I don't post much but I'm usually around lurking. Since today has been so hard I find myself needing to post about it.
Today is a difficult day for me. It is the 13th anniversary of the death of my youngest son. He was 21 months old and died from complications of a seizure disorder that was secondary to a rare genetic disorder. He was (and still is) the only known case in the world with his particular combination of genes.
Anyway, I spent the day trying to distract myself?worked out with the trainer, went on my long run, and even cooked up a storm. I also spent the day remembering my Joey and how special he was. How I was the only one he?d smile for and how much he liked to play with my long hair. How much he touched everyone who came in contact with him.
There?s not a day that goes by that I don?t think of him. His birth and who he was changed the person I was at the time. He helped shape who I became.
For those who don?t know, I am a pediatric nurse. I work on the unit that Joey spent most of his short life on and where he died. What used to be the hospice room is now the charge office so I am in that room at least once a shift. Some people say they could never do what I do where I do it. My answer to them is this: what I do is in honor of my son every day. Every child I care for, every parent I comfort or reassure is a tribute to my son. I do for others what was done for me. It is how I pay it forward.
I ended my day with a trip to the cemetary, a place where I know he isn?t but is nonetheless a comfort to me. It saddens me to see all the babies and children who are there with him. I know, though, that he is finally able to play (as are they) and he has no pain anymore. I also know that he watches out for me and his brothers and sisters and someday I will be able to hold him in my arms again.
R.I.P. My Joey, until we meet again.
Joseph Augustine Roman Scott: February 25, 1996 - November 10, 1997
Thank you for letting me share.
Re: The end of a difficult day (long and sad)
Your post just made me cry. I am so sorry for your loss. I cannot imagine what your are going through, but I lost my brother unexpectedly at the age of 16, and I remember how devastated my parents were (and still are. The pain does not go away, we just learn how to deal with it). I also visit the cemetery when I am in the town he was buried at.
Thank you for sharing your story. Your Joey will be in my prayers.
You are so strong. What a beautiful testiment to your son. My oldest has struggled with seizures. I'm sure you have blessed so many of your patients. DS's nurses were my rock during the tough times. God keep you on this tough day...
((hugs))
Joey sounds like such a sweet little guy, thank you for sharing your story with us. I'm so sorry for your loss.
~Working Mom~Breastfeeding Mom~Cloth Diapering Mom~BLW Mom~
Blog - No Longer on the DL ~ The Man Cave
Shawn and Larissa
LO #1 - Took 2 years and 2 IVFs ~ DX - severe MFI mild PCOS homozygous MTHFR (a1298c)
LO #2 - TTC 7 months, surprise spontaneous BFP!
"You're gonna miss this You're gonna want this back You're gonna wish these days hadn't gone by so fast..."
TTC#2 October 2011. June 2012 diagnosed with mild PCOS and both tubes blocked.
10/1/12 miracle BFP 11/12/12 missed m/c (9w2d), baby stopped growing at 7 weeks
1/16/13 BFP, EDD 9/27/13, m/c 1/19/13
2/12/13 BFP, EDD 10/25/13 Please stick little one
A stowaway on board!
(HUGS)
1st pregnancy: m/c began 1/12/09 d&c 1/13/09 8wks. Baby stopped growing at about 6wks.
Delaney: Born 10/15/09
Gavin: Born 4/8/11
Baby #3: due July 10, 2014
::hugs::
Thank you for sharing Joey's story with us.
I am so sorry for your loss.
DH: 31, no issues
4-6/2012 100mg of Clomid + trigger + IUI/TI = BFN
7/2012 150mg of Gonal-f + trigger + IUI = BFN
8/2012 Surprise unmedicated BFP!! Due May 8, 2013