Hassouneh Family: Approaching "4"

This next week is dedicated to "Js" big day!!! She will soon be four years old. Sometimes it feels like yesterday and other times like a century ago...as I have said before..."J" was born at 23 to 25 weeks weighing 420grams...she was a biggin:) My baby and I spent a year and a half in various NICUs...she wanted to try out as many as she could...she was trying to find the most comfortable beds...all joking aside though...we were fighting for her life. The trach was the turning point for "J"...my baby hated the ventilator...after she got her trach, "J" really started to improve...much to the doctors dismay...the trach was only for palliative care...meaning she would die...but I had told them at the beginning "I"M NOT LEAVING HERE WITHOUT MY BABY"...I know they were thinking..."Oh God...we have a live wire...call the patty wagon"...

I could pretend and say everything turned out GREAT...well I don't know about great...but life is good and sometimes painful. This is an honest blog...okay...I'm grateful for my "J"...I wished though life wasn't so hard for her....I wish she could talk...I wish she could eat like everyone else...I wish... I understood... what she sees and hears...(hearing has been an ongoing debate) I wish... I knew what she understood....I wish... I was always patient...I wish... are your ready....I wish, want, and need to make everything okay...I want to fix everything...I want to make her all better and I don't know how to accept that there is a limit to all better...how am I going to keep her safe?...how is she going to learn?...who is going to take care of her when, my husband and I are gone?...who is going to love her, like we do? I pray so hard for a long...long...long life...so I can take care of my "J"...she's my perfect baby...

I don't have the answers to these questions...and I pray that guidance comes each and every day...you know in the hospital ....I saw such wonderful parents ...praying so hard for their little ones to survive...many didn't...many...actually alot...do I believe GOD hears prayers...If I say yes...then was GOD not listening to these wonderful people?...If I say no...why is my "J" here?...so I think maybe there might be something to destiny...we are heard, but everyone has a road map already...or at least a guide...that doesn't mean we become lazy and not participate...it just means ....there is something to this destiny thing...because I will tell you this...I'm not anymore deserving of having my "J" than those wonderful people were...and "J" is precious, but so was everyone of those little ones...I'm grateful "Js" road map included us being here ....and when I get down...I do remember that her road map could have read something totally different...or it could have read nothing at all...

Namaste

Happy Birthday (one week ahead of time) "J"...you are loved, adored, and cherished!!!!!