I started this blog as a release for my emotions, a place to inform others of Jude's status, and just a general place of comfort. I never knew much of RSS feeds, or anything else ad related. I am in fact pretty blog illiterate! I did start another blog, but solely for the hope that it would earn some money to help fund Emily's Smile Box campaign. I have now added that quote into that blog. Anyway, I digress to the fact that I feel 100% snowed tonight.
Last week I found out that a mother in Austin was keeping a blog for her sick child. Seems innocent enough right?? Although, the kicker here was she was keeping a blog for a child she was KEEPING sick! She was feeding her child feces! I am not joking, look it up. Luckily, I did not follow her blog, so I was offended, but I didn't feel it was personal. Tonight, I had something happen, and it was personal. I have been following a moms blog for some time. She was supposedly a single mom who had gotten pregnant, and then found out her baby had Trisomy. Trisomy 18 is a devastating illness, and was the one affliction Mike, and I knew we would struggle with possibly terminating over. I remember waiting on Jude's amnio results after we learned something was wrong PRAYING trisomy 18 was NOT Jude's fate. I know that termination may not be the right decision, but Trisomy 18 can be painful, and I just couldn't follow through with that. So I read daily about her anticipation of her sick baby's birth. Her hopes that her baby would be born alive, and that she would have a little cherished time with her. I cried with her, I wondered about the baby, and I anticipated the little girls arrival. Then the other day the baby was born after a very long intense labor. We were updated that the baby had lived for 19 hours, and even though she had issues she was hanging in there. My heart lept with joy after reading this information. Then tonight I found out the blog is a complete fabrication set up to attract ads so that the owner of the blog can make money. I was devastated. I can only hold out hope that this information is incorrect, but now I am so angry that it won't matter.
At first I was in tears, and Mike looked at me wondering what was wrong. I explained the situation to him, and explained that this was so very unfair in my mind. This was equivalent to unfit drug addict ...... um .........woman of the night having normal a healthy baby, when she doesn't want one. I would want nothing less for them, but that fate still seems a bit unfair to me. So I prayed.........I did...and I prayed hard.
I prayed that these women that wrote these blogs will never experience:
1. The pain of losing a child
2. The pain of knowing their child will never be normal
3. The pain of watching their child writhe in pain from a crippling seizure
4. That they will never have to give possibly lethal medication to their child to control seizures
5. That they will never know the pain of wondering if their baby will take a breath when they are born.
Instead I prayed that they will someday find a blessing as precious as my Jude, and know within their heart how special that blessing is. If they can fathom that one moment, and truly understand how precious that baby is, then and only then will they be ashamed of what they have done.
I am in tears..........not sure why......just think it's wrong. I am holding out hope that the blog of the baby I have been following is somehow true, and not fake. Regardless we know the one in Austin isn't real, and it's crushing. Please moms be thankful for your babies!
** As a follow up note due to a response I got, let me clarify there are different levels of trisomy. I was referring to Trisomy 18 not Downs Syndrome (Trisomy 21). Down Syndrome is very manageable, and by all means I would have followed through my pregnancy due to that genetic issue (In fact Mike, and I made that decision before our amnio). Many DS babies live a wonderful life, and I am lucky to know many wonderful people with DS. However, different forms of Trisomy can be devastatingly horrible and painful for a baby, and it's just my own personal decision that I would have struggled with a choice to end the pregnancy. 50% of children with the severe level of trisomy 18 do not live past one week after birth, and suffer greatly. The other half generally die before 1 year. I know many parents are blessed with their children's births that have Trisomy, and please do not think I am being negative. It's only my personal choice, and like I said one I would stuggle with. I would not want a baby to only know a life of pain so it would be a hard choice. I used to follow a blog of woman who's baby in utero had severe trisomy 18 with multiple heart problems. They knew the baby would not live long after birth. She had to actually pick her baby's grave out prior to her birth. It's unfair what some people experience.
13 comments:
Jenn...I followed April Roses' blog too! I was wondering what was going on? The last post was questionable after they deleted everything. So, do we know for sure it was fake? I can not imagine anyone doing such a thing...however their are so many greedy, unthoughtful, immoral people in this world. There were so many followers and people praying for this baby. All we can do is pray for the horrible people that did this....they need help! I am sure for you it is even more heart wrenching having sweet Jude and everything you guys have been through and continue to go through.
I still can't beleive it was a hoax!
I hope I am wrong Amy. I hope the person that led me to all the proof was wrong. I didn't mention her name because I didn't want to accuse, but it made me so sad. Maybe it was a build up of emotions. I felt so violated! I hope, I pray, this is wrong information.
jenn, you come across so many people in your life, and like most of us, we hope that what they do is done in good faith. nothing suprises me anymore, and can only hope that people have the right intentions. this is what makes children like jude so special...because they will never know the ugly in people and will ALWAYS be precious and beautiful. you are so lucky to have that little man.i hope his spasms and seizures are gone with the increase in medicine.
Oh Jenn, I totally understand. It is heart breaking when you invest your emotions to a person and family you know let alone you don't personally know. I am a firm believer in Karma. What goes around..... I knew a few ladies on my due date club that lost their children to Trisomy. It is very devasting for of course the families but for us mom's as well that were blessed to have healthy babies. I thank God each day for my children, but, it still does not make me wonder why my friends did not have the same happy ending. Your Jude and Emily are as normal as my five. I love watching the videos and reading the updates. We haven't met yet, I am hoping that we can get your way soon and meet with the kids. We will be back in East Texas in a few weeks. =) You are not too far from us. About an hour or so drive. Talk soon and be strong.
Hi, I have been following the April Rose blog for 2 months now and I'm really confused too. The thing that didn't sit well with me was the pictures they posted of the baby and then suddenly it disappeared. I have cried real tears over this lady and I really hope I'm wrong! I guess I will continue to pray until I know for sure.
I have never read April Rose's blog and am glad I didn't. I have read your blog and have really admired what a good and caring mother you are and what a loving family you have and that is why I was surprised at your reaction to trisomy. With down syndrome there can be other health problems but they can be fixed. Children with down syndrome grow up to have very productive lives, even marry and live independently. My granddaughter is 7 months old and is hitting all of her milestones she has no health problems I could never have imagined why anyone would consider terminating a down syndrome pregnancy. I was very surpised to hear this form of prejudice on your blog - all babies are a gift from God.
I'm speechless.
Amy Hendrix
I can understand your feeling "anonymous", but I failed to clarify myself. There are different levels of trisomy, and trisomy 18 is devsatating. In fact when they asked me to do an amnio for Jude I was hestitant because I knew all babies are beautiful and a blessing. Although, when the perinatlist took the time to explain Trisomy 18 I bawled knowing I wouldn't want this for my child. Hugs to your grand daughter, and I bet she is so beautiful Don't think I was being prejudice because I am not. I have told my husband before that I believe children with downs syndrome have a better understanding of the world than we do. They see the world through beautiful eyes, and it's so much better than what we see.
FYI, the post above mine is not from me!!!
Amy Hendrix (Turtlemom)
Jennifer, I can't at all blame you for considering termination when you were told there was a chance Jude could have possible had Trisomy 18. I don't think it's fair for anyone to say you were being prejudice, especially if they have never been in your situation.
But, as anonymous posted, I think they were referring more towards Down Syndrome and not specifically to Trisomy 18.
Jenn, I was so angry about this too--especially when there are real, sick babies out there who could use the same level of love and prayer. But, I believe that what goes around comes around, so hopefully that situation will work itself out one way or another.
Don't worry too much about the anon commentor--I think they misunderstood you.
That makes me so angry to think that someone could make up such a tragic story =(
As for your Trisomy outlook, I totally respect and "get" what you're saying. When I found out I was carrying nonviable conjoined twins, my husband and I made the difficult decision to "terminate" (did I mention I HATE that word?) the pregnancy, for NO other reason than we loved our precious babies and did not want them to SUFFER and DIE in pain. No mother wishes that for her child, and unfortunately, that was a guarantee for me if I continued my pregnancy. ((HUGS)) to you and Baby Jude <3 He is always in my prayers!!
Did you see the updates today from MckMama and Angie. Sickening and I hope this lady gets fraud charges for this. She took donations from people who only had good intentions for her.
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