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ksalmine
February 27th, 2004, 07:05 AM
Hi everybody!
I would like to thank you all, especially Jessica and Rebecca, for this great forum. I was registered here first time abt 1,5 years ago because having a nephiew with severe Hunter's. Unfortunately I have been here much too seldom. I joined the forum on behalf of my sister and her family because we live in Finland and she doesn't speak English at all. But even all those few times we wrote/read something here made my sister very happy. Getting contact to other parents in similar situation.

I can remeber all those friendly messages we got after having introduced ourselves. I translated every word to her.

But I and my siter do not live very close each other, the language problems (hope you can understand this now!), lack of time etc., there is only bad reasons not to visit this forum.

And now on, we may visit even less frequently; my sister's dear son, Jussi-Pekka, passed away on February 23, 2004. He reached almost 21 years. This is a huge loss to my sister and her husband, and to us all, ofcourse.

Last 4 years, after J-P had finished his school, my sister did not do anything else but took care of J-P. She left home quite seldom and every time she was somewhere she had very hurry back to home because her biggest fear was that J-P would die when she is not present.

But, fortunately, she was present when J-P died. And so was J-P's dad also. They had been one week in hospital fighting against virus but finally J-P's strengths finished. He didn't seem to have much pain.

Now they are arranging beautiful funeral to him and we all try to go on living without him. Fortunately we have lots of happy memories and nobody can't take them away as long as we live.
All the best to you all! Katja

Tami
February 27th, 2004, 10:16 AM
Katja,

I'm soooooo sorry to hear about J-P's passing. Please know you and J-P parents are in my prayers.

Love and Hugs,
Tami


http://www.caringbridge.com/ca/slawson

Jessica
February 27th, 2004, 10:17 AM
Katja,
I'm so sorry to hear of the passing of your dear nephew Jp. :cry:

I’ve attended a few funerals for MPS children. While at one funeral this gentleman approached my very good friend Francis, and said, “Well it was better for him…you know that right? And now he’s in a better place.”

This is a common thing to hear at funerals, but this gentelman seemed so UN-KNOWING of what we as parents have lived with for so many years. I’m not disagreeing with him! Yes this child was in a better place, but what about the Mother? Is she now in a better place?

I don’t know why I took what this man said the wrong way, but I did. He was just being nice and it was wonderful he had come to the funeral.

I guess I was just grieving for my very good friend. All Francis did for 30+ years was take care of her two MPS sons.

I wondered, “how will her life be now? Will she be okay??"

Perhaps my thoughts were just being selfish. I was scared for my friend, but she's doing okay now. It took awhile, but she's living her life and is happy.

So, I will say to you, yes your nephew IS in a better place now. But I will also say, I’m so very sorry for your loss. More so, I’m sorry for the Mother’s loss. It is she, the caregiver, that will be lost for quite sometime until her life has readjusted. I pray healing on her heart and I pray that she is able to have a life full of happiness and have nothing but overwhelming fond memories of her son.

I also pray for healing for the entire family. I pray for healing and peace during this time of grief. And I thank God that Jp is now skipping clouds with angels and is now free of pain.

If you or your sister need us at anytime, we are here for you. Day or night.

~The Wellman Family

Priscilla Raftery
February 27th, 2004, 12:24 PM
Well, I can't say anything better than Jessica just did. My heart hurts, as it always does, when I hear of another MPS child losing their earthly battle. My prayers are absolutely with all of you and I hope you can continue to join us here from time to time, if only to talk with those who truly know and care. God bless ~ In sorrow, Priscilla & Joey

The Rea Family
February 27th, 2004, 01:13 PM
I am so sorry for your loss. My heart goes out to the family.

Carrie

Laura Brodie
February 27th, 2004, 02:30 PM
Katja and all of Jussi-Pekkas family, I remember your first posts and thinking how good it was that you had joined the forum from Finland.
I am so sorry for your loss of your lovely young man and my thoughts are with you and especially his mother.Please stay in touch with us Love Laura

Barbara Pryor
February 28th, 2004, 11:24 AM
Katja,
I remeber your first post also. I rember thinking that it was nice to hear from someone else who had a Hunter's nephew. Your information that you gave us about Jussi-Pekkas gave us hope for my nephew Andrew who was diagnosed with Hunter's also.
It will be hard for your sister and for you. Once you have taken care of someone for their whole life it is hard to do anything else because you were so used to taking care of them. You did it out of love but now that they are gone you are lost without them. I pray that you and your sister will find some sort of comfort out of all of this. She and you loved him for 21 wonderful years and you just can't get on with your life in one day. My heart goes out to all of your family.

Barbara

Sharon Cochenour
February 28th, 2004, 12:10 PM
Dear Katja,
I am sorry to hear of the passing of your nephew. I am glad that you have so many wonderful memories of him to carry in your heart forever. Please let your famly know they are in our thoughts and prayers.
Sharon

February 28th, 2004, 01:51 PM
Katja
I cannot add anything else but what has been said already .
You and your family are in my thoughts and prayers .
God bless
Anne

mom2cris
March 1st, 2004, 11:14 AM
We are truely sorry for your families loss. You are in our thoughts and prayers.

Nilda and Cristian

zachiesmom
March 2nd, 2004, 11:36 AM
I too will be praying for you and your sister during this very sad time, I am so sorry for your family's loss but I hope you can hold on to the happy memories longer than these sad times. We are all here for you anytime you need us, we hope you can soon find some peace in this new stage of your lives and we will all surely be here to help! God Bless you all from Brenda, John and Zachariah Haggett.

THEmps2mom
March 3rd, 2004, 02:36 PM
Dear Katja, I just wanted to let you know how very sorry I am to hear about your nephew. It breaks my heart to hear about another MPS child loosing their battle. You and your family will be in my prayers.

God Bless!
Kris

ChrisMPS2
March 9th, 2004, 06:38 AM
Dear Katja,

I am so sorry to hear about your nephew. I hope your family is doing OK. A few times I have been at home without William and I kept thinking I shouldn't be outside so long without checking on him, or inside I was listening for him as if he were upstairs. It was a scary snapshot of what my life would be like without him. Please tell your sister that I understand a little of what it is like for her and that I think she is a wonderful Mom.

Chris

Rebecca
March 9th, 2004, 10:24 AM
I am terribly sorry to hear of you and your sisters loss. My thoughts and prayers are with your family and Jussi-Pekka. Although the pain that you are feeling can only be slightly conforted by our thoughts and prayers, please know that we are here for you and your sister!
:group