (babyfit Oct. 06)

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  3. It is not scary, it is just different!

    I read about that condition, and found that could happened to our children!

    I just hope that it doesn't give him pain.
    And pray that membranes, will grow together, as you mentioned!

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  4. Thank you for sharing. It's amazing the will and strength that your little boy has to use the body he has been given to it's fullest. I guess because I only started reading towards the end of your pregnancy, it seems just a part of who Joshua is and always was if that makes any sense. He is beautiful through and through.

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  5. I am the person who asked about the photo without a hat.

    Thank you for the picture and for explaining a bit more about the details.

    You're right. It is sobering, and I understand why some might not be comfortable seeing it.

    But it helped me to get a "fuller picture," so to speak.

    Thank you for trusting us with the photo.

    I look forward to each update... and love all the pictures.

    He is a miracle, and I know you thank God for every moment with him.

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  6. I have been reading your blogs for a few days now...my heart goes out to you and your family!! You are soooo blessed to have this beautiful baby with you! I will continue to keep you, your family and your precious baby in my prayers! May God bless all of you!!

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  7. Hi Susie, He is beautiful, as is. In reading your postings & thoughts, I can't think of anyone who would be better equipped to care for this sweet boy. Even though I haven't met you, I have so much respect for your character (which I've previously told you are obviously far beyond your years). He is a beautiful baby, and you are obviously an awesome mom!

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  8. Sorry, me again. I have some problem with posting comment.

    I wondered if there is some medical helmet that he can wear so you can take him out? Or it will grow together that he will be save enough?

    Me and my familly, and friends are praying for that!

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  9. I really think and for this reason I have to repeat: You´re the best mom Joshua could have. God bless all of you and your attitude is an example for all of us. For sure God has a propositus and for sure you passed on the "test".

    I simple admire you Susie.

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  10. You can put the picture on Photo Bucket (www.photobucket.com), and then just put the link here, if you'd like.

    It does help, though, for people to have access to his reality. There are so many children with special physical needs and many times people look away, instead of really looking ... looking deeply and seeing every bit of a child - otherwise you miss out on so much!

    I found you through a friend, and now have you on my reader list ... and in my conversations with God.

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  11. Susie, I am from the babyfit site and just wanted to leave a note here as well that I am continuing to pray for you and telling your story to many who are also praying. I am so glad that Joshua is remaining strong!

    Elizabeth

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  12. I agree with the poster who said he is beautiful as is. Thank you for sharing the picture with us and for explaining it in more detail. I hope one day when I'm done with nursing school to work in labor and delivery!

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  13. Thank you for sharing the photo of Joshua with us...it helped for me to see what I was praying for and just confirmed how special he is! It is so awesome how God is working in all of this!!

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  14. Happy Birthday Handsome little man. You have touched so many lives and blessed so many in your short time. May God continue to bless this entire family and give us many more milestones to celebrate and Thank God for. Susie, Thank you for entrusting us with your families story and letting us share in this miracle. Many blessings, Marisa from Alabama

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  15. Thank you for your trust.

    I have found you through a midwife's link.

    I will keep your family in my thoughts.

    Once again thank you for sharing.

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  16. My wife and I have been reading your blog. We saw it on Babyfit. We will keep your family in our prayers. Love the baby pics.

    Dave, Wendy, Alaina and Leo
    Ft. Hood, TX US

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  17. I am a caregiver for a special needs child...while out to dinner with her one night a woman came up to us and said "God blesses us in different ways". And she is right. Your family is so beautiful.

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  18. I lift up my eyes to the hills - where does my help come from? My help omes from the Lord, the Maker of heaven and earth. He will not let your foot slip-he who watches over you will not slumber....
    The Lord will kep you from all harm-he will watch over your life; the Lord will watch over your coming and going both now and forever.
    Psalm 121:4,7-8.

    Matt & Susie thanks for sharing photos and being so real about your feelings. Joshua is so beautiful and precious. Please know that we are praying around the clock for ya'll. We love you and we pray for strenght, peace and comfort for ya'll and that this will bring ya'll stronger in your relationships as well...

    McCree family :)

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  19. The picture is sobering, but as Nicci said, just magnifies how truly miraculous he is. God is so good! When my friend's baby was born with this condition ten years ago, he had to be born via c-section. He lived for three whole months! But he had many more problems than baby Joshua also.
    I know that through prayer and faith Joshua can be all he is destined to be. He is so beautiful, and so perfect.

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  20. Susie, I am also from the BabyFit website and your story was mentioned in the August '08 DDC. I am glad that you posted the picture, I too think Joshua is beautiful as he is. I'm keeping you and your family in my thoughts and prayers and hoping for as much time as God will give you with your son. Sara

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  21. Matt and Susie,
    Just wanted to let you know that the teachers at Mount Calvary have been praying for you and Joshua, I pass along your blog pages to those I know remember Matt. Amanda gave me your blog awhile ago. Thanks for helping Joe with his report also, he looks forward to Matts emails.
    Sherrie Crowell
    PS Matt, Joe is wearing your old #22 basketball uniform

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  22. Dear Susie, Matt, Oceana and Joshua,

    Thanks for sharing all this. Joshua is just beautiful. Your whole family is beautiful... Seeing him helps us to pray more accurately and fervently. Thanks to your Grandma Dorrie we've been following your progress right along and have kept you in prayer.

    I remember you, Susie, from Perform It! when you helped make costumes with us. You made Abbie a beautiful costume! Anyway, please know that many of us from Perform It! are praying for you and are so thankful with you for Joshua's safe arrival and continued growth.

    God is obviously working in your family. Keep trusting and resting in His Love for you. We have a mighty God!

    Many Blessings,

    Stephany, Dale, Chris, Abbie and Julie Cameron

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  23. Susie, I left a comment but I think it got deleted. I said I agreed with the lady who said you should set up some sort of paypal account. I know people will want to donate. It is definitely not selfish it is for Joshua and Oceana!

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  24. Kind thoughts from Mississippi.

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  25. Having walked a path similar to you, I just wanted to comment that, having been on this side many years, I know that I know that I know that I know that God is faithful and He will walk right along with you through all of this. He is worthy of our trust- He has proved it again again in the life and death of our dear daughter. Much prayer from our home to yours

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  26. My thoughts and prayers are with you are your family.

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  27. joshua is a tough lil kid!
    and he is definitely beautiful!

    i love him!

    pray the best for him and your family.

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  28. Thank you for being willing to share this. From reading your story I know that Joshua is blessed to have the love and support of such faithful family. You are all in my prayers. He is truly a beautiful baby, even in all his glory!

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  29. Hi there, I'm a babyfit mommy (april 07) and came across your blog on the boards. Your son is absolutely beautiful and obviously a strong little man! I think about him and your family everyday and continue to pray for all of you.

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  30. Thanks for sharing, I was linked to your site through a friend. I'm a medical student and I'm touched by your blog. You and your family are in my prayers.

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  31. I can't explain it but I am in no way offended by this picture. I was not grossed out at all.

    He was a beautiful baby, he had a life, a spirit and a soul that WILL live forever.

    He was/is a miracle.

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  32. Wendi aka tx_christian on Xanga.ComJune 27, 2008 at 4:57 PM

    I know that this is several months old and I hope that my posting doesn't open old wounds for you. I don't know what I was expecting to see, but the photo wasn't shocking or gross. It wasn't "normal" but, your son is perfect just the way God made him. (((((( hugs )))))))

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