tag:blogger.com,1999:blog-6897689393274111024.post2851915103028572828..comments2023-10-31T11:07:27.803-04:00Comments on Hope's Blog: Most Days I am VERY HappyWodzisz Familyhttp://www.blogger.com/profile/03402962907991995167noreply@blogger.comBlogger13125tag:blogger.com,1999:blog-6897689393274111024.post-66820122476710472832011-01-25T11:13:31.023-05:002011-01-25T11:13:31.023-05:00Paula, I feel the same way. I am sitting with my s...Paula, I feel the same way. I am sitting with my son in his hopsital room, he is on ECMO, and doctors just told us it is getting close to time to take him off life support. I am wondering the same things. So many questions, but the biggest one, is why him? <br /><br />It is hard, and I have good days and bad days. Today is definitley one of the harder days. I don't know what is going to happen, and I feel helpless, all I can do is pray hope and wish for the best. <br /><br />Parker also has kidney problems, he only has 1 kidney, his kidneys didnt separate before he was born. He is also missing a rib and a vertabrate. I pray that everything continues to go well for you and your family, Hope looks like one tough girl. Wish you all the bestStacey Shankshttp://www.caringbridge.org/parkershanksnoreply@blogger.comtag:blogger.com,1999:blog-6897689393274111024.post-29397905925394608242011-01-23T12:04:58.261-05:002011-01-23T12:04:58.261-05:00{{{HUG}}} I think all of us heart mommas have had...{{{HUG}}} I think all of us heart mommas have had ALL of the above thoughts at least a few times along the way. This journey is not easy and some days it feels like we are carrying the weight of the world alone on our shoulders. We allow ourselves to be taken to those deep, dark and desperate places. Why not right? It is OUR child we are talking about and their life is one giant uncertainty. However we have to continue fighting to rid ourselves of that fear even if it means we fight every minute of every day for the rest of our life. Fight!<br /><br />Have faith dear friend. I know it is hard. You have an army of heart mommies right behind you to uplift you and keep pushing you forward if you are "stuck". We'll back you up!!<br /><br />Thinking of you and sending up many prayers for Hope!Stefeniehttps://www.blogger.com/profile/04278714232697499851noreply@blogger.comtag:blogger.com,1999:blog-6897689393274111024.post-36213953212393126812011-01-23T00:25:04.829-05:002011-01-23T00:25:04.829-05:00I understand completely how you feel! I have these...I understand completely how you feel! I have these days often wondering why this happened to Kayden, and right now he hasn't had any surgeries so I know that any day I could go to wake him up and he may not be breathing...We shouldn't have to live like that or fear that our child may die. Just like when it's his time for surgery here soon I have no clue how I'll do it, I guess because I know he's strong enough to fight for his life like he's done for the past 3 years & now it's the toughest fight yet & he's still not giving up! I also understand the part about staying local with your hospital. Kayden's been seen at the University of Virginia which is 2 hours from us, I am comfortable there and I trust those doctors with his life, but they did send his information to Children's Hospital Boston for an opinion and since they think they can do his surgery without a transplant then that is where we are going. The only thing I worry is that one doctor says he's too high risk for the valve repair & one says they can fix it. So that scares me to death!! <br /><br />Hope is strong, she has proven that! She will fight until she can't anymore. She's a miracle just like all of our heart children <3 they are amazing and everyone should learn from them. They never give up & us parents never give up & we will not give up on them. You're a strong woman just always remember that! God tests us to see how strong we really are I believe. I have also questioned lately the 'God doesn't give us more than we can handle' it is true but I have days where I feel like I just can take it anymore!! <br /><br />Hold your head high mama and stay strong for your beautiful family <3Mistyhttps://www.blogger.com/profile/17932820462062387987noreply@blogger.comtag:blogger.com,1999:blog-6897689393274111024.post-23671171261731344352011-01-22T23:32:19.349-05:002011-01-22T23:32:19.349-05:00I just discovered your blog - first of all, thanks...I just discovered your blog - first of all, thanks so much for your transparent, honest words. Although it may seem wrong and "un-Godly" to be angry, trust me - it is completely normal. I'm confident that God values our honesty and brokenness - after all, He already knows our deepest thoughts and fears. Dont stop being honest with Him - you are a brave momma!! What a fitting name for your precious heart baby - HOPE - keep putting your hope in Christ! <br /><br />Much love from a heart daddy, <br />Mike SkiffMike Skiffhttp://mikeskiff.comnoreply@blogger.comtag:blogger.com,1999:blog-6897689393274111024.post-35292053027390066652011-01-22T22:43:43.096-05:002011-01-22T22:43:43.096-05:00I am yet to have my HLHS baby boy and already have...I am yet to have my HLHS baby boy and already have so many of the same thoughts. Mostly Why and When. It makes it hard to see some kids thrive and some struggle and always wonder which one will be mine. I wish you and Hope the best. I think it's good to vent a little and if this is where you want to do it, go ahead. It's your blog... Heart HugsKathy Khttps://www.blogger.com/profile/16352340489358512265noreply@blogger.comtag:blogger.com,1999:blog-6897689393274111024.post-80490453983069797892011-01-22T22:43:02.517-05:002011-01-22T22:43:02.517-05:00I am yet to have my HLHS baby boy and already have...I am yet to have my HLHS baby boy and already have so many of the same thoughts. Mostly Why and When. It makes it hard to see some kids thrive and some struggle and always wonder which one will be mine. I wish you and Hope the best. I think it's good to vent a little and if this is where you want to do it, go ahead. It's your blog... Heart HugsKathy Khttps://www.blogger.com/profile/16352340489358512265noreply@blogger.comtag:blogger.com,1999:blog-6897689393274111024.post-45925955162863109772011-01-22T13:33:45.113-05:002011-01-22T13:33:45.113-05:00I understand completely. Like you and all of the ...I understand completely. Like you and all of the other moms who commented before me, I've had those same exact feelings and questions. <br /><br />Praying for you, and clinging to HOPE! :)Shannonhttps://www.blogger.com/profile/08433943003423526914noreply@blogger.comtag:blogger.com,1999:blog-6897689393274111024.post-37448698458532177052011-01-22T09:23:38.747-05:002011-01-22T09:23:38.747-05:00Oh Paula, the God thing. I know right where you a...Oh Paula, the God thing. I know right where you are at with that. Those questions will never go away and in my case, have only gotten more intense since Gabriel died. There's enough to deal with in the everyday world without adding to it by thinking that I'm being punished by something that humans created to explain why things are the way they are. I have all the documentation that clearly shows why Gabriel died and no where on there did anybody write "because God needed another angel" or "because this was part of God's plan".<br /><br />You're already doing the best thing you can do: "I will cherish my life, my husband, my kids, and everything that goes with that every single day." Keep that up and know that you are not alone in your questioning and struggles. Thank you for sharing yours with us. ♥Lisahttp://bustershouse.wordpress.com/noreply@blogger.comtag:blogger.com,1999:blog-6897689393274111024.post-9292207164567636772011-01-21T22:05:42.350-05:002011-01-21T22:05:42.350-05:00I admire your honesty in this post...all those tho...I admire your honesty in this post...all those thoughts I have also had. Those lingering thoughts that are always there, somedays they are much more prevalent. Know that we are praying for you, your family and for Hope. We trust that God has a plan, and that suffering never goes without purpose. Hugs and blessings =)Tarahttps://www.blogger.com/profile/13202621464167811581noreply@blogger.comtag:blogger.com,1999:blog-6897689393274111024.post-1650940810222692642011-01-21T21:59:53.584-05:002011-01-21T21:59:53.584-05:00I have these days too, but instead I'm the CHD...I have these days too, but instead I'm the CHDer and I ask all these questions. Sometimes I get so scared and fearful especially hearing so much sadness in the CHD world. I usually need to talk it out then do something to get my mind off it and continue living and being so very very grateful and thankful for everything I have including being pretty healthy for a Single Ventricle CHDer.<br />I've asked my parents many times how they felt or still feel. I don't think the tell me everything still of what they felt or still feel. I know they did say not knowing other CHD parents and CHD kids did help, though they would have loved to have people that understood they didn't see all the kids passing away. All they had to was news (good or bad) that they received from the doctors about my prognosis. They said it wasn't easy to keep positive, but easier than if they had known the real reality of seeing so many pass away and back in the 80's is was alot higher than today. My mom remembers a little girl, perfectly healthy pass away from the flu, she said it put things into perspective that no one is promised tomorrow especially us, but no one CHD or no CHD.<br />Take breaks, I do that. I also remind myself of all the CHDers older than me, LIVING! Older ones message me a lot and say they just live and most don't think about their CHD all the time, easy since most are part of the CHD community and that's probably why most don't become part of it. But I love spreading Hope and talking with parents. :D<br />Think about these statistics (even though I usually don't live by them, b/c know one not even drs know everything): Over 50% of CHDers alive today are Adults! Over 80% of CHDers make it to adulthood (though the Adult Congenital Heart Association say 90%). Technology keeps moving and the odds even just for the Fontan has gone up ALOT!<br />HOPE!<br /><br />With LOTS of Hope, Love, Faith, and Hugs,<br />Lauren (23yr old CHDer with Tricuspid Atresia, HRHS)<br /><br />Blog: www.laurensheart.blogspot.comLaurenhttps://www.blogger.com/profile/16168976317111099445noreply@blogger.comtag:blogger.com,1999:blog-6897689393274111024.post-53662545265416467062011-01-21T21:52:12.070-05:002011-01-21T21:52:12.070-05:00I too have had those exact same thoughts... all of...I too have had those exact same thoughts... all of them. And they are scary and take you to places you don't want to think about. It is so hard to think about sometimes. You just try to enjoy each day and cherish it, and thank God when another day passes and you've made more memories together. That is what we can cling to.<br /><br />Thanks for your prayers and message on our blog! :)<br /><br />JenJenhttps://www.blogger.com/profile/04329606338474164906noreply@blogger.comtag:blogger.com,1999:blog-6897689393274111024.post-79782593220279648482011-01-21T21:22:21.651-05:002011-01-21T21:22:21.651-05:00I have had (still do at times) these same question...I have had (still do at times) these same questions and emotions. Exactly. It's such an amazing/crazy bond that heart mom's share. Just know that you're not alone in your thoughts...hang in there and hold tight to HOPE. Her name so fitting to the belief we should all share. You're a wonderful mother and doing your very best to fight for her. Don't question that. Hang in there and heart hugs-Katiehttps://www.blogger.com/profile/12749308200093222013noreply@blogger.comtag:blogger.com,1999:blog-6897689393274111024.post-42113040555030456522011-01-21T20:56:06.198-05:002011-01-21T20:56:06.198-05:00I KNOW FIRST HAND GOING THRU THIS IS HARD ....BUT ...I KNOW FIRST HAND GOING THRU THIS IS HARD ....BUT SOMETIMES GOD THROWS THESE TUFF OBSTICALS AT US TO TEST OUR FAITH IN HIM ... WHEN YOU ? EVERY THING THAT IS GOING ON AND TRY TO PUSH THE BLAME ON YOURSELF OR SOMEONE ELSE IT ONLY HURTS YOU. GOD SAY CAST YOUR BURDENS ON TO ME AND I WILL CARE FOR YOU ... DONT EVER LOSE THE FAITH IN GOD BECAUSE WITH GOD ALL THINGS ARE POSSIBLE ....STAY STRONGAnonymousnoreply@blogger.com