Hello To All

[Tam2u68]

Hi everyone............This is my first post. My 16 1/2 year old daughter, Amanda, Passed away from ALS In January 2006. I know.......To young for ALS or to die. But it's true. My prayers and love are with EVERYONE. I look forward to forming new freindships and talking with you.

[dana]

I am so so sorry Tam. I cannot even believe that someone as young as 16 could possibly even get this disease. I am sure it has been a tough road for your family. I bet Amanda is watching over your family now, and you all have your own personal guardian angel. I hope that you find some comfort here and can share more of your story and give others advice and also build some friendships. It seems like we are all in this together.
God bless,
Dana

[Barbie4]

Just a quick note to tell you how sorry I am to hear about your Daughter. My thoughts are with you.

Barb

[ChrissyWho]

I am so sorry to hear about your loss. It is heartbreaking. My thoughts are with you.

Chris

[Granny]

Dear Tam,
Thank you for coming here and sharing your story with us. I am so sorry to hear of your daughter, so young to have ALS.
Please come back and talk with us whenever you feel like it. You will be an inspiration to us!
Hugs and prayers, Leah

[hope]

I am so sorry to hear about your daughter.

Sandy.

[Tam2u68]

Thank you. I am ready to talk about my daughter, Amanda. She was born June 15, 1989. A very difficult birth. Due to the hospitals error, she was born with Cerebral Palsy, epilepsy and Legally blind. She was given 7 years to live as the CP was severe. But she was a lot like me (a fighter) and she made it past and was then given a full life as she was striving very well. She didnt talk, walk, feed herself, toilet etc... but she amazingly showed and gave the most incredible love I have ever witnessed in my life. About 2 years ago, she started choking on her food and by trying everything I could think of medically and on my own, she lost too much weight (50 pounds) and we had to have a G-tube "Installed" August 2004. She seemed to be doing better until May of 2005. She started to loose her balance (She walked on her knees) and a some point I realized the palm of her habd layed flat against the palm of her wrist. The and the simple tasks she was able to do, was no more. After 4 months of every imaginable test (invasive and non-invasine) The most telling test was the EMG/NVS - she was diagnosed with ALS (Sept 2005). It was the hardest thing for me to believe that she had ALS and CP. OH, I screamed, cried, denied and then excepted as I new it would not be long and my time with her and loving her was the most important feeling to me. She was placed on Palliative Care (Wonderful) the first part of October and then we just loved her. She was and still is my Sunshine.
She progressed VERY rapid and Christmas day was the only day she was alert, happy and awake. On January 13, 2006, she peacefully passed away in my arms. That was my Prayer to GOD. I could not hold her when she was born, but please let me hold her when she goes home. He answers Prayers. The journey with her was amazing and the love she gave was incredible. She was 16 1/2 years old. I hope to help, talk to and just be there for anyone who may need me. God Bless Tammy

[marlo]

Hello Tammy,

I'm sorry you have suffered such a terrible loss, she was young to get ALS. I think your just what this forum needs. Sounds like you took a very bad situation and choose to cherish every moment with your daughter instead of getting bitter about it. Not many people could or would do that. We tend instead to feel sorry for ourselves. Thank you for sharing your story ,, that it may encourage all of us ,, to fight the good fight,, with a good attitude.

Love and Prayers
Marlo

[Tam2u68]

So sorry I have not replied to all of your kind words. It has been a rough few months, but the Sun is starting to peak out a bit. This site is so filled with the kindest and loving individuals. Thank you soooooo much.

Tammy

[MaggyQ]

I see that I neglected to log in here and say HELLO!

That's what one gets for failing to scroll down far enough!

This is really a great site and is made so by the community of good-hearted
people who post here.

[Al]

We'll do what we can do to help Tammy. AL.

[MtPockets]

Thank you so much for sharing with us about dear Amanda. As I read your story I could not help but cry, which is unusual for an old salt like me.

I thought that with the storms that she had to go through, she reminded me of a little rainbow. The rainbow only shows up during the storms and the rain, but when it does it's so beautiful. I found a small picture of one and thought it would help me and maybe you, if every time we see a rainbow we can remember what a blessing Amanda was and always will be to us.
May God comfort you as no other could,
AL

[Tam2u68]

I was finally able to shrink a picture of myself and Amanda to fit the forum guidelines :)
I have to tell you Pockets........... I will now look at rainbows not only as God's promise to us all, but as maybe Amanda sliding down them with all her beauty and her loving smile. God bless you all. I finally realized after all these months, you can't greive alone and close off family and friends. That was a very unhealthy approach on my part. And as much as I didnt want it to, life does go on. As I have read your posts, I realized I really wasnt alone. (Like I have felt for 6 months now) Thank you all so much. Let The HEALING Begin
Tammy

[MtPockets]

:-D What a beautiful little angel she is. Thanks so much for sharing her with us. There you go got me tearing up again. I know she is smiling down on you now and probably glad that you have found others to share the pain.

We will all get to share in her joy and peace when we get to heaven. May God be with you in a special way in the coming weeks to help ease your pain.

Rainbows are always very special to me. It not only reminds me of God's promise,but of the many loved ones who are waiting for us on the other side.

Speaking of rain, it's lightning outside so better get off computer before lose it.
God Bless
AL

[Tam2u68]

I'm Sorry Pocket's................didn't mean to make more tears. But are they not a great release to our heavy hearts...........:) Your rainbow picture is so beautiful. Ya know, you are so right..............one day, we ALL will be together one day in God's beautiful Kingdom. It's funny you should call Amanda an "Angel". My Mom called Amanda "Pumpkin Angel".
Let me tell you a little story why:
When Amanda was 2 1/2 she could still not eat solid foods, so she was still on baby foods. sweet potatoe's and squash were her favorite. well, her carortine level went to 650. Normal was suppose to be 50-100. hee hee so she had turned orange. She looked liked a "Pumpkin" and she was my moms little "Angel" so hence the nickname ""Pumpkin Angel"

Anyway........If you can send some rain to California, I would be thankful............NO lightning though.
Tammy

[MtPockets]

Got me started again. Seems like Amanda knew I needed a good cry I guess. When you get a chance take a look under new posts at If tomorrow starts without me. I hope it is a blessing to those that read it.
God Bless
AL
:cry:

[hezbull]

Sorry to hear about what happened to your daughter..this is bitter life, part of life.. :( take care, and stay blessed..

[Tam2u68]

Thank you hezbull :) Too bad we dont get a script to this life like hollywood....hee hee hee God bless you too. Tammy

[LittleHeart]

I agree Tam.Although just think how many people would demand
rewrites if we did.:-D

[ladyinred]

hi im ne online i dont have als but my mom died in june 2005. it been a year i still cant get with this i think about her from the time i wake up from the time i go to bed, i was there help her from beginnng to end. what do i do? how do i let go? i dont think i want to/need help from people who unerstand what im talkin about(not the people that keep saying go on with my life i have 3 boys i thinkl i have been depressed for a year or more i dont know ive never felt like this before whatis depression like?

[Al]

Hi lady in red. I am so sorry for your loss. The idea is never to let go of the good and fond memories you have of your mom. The painful memories have to be dealt with. I know it is hard but after a year you should be starting to be able to deal with this. I can feel the pain in your posting. Do you have a good friend or family member you can talk this through with? You need someone that you can open up to and not feel judged. No one really knows or understands your pain but you need to find someone to confide in. After a year, if you have no one then I think you should seek professional help. I know they don't know you or understand you but in time they might be able to get to know you and help you through this. Depression is not something to be ashamed of. It happens to a lot of us and one of the first steps is recognizing that it is there. I hope this helps you. We do care here. AL.

[Tam2u68]

Welcome To a New Family LadyinRed. And To "Papa"AL..........Very eloquently put. Lady, there is no right or wrong way in healing. Only you can choose too take the next step in the grief process. believe ME....................I wanted the whole world to stop when my daughter passed away while I grieved. but it didnt. and they didnt. and life does have to go on. Depression is terrible. I laid in my bed for 6 months, cut off from everyone i knew and loved. I realized, on my part, it was selfish and destructive and extremely unhealthy. But, one must identify it to conquer it. Death needs to be shared together and alone. I figured that out. there is a very intimate side to it that I can not even share with Amanda's step father. Ya know lady, you will always think of your mother. forever. your memories are your hearts photographs. Therapy is very helpful in these situations. Believe me. But please understand Lady, it's not about "Getting on with you life" it's about taking the next step in healing your broken heart for yourself and for your family. I am sure those individuals did not intend to hurt you, they just care for you and your 3 boys. God speed to you and yours. tammy