I am a bereaved parent. For so long, that title has defined me and the
person I am now. My first daughter was born in 1995 and had a rare
condition called Alagille Syndrome. She was cognitively okay, but had
serious issues with her heart, liver and kidneys. She lived for two
years and two months; then she suddenly took a turn for the worse
and died. She was my only child at the time.
Even after all this time, not a day goes by that I don’t think about her.
It’s been 22 years, and I have to say mostly when I think about her now
it is with love and fondness, instead of the searing pain it had been for
so many years. How did I make it to 22 years and survive? First of all,
time doesn’t stop for us even if we think it should. Also, for most people
it is a slow and painful process to get through the pain of grief.
I actually didn’t think I would make it in the beginning. The pain was so
all consuming that I couldn’t even imagine it would ever lighten up.
When someone dies, it is important to really take it one day at a time,
one moment at a time. Just getting through the initial days and weeks
is exhausting and can be incredibly painful. It helped me to have the
support of family and friends in the beginning, but grieving is a very
personal thing. What works for one person might not work for another
and it is important to be kind to yourself and give yourself time to get
through this process.
My husband and I grieved very differently but we
also gave each other space to get through it the way we each needed
to. I cried all the time and wanted to talk about my daughter. I also
started to scrapbook and I went through pictures and wrote about her
and our experience with having a medically fragile child. That helped
me a lot. My husband couldn’t look at a picture and went right back to
work. He was much quieter at home and told me he cried when he
was in the car alone.
When you are going through the loss of a child it
is hard enough holding yourself up. You cannot hold your partner up
too. So giving each other space and time without judgement helped us
get through the most difficult times.
I am not sure when I realized that I would actually be okay…when I
would get to the other side and feel like I survived the worst. Like I
said before, it is a slow and gradual process. Days became weeks that
became years and one day I realized that I went the whole day without
crying, or I didn’t think about my daughter almost the whole day. Or
when a friend mentioned my daughter, I didn’t break down. I just
smiled and thanked her for bringing her name up. There are still days
that can be hard for me and when I talk to someone newly bereaved, it
brings back all the feelings from the beginning of my journey. But I am
happy to say I think I am as good as I’m going to get in reference to
my loss. My daughter will always be a part of my life and I wouldn’t
want it any other way.
I wrote a book that talks more in depth about the things that helped
me get through the worst of my pain. I also have talked to dozens of
bereaved people about their experiences and I included what worked
for them too. My book is called Grief As A Second Language. It is a
guidebook that can help anyone grieving or wanting to help someone
who is grieving. I wrote this book to try and help people get through
their loss and all that goes along with that. It is a long and difficult road
and I wish you all peace.