Thursday, August 4, 2016

Fading Away

She is fading away slowly. It is agony to watch.

This process has hurt for years, but lately, seeing the slow, steady, horrible decline, causes so much physical pain. I literally feel like vomiting when I see her suffer. I ache to the core of my being.

And that is just me.

She is in pain.

She is slow.

She does not fight as much when she is left out. She doesn't have it left.

That makes everything all the worse for me.

Yet, to the rest of the world, all is fine and as it should be. People simply state "how sad" and then ignore her and me because it hurts to acknowledge reality. And then I ache more because I am so much more alone than ever before.

We are getting more help, but we are drowning. All MS and I do is work. There is no down time. EVER.

I am exhausted physically, mentally, and in every way possible.

And as bad as I feel, she feels so much worse. And I can't help her. She won't let me. She told me last night that she doesn't want me to worry more. And that hurts.

I have nothing left to give, but I have to. I have no choice. I have no choice but to keep pushing forward. I HAVE NO CHOICE.

And if one person says: "you have to take care of you" or any other bullshit like that, I may have to strangle you. That just shows how alone I truly am because you don't know and don't care to try to know. There is no taking care of me while my daughter is dying. I have to take care of her, her brother, my job (because I have to afford care), my house (because I can't afford to lose it), my husband (because I can't afford to lose him). There is no time to take care of me. Shit, I haven't even had a haircut since January. I shouldn't be taking the time for this, but I had to because I need to get some of the pain out. I told her she needs to try to journal or talk to let go of the bad feelings. How can I preach it, if I don't practice.


  1. I'm a mother. I have had feelings of panic and hopelessness when one of my sons suffered through a minor ailment. I know that feeling in the pit of the stomach when it seems they might not have the best life has to offer. I realize that it was not much compared with what you are going through. I've followed your hope and heartbreak for many years. I've pored over photos of your darling girl--your whole family really. I've had feelings of hope as you've explored what treatments are available. I've had feelings of despair when you've reached the limits of what medicine can do for Izzy. I wish I could be closer to actually give you a hug, a shoulder on which you could cry as long as you wanted. I wish I had words to console a mother who has grieved, is grieving and will grieve. I wish I had just a little magic to send all of you.


    1. Thank you so much for your constant support through the years, Bonnie. You are very much appreciated.

  2. I am not one to comment, but somehow I connected to your blog years ago and felt compelled to post something to you.

    I am a mom who nearly lost her son as an infant and my son's life course was altered in the blink of a PICU moniter. He was a baby and in a coma for almost a week. He was in constant pain even while he could not be wakened. It was a miracle he survived. I have walked with that dull fear in my gut, that dread like a cloak over everything you do. It is lonely and terrible and no words can make it go away.

    I am lucky to have my son, however ravaged. I know that, but that fear does not go lightly into the night. It sticks. You cannot do anything but go through it. Writing it down is sheer brilliance not only to get it out into the world so people like me feel less alone, but as a testament to this awful time in your life. I forgot so much in the thick of it that I had to ask people near to me to help me reconstruct the events and feelings of my own life later. These writings will be so important later.

    There is no "me time" or respite. I am so so sorry you are going through this. One mom to another, my heart is heavy for you and your family. Sending positive thoughts and virtual hugs.


    1. Thank you for your note. I truly appreciate the sentiment, positive thoughts, and virtual hugs.


Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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