@MsLeslieIrene yes you can :-) but please send it to Colorado so the ski resorts can open back up ha ha (like I would go NOT!) but it sure is hurting them to not have snow there for sure and other places that use snow as their money makers...bizarre the weather we are having this year...been pretty warm in Kansas and we had a little shower a little while ago...its getting a bit chillier though...hope it don't freeze
@TheShondapoo sorry to hear of your loss I too don't go through one single day that I don't think about both my babies that I lost I had a stillborn son March 2011 after we lost Josie
@MsLeslieIrene oh yeah thats a bit more cold here at...I need to count my blessings here...at least we don't have snow...at least as of yet knock on wood! Kansas is very windy though
@27jujub thanks and it is a beautiful name my mother too is up there with everyone she died 4 months after my daughter...from skin cancer...her name was Sally Jo which is where I got Jo in Josephine and Delphine was her mothers name thats where I got the phine from the Kay is from my husbands mother Judy Kay...and my husbands grandmother Christine ( the ine) I know I am stretching it there...but I felt she had to have a strong name to face her battle ahead of her...all mentioned are tough
just wondering....is this something the dr/you knew she had before she was born or did you find out after you had her? im so sorry for your loss i cant even imagine loosing a child!
@amberlbrowning i just saw that you guys donated her body to scienece! wow thats incredible! i hope they are able to learn more and save some lives! so no one else has to go through what you and your family did!
@amberlbrowning there actually was a baby girl born with the same defects as her at the same time she was born and she is alive today...I like to think its cause of what they learned from my baby girl :)
@amberlbrowning we knew something was wrong from the first sonogram there was a fluid sac on the back of our baby's neck that indicated a genetic disorder and they were leaning more towards down syndrome...but it was Turner syndrome found out through amniocenteses...then later the more detailed sonogram verified the heart deformity they couldn't see but knew was there in some form...that it was HLHS...my husband wishes we hadn't known...but I think it helped me grieve her thoroughly
Oh, thank you SO much Rebeka! I didn't realize it when I wrote my previous comment, but I also had my second heart surgery at U of M!! They were wonderful to me, and I am SO glad that your daughter got to have their excellent care! And I am SO in awe that you donated her-what a selfless, wonderful act for children all over the world! She will surely touch many more lives with your gift!! I think you're right, your daughter helped save that little girl! <3
@MsLeslieIrene thanks :-) thats why I shared her on here to show the world her short lived life and her gift to this world that seems so full of gloom but there is hope like you! keep shining and sharing your story its powerful!
Your video was beautiful! I too have Turner's and was born with a heart defect for which I had two surgeries (fine now, though!). Your story touched me SO deeply, and I just wanted to express my heartfelt condolences and may God bless you and your family!!
@MsLeslieIrene God Bless you and your story to touch many others who are faced with such diagnosis' I know she taught the doctors about her conditions there was a little girl being born around the same time as my angel and she is living today and I like to think of it as my daughter helped her live because of what they learned from my daughter...You are a blessing to the world share your story with them so they may see the hope and not lean towards genocide as many drs urge you to do...
Hi I'm Vanessa and 14 years old I'm from Germany I'm so sad about your fate, I'm just crying on here I would like to tell you something all the stars are bright stars illuminate the sky-children like your daughter and I know she is always with you!
@lifestylerrin Thank you Vanessa...be happy because my baby taught the doctors about her conditions and they were able to save the other baby who was born with the same issues as my daughter :-) She is still living today
I myself am a CHD survivor, we however lost my big brother to CHD. I feel your pain. God bless all those who don't make it, and their familes. May she and my brother rest in peace in God's arms Amen.
@NovelistVampireGirl Amen. Sorry to hear of your brother but glad you are here to share your hopeful story in such a dark world...shine that light you were given for the whole world to see! That dark world needs hope like you in their lives...that's what kept me going on with my pregnancy and fighting my husband to keep her...I couldn't give up on her and I had hoped she would be that hope that you hold...and cried for all who were tied into her battle more than for myself
@NovelistVampireGirl that doesn't make sense I meant I cried for those who I got involved with our story more so than for myself...through my blogs, through everyone who knew me, who kept up with me and my battle, etc. groups etc. I had hoped she would live and be that light in the darkness but since we donated her to science I feel she did give some form of hope cause they did learn from her things that helped them help another baby just like her at the same hospital...like to think its cuz her
@crazaysara86 1 out of 100 births are effected by a congenital Heart defect (CHD) thats 40,000 children each year born with one and 4,000 of those children will die like mine did...thank you for your sympathy help us raise awareness to get funds to help researchers figure out why it happens and better ways to fix the CHDs Thanks :-) "Its my heart" is a wonderful organization to donate to if you are interested in fund raising for one. Thanks
@inspire2live4music thanks sweetheart we are trying again after losing River Lyric our son (stillborn) March 2011 I am praying for a healthy baby that we can raise not just a healthy baby since thats what we prayed and got with our son he was healthy just dead on delivery...so praying for a miracle baby this go round :-) that we can keep this time...we do have two boys...and I have two daughters adopted out some where out there but my two at home hate others for having healthy babies pray4them
I am very sorry that you lost your precious angel. I hope no other family goes through what you went through. May God bless you and your entire family.
@aunihum sorry it made you cry :-( thanks for the comment...she is resting peacefully and recently had her baby brother join her...he was stillborn...so she isn't alone anymore now and she also has my mother to care for her and her brother 4 months after she passed my mother joined her due to skin cancer...I really need to write a book :-(
@ttjoslin Thank you God Bless you and your Family too :-)...I need some sunshine too...maybe 3rd time is a charm...I pray for no one to ever face all I have in one life time...its not easy...
God must have needed a beautiful perfect precious Angel, because thats who he chose to take. There can be no other reason.
The most powerful thing i have ever seen, the pictures of Mum looking at Angel J, and pictures of dad looking at Angel J. They say so much, so powerful.
My heart goes out to you and all your family, I pray God looks after your angels until you reunite again. You truely are inspirational. May God please let some sun shine on your lives, My love and prayers to you all.
@kasper3333 Ty thats what it was kind of meant to be a powerful statement that every life is worth fighting for...that no matter how grim the outlook God does have a plan...sometimes to better the world of science like with our daughter&son..since they did an autopsy 2 figure out y he died at 28 weeks gestation which was the Cord...we learned...3 months we will try again...ty for warm wishes...that sunshine sounds very nice especially since I lost my mom 4 months after my daughter...what a life!
What a beautiful daughter you had! I am so sorry for your loss and if I read correctly, you lost a son recently also? I cannot imagine the pain you feel inside your heart! I know that one day, you will be blessed with a healthy child. Do not give up hope and the little ones that have gone to heaven will always be with you carried warm and snuggly inside your mommy heart. Sympathy to you both!
@femf8tal thanks...she has a baby brother to take care of now...March 18, 2011...River Lyric stillborn...hypercoiled cord :-( really need prayers now thanks
@ozl89 Thank you God Bless you too...I will be making a new video for my recent loss I had a still born son on March 18th 2010...but not sure when I will get the picture slide show together or if at all...but I want to...
I am so sorry for your loss, I watched the entire video and I can not begin to think of what it was like. My mother just recently passed away in her sleep next to me so I know how it feels to lose someone so close to you. My prays are with you and your entire family and hope that as days pass your pain will lessen and you will remember all the good times you had with your beautiful daughter.
@1987alexab thank you sweetheart I am sorry for your loss...I lost my mother 4 months after my daughter...thats very painful...and to be sleeping next to her and wake to find her must have been hard on you...my prayers are with you as well sweetheart thank you....March 18th, 2010 I had a stillborn son too...so life has not been easy for me at all here the last 3 years...but I am still breathing so there is something I am supposed to do here I just don't know what yet...
she was an amazing little girl. I cant imagine living without my daughter in my world. Im so sorry for your familys loss. I hope that time has helped u move on with life, and your heart has been able to heal. I know nothing will ever make all the pain go away. Williston ND, USA
@davita29 thank you and yes time has eased the pain...we are pregnant again so far the baby looks healthy we are just waiting for week 24 to come so we can check out the heart and genetics to get a definite clean bill of health we are almost 16 weeks now maybe a week farther along because baby is measuring a week farther along than estimate due date calculated...prayers are very much welcomed God Bless you and your family so you never have to experience this kind of loss in your life
she was an amazing little girl. I cant imagine living without my daughter in my world. Im so sorry for your familys loss. I hope that time has helped u move on with life, and your heart has been able to heal. I know nothing will ever make all the pain go away.
@davita29 I really couldn't have gotten through this loss nor the loss of my mother 4 months after our daughter if it hadn't of been for God and Jesus Christ my Lord and Savior...It has been a struggle but Grief Share a program to help grieving people learn that its OK to grieve the way we do...even those in the Bible Grieve the way we do...and its "normal" whatever that means...anyways thank you for watching my video may God keep your heart light and your feet firmly planted on the ground
Hun i am so sorry for your loss of a beautiful baby...i don't have any children but i had a cousin that lived to be 2 years old and died of complications from TAR syndrome and one of her platelet transfusions went wrong and caused her lungs to fill with fluid and before they could get her to the hospital via south flight...she died. She would have been 11 this year if she would have lived. I miss her so very much! She was such a blessing to all and taught us so much. Rest in peach Josephine!
@boldnbeautifulx3 So sorry to hear of your loss sweetheart...its hard to loose a child even if its not your own...they are so sweet and innocent and shouldn't be subject to death so soon...after our daughter died 4 months later my mom died from skin cancer so it was a real tough time for me...here it is 2 yrs down the line and I am carrying a planned pregnancy I am 3 months along and everything looks great so far...I know it wont replace Josie...I just felt I need one more to finish my family
@footmaverick ya its a very emotional thing to go through but 40,000 children have to go through it each year and 4,000 of those children end up like my daughter don't get to live to see their first birthday...its a sad fact...most saddest is that CHDs kill more children than all the childhood cancers combined....but yet cancer is all funded but the number 1 killer and birth defect goes underfunded I think its something called genocide personally....ty4ur blessings sorry it broke ur heart GBU
Good people and/or the good in people are described as angels, perhaps God directs humans with the belief in passion and faith and hope and charity to want to achieve amazing milestones that are a benefit to those who are sick, poor and in need of emotional comfort and in need of love always and during the most trying of times and when a good or innocent person passes into heaven. God works in the hearts and minds of good people. Rip Josephine <3
@IrishCol1only Thank you sweetheart...we are currently trying to have another baby and pray for a healthy one this go round...I hope for a girl but if I can't have a healthy one I want a healthy baby boy instead....thanks for the prayers...there has been a hole in our hearts for so long now and wont be filled by a new baby I know this...I just want one more...Congenital Heart Disorders are #1 Birth Defect effecting 40,000 children each year and 4,000 wont live to see their 1st birthday so sad :(
RabekaJo.. I am so sorry for your loss. I have Turner Syndrome and I Thank God for my life everyday knowing that I'm here for a reason. If you have any questions about TS please feel free to contact me :) You and your family are in my prayers.
@LindsayRene82 Thank you Lindsay...I thank God too that you are alive and a living testament that Turner Syndrome is not the end but the beginning of a beautiful life worth living...I know its hard sometimes but you are thankful to be alive so I take that as no regrets...and thats why I gave Josie the best chance at life I could give her...God Bless you sweetheart thanks for offering your knowledge...there are forums out there that could use that experience stand point you have :-) Ttyl
siento mucho lo k te paso yo soy madre y me duele k sufras,pero siempre hay esperanza al final del camino y lo mejor esk tienes dos angeles contigo a tu lado k te cuidan tu 2 hijos,cuidate mucho y cuidalos a ellos..carmen
@tamarinkitis k sorry it happened to you I am a mother and it hurts me k suffer, but there is always hope at the end of the road and the best esk you have two angels beside you k you care for your two children, take care and look after them to them .. carmen (Translated) Thank you sweetheart so very much and I am taking care of the two I do still have you are too sweet (translated) Gracias cariño por lo mucho y estoy cuidando a los dos que todavía tiene usted es demasiado dulce (I love google)
I understand your pain almost. My 6mnth daughter was born with a hypoplastic right heart. My husband and me almost lost her three times while I was pregnant with her and twice while she was in the hospital. At 2dys old she stopped breathing but she's still here and at 2 1/2wks old she stopped breathing again and she's still here. She had her first surgery at 5dys old and it's been somewhat hard and somewhat easy. She just had an open-heart surgery last friday, and she's got one more.
@jfleming1985 Yes you do I hope my daughter helps current and future babies like her to better help the doctors to understand her conditions so they don't have to lose theirs like I did mine...I am sorry to hear about your Daughter but Glad she is giving up a great fight....I will be praying for her from now on...God Bless you and your family
214sweetness@RebekaJo i mean i wasnt thinkin of crying but what made me cry was that she passed away the next day. but she is in a better place and she has the best view. It's good that you shared the video.
@214sweetness Ok Thanks Sweetness...I just didn't intend to make people cry...or feel sorry for me...or anything that I have gotten since I put it up...I guess I processed my Grief while pregnant with her....and now can't feel as strangers feel and that makes me feel guilty since its my own child...I guess thats whats going on with me...Thank you for your comments...May God keep your heart light and your feet firmly planted on the ground :-)
@214sweetness no not yet but plan to come pregnant in June or July maybe even Aug...we are going to try again...long as I get the go ahead from my doctor
@214sweetness Thanks sorry it makes everyone cry thats not the intent its hope for the Congenital Heart Defect community of 40,000 children each year affected by CHDs and for the 4,000 children who don't get to see their 1st birthday...and also to help the Turner Syndrome community as well whose odds are 1 out of 10,000 I believe...instead of 1 out of 100 like with CHDs...I am thinking of redoing this video since so many cry over it when thats not the intent
@RabekaJo i mean i wasnt thinkin of crying but what made me cry was that she passed away the next day. but she is in a better place and she has the best view. It's good that you shared the video.
I agree but if they research things better they can find less invasive proceedures to fix alot of different CHDs and even may figure out what causes it and prevent it in the first place! wouldn't that be wonderful? 1 out of 100 births are effected 40,000 children a year are born with a form of CHD 4,000 will not live to see their first birthday...they need funding for this research to prevent these numbers...but government don't help...why...genocide? I think so
Don't Cry its a story of hope...she was sent here to help other babies like her...they learned so much from her...Thank you for commenting but please don't cry its not sad...its hope
i'm really sorry for your loss i hope you and your family are ok i'm 18yrs old and i hab a turner bby Leti born 9/29/09 she is a miracel for me doctors had her a total loss when i was pregnent although we are always in the hospital its just hard to be a teenage mom . . . but i think that for a reason God sent me this angel becuase i live for her . . .
I am glad you live for her...I hope my angel helps your angel through the hospital stay...hang in there sweety you can do it! We are fine, life goes on...but I will still raise awareness till the day I die. God Bless you and your beautiful family you have started. I will pray for you all. There are tons of support groups you could join to help you better understand your daughters condition and get you through it if you would like to join
Oh Rabeka, Words cannot describe how sorry I am for your loss. My thoughts and prayers are with you. I have Turners Syndrome Rabeka. I had coarctation of the aorta valve. That is not the same heart condition your daugher had. This really got to me. This could have been me. I am still alive at 47 years of age. My heart breaks for you and your husband.
I am sorry it broke your heart that was not the intent but to bring hope to those who have the diagnosis since she was donated to science the doctors could learn from her and better help current and future babies like her...May God keep your heart light and your feet firmly planted on the ground...you are an inspiration being 47 years old beating so many odds! 98% of TS babies abort themselves in first trimester you are and will always be a miracle to this world!!! and dont you forget that! hugs
i am so sorry for your loss my mother went through the same thing , i am her child i was born also with hypo-plastic left heart syndrome , if it wosent for god i would not be here telling you my story. thank you and may god bless you.
Thank you and yes her memory will last my whole life and hopefully the world would know of her and she helps the world know that CHDs exist and are number one birth defect effecting 40,000 children each year...
My deppest sympathy hun. I have Turner's Syndrome. I am so sorry you had to go through this. Your daughter was truely a beautiful girl.. If you'd like to know more about Turner's Syndrome or want to talk, I am here for you.
Thank you sweetheart I know alot about her two conditions and I know people can live with Turner Syndrome and even some don't know they have it till later in their lives even...but thank you for offering education to the viewers of my videos who are facing this diagnosis with fear...when there is hardly anything to fear for their child...I am sure a few out there who find me will get ahold of you and take advantage of your first hand knowledge :-)
Thank you for your selfless gift of Josie for research. I too, lost my baby to HLHS. I am amazed at the strides that have been made in the study of this CHD through the generosity of you and people like the family of Baby Fae.
One day, everything that has been stolen from us, will be restored. Every song we would have sung and every story we would have told, every hug and kiss and giggle, will be given back to us.
I agree sweetheart I can't wait till that glorious day when we get our babies back in our arms. God Bless you and your family, & may God keep your heart lite & your feet firmly planted on the ground...hugs sweety I know its a difficult journey..I am counting on that day when we can be a family again...ttyl ty for sharing your gratitude & your story of your baby, I am sorry for your loss but glad u have a light heart and see the promises God has in store for us. God bless you more abundantly!
I am so sorry to hear of your loss, You no doubt will be in my prayers and if you need someone to talk to you can email me here on my youtube account...God Bless you and keep your hearts light and feet firmly planted on the ground. Feel His Arms Mighty Mighty Arms wrapped tight around you and Know He Loves You and Is There For You
Oh 4everHarley I forgot to mention its not God who brings bad things onto us its the Devil this is his world where he is the ruler...but everything we do with our lives should glorify God and make the Devil weep...its hard to see God in dark times in our lives, but what the Devil won't learn is putting us through these things only draw us closer to God...at first its anger though...and he hopes that anger sticks...but it dont...cuz acceptance comes next ;-)
i cant imagine what your going through or what you went through im soo soo sorry for the loss she is very beautiful i just dont know what to say im crying b/c having a beautifu little baby grow in side for 9 months and only a few hours to spend with her breaks my heart i couldnt handle it i would go insane but thing again im reall sorry may god bless you and your family and that beautiful little girl who is watching down on you and your family she will be proud god bless you
thank you sweetheart just know that I am surviving and I was strong enough to handle this and thats why God sent her to me not other people...I did it proudly and without regrets...God Bless you and keep your heart light and your feet firmly planted on the ground...one out of 100 births are born with a Congenital heart disorder so its the number one birth disorder out there...I hope to spread the word to others with her story. Thank you for watching God Bless!
hi, i was looking for a movie and i came across this. i am now crying my eyes out, she was so beauitful, and i'm sure she is looking down and smiling at what you have done for her, i'm so sorry for your loss.
Oh sweety don't cry, she had a bigger purpose in life than I could ever dream of...I only share cause I don't want people to feel as alone as I did when I found she had these disorders...Thank you for watching and for your kind comments. I know she is smiling down at me with her grandma. God Bless you sweety and may God keep your heart light and your feet firmly planted on the ground :-)
From a person that knows how losing a child is like, I'm so sorry. My slide show is not so sensitive. Maybe I should make it so.... But if you're looking into this sort of thing, you should expect tears. I was able to have Emily for 1 month and 20 days, so I can't imagine for minutes. But it was still so HARD! Guess we all know that though. Hope you the best for the future.
So sorry to hear of your loss...I had her for 19 hrs and 34 mins...I couldn't imagine having her 1 month and 20 days thats really got to be hard sweetheart...I hope the best for your future as well...and I am here if you ever need to talk. God Bless and may God keep your heart light and your feet firmly planted on the ground
thank you, and I know God is always with me, otherwise I wouldnt have been able to face what I have faced in my life and still be living...God really is watching over me...thank you for the blessings and prayers.
your quite welcome, and I hope her story lives on and teaches many people about her conditions so that way people can know that this is more common than not, and its not the parents fault, and also that they are no alone in their diagnosis if they look and reachout to find other parents like them. There are happy ending stories to similar stories like my daughter, I know she helped the doctors learn how to help babies like her in the future etc. thanks for watching. have a blessed life :-)
thank you and yes I know he is taking great care of my little girl and healed him the best way possible...her heart is whole now, and she is perfect in everyway now.
I'm sorry about your los my daughter was born dead but i was lucky enough and they broght her back she had gotten strangled and stuck during birth...I wish you the best R.I.P to your daughter
I am glad your daughter survived thats a gift as I am sure you already know. I knew someone who had a child that that happened to and it ended up crushing the esophogus (sp?) all together and they were not able to do anything about it, so you are very lucky I wish you and your little one a long happy life together. God Bless!
Im sorry sweety may God keep your heart light and your feet firmly planted on the ground...She is in a better place, and she helped future and current babies like her...
i can only admire you , theres some bad stuff going on with me right now but hearing your story and how amazing your dealing with it just kinda helped me
U R so welcome! I'm also sorry 2 hear of ur mom! Our strength in God is so important in these times, my friend! He's the reason we exist! We're only here in this cold dark world of sin 4 a little while 2 labor, then on 2 our Heavenly home, where it'll b so bright & so glorious! What a haven 2 live in & not just 2 visit!
U R truly in my prayers & U R my new friend. Let's keep in touch! BTW: Ur boys r so cute too!
Thats Ok about the wrong place I still got it...and you are absolutely correct and I can't hardly wait for that day to come where we are gathered up in the blink of an eye and finally get to enjoy that peace and comfort waiting for us.
you can private message me anytime sweetheart on here...I will talk to you later
What a lovely baby girl! I was touched so deeply by this and my tears flow like rivers... She IS in heaven with angel wings! I bet my momma is taking good care of her too! How are you doing now? My prayers to you all!
Thank you hope, what a nice thing to say...I am so sorry to hear about your mother :-( My mom Died Jan. 19th 2009...so I know how that feels and all...its the hardest thing for me to have gone through in my life...I know losing a daughter should of been, but I didn't really know her like my mom...I am doing fine...minus the lack of motivation...from the depression from both losses...other than that I am breathing, here, and trying to raise awareness of Congenital Heart disorders :-) ttyl sweety
Thank you, the prayers do help :-) May God keep our hearts light and our feet firmly planted on the ground :-) and Life is not what happens to you, but how you react to it all...evaluate how you react and change what needs to be changed and start enjoying life again!
thanks sweety...may God keep your heart light and your feet firmly planted on the ground sweety. I think you should do some informative videos of yourself showing the world that being diagnosed with TS is far from the end...so many are pressured and scared into having abortions but its not the end of the world is it? You are a happy person I am sure? you can do anything you put your mind to right? your human right? thats what the public needs education on the subject!
Ty. No, having TS isn't the end of the world. I was diagnosed near the end of last year. I feel no different now than I did before the diagnosis. I am a very happy person. Yes, anyone can do anything when they put their minds to it, wether they have TS or not. I am very human. And I agree. The public need to be educated, and shown that TS doesn't effect the person with it's life at all. Some women live with TS without even knowing it, and they live happy lives. I am going to start a video now. x
So sorry about your diagnosis, but glad it changes nothing...I knew of a mom who had a daughter who while in check out line at the grocery store was told by this ignorant person that her "baby was going to be retarded cause she has that one genetic disorder called Turner Syndrome right?" and she was like uh no you got them mixed up so yeah society does need to know about Turner syndrome cause it doesn't impair a persons mental capabilities I totally agree it shouldn't effect you diagnosed or not
thanks sweetheart, and no its not easy, but somedays its easier than others. May God keep our hearts light and our feet firmly planted on the ground. :-)
I am sorry to hear, but know that many TS babies are out there living and are very productive...I will direct a few of my contacts to you like these and I hope they can help ease some of your worries....extra marker? wanna email me and explain?
thank you for watching...its a hopeful story if you really think about it...she bettered the knowledge of the doctors about her conditions to help future babies like her. May God keep your heart light and your feet firmly planted on the ground :-)
I could not imagine what you are going through with this. It is a wonderful thing that you want to help others in such a big way. That must have been a hard decision to make. God bless you and i know that your beautiful girl is safe in His arms awaiting you.
Thanks sweetheart, and yes God has her in His arms and this was all apart of his big plan. She taught the doctors more than they knew and taught me that there isn't enough funding for research of Congenital heart disorders and so gives me something to work at and I am working hard at it let me tell you. I am on blogtv raising awareness and money for childrens heart foundation to be donated in my daughters memory...its frustrating at the moment...but I gotta keep faith
I'm so sorry for your lost I know what your feel I lost my little samantha she was born with turner syndrome and HLHS as well, she born on october 10/22/08 and went to heaven on 5/24/08, Im sorry I know its so hard to lost your baby if you need to talk or you wish to contact me please email me
thanks sweetheart may God keep our hearts light and our feet firmly planted on the ground...its not easy but I think its given me a bigger purpose in life...that being spread awareness to the world...and I am working hard at it. ttyl
im so sorry i couldn't watch the whole vid it was 2 upsetting u poor little girl my brother died at the age of 4 his name was thomas i miss him so greatley i understand ur pain may ur little angel r.i.p.
thats OK that you couldn't watch it all, Thank you though for trying, thats why I put the warning of when the pictures come into play so people don't have to if they can't handle it...I am sorry to hear of your brother...I am sure you miss him deeply, but I am sure he is looking after my little girl up there in Heaven and wishing we could know the peace and wondrous world they are living in now...big hugs to you sweetheart...stay in contact you will be in my prayers
thanks, Please email and tell me about your nephew. Thanks I will keep him in my prayers for sure sweetheart I hope they can find a cure for your nephew as well as for all these CHD victims
Thank you sweetheart, and it was all God's plan to help the worlds that was apart of her life Turner syndrome and Hypoplstic left heart so I am happy to help in that sense I am doing a telethon on blogtv everyone is welcomed to come join me in raising money to donate to Children's Heart Foundation...talk to you later sweety thanks so much for your comment GBU
I'm at a loss to find words to tell you how sorry I am to discover your baby's passing. I sent you a friend invite with out scrolling all the way down and my goodness I'm soooo sorry to impose upon you at this terrible time. I will pray for you family..Blessings
no problem Joyce thank you for your blessings and prayers I am going to be doing a Telethon on blogtv soon to raise money for children's Heart network so please don't think you are imposing the more subscribers and the more exposure I get the better. So thank you for your kind words and time. I hope to see you on blogtv I am froginmythroat on there
:) yeah, we're getting pummeled! lol! Can we say "snow days?"
MsLeslieIrene 1 week ago
@MsLeslieIrene yes you can :-) but please send it to Colorado so the ski resorts can open back up ha ha (like I would go NOT!) but it sure is hurting them to not have snow there for sure and other places that use snow as their money makers...bizarre the weather we are having this year...been pretty warm in Kansas and we had a little shower a little while ago...its getting a bit chillier though...hope it don't freeze
RabekaJo 6 days ago
My child passed away when he was 3 days old. Not a day goes by that I don't think of him
TheShondapoo 1 week ago
@TheShondapoo sorry to hear of your loss I too don't go through one single day that I don't think about both my babies that I lost I had a stillborn son March 2011 after we lost Josie
RabekaJo 1 week ago
LOL!!! Nope, it's snowing like you can't believe here!!! :) But I am a Michigander, born and breed, and I LOVE my state!!
MsLeslieIrene 1 week ago
@MsLeslieIrene oh yeah thats a bit more cold here at...I need to count my blessings here...at least we don't have snow...at least as of yet knock on wood! Kansas is very windy though
RabekaJo 1 week ago
Comment removed
MsLeslieIrene 1 week ago
@MsLeslieIrene nope but thanks for the comment...is it warmer there? I may think about moving there if it is ha ha I am freezing!
RabekaJo 1 week ago
god bless u all..hazard kentucky..zip 41722
..my mothers name was josephine as well..its a beautiful name..shes in heaven with her..god bless u n ur family
27jujub 1 week ago
@27jujub thanks and it is a beautiful name my mother too is up there with everyone she died 4 months after my daughter...from skin cancer...her name was Sally Jo which is where I got Jo in Josephine and Delphine was her mothers name thats where I got the phine from the Kay is from my husbands mother Judy Kay...and my husbands grandmother Christine ( the ine) I know I am stretching it there...but I felt she had to have a strong name to face her battle ahead of her...all mentioned are tough
RabekaJo 1 week ago
just wondering....is this something the dr/you knew she had before she was born or did you find out after you had her? im so sorry for your loss i cant even imagine loosing a child!
amberlbrowning 2 weeks ago
@amberlbrowning i just saw that you guys donated her body to scienece! wow thats incredible! i hope they are able to learn more and save some lives! so no one else has to go through what you and your family did!
amberlbrowning 2 weeks ago
@amberlbrowning there actually was a baby girl born with the same defects as her at the same time she was born and she is alive today...I like to think its cause of what they learned from my baby girl :)
RabekaJo 1 week ago
@amberlbrowning we knew something was wrong from the first sonogram there was a fluid sac on the back of our baby's neck that indicated a genetic disorder and they were leaning more towards down syndrome...but it was Turner syndrome found out through amniocenteses...then later the more detailed sonogram verified the heart deformity they couldn't see but knew was there in some form...that it was HLHS...my husband wishes we hadn't known...but I think it helped me grieve her thoroughly
RabekaJo 1 week ago
Oh, thank you SO much Rebeka! I didn't realize it when I wrote my previous comment, but I also had my second heart surgery at U of M!! They were wonderful to me, and I am SO glad that your daughter got to have their excellent care! And I am SO in awe that you donated her-what a selfless, wonderful act for children all over the world! She will surely touch many more lives with your gift!! I think you're right, your daughter helped save that little girl! <3
MsLeslieIrene 1 month ago
@MsLeslieIrene thanks :-) thats why I shared her on here to show the world her short lived life and her gift to this world that seems so full of gloom but there is hope like you! keep shining and sharing your story its powerful!
RabekaJo 1 month ago
Your video was beautiful! I too have Turner's and was born with a heart defect for which I had two surgeries (fine now, though!). Your story touched me SO deeply, and I just wanted to express my heartfelt condolences and may God bless you and your family!!
MsLeslieIrene 1 month ago
@MsLeslieIrene God Bless you and your story to touch many others who are faced with such diagnosis' I know she taught the doctors about her conditions there was a little girl being born around the same time as my angel and she is living today and I like to think of it as my daughter helped her live because of what they learned from my daughter...You are a blessing to the world share your story with them so they may see the hope and not lean towards genocide as many drs urge you to do...
RabekaJo 1 month ago
Hi I'm Vanessa and 14 years old I'm from Germany I'm so sad about your fate, I'm just crying on here I would like to tell you something all the stars are bright stars illuminate the sky-children like your daughter and I know she is always with you!
lifestylerrin 1 month ago
@lifestylerrin Thank you Vanessa...be happy because my baby taught the doctors about her conditions and they were able to save the other baby who was born with the same issues as my daughter :-) She is still living today
RabekaJo 1 month ago
Hopefully,one day in the next life, we will all have the opportunity to hold this little life in our arms with the knowledge death is no more.
CyanoticFuture 1 month ago in playlist Liked videos
@CyanoticFuture AMEN thanks :-)
RabekaJo 1 month ago
@RabekaJo No, thank you.
CyanoticFuture 1 month ago
@CyanoticFuture :-)
RabekaJo 1 month ago
@CyanoticFuture finally someone who understands why I shared her with the world :-)
RabekaJo 1 month ago
I myself am a CHD survivor, we however lost my big brother to CHD. I feel your pain. God bless all those who don't make it, and their familes. May she and my brother rest in peace in God's arms Amen.
NovelistVampireGirl 2 months ago
@NovelistVampireGirl Amen. Sorry to hear of your brother but glad you are here to share your hopeful story in such a dark world...shine that light you were given for the whole world to see! That dark world needs hope like you in their lives...that's what kept me going on with my pregnancy and fighting my husband to keep her...I couldn't give up on her and I had hoped she would be that hope that you hold...and cried for all who were tied into her battle more than for myself
RabekaJo 2 months ago
@NovelistVampireGirl that doesn't make sense I meant I cried for those who I got involved with our story more so than for myself...through my blogs, through everyone who knew me, who kept up with me and my battle, etc. groups etc. I had hoped she would live and be that light in the darkness but since we donated her to science I feel she did give some form of hope cause they did learn from her things that helped them help another baby just like her at the same hospital...like to think its cuz her
RabekaJo 2 months ago
I send my kisses and hugs to you all.......much love to you all ...Kirstie and family ..UK xxx
kirstiedale3 3 months ago
@kirstiedale3 Thanks hugs and kisses to you all too :-) God Bless you
RabekaJo 3 months ago
As a mother I couldn't imagine the pain you must have felt, I am deeply sorry for your loss.
crazaysara86 3 months ago
@crazaysara86 1 out of 100 births are effected by a congenital Heart defect (CHD) thats 40,000 children each year born with one and 4,000 of those children will die like mine did...thank you for your sympathy help us raise awareness to get funds to help researchers figure out why it happens and better ways to fix the CHDs Thanks :-) "Its my heart" is a wonderful organization to donate to if you are interested in fund raising for one. Thanks
RabekaJo 3 months ago
@Diaryofemily thank you
RabekaJo 5 months ago
I am so sorry for your loss, she was beautiful. may she rest in peace.
Diaryofemily 5 months ago
I am so so sorry about your lose I will keep you in my prayers
inspire2live4music 6 months ago
@inspire2live4music thanks sweetheart we are trying again after losing River Lyric our son (stillborn) March 2011 I am praying for a healthy baby that we can raise not just a healthy baby since thats what we prayed and got with our son he was healthy just dead on delivery...so praying for a miracle baby this go round :-) that we can keep this time...we do have two boys...and I have two daughters adopted out some where out there but my two at home hate others for having healthy babies pray4them
RabekaJo 5 months ago
I am very sorry that you lost your precious angel. I hope no other family goes through what you went through. May God bless you and your entire family.
brittonsdad 6 months ago
@brittonsdad thanks :-) God Bless you and yours as well :-)
RabekaJo 6 months ago
i cried my eyeballs out when i watched this. im sorry for your loss. RIP sweet baby angel <3
aunihum 7 months ago
@aunihum sorry it made you cry :-( thanks for the comment...she is resting peacefully and recently had her baby brother join her...he was stillborn...so she isn't alone anymore now and she also has my mother to care for her and her brother 4 months after she passed my mother joined her due to skin cancer...I really need to write a book :-(
RabekaJo 7 months ago
I am so very sorry for your loss. Such a precious little angel that needed to shine in Heaven. May God bless you & your family!
England, AR, USA
ttjoslin 8 months ago
@ttjoslin Thank you God Bless you and your Family too :-)...I need some sunshine too...maybe 3rd time is a charm...I pray for no one to ever face all I have in one life time...its not easy...
RabekaJo 8 months ago
God must have needed a beautiful perfect precious Angel, because thats who he chose to take. There can be no other reason.
The most powerful thing i have ever seen, the pictures of Mum looking at Angel J, and pictures of dad looking at Angel J. They say so much, so powerful.
My heart goes out to you and all your family, I pray God looks after your angels until you reunite again. You truely are inspirational. May God please let some sun shine on your lives, My love and prayers to you all.
kasper3333 8 months ago
@kasper3333 Ty thats what it was kind of meant to be a powerful statement that every life is worth fighting for...that no matter how grim the outlook God does have a plan...sometimes to better the world of science like with our daughter&son..since they did an autopsy 2 figure out y he died at 28 weeks gestation which was the Cord...we learned...3 months we will try again...ty for warm wishes...that sunshine sounds very nice especially since I lost my mom 4 months after my daughter...what a life!
RabekaJo 8 months ago
What a beautiful daughter you had! I am so sorry for your loss and if I read correctly, you lost a son recently also? I cannot imagine the pain you feel inside your heart! I know that one day, you will be blessed with a healthy child. Do not give up hope and the little ones that have gone to heaven will always be with you carried warm and snuggly inside your mommy heart. Sympathy to you both!
pinkfrench 8 months ago
@pinkfrench Thank you thats very kind of you God Bless you and keep your heart light and your feet firmly planted on the ground
RabekaJo 8 months ago
From New Orleans, La. God be with you until you meet again.
femf8tal 9 months ago
@femf8tal thanks...she has a baby brother to take care of now...March 18, 2011...River Lyric stillborn...hypercoiled cord :-( really need prayers now thanks
RabekaJo 9 months ago
Prayers from Sweden, Storuman.
What a beautiful daughter and sons you have.
God Bless you all
ozl89 9 months ago
@ozl89 Thank you God Bless you too...I will be making a new video for my recent loss I had a still born son on March 18th 2010...but not sure when I will get the picture slide show together or if at all...but I want to...
RabekaJo 9 months ago
I am so sorry for your loss, I watched the entire video and I can not begin to think of what it was like. My mother just recently passed away in her sleep next to me so I know how it feels to lose someone so close to you. My prays are with you and your entire family and hope that as days pass your pain will lessen and you will remember all the good times you had with your beautiful daughter.
1987alexab 9 months ago
@1987alexab thank you sweetheart I am sorry for your loss...I lost my mother 4 months after my daughter...thats very painful...and to be sleeping next to her and wake to find her must have been hard on you...my prayers are with you as well sweetheart thank you....March 18th, 2010 I had a stillborn son too...so life has not been easy for me at all here the last 3 years...but I am still breathing so there is something I am supposed to do here I just don't know what yet...
RabekaJo 9 months ago
you were blessed to have her in your life if even for such a short time. God bless. (Long Island, NY)
allnitenurse 11 months ago
@allnitenurse I absolutely agree and thanks God Bless you :-)
RabekaJo 11 months ago
God needed Josephine Kay, you will see her again some day. She's in heaven watching over you. May God strenghten you to go on.
nowbowling 1 year ago
@nowbowling thank you...he has strengthened me...May God keep your heart light and your feet firmly planted on the ground
RabekaJo 1 year ago
shes so beautiful!!!!
louisetimpano 1 year ago
@louisetimpano Thank you God Bless you and keep your heart light and your feet firmly planted on the ground sweet person :-)
RabekaJo 1 year ago
she was an amazing little girl. I cant imagine living without my daughter in my world. Im so sorry for your familys loss. I hope that time has helped u move on with life, and your heart has been able to heal. I know nothing will ever make all the pain go away. Williston ND, USA
davita29 1 year ago
@davita29 thank you and yes time has eased the pain...we are pregnant again so far the baby looks healthy we are just waiting for week 24 to come so we can check out the heart and genetics to get a definite clean bill of health we are almost 16 weeks now maybe a week farther along because baby is measuring a week farther along than estimate due date calculated...prayers are very much welcomed God Bless you and your family so you never have to experience this kind of loss in your life
RabekaJo 1 year ago
she was an amazing little girl. I cant imagine living without my daughter in my world. Im so sorry for your familys loss. I hope that time has helped u move on with life, and your heart has been able to heal. I know nothing will ever make all the pain go away.
davita29 1 year ago
@davita29 I really couldn't have gotten through this loss nor the loss of my mother 4 months after our daughter if it hadn't of been for God and Jesus Christ my Lord and Savior...It has been a struggle but Grief Share a program to help grieving people learn that its OK to grieve the way we do...even those in the Bible Grieve the way we do...and its "normal" whatever that means...anyways thank you for watching my video may God keep your heart light and your feet firmly planted on the ground
RabekaJo 1 year ago
Hun i am so sorry for your loss of a beautiful baby...i don't have any children but i had a cousin that lived to be 2 years old and died of complications from TAR syndrome and one of her platelet transfusions went wrong and caused her lungs to fill with fluid and before they could get her to the hospital via south flight...she died. She would have been 11 this year if she would have lived. I miss her so very much! She was such a blessing to all and taught us so much. Rest in peach Josephine!
boldnbeautifulx3 1 year ago
@boldnbeautifulx3 So sorry to hear of your loss sweetheart...its hard to loose a child even if its not your own...they are so sweet and innocent and shouldn't be subject to death so soon...after our daughter died 4 months later my mom died from skin cancer so it was a real tough time for me...here it is 2 yrs down the line and I am carrying a planned pregnancy I am 3 months along and everything looks great so far...I know it wont replace Josie...I just felt I need one more to finish my family
RabekaJo 1 year ago
i could not watch pass 2:38 sorry!...God bless your lil angel ;(
footmaverick 1 year ago
@footmaverick ya its a very emotional thing to go through but 40,000 children have to go through it each year and 4,000 of those children end up like my daughter don't get to live to see their first birthday...its a sad fact...most saddest is that CHDs kill more children than all the childhood cancers combined....but yet cancer is all funded but the number 1 killer and birth defect goes underfunded I think its something called genocide personally....ty4ur blessings sorry it broke ur heart GBU
RabekaJo 1 year ago
Each new life no matter how brief, FOREVER changes the world!
amybechelli 1 year ago
@amybechelli thank you thats exactly how I feel about my angel baby girl :-) thanks for letting me know my point came acrossed....God Bless you :-)
RabekaJo 1 year ago
Good people and/or the good in people are described as angels, perhaps God directs humans with the belief in passion and faith and hope and charity to want to achieve amazing milestones that are a benefit to those who are sick, poor and in need of emotional comfort and in need of love always and during the most trying of times and when a good or innocent person passes into heaven. God works in the hearts and minds of good people. Rip Josephine <3
((Miami, FL Usa))
AriesXDiamond 1 year ago
@AriesXDiamond Thank you AriesXDiamond thats a beautiful thing to say
RabekaJo 1 year ago
Dearest Beautiful Mother,
Your child is not gone, she is merely resting in Gods arms, waiting for You to come home. Be brave and strong until you meet again.
abigator2000 1 year ago
@abigator2000 I like the way you worded that...thats beautiful and yes I know and am counting on that
RabekaJo 1 year ago
I'm from Ireland and my heart goes out to you ... now in my prayers!
IrishCol1only 1 year ago
@IrishCol1only Thank you sweetheart...we are currently trying to have another baby and pray for a healthy one this go round...I hope for a girl but if I can't have a healthy one I want a healthy baby boy instead....thanks for the prayers...there has been a hole in our hearts for so long now and wont be filled by a new baby I know this...I just want one more...Congenital Heart Disorders are #1 Birth Defect effecting 40,000 children each year and 4,000 wont live to see their 1st birthday so sad :(
RabekaJo 1 year ago
RabekaJo.. I am so sorry for your loss. I have Turner Syndrome and I Thank God for my life everyday knowing that I'm here for a reason. If you have any questions about TS please feel free to contact me :) You and your family are in my prayers.
LindsayRene82 1 year ago
@LindsayRene82 Thank you Lindsay...I thank God too that you are alive and a living testament that Turner Syndrome is not the end but the beginning of a beautiful life worth living...I know its hard sometimes but you are thankful to be alive so I take that as no regrets...and thats why I gave Josie the best chance at life I could give her...God Bless you sweetheart thanks for offering your knowledge...there are forums out there that could use that experience stand point you have :-) Ttyl
RabekaJo 1 year ago
siento mucho lo k te paso yo soy madre y me duele k sufras,pero siempre hay esperanza al final del camino y lo mejor esk tienes dos angeles contigo a tu lado k te cuidan tu 2 hijos,cuidate mucho y cuidalos a ellos..carmen
tamarinkitis 1 year ago
@tamarinkitis k sorry it happened to you I am a mother and it hurts me k suffer, but there is always hope at the end of the road and the best esk you have two angels beside you k you care for your two children, take care and look after them to them .. carmen (Translated) Thank you sweetheart so very much and I am taking care of the two I do still have you are too sweet (translated) Gracias cariño por lo mucho y estoy cuidando a los dos que todavía tiene usted es demasiado dulce (I love google)
RabekaJo 1 year ago
I understand your pain almost. My 6mnth daughter was born with a hypoplastic right heart. My husband and me almost lost her three times while I was pregnant with her and twice while she was in the hospital. At 2dys old she stopped breathing but she's still here and at 2 1/2wks old she stopped breathing again and she's still here. She had her first surgery at 5dys old and it's been somewhat hard and somewhat easy. She just had an open-heart surgery last friday, and she's got one more.
jfleming1985 1 year ago
@jfleming1985 Yes you do I hope my daughter helps current and future babies like her to better help the doctors to understand her conditions so they don't have to lose theirs like I did mine...I am sorry to hear about your Daughter but Glad she is giving up a great fight....I will be praying for her from now on...God Bless you and your family
RabekaJo 1 year ago
214sweetness@RebekaJo i mean i wasnt thinkin of crying but what made me cry was that she passed away the next day. but she is in a better place and she has the best view. It's good that you shared the video.
214sweetness 1 year ago
@214sweetness Ok Thanks Sweetness...I just didn't intend to make people cry...or feel sorry for me...or anything that I have gotten since I put it up...I guess I processed my Grief while pregnant with her....and now can't feel as strangers feel and that makes me feel guilty since its my own child...I guess thats whats going on with me...Thank you for your comments...May God keep your heart light and your feet firmly planted on the ground :-)
RabekaJo 1 year ago
@RabekaJo your welcome.i was wondering if you got pregnant again.? but i get where you coming from in a away just don't feel guilty.thank you.
214sweetness 1 year ago
@214sweetness no not yet but plan to come pregnant in June or July maybe even Aug...we are going to try again...long as I get the go ahead from my doctor
RabekaJo 1 year ago
hi im very very sorry for your babies lost she was a gorgeous babygirl..it made me cry really bad. i have a daughter myself she is 9months old.
214sweetness 1 year ago
@214sweetness Thanks sorry it makes everyone cry thats not the intent its hope for the Congenital Heart Defect community of 40,000 children each year affected by CHDs and for the 4,000 children who don't get to see their 1st birthday...and also to help the Turner Syndrome community as well whose odds are 1 out of 10,000 I believe...instead of 1 out of 100 like with CHDs...I am thinking of redoing this video since so many cry over it when thats not the intent
RabekaJo 1 year ago
This has been flagged as spam show
@RabekaJo i mean i wasnt thinkin of crying but what made me cry was that she passed away the next day. but she is in a better place and she has the best view. It's good that you shared the video.
214sweetness 1 year ago
noone should watch there baby go through this :'(
iluvtwinkies22 1 year ago
I agree but if they research things better they can find less invasive proceedures to fix alot of different CHDs and even may figure out what causes it and prevent it in the first place! wouldn't that be wonderful? 1 out of 100 births are effected 40,000 children a year are born with a form of CHD 4,000 will not live to see their first birthday...they need funding for this research to prevent these numbers...but government don't help...why...genocide? I think so
RabekaJo 1 year ago
am am So sorry for your lost treasure i'm crying!
kittiekateie 1 year ago
Don't Cry its a story of hope...she was sent here to help other babies like her...they learned so much from her...Thank you for commenting but please don't cry its not sad...its hope
RabekaJo 1 year ago
i'm really sorry for your loss i hope you and your family are ok i'm 18yrs old and i hab a turner bby Leti born 9/29/09 she is a miracel for me doctors had her a total loss when i was pregnent although we are always in the hospital its just hard to be a teenage mom . . . but i think that for a reason God sent me this angel becuase i live for her . . .
Rletibby 1 year ago 2
I am glad you live for her...I hope my angel helps your angel through the hospital stay...hang in there sweety you can do it! We are fine, life goes on...but I will still raise awareness till the day I die. God Bless you and your beautiful family you have started. I will pray for you all. There are tons of support groups you could join to help you better understand your daughters condition and get you through it if you would like to join
RabekaJo 1 year ago
Oh Rabeka, Words cannot describe how sorry I am for your loss. My thoughts and prayers are with you. I have Turners Syndrome Rabeka. I had coarctation of the aorta valve. That is not the same heart condition your daugher had. This really got to me. This could have been me. I am still alive at 47 years of age. My heart breaks for you and your husband.
robinbrl 2 years ago 2
I am sorry it broke your heart that was not the intent but to bring hope to those who have the diagnosis since she was donated to science the doctors could learn from her and better help current and future babies like her...May God keep your heart light and your feet firmly planted on the ground...you are an inspiration being 47 years old beating so many odds! 98% of TS babies abort themselves in first trimester you are and will always be a miracle to this world!!! and dont you forget that! hugs
RabekaJo 1 year ago
i am so sorry for your loss my mother went through the same thing , i am her child i was born also with hypo-plastic left heart syndrome , if it wosent for god i would not be here telling you my story. thank you and may god bless you.
331danyello 2 years ago 2
Thank you for sharing your story I am happy that the doctors were able to fix your heart so you could testify this story...God Bless you sweetheart
RabekaJo 2 years ago
shes beautiful, im so sorry for your loss i treasure each presious minute i have with my baby girl, god bless u all xo
missmellyful 2 years ago 2
Thank you for your kind comment on my daughters memorial video...God Bless you and keep you all safe
RabekaJo 2 years ago
I'm so sorry you lost your only daughter :'-( hope the good times will be remembered
girly359 2 years ago 2
Thank you and yes her memory will last my whole life and hopefully the world would know of her and she helps the world know that CHDs exist and are number one birth defect effecting 40,000 children each year...
RabekaJo 2 years ago
so sorry for your loss =(
I have a month old babiie and
im soo in love with her she makes me
a happy and better person
i would totally understand how u feel.
babiieboo01 2 years ago 2
Thank you sweetheart and hug that baby every chance you get
RabekaJo 2 years ago
My deppest sympathy hun. I have Turner's Syndrome. I am so sorry you had to go through this. Your daughter was truely a beautiful girl.. If you'd like to know more about Turner's Syndrome or want to talk, I am here for you.
cherryfiire 2 years ago 3
Thank you sweetheart I know alot about her two conditions and I know people can live with Turner Syndrome and even some don't know they have it till later in their lives even...but thank you for offering education to the viewers of my videos who are facing this diagnosis with fear...when there is hardly anything to fear for their child...I am sure a few out there who find me will get ahold of you and take advantage of your first hand knowledge :-)
RabekaJo 2 years ago
Thank you for your selfless gift of Josie for research. I too, lost my baby to HLHS. I am amazed at the strides that have been made in the study of this CHD through the generosity of you and people like the family of Baby Fae.
One day, everything that has been stolen from us, will be restored. Every song we would have sung and every story we would have told, every hug and kiss and giggle, will be given back to us.
mtwildflower36 2 years ago 4
I agree sweetheart I can't wait till that glorious day when we get our babies back in our arms. God Bless you and your family, & may God keep your heart lite & your feet firmly planted on the ground...hugs sweety I know its a difficult journey..I am counting on that day when we can be a family again...ttyl ty for sharing your gratitude & your story of your baby, I am sorry for your loss but glad u have a light heart and see the promises God has in store for us. God bless you more abundantly!
RabekaJo 2 years ago
I lost my son on Monday to HLHS. He was born on aug 26 and died on oct 26. Please pray for us as you are in my prayers as well.
kindra2781 2 years ago 5
I am so sorry to hear of your loss, You no doubt will be in my prayers and if you need someone to talk to you can email me here on my youtube account...God Bless you and keep your hearts light and feet firmly planted on the ground. Feel His Arms Mighty Mighty Arms wrapped tight around you and Know He Loves You and Is There For You
RabekaJo 2 years ago
Kinda, you and your precious son are indeed in my prayers.
God bless you as your endure this.
Hugs from California.
4everHarleys 2 years ago 5
that is so sad you could feel the love you and your partner have for her through the photos god bless you and your little angel may she rest in peace
denisraftis 2 years ago 4
thank you God Bless you for watching it all and May God keep your heart light and your feet firmly planted on the ground
RabekaJo 2 years ago
Rabeka Jo,
Words fail me. What a beautiful daughter you had, and still have.
I don't understand God during times like these, but have to believe there must be some reason for this horrible, tragic loss.
I have so much respect and honor for you for holding on to your faith.
God bless you, and your family.
4everHarleys 2 years ago 6
Thank you God Bless you for your time and may he keep your heart light always and your feet firmly planted on this earth...talk to you later
RabekaJo 2 years ago
Oh 4everHarley I forgot to mention its not God who brings bad things onto us its the Devil this is his world where he is the ruler...but everything we do with our lives should glorify God and make the Devil weep...its hard to see God in dark times in our lives, but what the Devil won't learn is putting us through these things only draw us closer to God...at first its anger though...and he hopes that anger sticks...but it dont...cuz acceptance comes next ;-)
RabekaJo 2 years ago
i cant imagine what your going through or what you went through im soo soo sorry for the loss she is very beautiful i just dont know what to say im crying b/c having a beautifu little baby grow in side for 9 months and only a few hours to spend with her breaks my heart i couldnt handle it i would go insane but thing again im reall sorry may god bless you and your family and that beautiful little girl who is watching down on you and your family she will be proud god bless you
ashleyfyffe09 2 years ago 4
thank you sweetheart just know that I am surviving and I was strong enough to handle this and thats why God sent her to me not other people...I did it proudly and without regrets...God Bless you and keep your heart light and your feet firmly planted on the ground...one out of 100 births are born with a Congenital heart disorder so its the number one birth disorder out there...I hope to spread the word to others with her story. Thank you for watching God Bless!
RabekaJo 2 years ago
hi, i was looking for a movie and i came across this. i am now crying my eyes out, she was so beauitful, and i'm sure she is looking down and smiling at what you have done for her, i'm so sorry for your loss.
iona011193 2 years ago 3
Oh sweety don't cry, she had a bigger purpose in life than I could ever dream of...I only share cause I don't want people to feel as alone as I did when I found she had these disorders...Thank you for watching and for your kind comments. I know she is smiling down at me with her grandma. God Bless you sweety and may God keep your heart light and your feet firmly planted on the ground :-)
RabekaJo 2 years ago
From a person that knows how losing a child is like, I'm so sorry. My slide show is not so sensitive. Maybe I should make it so.... But if you're looking into this sort of thing, you should expect tears. I was able to have Emily for 1 month and 20 days, so I can't imagine for minutes. But it was still so HARD! Guess we all know that though. Hope you the best for the future.
gena380 2 years ago 3
So sorry to hear of your loss...I had her for 19 hrs and 34 mins...I couldn't imagine having her 1 month and 20 days thats really got to be hard sweetheart...I hope the best for your future as well...and I am here if you ever need to talk. God Bless and may God keep your heart light and your feet firmly planted on the ground
RabekaJo 2 years ago
my condolences goes out to u im sorry for your lost i do hope u get alot of blessings .because god is always with u god bless u
victoriusvee10 2 years ago 4
thank you, and I know God is always with me, otherwise I wouldnt have been able to face what I have faced in my life and still be living...God really is watching over me...thank you for the blessings and prayers.
RabekaJo 2 years ago
So sorry for your loss. She is beautiful!!! She has already touched many hearts on here. Thank you for sharing her with us!
torigall 2 years ago 5
your quite welcome, and I hope her story lives on and teaches many people about her conditions so that way people can know that this is more common than not, and its not the parents fault, and also that they are no alone in their diagnosis if they look and reachout to find other parents like them. There are happy ending stories to similar stories like my daughter, I know she helped the doctors learn how to help babies like her in the future etc. thanks for watching. have a blessed life :-)
RabekaJo 2 years ago
God will take good care of your little girl!
LightStijn 2 years ago 4
thank you and yes I know he is taking great care of my little girl and healed him the best way possible...her heart is whole now, and she is perfect in everyway now.
RabekaJo 2 years ago
gosh Im so tired...I said him instead of her...sorry bout that...sleep is hard to come by these days, my mind just wont shut up at night
RabekaJo 2 years ago
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LightStijn 2 years ago
I'm sorry about your los my daughter was born dead but i was lucky enough and they broght her back she had gotten strangled and stuck during birth...I wish you the best R.I.P to your daughter
twinkie171 2 years ago 4
I am glad your daughter survived thats a gift as I am sure you already know. I knew someone who had a child that that happened to and it ended up crushing the esophogus (sp?) all together and they were not able to do anything about it, so you are very lucky I wish you and your little one a long happy life together. God Bless!
RabekaJo 2 years ago
im so so sorry :(
shes in heaven
rest in peace xx
LovePeacePurity 2 years ago 4
thanks may God keep our hearts light and our feet firmly planted on the ground :-)
RabekaJo 2 years ago
god.
this really made me emotional sorry 4 ue loss
x
LovePeacePurity 2 years ago 4
Im sorry sweety may God keep your heart light and your feet firmly planted on the ground...She is in a better place, and she helped future and current babies like her...
RabekaJo 2 years ago
:)
i can only admire you , theres some bad stuff going on with me right now but hearing your story and how amazing your dealing with it just kinda helped me
thanks xx
LovePeacePurity 2 years ago 4
This Little Girl Will Be Remembered From All People And Especially Through My Heart ... <3
ILoveYouBaby x
zacknrissi 2 years ago 4
Thank you sweety :-)
RabekaJo 2 years ago
U R so welcome! I'm also sorry 2 hear of ur mom! Our strength in God is so important in these times, my friend! He's the reason we exist! We're only here in this cold dark world of sin 4 a little while 2 labor, then on 2 our Heavenly home, where it'll b so bright & so glorious! What a haven 2 live in & not just 2 visit!
U R truly in my prayers & U R my new friend. Let's keep in touch! BTW: Ur boys r so cute too!
Your friend,
~Hope~
RiverCrossingHope 2 years ago 4
Thats Ok about the wrong place I still got it...and you are absolutely correct and I can't hardly wait for that day to come where we are gathered up in the blink of an eye and finally get to enjoy that peace and comfort waiting for us.
you can private message me anytime sweetheart on here...I will talk to you later
RabekaJo 2 years ago
What a lovely baby girl! I was touched so deeply by this and my tears flow like rivers... She IS in heaven with angel wings! I bet my momma is taking good care of her too! How are you doing now? My prayers to you all!
~Hope~
RiverCrossingHope 2 years ago 4
Thank you hope, what a nice thing to say...I am so sorry to hear about your mother :-( My mom Died Jan. 19th 2009...so I know how that feels and all...its the hardest thing for me to have gone through in my life...I know losing a daughter should of been, but I didn't really know her like my mom...I am doing fine...minus the lack of motivation...from the depression from both losses...other than that I am breathing, here, and trying to raise awareness of Congenital Heart disorders :-) ttyl sweety
RabekaJo 2 years ago
Oh no, I put it in the wrong place! I should have put it here! Sorry!
RiverCrossingHope 2 years ago 4
I´m so sorry for your loss. Now she have little wings and sleep in heaven. God bless you sweet babygirl, I pray for you and your parents.
prinsessa666 2 years ago 4
Thank you, the prayers do help :-) May God keep our hearts light and our feet firmly planted on the ground :-) and Life is not what happens to you, but how you react to it all...evaluate how you react and change what needs to be changed and start enjoying life again!
RabekaJo 2 years ago
gorgeous girl
mylovesofmylife 2 years ago 4
thank you!
RabekaJo 2 years ago
I am so sorry for your loss. I have TS.
RIP Josephine Kay xx
Lozzy54 2 years ago 4
thanks sweety...may God keep your heart light and your feet firmly planted on the ground sweety. I think you should do some informative videos of yourself showing the world that being diagnosed with TS is far from the end...so many are pressured and scared into having abortions but its not the end of the world is it? You are a happy person I am sure? you can do anything you put your mind to right? your human right? thats what the public needs education on the subject!
RabekaJo 2 years ago
Ty. No, having TS isn't the end of the world. I was diagnosed near the end of last year. I feel no different now than I did before the diagnosis. I am a very happy person. Yes, anyone can do anything when they put their minds to it, wether they have TS or not. I am very human. And I agree. The public need to be educated, and shown that TS doesn't effect the person with it's life at all. Some women live with TS without even knowing it, and they live happy lives. I am going to start a video now. x
Lozzy54 2 years ago 4
So sorry about your diagnosis, but glad it changes nothing...I knew of a mom who had a daughter who while in check out line at the grocery store was told by this ignorant person that her "baby was going to be retarded cause she has that one genetic disorder called Turner Syndrome right?" and she was like uh no you got them mixed up so yeah society does need to know about Turner syndrome cause it doesn't impair a persons mental capabilities I totally agree it shouldn't effect you diagnosed or not
RabekaJo 2 years ago
oh my gosh. i am so sorry! that is so sad i bet it was really hard. i can't imagine losing someone so young.
mcm51695 2 years ago 4
thanks sweetheart, and no its not easy, but somedays its easier than others. May God keep our hearts light and our feet firmly planted on the ground. :-)
RabekaJo 2 years ago
I am so sorry! I am expecting a TS baby. They are checking to see what the extra marker was they found.
blargyman 2 years ago 4
I am sorry to hear, but know that many TS babies are out there living and are very productive...I will direct a few of my contacts to you like these and I hope they can help ease some of your worries....extra marker? wanna email me and explain?
RabekaJo 2 years ago
Sad, yet beautiful to see all the love.
Awesome video, thanks for sharing.
RandomDoors 2 years ago 4
thank you for watching...its a hopeful story if you really think about it...she bettered the knowledge of the doctors about her conditions to help future babies like her. May God keep your heart light and your feet firmly planted on the ground :-)
RabekaJo 2 years ago
I could not imagine what you are going through with this. It is a wonderful thing that you want to help others in such a big way. That must have been a hard decision to make. God bless you and i know that your beautiful girl is safe in His arms awaiting you.
ekelley21 2 years ago 4
Thanks sweetheart, and yes God has her in His arms and this was all apart of his big plan. She taught the doctors more than they knew and taught me that there isn't enough funding for research of Congenital heart disorders and so gives me something to work at and I am working hard at it let me tell you. I am on blogtv raising awareness and money for childrens heart foundation to be donated in my daughters memory...its frustrating at the moment...but I gotta keep faith
RabekaJo 2 years ago
I'm so sorry for your lost I know what your feel I lost my little samantha she was born with turner syndrome and HLHS as well, she born on october 10/22/08 and went to heaven on 5/24/08, Im sorry I know its so hard to lost your baby if you need to talk or you wish to contact me please email me
babyangelmom 2 years ago 5
thanks sweetheart may God keep our hearts light and our feet firmly planted on the ground...its not easy but I think its given me a bigger purpose in life...that being spread awareness to the world...and I am working hard at it. ttyl
RabekaJo 2 years ago
im so sorry i couldn't watch the whole vid it was 2 upsetting u poor little girl my brother died at the age of 4 his name was thomas i miss him so greatley i understand ur pain may ur little angel r.i.p.
jessxdh 2 years ago 4
thats OK that you couldn't watch it all, Thank you though for trying, thats why I put the warning of when the pictures come into play so people don't have to if they can't handle it...I am sorry to hear of your brother...I am sure you miss him deeply, but I am sure he is looking after my little girl up there in Heaven and wishing we could know the peace and wondrous world they are living in now...big hugs to you sweetheart...stay in contact you will be in my prayers
RabekaJo 2 years ago
thnk u at least they r at peace he died of meningytus not sure if i spelt tht right but they will always b in our hearts xxx
jessxdh 2 years ago 4
Aw so sorry to hear that....and yes they will remain in our hearts forever. :-)
RabekaJo 2 years ago
sorry to hear about your precious daughter, she will be missed. god bless you and your family.
my nephew is suffering from pentalogy of cantrell, rare disease.
keolor 2 years ago 4
thanks, Please email and tell me about your nephew. Thanks I will keep him in my prayers for sure sweetheart I hope they can find a cure for your nephew as well as for all these CHD victims
RabekaJo 2 years ago
very sorry to see this baby take so long to make and so quick to die so so sorry:( blessing to your family
wowmad9922 2 years ago 4
Thank you sweetheart, and it was all God's plan to help the worlds that was apart of her life Turner syndrome and Hypoplstic left heart so I am happy to help in that sense I am doing a telethon on blogtv everyone is welcomed to come join me in raising money to donate to Children's Heart Foundation...talk to you later sweety thanks so much for your comment GBU
RabekaJo 2 years ago
I'm at a loss to find words to tell you how sorry I am to discover your baby's passing. I sent you a friend invite with out scrolling all the way down and my goodness I'm soooo sorry to impose upon you at this terrible time. I will pray for you family..Blessings
Joyce
teacherjoyceann 2 years ago 4
no problem Joyce thank you for your blessings and prayers I am going to be doing a Telethon on blogtv soon to raise money for children's Heart network so please don't think you are imposing the more subscribers and the more exposure I get the better. So thank you for your kind words and time. I hope to see you on blogtv I am froginmythroat on there
RabekaJo 2 years ago