DVDizzy Forum

I just wanted to share this on this with you many of whom I have gotten to know over the years.

My son Xavier Michael Wolfe passed away on July 27th 2009 he was 22 and half months old. He had been born with a disablity called Hydranencephaly which means the brain did not form before he was born and only had the brain stem and his stron little spirit to function with. They told us he would not live through birth and when he did they said he would not make it throught the day and then they said he would only live a few days and then a week then a few weeks, then a month and then we stopped listening. He defied the odds every day and has been so strong he has lived a very wonderful little life without alot of illness up until May and since then has been fighting off multiple respiratory virus that would not affect most people but with his weakened immune system he could not fight them off very easily and ended up with alot of lung damage from them. And finally passed away from complications that they caused. We will miss him very much but are glad that he is frr from the pain that they he has been in.

Xavier I miss and love you!

I'm sorry to hear that, Papa Bear.

I am very sorry for your loss, Papa Bear. Hopefully, your son is now in a better place. May he rest in peace.

I am so very sorry for your loss. God bless you and your family.

Wow, that's really sad. I can't stop crying. I can't imagine what you're going through, but I'll be praying for you. At least your son isn't struggling now. May he rest in peace.

My thoughts and prayers are with you and your family.

I'm sorry for your loss. On the plus side, in defiance of what you were told to expect, you did get 22 and a half months, which is a pretty wonderful gift and which, judging just from the two photos you posted, I'm sure were fully enjoyed by both you and Xavier. My thoughts are with you and your son. I can only imagine how difficult this must be.

His spirit was amazing. I just want to say it is really amazing to hear that even without a fully developed brain, he still lived because of his spirit, which will now be in a better place.

When he got sick, may I ask how long that was for, before he passed away, and what it was like? He had things that made it much less painful, right?

I will pray for him and you, and am so happy you gave him the gift of life as he was an everlasting gift in himself.

Papa Bear wrote:They told us he would not live through birth and when he did they said he would not make it throught the day and then they said he would only live a few days and then a week then a few weeks, then a month and then we stopped listening. He defied the odds every day and has been so strong he has lived a very wonderful little life

That's all any of us can ask for, Papa Bear. Life, however short and fleeting it may be, is a beautiful thing. My thoughts and prayers are with you and your family.

albert

Oh dear lord...

I just finished watching a show in which a man sued his wife to let him go to Oregon and end his life due to multiple cancers in his body, which cause a debate over euthanasia to erupt.

I read this story and it made me sad, but at the same time it inspired me because even though the child was destined to die sooner or later everyone still went on. Life didn't stop because of death, and that I think it wonderful.

My deepest sympathies and hope you and your family gain the strength to continue to honor his memory.

I offer my condolences to you and your family, Papa Bear. I will keep you and your family in my prayers.

That is some serious heartbreaking stuff right here...I mean really. I hope that he's in a much better place now...

If you don't mind me asking was he your only child?

Im sorry to hear that my wishes and prayers are with you

It truly sounds like you appreciated every moment you had with him, and I know he did as well.

I'll pray for you in this difficult time.

I am truly sorry for your loss. May he rest in peace. My thoughts and prayers go to your family.

I am so so sorry. No parent should lose their child. At work, I take magazine orders and now and then someone calls to cancel because the person has deceased, and every time, it causes a little choking in my throat, but what's even worse is when they said their daughter or son died, I can't help but feel my eyes gets wet over the thought. *hugs* Try and look at it as the time you had with him as a glorious gift. Don't dwell on the bad times, think of the good times. I will keep your son, you, and your family in my thoughts tonight.

This breaks my heart. I'm so sorry to hear of your loss, Papa Bear. While I can't begin to imagine what you must be going through, I feel for you tremendously and offer my prayers to you and your family. Xavier is a beautiful name for a beautiful child. I'm sure he enriched the time he was able to spend with you and I'm sure you were everything to him. I hope you are able to find strength and comfort and God's blessing as you cope and that you can find some joy in remembering the joy he is feeling in a place without pain until you meet again.

-Aaron

Luke wrote:I'm sorry for your loss. On the plus side, in defiance of what you were told to expect, you did get 22 and a half months, which is a pretty wonderful gift and which, judging just from the two photos you posted, I'm sure were fully enjoyed by both you and Xavier. My thoughts are with you and your son. I can only imagine how difficult this must be.

Yes Luke, we are grateful for the time we got to spend with him and to get to know him, and will look forward to being with him again.

Disney Duster wrote: When he got sick, may I ask how long that was for, before he passed away, and what it was like? He had things that made it much less painful, right?

Disney Duster, He had been fairly healthy for his condition most of his life up until May when he got what is called the Adenovirus and at first we were told it was a bronchitis and told it would get better with medication but it continued to get worse so about a week later we took him to Primary Children's Hospital in Utah we are from Idaho but they are way better when it comes to children with special needs and they admitted him for overnight stay to watch him and within 15 minutes of admit both of his lungs collapased and he had to be intubated. We were there for about 4 weeks and he had finally gooten better and had been breathing on his own again so we went home and in less than a week were at home and his chest had sunken in around the center so we rushed him to local ER and they lifeflighted him back to Salt Lake via a Jet. and again had to be intubated this time because of the Paraflu which he probaly got while there the first time. And he kept getting slightly better and then would fall back to needing full support and did this a few times and the doctors said there had been to much permanet damage done from the viruses and intubation and suggested a few possible surgical options of which he had slim chances of coming out of because he does not do well with anesthesia when healthy and we've almost lost him on a few simple surgeries he has a hard time regain ability to breath again and in weakend state most likely would not have made it through so we tried to give him more time to heal but kept getting worse and was in a lot of pain so we had to make decision on whether to keep forcing him back with the machines or to let him go and as parents we finally had decided to let him go in what we felt was best for him. We hated to have him suffer and but did not want to loose him either and after weighing all options we did not feel that we could provide him with a quality of life (pain free and machine free) so we let him go. A descicion I will alwasy have to question and hope it was the best one unfortnatley we did not really have a good choice to choose so that was hard. But in his last couple days he was free from most pain thanks to medications and I was able to hold him up to my chest (our favorite snuggle position) for hte last hour of two as he slowly faded away. which was an awesome experience as well as something I will have nightmares of forever, such a hard thing to go through and feeling powerless to make him better. But I beleive he is in a better place and with our first two children of whom we lost to miscarriages. And my Grandma who passed away last month I am sure is watching and loving him and his siblings for us. (sorry for length of answer to your question but thanks for your concern)

CampbellzSoup wrote:If you don't mind me asking was he your only child?

CampbellzSoup, Yes he was our only child other than the two that we have lost from miscarriages.