tag:blogger.com,1999:blog-7668050648919046122.post4999477600162507735..comments2023-10-20T07:13:22.206-04:00Comments on Waiting for Happy: Confusion and Delayboltefamilyhttp://www.blogger.com/profile/09178547489939649432noreply@blogger.comBlogger21125tag:blogger.com,1999:blog-7668050648919046122.post-28306326806300049842009-09-10T14:49:45.235-04:002009-09-10T14:49:45.235-04:00This little boy had EB as well.
http://patriceandm...This little boy had EB as well.<br />http://patriceandmattwilliams.blogspot.com/Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7668050648919046122.post-44462385710257451632009-08-21T13:43:18.186-04:002009-08-21T13:43:18.186-04:00I think it takes a person who has "been there...I think it takes a person who has "been there" with a medically challenged child to understand. To many on the outside it looks simple... if you just believe "enough" then your child is healed but so many don't understand that the miracle is not always IN the healing. So many times the miracle is in the JOURNEY and too often we miss that while setting our sights too narrowly on looking for the miracle elsewhere. <br /><br />Keep setting your sights on HIM and you will never go wrong. I think of you and pray for your family often. Hugs from KY...Amber Schmidthttps://www.blogger.com/profile/14255596603226871737noreply@blogger.comtag:blogger.com,1999:blog-7668050648919046122.post-33121572151008333522009-08-13T12:34:25.374-04:002009-08-13T12:34:25.374-04:00Praying for you. While I've never had your ex...Praying for you. While I've never had your experience, I also struggle with all that you talked about. Thanks for being so open and honest!Stephaniehttps://www.blogger.com/profile/14870775035447570118noreply@blogger.comtag:blogger.com,1999:blog-7668050648919046122.post-29170926121043131322009-08-13T09:15:17.247-04:002009-08-13T09:15:17.247-04:001. I would love to see a picture of your fridge. ...1. I would love to see a picture of your fridge. So I can get ideas for mine!!<br /><br />2. I've not followed your blog for long so here's an EB question for you: if Hope's not showing symptoms, how did they even know to test her for it? I'm assuming it's a blood test?<br /><br />3. Here's praying your heart rests easier today.kim_broughhttps://www.blogger.com/profile/15266273034368298545noreply@blogger.comtag:blogger.com,1999:blog-7668050648919046122.post-16225251233498421502009-08-12T16:56:21.106-04:002009-08-12T16:56:21.106-04:00Kristy,
I'm sorry for the fear. I'm sorry...Kristy,<br /><br />I'm sorry for the fear. I'm sorry for that little light blinking EB, EB, EB in the back of your mind. It sounds like, from the tone of your post, you are able to see His hand over Hope & find thankfulness amidst the Diagnosis, as another commenter put it.<br /><br />I understand the reading, researching, and re-reading, especially once our daughter was diagnosed with Trisomy 18. I did also realize though that I was putting my trust and buoyed hope in the research and the statistics instead of the One who created her.<br /><br />Praying for you today.Rebeccahttps://www.blogger.com/profile/09394453146621467115noreply@blogger.comtag:blogger.com,1999:blog-7668050648919046122.post-91425040603090998642009-08-12T09:02:58.958-04:002009-08-12T09:02:58.958-04:00Kristy,
You are a very beautiful person, and mothe...Kristy,<br />You are a very beautiful person, and mother. Please know you are loved and I'm praying for you and your precious family.<br /><br />Love ya, DeniseAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-7668050648919046122.post-49412676822746166362009-08-12T08:57:58.676-04:002009-08-12T08:57:58.676-04:00I wish I were more organized!! I always have to s...I wish I were more organized!! I always have to sort through stacks to find what I'm looking for... sigh. I did want to say though that I understand your views on healing. I do believe that God can and does provide miraculous healing but after a loss it's so hard knowing how God will choose to work (and you're right- death is the ultimate healing... just not as we'd hope in this lifetime). <br />Peace & love to you!Rhttps://www.blogger.com/profile/04286068404893748428noreply@blogger.comtag:blogger.com,1999:blog-7668050648919046122.post-43452706011542382672009-08-12T08:06:24.551-04:002009-08-12T08:06:24.551-04:00ok Kristy,
first: I need to see a picture of your...ok Kristy, <br />first: I need to see a picture of your fridge! You are *my* hero!!!<br /><br />Second: I know what you mean...always thinking is it regular baby-crying or something else? Hugs to you!!!! 7I am still there...<br /><br />Peace to you!!Melaniehttps://www.blogger.com/profile/03864060563315231039noreply@blogger.comtag:blogger.com,1999:blog-7668050648919046122.post-30027258982802454462009-08-11T23:51:51.976-04:002009-08-11T23:51:51.976-04:00Jen in OH, if you read this, one of my dearest fri...Jen in OH, if you read this, one of my dearest friends has a 10-yo daughter with PWS (and juvenile diabetes---now THERE's a combination!) She is a wealth of information and support. Let me know if you would like to be put in touch with her.Mountainmomhttps://www.blogger.com/profile/13778209579104416349noreply@blogger.comtag:blogger.com,1999:blog-7668050648919046122.post-49069443056277459162009-08-11T23:24:54.386-04:002009-08-11T23:24:54.386-04:00It's interesting, I know another woman, Camill...It's interesting, I know another woman, Camilla, who is a perfectionist to the point she once told me "Ever seen the movie Sleeping With The Enemy? That movie is about me." Everything had to be perfect, the cups all facing the right way and there better not be a pencil on the floor... then Camilla got a daughter with cystic fibrosis. I think sometimes God tries to teach you something through a special needs child by sending them to people who try too hard to control everything. I loved the post where you said your kids play harder and be who they are because of Isaac and Asher.<br /><br />Hope is not the perfect child you dreamed of...but she is a perfect child, like you said she's no mistake. And no I'm not a fan of that idea of "don't talk about it, then she will be healed." It doesn't work like that, and who knows what great things Hope might achieve as an EB child.Marienoreply@blogger.comtag:blogger.com,1999:blog-7668050648919046122.post-21938841645316474802009-08-11T23:23:35.256-04:002009-08-11T23:23:35.256-04:00Praying for you tonight! ((HUG))Praying for you tonight! ((HUG))Sharihttps://www.blogger.com/profile/04554314908015066118noreply@blogger.comtag:blogger.com,1999:blog-7668050648919046122.post-20832450052549840632009-08-11T23:22:09.114-04:002009-08-11T23:22:09.114-04:00I have read your blog for months but have never co...I have read your blog for months but have never commented. I can certainly understand your thoughts that you so beautifully expressed. I also often struggle with worry. Recently, I have been strengthened by thoughts from 2 Bible studies and some associated verses. From Beth Moore's study, "Esther", the comments that "trusting God is hard, but living in constant fear is harder" and "when I am in a tight grip of fear I need to remember that God's grip on me is stronger." Isaiah 49:16 "See, I have engraved you on the palms of my hands; your walls are ever before me." From the study "Me, Myself, and Lies" by Jennifer Rothschild, she points out that worry is focusing on "what if" rather than "what is."<br />Satan wants us to be consumed with the what ifs rather than the truth of what is- God's Word, His works, and His wonders. Finally, a verse that I recently commited to memory and find myself quoting OFTEN is Psalm 94:19 (NIV) "When anxiety was great within me, your consolation brought joy to my soul." I don't know if any of these thoughts will bring you any peace, but I wanted to share them. May God bless you with His joy, peace, and hope. Romans 15:13Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7668050648919046122.post-22399353523313679162009-08-11T22:49:37.927-04:002009-08-11T22:49:37.927-04:00Oh, Kristy, I have soooo been where you are. Ther...Oh, Kristy, I have soooo been where you are. There are so very many unknowns that are inherent in having children....they are so unpredictable in the first place, and then throw in a "Diagnosis" (I capitalize that, and put it in quotes, because of the weight that word has in my family's life), and you begin to question EVERYTHING. Is my child behaving this way or that way because it's just their personality, or is it The Diagnosis?? Am I doing the right thing for my child, or do I need to be doing more? Are they crying because there is something seriously wrong, and I need go battle/educate the ER staff so that THEY take this seriously...or is Sophie just crying because she's tired?<br /><br />Oh, yes....The Diagnosis seems to color everything. For us it is not EB but another acronym, PWS, which stands for Prader-Willi Syndrome. For us the enemy is not skin fragility but another basic aspect of human life - food. I have come (after five years) to a place where I have accepted that God planned every cell of Sophie's body, and that PWS is as much a part of who she is as her hair or her beautiful eyes or her belly laugh. At the same time, The Diagnosis has thrown us into a place where we can have NO assumptions about how Sophie's future will look, and that is a difficult place to be. It is not at all what we planned for...it's been made obvious that God had other plans for us.<br /><br />So anyway, just wanted to let you know that your "unsettled" feeling is normal. You've been down other difficult roads with Isaac and Asher, but this particular road with Hope is a whole new deck of cards. We had no idea Sophie had PWS before she was born...you had no idea that Hope had EB before she was born...so as parents we are thrown into the position of having to simultaneously learn everything about, AND adjust to, a condition we previously knew nothing about. It is definitely not a "comfortable" place to be.<br /><br />I have checked in on your blog every day for, I think, about a year-and-a-half. Your kids are gorgeous. I am still praying for, and thinking often of, your family. I also would be VERY EXCITED to visit The Container Store...I don't even go to the website that much because I'd be tempted to spend a lot of money!<br /><br />Praying for you, hang in there,<br />Jen in OH.Jenhttps://www.blogger.com/profile/03248558534110187110noreply@blogger.comtag:blogger.com,1999:blog-7668050648919046122.post-82596480065679431292009-08-11T22:42:41.434-04:002009-08-11T22:42:41.434-04:00*hugs* You have a lot on your plate and you have s...*hugs* You have a lot on your plate and you have such a wonderful, strong, positive outlook. I don't know that I could carry the load that you do, and I truly admire you. I will keep you and your little ones in my prayers.Jenniferhttps://www.blogger.com/profile/06068256403340232613noreply@blogger.comtag:blogger.com,1999:blog-7668050648919046122.post-46529208118862833362009-08-11T22:06:19.071-04:002009-08-11T22:06:19.071-04:00Praying for your sweet heart tonight!!! ~MichellePraying for your sweet heart tonight!!! ~MichelleMichellehttps://www.blogger.com/profile/09066492943723194153noreply@blogger.comtag:blogger.com,1999:blog-7668050648919046122.post-79153638136272742552009-08-11T19:58:14.734-04:002009-08-11T19:58:14.734-04:00I'm praying for you right now. It's hard ...I'm praying for you right now. It's hard not to be anxious about our children, and with all you've been through, so much more would be the case for you. I pray that God brings peace where there is anxiety and that He whispers His hushing in your ear...that His voice would be your calmer. You are right...she's perfectly knit together. She is a beautiful girl!<br />Heather<br />SCHeatherhttps://www.blogger.com/profile/13464851421397863762noreply@blogger.comtag:blogger.com,1999:blog-7668050648919046122.post-17209077467278265602009-08-11T19:08:43.367-04:002009-08-11T19:08:43.367-04:00Beautifully written. I just love your perspective....Beautifully written. I just love your perspective. I'm getting there -- it's a lot of work!<br /><br />Hugs for all that you have endured and yet still shine brightly for Jesus! I hope to be able to do the same someday.<br /><br />Love,<br />TrishaTrisha Larsonhttps://www.blogger.com/profile/02426915708825675793noreply@blogger.comtag:blogger.com,1999:blog-7668050648919046122.post-69047875863755029332009-08-11T18:35:01.333-04:002009-08-11T18:35:01.333-04:00Ok, first off: on a purely humorous note, I seriou...Ok, first off: on a purely humorous note, I seriously wondered if you had come to my house, opened my fridge, and then wrote about it on your blog. Right down to the condiments, and the yogurt on the second shelf! *heehee*<br /><br />No, I am not a perfectionist...no, I am not a perfectionist...<br /><br />Secondly, I want to thank you again for being so open about your struggles with fear and confusion. I struggle with that too, with our newest peanut, and sometimes I think that many Christians look down on me for that, as if I am not trusting God enough when I am open about my fear. I know the truth, I know that God is in control, but as you said, sometimes that fear just creeps in. You make me feel normal Kristy. Hang in there, there are hundreds, including myself, who are praying for you and Hope daily!Devinhttps://www.blogger.com/profile/00536576059551978920noreply@blogger.comtag:blogger.com,1999:blog-7668050648919046122.post-21788799590881825412009-08-11T18:28:31.526-04:002009-08-11T18:28:31.526-04:00God bless your heart.God bless your heart.trenniahttps://www.blogger.com/profile/06208738689962789823noreply@blogger.comtag:blogger.com,1999:blog-7668050648919046122.post-9466969910621187982009-08-11T18:22:26.985-04:002009-08-11T18:22:26.985-04:00OK, shoot...that previous comment was from me, but...OK, shoot...that previous comment was from me, but I was logged in from my wrong account. Sorry!Cindyhttps://www.blogger.com/profile/02214894063070820690noreply@blogger.comtag:blogger.com,1999:blog-7668050648919046122.post-3088778776425498052009-08-11T18:20:18.129-04:002009-08-11T18:20:18.129-04:00This is my first comment here. I was directed to y...This is my first comment here. I was directed to your blog around the time of Hope's birth, but unfortunately now I can remember by whom! (It was another blog, and they were asking folks to pray for your family as you were getting Hope's testing and diagnosis, etc.)<br /><br />Anyway! Hi. I don't have a child with EB, but I just wanted to thank you for writing this post. So much of what you shared resonated with me. I too am a reader, a researcher, a planner...and when things don't go according to MY plan, I experience confusion and delay. <br /><br />Reading your post really had me smiling and nodding. Kind of an a-ha! moment. So, thank you.<br /><br />I keep your sweet family in my prayers.Cindyhttps://www.blogger.com/profile/02817277697971424163noreply@blogger.com