Updates
5/27/2010
Update
I wish that each of you could spend one day with me and know that what you see in a few minutes is not all that I am! I know most of you see a boy who does nothing but sit in his chair and eat and sleep, but what you don't see is my smiles when I want to smile, I move my arms on command. I cry when I am hurt, and I love to be touched, I love to be talked to and I know you are there by my side! I know my family's voices and I respond differently to each one! No one knows me like my Mommy does! She knows whatever it is that I need without words, and if she doesn't at the moment she figures it out very quickly! I know when I want to be in bed sleeping I have a schedule and I like sticking to it and get very grouchy when I am not on my schedule! I like riding in the car, I don't like therapy but my Mommy says I need it and so far she has been right about what I need whether I like it or not! I do like the hyperbaric oxygen chamber though and that cool guy who puts me in it! He knows me, he see's me like I would want everyone to see me! I am not your normal everyday kid but I am me, and those who know and love me don't think about the way I am they think about who I am and they love me!
One of these days maybe something will change in my life and I will be able to do more than I do right now, but for now I am content, I am loved and cared for and that is what keeps me strong and keeps me happy and keeps me going!
My family believes in Miracles and because of me I have made miracles happen for other kids because if not for me my family would have never known about Near Drowning and what it meant and families who are experiencing it now have somewhere to turn because my Grandparents especially my Papaw started a Foundation for Near Drowning Children and help other families not only get in touch with other families who are going through this journey in the beginning but being able to help these families finacially! So, make sure you go to the Hugs Foundation website at www.hugs4ndc.com
and do whatever you can do to help the families who don't have a family like mine finacially and to get them the therapy they need for their child so that child has a chance to be the best that he/she can be! We all have different recovery and these families need you to get there!
Thank You all for everything you do for me!!!
Happy 9th Birthday Seth
Cake was made by Cousin Tawnesha
Cousin Kayleigh and Seth, Kayleigh is six days older than Seth!
UPDATES
December 15th,2009
Happy 9th Birthday Seth
December 1, 2009
It just doesn't seem like it was a year ago that I updated Seth's page. Jill is much better at this but she has not had a computer until now, Dad and Mom broke down and bought her one for birthday! Seth is doing very well, staying healthy this year even when his sister has been sick several times with colds and tonsils! Seth has been much more alert and looking around more! I have been suffering such guilt since I have had my fall and my arm never completely healed and I can't lift more than 5 pounds with my left arm, so I am very little help to Jill unless Gene can be with me to watch him! I do still have him over once in awhile to watch him so Jill can have some sort of a life on the week ends and spend quality time with Autumn! He is not walking or talking, he is not sitting up, he is not doing even close to what we thought he would be doing after 7 years, but we are still so very blessed to have him with us! If we could not communitate with Seth, and show him and feel his love we might not feel so blessed, but he is an amazingly strong little boy, and still brings us so much joy! God has blessed us in so many ways through Seth! I have to say I understand Ron's anger about Seth's accident, he was not there when it happened so he can not possibly understand how fast it happened and it would have happened whether he was there or not! If only he could see all the good that Seth's accident has brought to our lives, and showed us our purpose in life! If we could change what happened that day we would give our own lives to never have experienced it, but for whatever reason it did happen and it has changed our lives forever! It has brought us into so many families lives that have gone through this before and since Seth's accident! Jill and I share a bond no one else in our family could possibly know. We share the guilt and the pain and the heartache of being the two who were there when Seth had his accident, but we also know nothing can prevent fate and this was Seth's fate! Many marriages can't last through tragedy, and it is because the parent not there blames the person who was! But some work it out knowing that the parent who was there suffers more pain than the parent who was not there! We have to look at Seth everyday and wonder "if only" but there is no "if only" life is what it is and nothing could have changed that day! Jill and I feel blessed that it was us there as we would never want anyone to live with and feel the guilt we feel day after day! I have to remember that Seth's Dad suffered a huge loss that dreadful day and his pain is no less than our's he does his best and he is still here for Seth and some people can't say that! So, I will remember in my times of wanting to lay blame some where not to do it, it only causes those in pain more pain! Ron loves his son there is no question about that and we have all suffered a great loss! I am working on letting that guilt finally go, because God is giving me the strength to forgive myself and moving forward! I love my grandson and would have given anything not to have had this happen but it did and there is no turning back we just have to move forward! We hope you will all continue to pray for Seth and our family! And please check out our website at www.hugs4ndc.com as we have found our purpose in all of this and now we are able to help other families who can not afford treatments and equipment that is required for all the kids and families we have met through all of this! We have been blessed through all of this and we have to believe that is why we had to experience this! I have to tell you I have the most incredible husband in the world, and Seth has the most incredible Papaw!
Our blessings far out way our saddness! God Bless you all and please visit our wesite at www.hugs4ndc.com
Please remember we are still recycling for Seth, so for more information on that contact
Gene at 805 304-3835
or
Peggy at 805 304-3959
Nov.1st 2008
Due to an illness I have been unable to do any updates until now.
I am sorry for the long delay in updates but as most of you know I fell on October 30th 2007, broke my arm and got an infection after my first surgery and after 4 surgeries done by one Dr. almost a year in and out of hospitals and sick in bed and finally one surgery done by one Great Dr. at USC Medical Center
Dr.John Minoru Itamura
And Mostly the Grace of God I am well again and ready to update!
Seth is doing well... He is healthy, and is and always will be our inspiration! After 6 years since Seth's accident I have to admit we were all more than discouraged with how slow Seth's progress has been. Although the hardest thing was the 5 year mark, because I think Jill and I had anticipated more than anyone else that Seth would have had his miracle and be close to well again. Why we thought the 5 year mark would be the big year we don't know but it really took it's toll on Jill. It was a bad year for her, losing me as her second hand helper, and then Ron moving up north, she felt so alone, and caring for Seth all on her own was something she never had to do... She had moved out on her own and Seth was going to continue to stay with me at night so she could get her sleep and do all the things she did with him during the day but then I had my fall a week or two later and could not care for Seth at all... It was something we never expected and Jill had moved into a two story apartment with about 20 stairs to climb which was fine because she would not be carrying Seth up the stairs, but instead she ended up doing just that every single day and there was no elevator. Jill and I both think my accident was a blessing being able to let Jill see she could care for Seth alone! Today she has a bottom apartment with no stairs but she has only been in it about 2 months now, so for more than a year she carried Seth up and down stairs at least twice a day! He now weighs approximately 50 lbs and the Dr. put him on a slight diet because he is a little chubby and he is also worried that he will outweigh Jill before he is 10. Can you believe Seth will be 8 years old December 15th, and what a big boy!
To us a Miracle was something we expected to happen in a certian amount of time and way! We wanted to see Seth at almost 100% by now, and the saddness it brought us when it didn't happen at that 5 year mark was very heart breaking! Althought Seth had made more progress in those 5 years than the Dr's ever thought he would, after 5 years it just didn't seem like enough at all... Jill and I never talked about our feelings when we hit the 5 year mark, and it wasn't until this year that we finally talked about the effects it had on our lives knowing that although people who didn't see Seth everyday did not see him the way we did... Seth communicates with us in his own way and God has given us the ability to know what it is that he wants or needs! There are regrets that some treatments were bypassed early on for other ones, but there were so many different things we heard about from other parents we tried what Jill felt most important at the time! And being a parent doesn't come with a manual and certianly when your child has an accident like Seth you certianly don't get a manual from the hospital on how to care for the child but you are sent home with the sad fact that your child probably won't be around very long! So, while you have your child you try to do everything possible to fix the damage done! Our guilt over what happen with Seth will always be in the back of our minds because you always wonder what you could have done differently, but we know in our hearts that there was nothing we could have done, because this was Seth's destiny! Seth has been a blessing to our lives since his accident because without him and his accident we would never have known about near drown children, and the pain and agony the families go through and realizing that we were blessed with Gene's ability to do fundraiser's to help other families! And to educate families who this tragic accident has not happened to and hopefully prevent it from happening! As long as Seth stays healthy and continues to make even the smallest progress each year, and we know he is happy and content, we feel more blessed than anyone can ever know, to have Seth just the way he is, and with us! Just to hold him, love him, and able to make him smile is enough for us! And God will make any big decisions about Seth and what he wants for him...For now God just guides us to the things that keep him healthy and happy, and blesses our lives with the Foundation and the ability to help others! As most of us who have had this happen to a child in their family, they know just how people who think an accident like this can never happen to them because for some reason they have better parenting skills than we do, and that we must have been away from the child and not watching them for this to happen, and well yes we too were guilty of the same thing until it happened to us and we realized how fast it happens! And even more important we realized that the kids who nearly drown don't always come out of it with no damage to the brain, the fact is more children than not come out of it with some form of brain damage! With each child we meet we see differences in the way the childs brain is damaged! Many are like Seth, and some are better and some are worse, but God chose not to take them, and after the heartache of what comes when you take them home and they are no longer the child they were you just feel blessed to still be able to hold them, love them, and still have them with you, and you have that hope of the miracle to come! And if only you realized then the big miracle has already happened...You still have a child to love and hold and that's more than some parents have, and those parents would give anything to have the child you have rather than no child at all! Everything happens for a reason, and how anyone can get through life without believing in God and having him in your life is beyond me because I can tell you without GOD in our life we would never have survived the tragedy we suffered with Seth! Our Family grew stronger and we held together. Sadly Jill and Ron did not hold together but one thing for certian their love for their children has not changed, and like most parents they have difference of opinions in the way things are done but they work it out! For a long time I had hopes of the two of them getting together which didn't happen, and now all I wish for them both is a happiness in life and a continued friendship and love for their children! Ron will always have a special place in our hearts as his in laws, and we never forget Seth was his only son, he had many plans for his future with his son, and he never was able to have those plans fulfilled... But Jill lost just as much, and when the accident happened the heartache for both of them was to much for them to deal with and try and make their marriage work as well! Some families find it easier to tell people their child has CP because your not judged as a parent if your child is born with a disability, but bringing awareness to near drowning and explaining it is no diffrent than any other childhood accident that can cause something so drastic to happen and change your life forever... But near drowning seems to be the one that some people just can't help but blame the parents without knowing how the accident happened or what it does to a family! No one can blame you more than you blame yourself! We love Seth so very much, he was such an amazing little boy, and such a mommy's boy...Just the biggest joy of our life, just like our other grandchildren, and losing him truely made me feel like I would never survive the pain in my heart, I felt I didn't do my job, and being the one who ask Jill to get out of the spa to help me do some dumb decorating that I could have done alone was my fault Seth was left alone! But in time with the faith in God I have I realized fate is fate and you can't change it! And then Seth began to bless so many other lives that we realized this is what it is all about! So, for now we are all fine, blessed with the love of God, and praying our foundation will attract somone special who can really help us bring in the kind of money to really bless each and every family with all that they need and want for their child. And even more be able to help with research to heal the brain!
This update was not a huge success story about Seth as we would have liked but in reality the success Seth has had is huge no matter how you look at it! Jill does have some nursing now which is great and she is great! So, Jill has a little more freedom and I am healing so I can do a little more with Seth!
Seth is still doing:
Hyperbarics Oxygen Treatments
More Physical Therapy
Cranial treatments
And the other things that Jill is doing that I don't remember! But he keeps busy as usual during the week! He had the summer off of most therapies, which is the usual... I will be adding more pictures very soon... God bless you all and thank you again for the many prayers and the love and support!
Sept 15, 2007
Well it is a bittersweet day today...It has been 5 years since Seth's accident, So often I remember the day like it was yesterday, wishing to go back to those few seconds and change everything! I know Jill and I had high hopes for Seth by this time. But I actually got past this day without even thinking about what day it was until Jill said something to me about it! There are still so many days that I look at Seth and I just cry. There are days when I wake up and I just don't want to see anyone or talk to anyone, my heart still hurts,most days are good, but there are times when I see a pictures of Seth before the accident or a child Seth's age at the time of the accident and it just hurts so terribly bad! But today is to be a day of celebration, because we have Seth, and he has made so much progress... Maybe he can't sit up, or do things some of the things other kids do, but he can communicate with us, and he seems to understand us! He is such a joy to just have him to love and hold! He is healthy and he is loved and well taken care of, and we are so blessed! When I ask him to move his arms he tries so hard and I know he understands, and he plays with his toy when we tell him too! Each of us in this house have our bad days, but we support each other and we all know it is ok to cry, we mourn the loss of the little boy who on that day was playing with his toy bugs and making me and his mommy eat them, and we woould make faces and tell him they were yucky and he would laugh so hard! He loved his toy bugs! He loved Bob the Builder, and Toy story! He was all boy! We have so many pictures of him before that day and we know we lost that little boy but we have this incredibly strong willed and amazing new little boy who is so different from the little boy we lost but yet just as much as a blessing and he has turned our lives totally around... We have met some amazing people through this tragedy, we have been able to talk about the accident and make people realize that this same tragedy could hit any family at anytime! I think because we are so open about Seth and his accident we have educated people making them understand that this accident is no different than any other accident where your child gets hurt and even worse dies! You ask any parent who's child has drowned and did not come back and they would tell you they would give anything to hold their child one more time, or just sit and smell them, whatever they could have they would take!
We learned that there are many families out there that don't have the help or support they need, and have to work and don't have time to do fundraisers, and that is why we started the Hugs Foundation! Seth has his therapy paid for with the help of all the generous people in our community and now they are willing to help other families thru the Hugs Foundation! No one really see's all of Seth's progresses, because they don't live with him, but they do see a loved, healthy, happy little boy, who brings so much joy to our lives! I have read comments and many of them thru blogs when a drowning is reported, and people write such negative things about the families and it makes me so sad! Yes... don't get me wrong there are parents who were totally neglectful when their child's accident happened, but those cases are few and far between! Just know that not all days are happy days for us, and we never forget that day, but we love our Seth, and he could never be loved more!
Thank you all who come to visit Seth's website for all your kind words and prayers...God bless you all!!
September 2, 2007
Something new for Seth is that Seth seems to do well eating soft foods by mouth even though Mommy doesn't give him alot at a time she gives him enough that you would know if he wasn't swallowing! It is definately time for a swallow study now. For all of you who prayed for Seth to beable to eat by mouth thank you...But most of all Thank God For Seth's Little Miracles, because each little Miracle will someday be one big Miracle! Yesterday we were out to eat and Seth isn't really very verble unless he has his passy valve on, but he was sure making some noises then! It just amazes me what a child that is a vegetable as the Dr's said he would be can do so much! He makes us understand him, and although those who don't see Seth on a daily basis would not see Seth's routine and how alert he is at home! Oh and what really gets me is that everytime we start to work with him and do some physical therapy he has learned to play possem and close his eyes and pretend to go to Sleep... Seth teaches us so much it really is amazing! Now our big job is to get him to a good Dr. who will work at getting his arms moving more and his hands open! God has blessed us so far so I am sure he will lead us in the right direction! Well I just wanted to share that bit of news with you all...
August 22nd, 2007
Seth survived another trip to Arizona, and he is doing better and better when we travel! His sleeping habits didn't change and his mood was good! We may try a longer trip one of these days soon! Well with school starting I guess trips are off for awhile because Autumn will be in school! Seth is on hiatis right now as we decide what is best and next for him! It's time to move on in a new direction with him for awhile! We have still not found a physical therapist to come to the home... That would sure be a blessing!
Seth has been going to his daddy's house for his week ends and he does very well with that as well... There was a time when Seth had to be in his own bed and no place else! He does not like being up past his 8:00 bedtime and if he is he will start vomiting and get real gunky... And the Dr's said he would never be more than a vegetable, well he knows what he wants and how to get it! If he is uncomfortable in anyway, he let's us know! He is getting so big! I just can not hardly pick him up anymore! Mommy is a bit stronger and younger so she can do it, but we need desperately need a male nurse one day in the near future! Now, if I get to pick him, I will make sure he is single, well built and loves kids! And maybe we will get a nurse and a great son in law...lol Well I can dream! We are still doing our recycling for Seth and that is an amazing fundraiser for him... It can be a lot of work but well worth it. Everyone we know and tell about it starts saving the cans and bottles, and we have to take them in about every week!
Seth has had a swing that we had on the swing set but it was always in the sun so he could not use it, well it is now hung on the patio and Seth gets to use it everyday! Seth has been showing signs of being much more alert and he is following new commands! He understands much more than we even know, but his body does not cooperate because the motor skills part of the brain was most damaged! Although he does do some things with his hands that we tell him to do!
Our Faith is strong and we will never give up trying whatever we can find!
Oh, Seth lost another tooth, but this time Mommy got it. I will post pictures soon!
July 10th 2007
Everyday seems like something new is going on with Seth lately. He is smiling when we talk to him now, so it doesn't seem to be just something he does when light triggers it! He is kinda on hiatis from therapy for the summer although he does his couple that he has here in town! He has been in the pool a couple of times and it has been really good for him, Jill takes him in and sits with him and he really relaxes, and after about 45 minutes she takes him out and lays him down and he will actually go to sleep and sleep for about half an hour to an hour! He always did love the pool! Some of you are probably thinking "how can they take him in the pool after what happen... Well, it was hard the first few times but we realized how much he loved it, so it is what we need to do for him... After almost five years our thinking and our lives have changed drastically and yet it gets easier, and if we didn't have faith in God as we do, we probably could not have kept going and made it through the heartache and pain we suffered! Do we still feel that pain, of course we all have those days but we support each other and remind each other that God gave us a very special Gift when he brought Seth back to us! He has been an amazing teacher for us, and made us realize that the importance of founding the Hugs Foundation (for near drowning children) is something that needed to be done, and although it will take alot of hard work to get it off the ground we won't stop! We know how expensive treatments and equipments are and there are families who have nothing, and no way of doing fundraiser's because they don't have the help, they don't have the support! It will be an incredible day when we can say to these families, we will make sure you have what you need!
The hardest thing of all is teaching people that all of the families who have had this tragedy in their lives are dedicated and loving parents and would do anything to make sure their child gets the best care with what they have available to them, and they never give up and each of them believe in Miracles! And that is the point we have to keep reminding people about. These parents did not go out and hold their child under water and thinking to themselves, "boy I sure would like to have a child with severe brain damage, what a great life sentence that would be, for loving my child."
This is not the way we planned our life to be, and my daughter certianly didn't plan to have her whole life turned upside down for the rest of her life! Yes we made a mistake, and no one will ever know our pain for that mistake... A daily reminder of what turning a blind eye away from your child for a few seconds, and thinking this can never happen to us! We love our children we protect them from harm, and the sad thing is accidents happen everyday, and a child is left hurt, killed or in our case with brain damage... Most people don't find their purpose in life, but Seth brought our's to us! And we will fight hard to make it a success for other families! We have made lifetime friends through our tragedy and we have friends who are devoted to helping us anyway they can, and we pray one day you will understand and see progress you never expected to see!
Just seeing Seth struggle to move his hands on command is an amazing sight for us, and seeing him play with a toy on command is a miracle, we are so very blessed... Only those of us who have a child with severe brain injury no matter how it came to be will ever know how we can honestly say we are blessed and mean it! So, when you see a family with a handicapped child don't be afraid to look or ask, because it is our way of theaching you! And to tell you what a blessing that child is in our lives!
I hope all who come here will get something out of all of this. And that near drowning will become an easy subjet to talk about without feeling like we are being judged!
No matter what we will never give up on what we do for Seth and the hundreds of other families who often can't bring themselves to talk about what happen because people are so judemental...
Believe me we were no different, our first thought when we would hear about a child who had a drowning or near drowning was the same, where were the parents, little did we know we would find out one day it only takes seconds and your life is forever changed!
And you can continue to die inside or believe that God is using you and has given you a purpose so figure out what it is and do it!!!
June 20th 2007
Well with the new changes in the website I am unable to update the way we we use to, so for now until I can figure it out, The updates will just be written out here...
There have been so many new things with Seth, I don't know where to begin... For one thing he is putting on weight and not making it easy on Gramma to pick him up...I don't know how Jill does it! Seth is beginning to really focus on people's faces and he really has to do some adjusting with his eyes to fix them on you, but he finally gets you focused in! That's a good sign.
We have decided Seth needs another swallow study, because his swallow is so much stronger and if he could have some foods by mouth that would be a start. For those of you who keep in touch you know how we go back and forth about the trache being removed... Well finally it has been decided, we are use to the trache and when Seth is sick it is so much easier to get him cleaned out from all the junk that gets him clogged up we can get all of it out and less chance of penumonia so when God gives us the sign that it is time then we will know! God had brought us his far, he will bring us through it all!
Seth Lost his first tooth s week or two ago So,that's all fine and good except we never found the tooth, But I did want to post the picture...Jill checks his teeth all the time but one day it wasn't there Anymore!!
