[tri-wings] Re: good grief!

Dear Kristy,
Hi, and welcome here to the place that we are all grateful for, but  
wish we had never needed...
Congratulations for the wonderful 9 months that you had with your  
daughter Karly, and please accept my condolences on her passing.  No  
amount of time is ever enough to share with your child...
My son Ryan died from complications from T18 in Jan '04 at just under  
a year.  The first few weeks of learning to live without caring for  
him felt like living in a fish tank, under water, and being able to  
see the world but not quite be a part of it.  I felt guilty about the  
strangest things - like being well rested after a full nights sleep.   
It took me weeks to clean out his dresser, and to be honest we still  
have medical supplies that I hope I will never need again but just  
can't throw away (gauze from his g-tube dressing, latex gloves  
galore!)  You talk about your daughter's notebook - I still have both  
journals that we kept during Ryan's life - they record every feeding,  
every temp taking, meds given... and random thoughts and smiles and  
tears and explosive bowel movements.  There are still late nights  
that I take them out and read them, and am amazed that this was our  
life.... and I would do it all in a heartbeat again for one of Ryan's  
smiles.  At first I needed the books almost to reassure myself that  
it was all real... now I get a great deal of peace just knowing they  
are there when I want them...
It is so early in this grief journey for you, please be gentle with  
yourself.  Let your heart help lead you to healing - if getting  
Karly's death certificate feels like the right thing to do, then go  
ahead.  If you find that tomorrow all you want to do is read her  
notebook and cry, then try to set aside the time to do so... and any  
time you want to share, we will be here.  You are not alone.
Wishing you peace,
Sandra, Mom to Ryan 01/31/03-01/29/04 (T18) and his sister Drew 4 yrs  
old!

On Jun 17, 2008, at 3:15 PM, ushutch@xxxxxxx wrote:

> I had to take a break from my daily attempt at moving on without  
> Karly.? I've been trying to use the time and energy I spent caring  
> for her on meaningful, productive things.? All morning I have been  
> sorting through mail and other paperwork that's accumulated while I  
> had better things to do (play with her).? Now I am being taunted by  
> the notebook in the corner, the one started while we were still in  
> the NICU, the one we've kept all her important papers in.?
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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