Poor Baby Kaleb..this broke my heart

[IvannaTrailer]

[quote author=alliekat link=topic=7976.msg493309#msg493309 date=1186751714]
Isn't it possible that she's doing this because the public has expressed an interest in the status of her child?  A lot of people are pulling for this little guy and she's just keeping them updated.  At least, that's how it appears to me.  She's not slamming the babysitter or anything, so that leads me to believe that she's being genuine.  And I'm sure by this point, they've accrued an ungodly amount of medical bills, so I don't see anything wrong with them accepting donations.

I'm sure you're right that she's naively unaware, just like anyone that is thrown into a situation like this.  They had a healthy normal baby one day, and the next...well, you know.
[/quote]

That could very well be why she is doing it... with good intentions. I am just saying that she could very well regret that decision in the future. She will have A LOT of choices to make in her future and A LOT of hardships, she might regret not keeping this experience more personal.
I do not have a child who suffered from SBS but I do have a special needs child. I went through a lot of what she is going through; I am STILL going through it. It is hard enough to deal with without being under the scrutiny and the watchful eye of the public. It is going to be a long hard life for this family and I wish them the best and I truly hope that everything works out well for them.

[IvannaTrailer]

And here come the problems with inviting the public into your life...

[url]http://blog.myspace.com/index.cfm?fuseaction=blog.view&friendID=340915 83&blogID=301402126[/url

August 20, 2007 - Monday

  Taking a Breather


  For the last three months we have gone through every emotion imaginable. We have had our hearts torn out and ripped in half. We have felt hopeless, scared and lost. We felt betrayed by someone with whom we trusted our most prized possession (our son) with. We felt as if a part of us had died and would never come back…then all of you came along ane lifted our spirits. You encouraged us in times that we thought we couldn't do it anymore. You prayed for our Kaleb. You prayed for comfort for our family. You were an encouragement to a family you have never met with gifts, donations and prayers.  You opened your arms and comforted us. All of this we are SO VERY THANKFUL FOR. We have cried and thanked God so many times for the generosity and love that has been shown to our family. We wished that we could meet each and every one of you personally and thank you. We'd love for Kaleb and your children to run around and scream and have fun, while we share a dinner and chit-chat like friends do, because each and every one of you have become our "friends". And because you are our "friends", we hope that you understand why we have decided to stop blogging for a while.

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    It was brought to our attention last night that one of the forums posted not only our address and phone number, but other members of our family's addresses too.  This has crossed the line completely. They say that they are doing all of this "investigating" for "Kaleb's Sake". All that this has done is compromised the safety of EVERY PERSON IN OUR FAMILY, ESPECIALLY KALEB!  We don't understand how putting Kaleb in harm's way is in his best interest as they claim.  We are completely stunned by the words and LIES that have been put out there about our family. We have never attacked anyone on myspace. We have never slandered anyone. We have not lied to or about anyone. These people are not trustworthy, very manipulative and have continuously attacked my family, which includes Kaleb, via myspace, forums, emails, etc. They have tried to break up our marriage by making fake profiles and sending racy messages to Josh. They have called us murderers and threatened Kaleb and our families. They have harassed our families, friends,  and Dianne, our spokesperson. They have tried to have Kaleb taken away from us by calling child protective services and filing FALSE reports. They have published our PRIVATE medical information. They have attacked those involved in the fundraisers with harrassment. They have added an unnecessary element of stress into our family's life with cruel and unnecessary comments and have attempted to tear us apart. Why?! WHY do they feel like the only way to have their opinions heard is to tear apart our innocent family? Why are they trying to crumble Kaleb's support system if they "CARE" so much about him? They do these things in an EVIL manner.  A minority of people, yes, I know… However when they do something like posting the address's of a VICTIM and HIS FAMILY… That is where we HAVE to draw the line. WE WILL NOT HAVE OUR FAMILY IN HARM'S WAY. Everything that has been said are lies. PERIOD.  We believe God will protect us but this has gone too far.  ….  You are in NO WAY supporting Kaleb by bashing the people who love him more than anyone!  We could easily do the same to the person who has been arrested for our son's injury and her family, however, we choose not to lower ourselves to this standard…it is not who we are and not in the best interest of our son or her children.  And we expect those who support us to act in the same manner.



    TO THOSE ON THE FORUMS ON BOTH SIDES:  People are out of control.  EVERYBODY needs to stop and rethink what this is  REALLY all about…an innocent child who is suffering.  Calling people names and posting  personal information such as addresses and names of children is unacceptable.  We do not want our SONS NAME or OUR NAME to be affiliated with any of this bickering, bashing, name calling, lies and cursing that is being done on both sides.  This unacceptable behavior has forced us to make the decision to stop everything and give it ALL a rest. 



Thank  you to all who have been supportive of us, but we aren't accomplishing anything other than creating opportunity for more problems evidenced by what we are seeing now. We do not have the energy and the strength to deal with all this and tend to our son who needs our full attention.    We have to make a decision that will be good for our son. The things we have seen just sickens us. WHAT POSSESSES people to be so malicious and evil and call it good?





To the majority of you out there who didn't participate in this nonsense, our apologies but we know you will understand that we can no longer share Kaleb's story and endure these attacks and  have to take a break and tend to our son who is the most important thing in our life. Things need to calm down. OUR FAMILY DOES NOT DESERVE TO BE PUT AT RISK for the sake of soap opera drama and the public's entertainment.  It is physically, spiritually and mentally exhausting. Please understand where we are coming from. Please put yourself in our shoes. We wish that it didn't come down to this but it has.



Please Please Please pray for these people.  Please continue to pray for my son. Prayer is all we need. We need nothing else.



The PO Box and Paypal donation accounts are being shut down. 



If you would like to make a donation to help Kaleb and those who are suffering like him, make a donation to the National Shaken Baby Alliance in Kaleb's name, directed to the Family Support Section.  The information is as follows:



The Shaken Baby ..:namespace prefix = st1 ns = "urn:schemas-microsoft-com:office:smarttags" />Alliance
Family Support Division
4516 Boat Club Road, Suite 114
Fort Worth, TX 76135



www.shakenbaby.org



Thank you to all who have supported us in every way. We will never be able to express our gratitude enough.  Kaleb's story got so big, so fast, too fast!… The most important thing that all of this has done is brought awareness to SBS, possibly saving another child's life.  Thousands of people have seen what damage is done when a child is shaken. We hope that because Kaleb's story is so well known that it will save another child's life and provide education to everyone.  This would be the best gift of all, that Kaleb's life has not been in vain.  We would never wish the heartache and brokenness that we have felt on anyone. We are going through the most difficult time in our lives. We have to depend on God to make this evil act right. We trust that in Him,  it all will be made right.



Our son's life has a price tag of $5,000.00 which isn't fair.  We pray that justice will be served, and to the fullest extent of the law.



We need to advocate to change the laws. There needs to be tougher penalties for child abusers. They should have to register just like sex offenders do. They should be put away for a lot longer time then just 30 years. This whole experience has changed our direction in life completely. We want to do all we can to get awareness out there. We want to start volunteering with our local SBS alliance. If you don't have a SBS alliance in your home town, then create one. We want to be there for families that go through this the same way that all of you have been there for us. By taking this breather, we are able to regroup and focus on what is most important, our son, sharing his story with others, and making people aware of the tragedy we have been through and to be there for those who experience it as well.  It will take time to get through our own crisis to be able to give to others…..we are learning daily about SBS and need to resolve our own difficulties before attempting to help others. 



All of you who have stuck by our family through this stressful time, we THANK YOU!    Thank you from the bottom of our hearts for all that has been done for our baby boy. One day we will tell Kaleb about how he was once America's baby. We will tell him about all who loved him from thousands of miles away.  We will update you again when all is calm and we can be adults in interacting and having our opinions without risking our family's lives and the safety of our children.



Thank you



Kristy, Joshua, and Kaleb Schwade and Family

[alliekat]

Good for them! 

[emmy_dreamy]

Update on Kaleb's condition:

http://blog.myspace.com/index.cfm?fuseaction=blog.view&friendID=197879 646&blogID=316656410



October 6, 2007 - Saturday

Giant LEAPS Forward!


Wow! Things have been going so well for Kaleb. He is getting stronger and stronger each day and we are so proud and thankful. Since my last update Kaleb had his sleep study and the results were good. He is able to keep his oxygen levels up and shows no seizure like activity!!! I believe that when he goes through his sleepy periods, his brain is actually healing. I know that is what is going on. I mean he is truely doing awesome. He has been excelling in therapies! In speech therapy he is starting to swallow pretty consistently and occasionally sucks and in physical therapy he is starting to get a tiny bit of head control. He is starting to show so much personally. Last night I was playing with Kaleb's arm and he would actually lift it up and push my face away. It was cute. He would make this cute little tickle face. He looks so healthy and happy. We finally got his wheelchair/stoller and he absolutely loves it. We put him in it during the day and he just looks around. He has strated to make little baby noises also. When I hold him and talk to him he will make noises back at me.



This is truely a miracle for the boy that was supposed to be in a consistent vegatative state. AMEN! I still pray every day though... I know the God isn't finished with him yet. His first birthday will be the BIGGEST milestone that he will accomplish!

[Peavey]

I thought they stopped posting his updates a while back because someone had misappropriated their information? 

[IvannaTrailer]

[quote author=Peavey link=topic=7976.msg561281#msg561281 date=1191758878]
I thought they stopped posting his updates a while back because someone had misappropriated their information? 
[/quote]

Guess they changed their mind. (Which just furthers my belief that though I am sure they are sad, they are also greedy attention whores.)

[Peavey]

[quote author=IvannaTrailer link=topic=7976.msg561297#msg561297 date=1191763463]
Guess they changed their mind. (Which just furthers my belief that though I am sure they are sad, they are also greedy attention whores.)
[/quote]

Well, in all honesty, it is extremely economically advantageous for them to continue publicizing their story.  I'm sure that the mom hasn't been back to work since the child was injured.  I'm sure that medical copayments add up.  Plus, at home Kaleb needs all manner of accommodations now, right? 

I have a bit of a problem with the takers -- the people that publicize their stories for profit.  I know people that have benefits when a family member gets cancer, but other people that wouldn't dream of asking for a handout in the same or similar situations.  This is hard for me to say, because I know a family personally that is holding benefits continually for a young family member with leukemia.  They have gotten over $80,000 in donations already!!

My mother had cancer for almost 10 years.  We never, not once, considered planning a benefit or asking other people to help pay our expenses.  My mother made just over $500/month from disability.  My mother's husband made $12 an hour.  My brother and I were in our 20s and I earned about $500/week; my brother even less -- but we managed.  My brother and I would feed them when they couldn't eat.  It was nobody else's responsibility to care for us.

[Karalicious]

In their defense, I think it just started out with her writing about it on her personal myspace and it snowballed.

I'm subscribed to her blog, and she's never really stopped the updates. She just used to do it every day and now she does it every couple weeks or so. And they're no longer accepting money of any kind.

[IvannaTrailer]

[quote author=Karalicious link=topic=7976.msg561344#msg561344 date=1191773241]
In their defense, I think it just started out with her writing about it on her personal myspace and it snowballed.

I'm subscribed to her blog, and she's never really stopped the updates. She just used to do it every day and now she does it every couple weeks or so. And they're no longer accepting money of any kind.
[/quote]

I am just jaded and suspicious in general. I do not mean to be so rude and offensive; its just how I am. I have learned to be a somewhat private person when it comes to my child's health. People form some sort of weird unhealthy attachments to people in these situations and its frightening. I feel horrible for this family and for everything they are going through, I just kind of feel that they were asking for the trouble by being so public about everything. I am glad they stopped before something more serious than harassment happened. They really have suffered enough and they still have a very, very long road ahead of them.

[Peavey]

[quote author=Karalicious link=topic=7976.msg561344#msg561344 date=1191773241]
In their defense, I think it just started out with her writing about it on her personal myspace and it snowballed.

I'm subscribed to her blog, and she's never really stopped the updates. She just used to do it every day and now she does it every couple weeks or so. And they're no longer accepting money of any kind.
[/quote]

I think that the money part was where this got contentious for many people.  I thought I read in one of her posts that they had to move to opening packages in a location that was outside of her home because there were so many presents and such coming to their house. 

This is absolutely a sad story -- a tragic and awful one.  But I don't think that anyone should economically benefit from tragedy.  I just think that it dilutes the worth of what she's doing/done on many other levels.

[Karalicious]

Ivanna and Peavey, I agree with both of you. I'm skeptical too. And I'm a bitch lol.


This story is just soo sad to me cause she considers slight head control to be a huge leap forward. Ryan never was that bad, so I can't even imagine. I really wonder what makes one child to take the same abuse so completely differently? I mean, I'm sure severity plays a part...but they said Ryan had damage equivalent to a five story fall. And he's 98% fine now. (he has some vision problems) it's just fascinating to me.

[Peavey]

[quote author=Karalicious link=topic=7976.msg562250#msg562250 date=1191858923]
Ivanna and Peavey, I agree with both of you. I'm skeptical too. And I'm a bitch lol.


This story is just soo sad to me cause she considers slight head control to be a huge leap forward. Ryan never was that bad, so I can't even imagine. I really wonder what makes one child to take the same abuse so completely differently? I mean, I'm sure severity plays a part...but they said Ryan had damage equivalent to a five story fall. And he's 98% fine now. (he has some vision problems) it's just fascinating to me.
[/quote]

I can't believe she hasn't lost hope at this point.  I think that she is desperate to believe in a miracle, so any measure of improvement is magnified in her eyes.  Nothing would please me more than that child making a full recovery. Do I believe that's even possible?  Not for a second.  But I'm not his mother.

[IvannaTrailer]

[quote author=Peavey link=topic=7976.msg561304#msg561304 date=1191766341]
Well, in all honesty, it is extremely economically advantageous for them to continue publicizing their story.  I'm sure that the mom hasn't been back to work since the child was injured.  I'm sure that medical copayments add up.  Plus, at home Kaleb needs all manner of accommodations now, right? 

I have a bit of a problem with the takers -- the people that publicize their stories for profit.  I know people that have benefits when a family member gets cancer, but other people that wouldn't dream of asking for a handout in the same or similar situations.  This is hard for me to say, because I know a family personally that is holding benefits continually for a young family member with leukemia.  They have gotten over $80,000 in donations already!!

My mother had cancer for almost 10 years.  We never, not once, considered planning a benefit or asking other people to help pay our expenses.  My mother made just over $500/month from disability.  My mother's husband made $12 an hour.  My brother and I were in our 20s and I earned about $500/week; my brother even less -- but we managed.  My brother and I would feed them when they couldn't eat.  It was nobody else's responsibility to care for us.
[/quote]

Most states have waiver plans for kids like this. My daughter is disabled and we receive nursing care and medical supplies for her. She is on one of these waiver programs. The state only counts HER income and not household income. Expenses for these children are outrageous, I know first hand. My daughter has a trach, feeding tube, developmental delays, mental health concerns, bulbar palsy, mild cerebral palsy, respiratory insufficeincy... the list goes on. When we have had problems with things (some things just aren't covered) my family has helped a lot. Not one time have I advertised and publicized her problems for personal gain. Its bad enough I have had to ask my family for so much help over the last 10 years, I'll be damned if I am going to post all of our personal business all over the web, along with our P.O. box for people to send us shit. There is one site that tells my daughter history, and I just posted it there because it was really helpful to read other families' storys when she got her trach. We have never had a benefit or anything for her. We have spent months at a time at the hospital, we still travel an hour away two to three times a week for therapy and for appointments.