tag:blogger.com,1999:blog-8191367444095035928.post5448481071421144113..comments2023-10-07T07:56:14.379-04:00Comments on Before The Morning: a whole lotta STUFFPatricehttp://www.blogger.com/profile/06865294910862077812noreply@blogger.comBlogger20125tag:blogger.com,1999:blog-8191367444095035928.post-56225627476904855482010-05-22T21:56:53.103-04:002010-05-22T21:56:53.103-04:00Wow...just, wow. Two hours' worth of bandagin...Wow...just, wow. Two hours' worth of bandaging every evening is hard to imagine. I know it's become almost second nature to you guys, but still...it's so easy to see why you're just overwhelmed sometimes. Thanks for sharing your story with all of us. You are a real inspiration!!Deannahttps://www.blogger.com/profile/11371310465607810535noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-67817693929570798012010-05-21T16:29:45.663-04:002010-05-21T16:29:45.663-04:00I am at a loss for words. Jonah is truly a miracle...I am at a loss for words. Jonah is truly a miracle! The love and care you give him is amazing. You make me want to be a better mother, Patrice. Your example, your words...I am so inspired by you. And Jonah is just too cute for words!Nenehttps://www.blogger.com/profile/10819034408996144488noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-66991038004229666772010-05-20T01:59:41.186-04:002010-05-20T01:59:41.186-04:00Your such a good momma. God knew exactly what he w...Your such a good momma. God knew exactly what he was doing when he gave Jonah to you and Matt. Your personality is awesome nad I love reading your blog.<br /><br />Your Friend (That you never met,<br />Stephnie in CA.Sincerely, Stephniehttps://www.blogger.com/profile/12941832462543163908noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-37095592371817916762010-05-19T22:26:57.261-04:002010-05-19T22:26:57.261-04:00Holy Crap. I thought you were a fantastically amaz...Holy Crap. I thought you were a fantastically amazing Mama before this , but now there is no doubt in my mind!<br /><br />God knew what he was doing when he gave you such a special baby, its is amazing to see how well you take care of him and ALL his needs. While I'd like tot hink that I could do it, I know I there is NO WAY I could be as organized, thoughtful, and amazing as you! You are such an inspiration!Katiehttps://www.blogger.com/profile/11598644751818798138noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-9628708396586146762010-05-19T21:33:30.581-04:002010-05-19T21:33:30.581-04:00Amazing! Both the whole dressing change and the gr...Amazing! Both the whole dressing change and the growing a whole year thing! He is amazing and his parents are as well! BUT!!!!! I just GOTTA hear the story about the table and going 70mph! I think I might have some similiar stories to share with you! Jennifer of Southeast, NCJenniferhttps://www.blogger.com/profile/16629963999337344921noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-45485351326947558392010-05-19T21:29:22.298-04:002010-05-19T21:29:22.298-04:00Awesome post, thankyou for that.
Wanted to say th...Awesome post, thankyou for that.<br /><br />Wanted to say though - just in case that miracle takes its sweet time in coming - that when Jonah is a big guy of 15, he should/could be working through dressing change with an aide, if at all possible. It's hard to say where the cut-off point is but when a young person might or will need support from others into adulthood, they need to start learning about working with and giving direction to an aide, and not just have mum and dad take care of everything. It's a critically important skill for adult life that we (by which I mean people with ongoing additional support needs) need to have developed along with everything else that happens as part of growing up. You know. Just in case that miracle gets held up <i>en route</i>.Rhttps://www.blogger.com/profile/15436653419185638854noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-29749977489336915942010-05-19T19:20:14.659-04:002010-05-19T19:20:14.659-04:00What an eye-opening post. EB parents are amazing ...What an eye-opening post. EB parents are amazing and you are such a strong advocate for all of them. Many prayers for you and Jonah, who I must say gets cuter everyday! Who knew it was possible! : )Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-91373713313186982782010-05-19T13:39:23.574-04:002010-05-19T13:39:23.574-04:00That is AMAZING. Even more amazing is how God has...That is AMAZING. Even more amazing is how God has protected Jonah - he looks wonderful these days! <br /><br />That table is something else - genius, I tell you!<br /><br />Thanks again for the reminder that EB is not just a "random blister" thing, and for all that EB patients and their caregivers go through daily. <br /><br />Hope the rest of your week is great!<br /><br />Love,<br />LauraLaura Ahttps://www.blogger.com/profile/06701139472899714172noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-76582623111822247332010-05-19T12:23:30.965-04:002010-05-19T12:23:30.965-04:00WOW I just went back & read the post you did ...WOW I just went back & read the post you did 4/09--Jonah has definitely grown. God has answered so many many of our prayers. Just makes me know that I am right in believing God is going to heal Jonah.<br /><br />Jonah is so amazing, he just captures your heart with his smiles & those eyes. God has a wonderful plan in line for Jonah--he is has been having an impact on people since he was born.<br /><br />I hate that I did not get to see your basement nor Gabe's garden when I stopped by--I must put that on my list for my next visit. I was too caught up in spending time with you & Jonah.<br /><br />I truly love each of you. God blesses me so much through your lives that you share with all of us.<br /><br />Hope you are having a great day & I hope the sun is shining..real dreary her in CH.<br /><br />Love & prayers as alwaysWanda Wilkinsonhttps://www.blogger.com/profile/13906339828027614897noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-61641889600035593452010-05-19T12:05:32.190-04:002010-05-19T12:05:32.190-04:00Wow! There is so much involved! Jonah is one lucky...Wow! There is so much involved! Jonah is one lucky little guy to have you for his mama!!! He is just adorable!<br /><br />Love it that your reflection is in the wall mirror!!!<br /><br />Thank you for sharing!Janishttps://www.blogger.com/profile/08808274712379177944noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-41037919878883413772010-05-19T11:02:25.607-04:002010-05-19T11:02:25.607-04:00Patrice,
you are an amazing strong woman.
May God...Patrice, <br />you are an amazing strong woman.<br />May Gods' love continue to surround you and the Blessed Mother embrace you and give you continued strength.<br />Sometimes I find the "normal" mom stuff overwhelming, and here you are, giving so much to your family and blessing them everyday.<br />You are simply amazing!<br />Thanks for sharing!Sunflowerhttps://www.blogger.com/profile/01156921508215605706noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-22268693202072904232010-05-19T10:50:55.640-04:002010-05-19T10:50:55.640-04:00It is astounding to me how organized you are. Wel...It is astounding to me how organized you are. Well, I suppose you have to be! Without a doubt, God hooked Jonah up with the best parents ever.A pair and a sparehttps://www.blogger.com/profile/02564480924438954722noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-39591623340633869332010-05-19T10:20:50.547-04:002010-05-19T10:20:50.547-04:00OMW - and I'm sure that even with your detaile...OMW - and I'm sure that even with your detailed post I cannot begin to grasp the amount of work dressing change and bath requires! You guys rock - you are such awesome parents and Jonut is such an awesome kid!<br /><br />ps - Never again will I complain about bath time or packing for travel with my 2 kids :-)Anihttps://www.blogger.com/profile/09513687544829152823noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-54066077488530048682010-05-19T09:14:54.868-04:002010-05-19T09:14:54.868-04:00Whoa...You continue to amaze me and it just goes t...Whoa...You continue to amaze me and it just goes to show what astounding parents you are. Sweet Jonut is so lucky to have you taking such good care of him and what a blessing for insurance, my gosh...makes me sad to think others are going through this same thing as you without assistance, I just cannot imagine. Thanks for showing us into your side of the world and making us each take a step back and be grateful for all we have. Always thinking of and praying for you!Toni :O)https://www.blogger.com/profile/01652753669110100387noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-16708183133066751322010-05-19T08:50:18.407-04:002010-05-19T08:50:18.407-04:00I never, ever thought about what a production just...I never, ever thought about what a production just bathing would be! You are both amazing committed parents!The Oxford Familyhttps://www.blogger.com/profile/01914571776206286063noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-3190979981455539592010-05-19T08:17:42.666-04:002010-05-19T08:17:42.666-04:00Oh, how I love to hear you talk about Jonah's ...Oh, how I love to hear you talk about Jonah's future. It seems there was a time we wondered if he would have a future and look at you guys!!! Jonah's life is oh so much better because of you. God had a plan, and he needed you and Matt to acomplish it for Jonah. <br /><br />Keep up the incredible work - I know you go through so much so Jonah's life can be oh so much better!<br /><br />I'm excited to see him start to crawl - <br /><br />God has brought all of you so far!Kim Mhttps://www.blogger.com/profile/08352489657428563463noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-21315454509719121302010-05-19T00:36:03.923-04:002010-05-19T00:36:03.923-04:00Although I don't like the fact that you have t...Although I don't like the fact that you have to do this for Jonah everyday, I really liked this post! You go through so much on a daily basis... and it was good to see exactly HOW much! Thank you for the 'tour'!Our life is a bowl of Barry'shttps://www.blogger.com/profile/16537222594022517726noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-76402591672578026362010-05-19T00:00:23.463-04:002010-05-19T00:00:23.463-04:00Wowow, Patrice. That really is a WHOLE LOTTA stuf...Wowow, Patrice. That really is a WHOLE LOTTA stuff. Thank you for sharing your life, Jonahs life... your whole family. I think I want to adopt you all.Just Dianehttps://www.blogger.com/profile/08113624845197503655noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-35614273837808473032010-05-18T23:51:22.062-04:002010-05-18T23:51:22.062-04:00wow, you are even more amazing then i originally t...wow, you are even more amazing then i originally thought! <br /><br />i'm a babyloss mama myself and some days just the "normal" stuff gets overwhelming...i honestly cant imagine how you must feel some days. so glad though that you have that sweet boy smiling back at you!<br /><br />EB parents/kids are amazing! <br /><br />thank you for sharing!Devonhttps://www.blogger.com/profile/08741058376833464074noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-15440067097462985422010-05-18T23:31:10.803-04:002010-05-18T23:31:10.803-04:00Wow! I work with patients who have trachs, but I h...Wow! I work with patients who have trachs, but I had no idea there was so much involved!Jules AFhttps://www.blogger.com/profile/05380372212489758689noreply@blogger.com