Tuesday, September 9, 2014

Scattered Grief

There is a catch in the back of my throat; my chest seizes up; I have difficulty breathing; then the tears well so big and fat.  I try to hold them in, but I can't.  I am balling uncontrollably in my office, at the grocery store, in my car.  There is every reason and no reason whatsoever for my walls crumbling down.

At the end of summer, I came clean on DQ's carepage about her starting morphine and having to make funeral plans.  At least I thought I was coming clean. That WAS the plan.  So many times, the stages we go through with the Dancing Queen are not real until I post it to her carepage and just as many times, I have held back when posting there.  This time, I purposefully put more out there because I hurt so much more.  It has been utterly exhausting to try and be up beat for everybody else. Yet, when I posted, I only put a fraction of the pain I felt that I needed to write that day, so I didn't really come clean.

And each day, it hurts all the more.  Putting it out there didn't help like it normally does.  It didn't cement my feelings nor give me insight like I have become accustomed. Instead, I am overtaken by waves grief, made more acute when I am pointedly asked how I am doing because the public now *knows* life is so much harder than I had let on most of the summer.

But what am I supposed to say to the random person who I have never really talked to before?  I respond with my pat answer: "I am doing as well as can be expected", but on the inside, I'm falling apart.  I posted to the carepage so I wouldn't have to explain myself to the outer rings of my social sphere. Instead, I have to explain myself more often in a way that sucks.  Just sucks.

I know life is only going to get harder and harder with each passing day.  How will I survive?  I'm not sure any more. I've only made it this far because I had no other choice, but I may not have the energy to continue.

I am so tired.

And when I sleep, my dreams are riddled with nightmares in which some evil has stolen my girl from me.  I spend my nights searching and searching for her all by myself because nobody will help.  I can never find her though.

When her cries of terror rip through the silence of the night, waking me instantly, I know that she is having the same exact dream as me.  She always does--some evil steals her away, leaving her all alone. How can I make it better for her when it won't be?

And what about TRex?  He hides; he won't talk; he won't engage. Are we losing him forever? How can I bring him back before it is too late when he always pushes away, not wanting to burden us?

How has life changed so much?


  1. I wish I could actually hug you and let you cry on my shoulder. I think you can only do what you are doing. How can any parent wrap their minds around the thought of losing a precious child? Yet she will never be lost to anyone that has seen her bright smile and zest for life as she has to live it. You are a strong family and I think that will carry TRex through. I certainly hope so.


    1. Thank you, Bonnie. I know you would and knowing that does help me. You should go hug my sweet husband today as he is in your neck of the woods for work ;-)

      Thank you!

    2. I would most certainly do that--and, take him some lunch!! Hope he isn't being drenched. We have dire weather warnings but, so far, just heavy rain and now the sun is coming out.

    3. I'm sure he'd be okay drenched because that would mean he is out and about. They took a bus over this morning for a conference and will be busing it back tonight. Over 10 hours in a small, uncomfortable bus, with no place to even rest a head and packed so tight, he has no personal space. A walk in the rain would probably be nice!

    4. Not good! I hope he at least got a good meal!

  2. I have the same dreams and the same thoughts and I have noticed I have taken to lying about how things are going. No one wants or needs to hear the truth. My tipping point was sitting in the hospital and looking at the half-dozens specialists caring for my daughter and realizing they are running out of stuff to do or try. Our good days look like really bad days from a year ago. No one knows what to say. And even the doctors and the nurses look on the verge of tears. They are speechless.

    And, I am here, with my computer in front of me, understanding everything you write and not having anything to say except. You will survive this, this is so awful, but you will survive this and your beautiful DQ will never go away as long as you keep her with you. This is what I tell myself about my mermaid. I find myself thinking of her funeral and how I will visit her to tell her about what is going on when her sickness is done. Is it okay to cheat and rename death the end of dying.
    And, more and more, I run home from work praying I can my mermaid from her from the feeding tube and hold her for hours on end and that I will get a few smiles and some Callie song. I realized recently after this last hospitalization, Cal doesn't sing so much anymore. To be sure, it wasn't really singing, so much as the last remnants of speech, a sort of cooing I called Callie song, but, we don't hear it so much anymore.

    So, I am here, sitting thousands of miles from you and it helps me to know you are there feeling just as I do. So, if we must give up our girls, at least, we can't hold on to the fact that we love them so fearlessly, and so completely, that it feels like we will die with them. But, I know we won't actually die, it will just feel like we are. And know that there is someone who feels just like you here in Philadelphia. That is all I can offer you, and, possibly, the comfort in knowing you have done everything you could, you never ran away or hid from loving the DQ even though loving her so purely will break you apart. You have loved her to the point of your own obliteration. That is the sign of true love, but it also in this incredible love I can assure you, your love will not destroy you....it just has to be this way.


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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