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I had the oppurtunity tell Joshua's entire story (the 30+ minute version) to two groups of people in the last 4 days. It's getting easier to share his story - I think mainly because I've told all of you so many times. It's refreshing that people still want to hear his story. It's refreshing that his legacy lives on. My hope and prayer is that if a family like Verna - Noah's grama, or Steve & Marie - Elijah's parents should google, "encephalocele story" or "encephalocele son or daughter" they would be brought here.
When I first discovered Joshua's diagnosis, I desperately wanted to read someone else's story. I was sick of statistics and medical explanations. I need to know what someone else had gone through. I didn't find anything. I found other issues, but not Joshua's.
One of my main reasons for having this site is to put a story out into the world about how to carry through a pregnancy/life/death of a child with an encephalocele. It is so reassuring to have met other people who's sons have had encephaloceles (the count is at three, in person and in blogosphere).
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I went to the SANDS meeting the other night. It's for parents of infant loss - premature birth, stillbirth, birth defects, etc - and it was so refreshing. I was afraid it might be a whole lot of hand holding, tears, and geeky poems (not my style, in case you haven't picked that up yet!). Instead it was 5 grieving momma's, sharing about their children. There were some tears, but for some of us the pain is still very fresh (one mother had lost her son in late July of this year).
I am so glad I went. I will be going back. The meetings are only once a month, but at least they are always on.
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We just got word from the team Havalah's boyfriend Dahvede took to the Solomon Islands. Three of the young girls on the team have contracted malaria (not sure how, since they were on anti-malaria pills). Please keep these girls in your prayers. They come home next week.
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Byebye
I know it's crazy... but you didn't post a few days and you were missed. I am one of those... you know... worriers. Strange that I get attached to people I have never met. Congrats on the PT.
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Susie, You waited until Thursday to update your blog? From Sunday? Not good. MORE BLOGS!
ReplyDeleteThat is so good that you found an "in-person" support group. I know it's nice knowing that all of us in blogland support you; but it has to be much better meeting with and sharing with other mommy's who share your grief.
ReplyDeletePS- so glad to hear about Oceana's dryness... it's so great once you're done with diapers (although for you, it will only be for a few months...) :)
I was missing you so much! Wondering if something was wrong. What a wonderful thing the SANDS group is for you. Gramma is proud of you, Oceana! You're doing great. Some words from author Terri Blackstock whose book "Cape Refuge" I just finished tonite that deeply touched me: "We cannot control God, and we cannot second guess him as much as we'd like to try. Our God has plans and purposes that are far beyond our understanding. Sometimes those plans and purposes break our hearts. Sometimes they require sacrifices we never agreed to make. Sometimes they stop us dead in our tracks, turn us upside down, inside out and paralyze us with pain. But his comfort is not far behind. And as we climb up into his lap and weep into his chest, he whispers in our ear, Shhh, it's okay. I did it for a reason and someday I'll tell you what it is. He strokes our hair and hugs us tight and cries with us. Shhh. Just hang on. It's not that long before you'll see them (Joshua) again. And then you'll be with them for eternity. I promise to see you through this. Our whys are not answered, but we trust that there is a reason. God is in control and he love us through our pain." I have found this to be truth. We're all in this together, you, Matt, your parents and siblings and we are grieving together....with hope! Love you! (sorry so long)
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