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GSD Remembrances and Condolences Page 3
I am sitting hear in tears. I just checked my emails and saw your post on
the GSD net and had to write you. I am so sorry this has happened. I am
just at a loss of words for you and Bobby. Please know that you are in our
prayers and thoughts. Please let me know if there is anything at all we can
do to help you through this. I am just sitting here in shock and praying
that you guys are okay.
Please write when you can and I will call you.
Melinda
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Oh my god! This is awful! I pray that you and your family will have the
strength to get through this.
Only my mother can sympathize with you because my older sister died before I
was born. She was only about a year old and had GSD 1 B. Then I came along &
had the same thing. I'm sure she was scared each time she was expecting.
Then my brother came who doesn't have GSD.
Here are a few quotes I like:
Some people come into our lives, leave footprints on our hearts, and we are
never, ever the same.
Deep are the memories and precious they stay, no passing of time can take
them away.
The best things in life are the people we love, the places we’ve been & the
memories we’ve made along the way.
Giving your time and attention to those you love is the greatest thing you
can do on this earth.
You are someone very special who can never be replaced. Your memory in my
life can never be erased.
Time cannot steal the memories that we carry in our hearts or take away the
happy of which you were part. Forever in my heart.
I hope this can give you a little comfort.
Ambreen 23
1 B, Canada
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My husband and I pray that you and your family find comfort in the arms of
the Lord right now. We are so sorry that your son passed away. I know we
don't know each other, but my son has GSD3, and my heart goes out to you
immensely. Just know that you are being prayed for.
"Every word of God is pure; He is a shield to those who put their trust in
him."
Proverbs 30: 5
Love, Jessica (Uriah's mom, age 5)
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I know there are no words that I can say to take away the pain you must be
feeling, but I will say this: You did NOT fail Joshua. I'll say it again -
you did not fail. There are so many people here, on this list - who have not
had their own medical/physical issues to contend with as well - who have
also despaired whether or not their children are going to survive. And
others have sadly lost their children - like you. It's not you who have
failed them, it's the missing enzyme and the disease that has failed them.
But we are all gifts, and there is a reason we are born, whether we are lent
to our parents for a few years, or somehow manage to hang in there - perhaps
it is to humble others or perhaps it is to make some sort of difference in
the world - I don't know...but I do believe each and every one of us -
parents included - are special.
Joshua has had a profound effect on many people on this list. I think we
have all cried for you , for ourselves and for the other children with GSD,
over this past week and if it gives you some comfort - please know that his
death was not in vain, your goal to help children with mental/eating issues
is not aiming too high - there are many of us who do indeed have food, as
well as emotional issues and I believe that this, as well as more overall
awareness of GSD, is something that does need to be addressed. And if Joshua
manages to make a difference to even one child's self esteem, or the
knowledge of Joshua's battle with food, steers one more parent to ensuring
their child's issues are dealt with then it has not been in vain.
I am sure Josh was an exceptional young man who touched many people's lives.
And I know, he won't be forgotten.
Lisa 33
Type 3, London UK
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My heart aches for you and for Josh. I wish I'd had the chance to meet him.
I wish I'd had the chance to hear him and his dad play their music together.
I wish I could have seen him with his dog. From your friend's description I
almost could picture Josh cresting a hill on a foggy West Virginia morning,
his dog at his side and a guitar slung over his shoulder.
I don't imagine there is much to console the heart of a mother who has lost
her beloved son. Knowing that Josh was so loved, so well remembered at his
funeral must warm your heart. Outside that funeral home, his GSD family
mourned him, too. People across the globe, people who never met him
remembered him, too.
I am not a religious person but I believe the Universe will look out for
you, for your husband, for Josh. Somewhere, he is part of the great fabric
of the world. He is Josh, whole, without pain, without struggle without
worry.
Josh will forever be part of you. Now and always, your heart will ache with
an emptiness only those who have lost a child can ever understand.
Certainly, you did not fail Josh. You gave him 19 years of pure,
unfaltering love that only a Mom can. He was better for that. You are
better for that.
I am so sorry for the loss of your son. So very sorry!
Lori Sedore, mom to Brawlee, age 8, type 1a and Granger, age 20 months,
unaffected
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Wen I first started reading I felt my heart ache. Not for a minute have I
regretted Joshua. He was the most precious gift of my life. He was my only
one and my husband and I would have given our lives for him. Lynn is right.
Yes, the teasing started with Josh when he was young but it didn't really
begin to hurt until middle school. Josh played to ball and basketball too.
He had a couple rough friends who worried me to death but Josh begged me not
to stand up for him. By this time mom's concerns were an embarrassment. Dr.
Weinstein asked me my goal for the fund in Joshua's honor and I say
mental/eating issues. But now it's another story unless we live next door to
Dr. W and home school. I'm beginning to think my goal too high. I just
wanted to tell you all about Josh's service. It was awesome. I hear there
were around 500 people. People were standing because there were no more
chairs. His private counselor by chance was a minister and led the service.
His high school counselor talked about how when Josh took his guitar out the
other students put theirs away and watched him. And about the
constant sweats that I knew as well embarrassed him. I firmly believe that
the eating disorder was the cause of his death. Dr. W said I'd never truly
know but he also agreed that from age 4 until we found him when Josh was
around 15 Josh had no real good care. But he did so wonderfully when he was
younger I felt confident. Until puberty that is. That's when it became
apparent that the cs was not enough. No matter what Josh struggled with
food. Josh was strong, smart and compassionate. He not only had GSD but a
blind mom. I loved Lynn's description of him "gentle giant". And what Dr. W
said, he struggled in silence. His dad and I are the only ones who really
know what he felt and how he suffered. Lynn is all right the younger
generation is where the real hope lies. Thanks to Dr. W these kids really
have a chance. Josh thought nobody loved him? I hope he was there watching.
Yesterday was a very hard day. I cried all day to the point of hysterias.
But only you parents can imagine. I know in my heart Joshua is free from
this dreadful disease and is happy. But guess what I felt? Is he really
okay? Is he getting his cs? A feeling of desperation filled me. And then my
friend Melinda Peck called. She said we were an inspiration to them. But
right now I still feel like I failed.
Becky, mom of Joshua
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There are no words that can ever do justice to the pain you are feeling
right now. At some point when you are ready and if you want to please call
me. My oldest child, Angel, died March 28th 2005 from a sudden illness not
associated to gsd. I do have 2 other children with gsd 1a. If I can be of
any support to you please email or call me. If I don't answer leave your name.
A minister told me after Angel died (and these are the only comforting words
during that time) "Take all of the pain, sadness and grief and use it as a
testimony of the life your child lived. And know that all of it is a measure
of the love you will always have for your child." You, your family and
Joshua are in my thoughts and prayers.
Valerie
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Our heartfelt sympathy goes out to you. Even though we have never meet our
bonds are linked through GSD and a portion of your pain flows to us. I pray
you can be comforted in the times ahead knowing that you provided Joshua
with all the best you could and that he now no longer suffers with all the
pressures that this disease causes. May God bless you and enable you to be
strengthened.
From Phillip and Liz, parents of 18 year old Melissa type 1b
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I don't understand. You must be insane with questions and pain.
What can I do? I can be there in a plane's flight.
Kerry-Lynn
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I have waited until now to write to you.. I received the story you wrote
about your life with Josh, and I have saved it, along with my own ones about
David. Now it is even more important to save those precious words.
I am sorry that it has taken me a while to reply... reading your post about
Josh's passing had me in tears, on that day I was also overwhelmed with the
state of the bushfire tragedy here in Victoria and had just had word that
two people we know had been affected, one lost her house, cars, sheds, and
two horses burned alive, the other lost an aunty, uncle and two young
cousins.
It just seemed that life sucked for everyone on that day.
I can't find the words to say how I feel about Josh, and words to comfort
you just won't come from my fingers - nothing sounds right when I type it,
nothing feels right when I read it.
I feel so guilty that David is still alive and yet Josh is not, but I know
that Josh suffered more than David has, their diseases are the same but
different.
I am full of wonder and awe for you, how you have overcome your own
disabilities and cared for Josh the way you did, what a mother you are, what
a wonderful role model to all other mothers of kids with a GSD.
I am so sorry for your loss, I wanted to say that with much more feeling and
emotion, I wish you could hear me say it so you know that it is not just
"words on a screen" but that I really mean what I am saying.
I wish we lived in the same country so that I could throw my arms around you
and hug away your tears, and give you strength, though I feel you have more
than many of us.
I know in my heart that Josh would have loved you with all he had to give,
and that he would never have taken you for granted.. I know that because I
know David is the same with me. Most people cannot understand the bond we
have with our special kids, I know that no one really understands the love
and special closeness that David and I share... he explained it to one of
his friends in front of me the other day, saying that "Mum and I have this
very weird, very unusual, very close and loving relationship - we aren't
like other mothers and sons" Even my husband doesn't really get it, though
he has more of an idea than most, having come into my life just as David was
being diagnosed (he was 19 then).
Becky I don't want to ramble on, please know that you and your husband are
in my thoughts, and in my heart. Please know that I would love to stay in
touch with you, aside from the GSDnet.. but also please know that I totally
understand if you would prefer not to.
Kim
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I know it's not right for me to say, but I understand why you would want to
just die.
We, as mothers, spend our whole exsistence loving and caring for our
children. When we have one with an illness, we are even MORE focused on
that funtion. Then, top it off by having only ONE child and it is
multiplied even more. I can't possibly imagine your grief. Or, maybe I can
as I have often thought about the prospect of loosing Austin, and, have come
close a few times.
How do you go on now? I think it would be correct to say that Josh would
want you to. I know Austin has said before that he feels bad that so much
of my energy and worry has gone into his care. Maybe Josh would be glad
that you could focus on YOUR health, and your needs. At least I can be
positive that he would not want you to suffer and be sad. Easier said then
done, huh?
Time will help. A little. For now maybe you just focus on the tasks at
hand. You are no stranger to work and to strife. You are strong and smart.
Maybe the day to day things that need to get done can divert your heart and
head from crumbling. Don't think about the future. Just live the moment in
front of you and get to the next moment.
Don't shut down. Tell me if there is anything I can do.
Kerry-Lynn
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Not a day goes by that I don't think about your family and Josh. We have
almost lost our son a couple of times but that don't count. I can only
imagine the pain that you are going through. I know all the condolences in
the world will never make a difference. I can't even fathum a world without
my son. So I know that this is probably the hardest thing you will ever have
to go through. Try and stay strong. Find comfort that one day you will be
together again. Your son will never die, he will live on forever in the
hearts of those who knew and loved him. Take advantage of all your friends
old and new. Again I am so sorry. Let me know if there is anything that our
family can do to help you through this please don't hesitate to ask.
Please send me a memorial card. Email it if you can.
Mechelle Berry-Belman
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Lisa is totally right. You did not fail. But, you are grieving a terrible
loss- and feeling guilty, and feeling as if you've failed, and the "you
didn't do enough", and "you should have done this", and "you should have
done that", and "if only you had done this", or "if only you had done that"
is very often, I think, part of the grieving process so it perhaps wouldn't
be surprising if you were feeling it too.
After my brother died many years ago I spent hours and hours and hours and
hours going through it all, re-living it with my parents, telling them they
were not bad parents, and it was not their fault. And they spent ages with
me. I was only 16 but I felt guilty too - "I knew him best so I should have
noticed something was wrong" "there were signs and I didn't spot them".
I promise you Becky- I don't know you and I never knew your beloved Josh and
I live on the other side of the world- but I still promise you, that you had
no hand in this and although it's so hard, you must try not to blame
yourself and stop your husband from blaming himself and have an absolute
pact on not blaming each other.
Alex
London UK
Mum to William 10 yrs 1a
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I doubt you will ever get over the loss of your beloved son. Certainly, you
will grieve for his absence for all of your days. I am grateful that
through the GSD net, I got a glimpse of his life. Take care.
Lori, mom to Brawlee, age 8, type 1a
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I am really hurting for you guys and Mark and I feel the same way about you
and Bobby. We love you guys too. You have been an inspiration to us and I
really hope that you can take the time that you need to find some kind of
peace with it all. I can't even begin to imagine what you are feeling, but
please know that you are in our prayers. Josh was an amazing young man and
he has touched so many lives. Because of him, you all have helped so many
people. His life here was for a purpose. Remember that. I have a picture
of him and Bobby at the conference and I am amazed at how talented he was.
Even though he might not have felt like it sometimes, I know that he was an
inspiration to so many (including Tessa). These kids trying to live normal
lives is so tough.
We will be thinking of you on Friday and saying a prayer that you and Bobby
can find the strength to get through all of this.
I really appreciate you sending us one of his cards. Take care of yourselves
and take the time you need.
Melinda
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I am writing to express my condolences for the death of your son, Joshua. I
can only imagine the pain you must be feeling. My thoughts are with you and
your family at this difficult time.
I am a member of the listserv and was wondering if I could post your mailing
address to the listserv for those of us who would like to send cards and
donations? We are all thinking of you.
Sincerely, Lori
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My heart goes out to you! I can't even begin to imagine how you are feeling
right now! My thoughts will be with you as you get through the next few
weeks and months.
Lisa
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I’m so terribly sorry for your loss. We will miss Josh greatly. If there is
anything any of us can do for you and your family, please do not hesitate to
ask.
My deepest sympathies,
Laurie Fiske
Research Coordinator
Glycogen Storage Disease Program
University of Florida
PO Box 100296
Gainesville, FL 32610
352-273-6655
www.glycogenstoragedisease.com
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I have missed emailing with you also. maybe this is something i can offer.
someone willing to listen...and care. please know that i am here for you.
ready just to be, listen...take life one day at a time with you.
I hope you can find some moment of peace....and soon two moments....until
life allows you to string a handful together....
All my love dear one, Rebecca
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I have been ill and away from my computer until today when I found your
email. Oh Becky, I am so, so sorry for your immeasurable loss. I can only
begin to imagine your heart breaks. I know how dearly you treasure your
Joshua and always will. You worked tirelessly to understand his needs and
provide for him. You have been his wonderful and adoring mother, and always
will be.
Please know that you are in my thoughts, heart and prayers.
Is there anything I can do for you?
All my love, Rebecca
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If you get a chance please email me your phone #. I can't seem to find it.
I would like to give you a call sometime when you feel like talking. Also,
if you could send me your address too.
Mark and I are really praying for you all. You have been an amazing help to
us and I just hope you can find some kind of comfort knowing that you were
such wonderful parents to Josh. Please let Bobby know that we are praying
for both of you. You are both such an inspiration to us.
Melinda
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My heart is with you and I will pray for Josh. I don't know how to describe
it in words...but I share your feelings.
Kate Thailand.
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There is hope. God Bless YOU. You are in our prayers.
Sean- Father to Chance 1a
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You have had to bear so very much, and now the unbearable has happened. I
will not pretend to even imagine what you are going through. It is so very
unfair that Josh had to suffer so much, and I can only hope that he has
found the peace he couldn't seem to find in this difficult life. Our
children are so very brave.
Is there anything that we can do to help? I know that probably sounds like a
hollow offer, but I don't know what else to say. Please know that Josh will
be remembered as a wonderful child who left much too soon.
Lynn, Stu and Casey
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I just read your post on the GSDnet and wanted to get you our address.
I hope today is a little better day for you. I felt such heart ache for you
last night. I know that it is very
difficult and I really hope you can find some strength to get through. I
just don't know what to say. I can't pretend to know how you feel. I am
scared for you all and for Tessa. Like I said last night, it could very
easily be any one of us parents in your shoes right now. I am sorry that
this had to happen to Josh. Right now it is just so hard to make sense of
it all.
I have been thinking of the memorial fund and trying to figure a way to
reach some of the other kids. You write so beautifully, could you do
something with that. Maybe some articles, a children’s book??
Well, our address is 204 Plum Tree Drive, Big Cove Tannery, PA 17212. Any
time you feel like talking email me and I'll call or you can call me
anytime.
Still praying for you all.
Melinda
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Becky, I read the notes about your son. My thoughts and prayers are with
you and your family today. Our son is 25 and has GSD1a.
Michelle Detwiler, Buckley, WA
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Words cannot express the immense sadness I feel for you both on the loss of
your son. Being the mother of Hillary 18(type 1A), I know and understand
the struggles you had to endure in order to maintain Joshua’s health. While
Hillary’s G.S.D. has been in control for many years, we now struggle with
systemic arthritis which affects her eye, knee, foot, and wrist. So I guess
we were always meant to worry about her health. It’s not easy dealing with a
child’s illness or in the worst possible case as is with your Joshua’s
untimely passing. Just know that you did your best to nurture, love, and
support Josh.
Malka, Michael, Jonathan (21 carrier), and Hillary (type 1A) Hart
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Words cannot erase your pain, but please know there are many who share your
grief. Our thoughts and prayers are with you during this very sad time.
Barb & Steve Hefter
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I don’t know you personally but I am on the GSDnet because I have a son (13)
who also has GSD/Pompe. My heart aches for you and your husband. Thank you
for postin the wonderful words by Joshua’s doctor and by Lynn. He sounded
like an amazing young man. I don’t think he could have been given better
parents. It takes a person of extraordinary strength to be so courageous.
May you find comfort and love in His light.
Sabrina Low-Dumond and Family
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You are in our thoughts and prayers. Can’t imagine what you are going
through. We’ve followed your story on the GSDlistserve. God bless your
family.
Brian, Kathy, Rylee (1A), Reese (unaffected)
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We are so sorry for your loss. Josh seemed like a very special person, and
we understand his loss will create a large vacancy in your life. You are in
our thoughts.
Lucie, Brent, and Jessie (4 years old, 1A) Belot
GSDnet friends and attendees to the Hershey conference in 2006
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Becky,
I read your Alive Alone article and then went page by page through the website that you created to remember Josh. I don’t remember the last time that I cried, but your article and website drove me to tears tonight thinking about the pain that you have had to endure. Josh is missed tremendously, and it still bothers me that our team could not help him more. I am comforted by the dreams that you have had and knowing that Josh is no longer suffering. It was also wonderful to read about the happy times for Josh from your website.
Please stay strong and take care of yourself.
David
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David A. Weinstein, M.D, M.M.Sc.
Director; Glycogen Storage Disease Program
Associate Professor
University of Florida College of Medicine
(352) 273-5823 (office)
(352) 265-0857 (fax)
www.glycogenstoragedisease.com
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