haveing a hard time still

i have such a hard time with my daughters heart prob she has long q t syndrom and sick sinus syndrome then she got epelpsy at the age of 10 she died onme on christmas morning an 8 times after that it so hard i am scarried evey time she leave on her own , but i hope to share more with other moms who have been there may help me out.. it has caused me probs like im dizzy dail now from all the stress anyone else going throue this to ok hope to chat w someone

4 Comments

Hi Michelle,

by Gellia2 - 2008-05-28 03:05:00

Like Pacergirl, I was the heart problem in my family. Diagnosed in 1952 at age 4 with 3rd degree block, this was way before pacemakers, my parents were told to take me home to die. The one thing I learned was my mother passionately fought for me to have as normal a life as possible. She wanted me to LIVE as normally as any other little girl. And, I did.
As a mother now myself, how she fought the demons of fear every time she walked into my room is beyond me, but she did. And, now at nearly age 60 and having had a pacemaker for 33 years, I can only feel such gratitude that she let me live this normal life.
As I watched my own children grow, if I had been faced with the same thing, I hoped that I would have been able to do the same. I wasn't, but I have had this wonderful life because my mother allowed me to live it right from the very beginning. I will always be grateful.
I hope you will be able to find the strength to do the same.
We are here to share your stories and your fears.
All the best to you.
Gellia

Sending additional support

by harley63 - 2008-05-28 08:05:10

Hi Michelle~

As stated by pacergirl and jessie.. I too send you the strength to carry on and work though this difficult time. As a Mother I can only relate with the feelings/concerns of sending our precious children out into the world when they are not ill. We are here for you.. please come for support, encouragement, insight and a friend(s).

Harley63

hi

by jessie - 2008-05-28 12:05:24

i to am sorry you are going thru this with your daughter. i know the fear it brings to watch a sick one leave the house and go into the world when there is a chance harm could come to them. i send you the ability to hand it over to a higher power and live your life in peace with this. you will be a little stressed at first but you need to still send her out. she needs to live her life as you do as well. i send you prayers and hugs. jessie

hugs for you... dear little one

by pacergirl - 2008-05-28 12:05:38

When I said "dear little one" I am referring to you...

I am the heart problem in my family.... and I am 54 years. I can't say I fit the profile of someone you can relate with, but I wanted to send you comforting hugs anyway. I am so sorry you have to go through this, I know you must be weary of always being brave and looking out for your dear daughter. I won't say the typical things people say at times like this. That is for the others. From me tonight I send you my hugs and my support from the bottom of my faulty heart. May you feel the love and understanding I send to you tonight. You are not alone.... Bless you, be strong when you can and reach out to the wonderful people here when you can use some help. Hugs to you dear little one... may you have a restful night.
loves and hugs,
Susie/Pacergirl

You know you're wired when...

You can hear your heartbeat in your cell phone.

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Pacemakers are very reliable devices.