Re: 10 weeks after karlee beth's death

[Guest guest]

DAvonne,

YOur post made me smile and cry all at the same time. Your honesty and bravery in dealing with this terrible loss made me realize how very much i have to be thankful for and that even though we live with the spectre of mito in our house every day i am still privileged to help my kids fight the good fight. Thanks for coming back and letting us know how you're doing.

love to you

ruth

mom to Mitch (9 1/2) and Lexi (6 1./2) both mito affected and my treasures

[Guest guest]

Dear Davonne,

I am so sorry for all the heartache you are going through. In some ways,

time helps and in some ways it is still the same. My daughter went to heaven

almost 2 years ago.This time of yer is so hard because the last 2 months of

her life were horrible and every day has a different memory. The holidays

are so hard. Thanksgiving marks the first Holiday where she was very sick in

the hospital , but we still had hope. She was gone before xmas to spend it

with Jesus. Some days I am really well, but some days it the pain is so fesh

and new again. I do promise that as time goes on, the tears will be less

often and joy (a different joy completely) will slowly start to come back. I

do not think that life will ever be the same again, but we have to learn to

live the different life we have. When you have lived through the death of

you child, life is completely different and your outlook is never the same.

I met a woman who lost her 16 year old over 40 years ago, and she told me

that her heart still aches and as she spoke about her, tears welled up in

her eyes. I only want you to know that you are in my prayers for healing

and strength. May God bless you,

 

 

Suhad Haddad  --  Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna

with same disease.

Samya's Memorial Site: www.samyahaddad.com/.org/.net

Email: Suhad1970@...

Alt Email: Suhad@...

AiM Chat: Suhad1970

10 weeks after karlee beth's death

hi friends.

i just got on computer and thought i would take a few minutes and let

ya'll know how we are doing. i struggle very hard to get through the

day, i cry alot. i go to karlee beth's grave and i try to stay busy

outside working and enjoying karlee's garden. kip is vey quiet, he

doesnt say alot. kaitlin is good, she just looks at me when i'm

crying and upset, she makes me little cards and lay them on the

pillow they say " dear moma, please be happy and smile karlee is in

heaven with GOD " . karson is very unique. he is 18mos older than

karlee, he asks about her everyday,several times a day. he says that

he can see her and that she is soo happy and laughing. that makes me

feel so good, but still very very sad, my heart hurts. my kids keep

me here and keep me going. they need me. please continue to pray for

me.

i looked back at some of the posts. i read one about how long biopsy

results would take, karlee had hers on jan23 2004, we got the results

march12,2004 and then we went and seen dr,shoffner on march 30. and

he confirmed everything, i think he was most amazed with karlee

beth's mri film rather than the muscle biopsy{he only read the

specimen, a surgeon here in knoxville done it and sent it to

atlanta}. dr. shoffner did not think any of the supplements would

help karlee beth. i would like for you all to have mri's done, i feel

they show alot. she was a very special baby, she touched so many

lives in her short little time. i am so proud to say i am her moma.

just this week i went to the grocery store and walmart,that was a big

step. where we live everybody knows everybody. i love to talk about

karlee beth its just sad going out without her and seeing people. we

went to dollywood this past sunday, i seen this little girl in a

kidkart just like karlee's, same feeding pump and looked to be her

age. i lost it!!! i ran to these people, i had to know what was wrong

with this baby, her adoptive parents told me she was shook so bad

that it caused all these problems. that is soooo sad. i felt so bad

for this this little girl. she was the same age as karlee, she will

turn 2 on nov 23.

so sorry i got carried away. i felt the need to write ya'll.

kim knovy hi i hope your girls are doing good! geri-anne, love you

lots, deb, thanks for your talks. to you all,that i didnt mention,

because i made so many friends and the prayers were wonderful. thanks

so much for

everything. this is group taught me so much about mitochondrial

disease, i just didnt think that it would hit so soon and that it

would kill my baby. i hope that they will find a cure for this

monster. remember my baby and please remember me and my family the

next weeks are going to be hard for me. what am i saying everyday has

been hard and the longer that goes by it doesnt get any easier.

please if anyone has a question, i will try to help.

i wish you all good days.

love,

davonne

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