I am feeling extremely vulnerable <-- consider this as my warning to you before continuing reading my post!
I haven't been able to write a post in the last week.Every time I log in, I stare at the screen and then I log out again. I just can not find the right words to describe of how i have been feeling .... non less write a whole sentence about it.. so today i will try my best.
We have had Nadia's Pre Op appointment, Wednesday. It lasted 9 hours but Nadia did well for the most part.She had an sedated ECHO, EKG, Vitals, blood work & X-rays done.We then talked to her primary cardiologist and her surgeon. Nadia was really cranky later that night and the following day.
Well, let me tell u a little about what has been going on with Justin,!! He has been dealing with all of this in his own little way.
The last couple of weeks he became really angry with me over every little thing..screams,... whines... talks back and was just for the most part very negative about everything we did.
I really didn't think he would give his sisters heart surgery much thought , boy was i wrong!
Ever since Nadia's birth we talked about her heart, doctors and hospital visits.
He always seemed to understand and be OK with all of it.
This morning, after a tantrum, I send him to his room to think about his negative attitude.
He usually cools off ...comes back down and apologizes after 15-20 minutes.
This time, he didn't come down for at least an hour... so i came to him.
He was curled up in his bed and just looked so sad. I told him that I didn't like the way he is behaving lately and that i needed to know what he was thinking and feeling so we could work on this together.
He sat up and said: " I don't care that Nadia messed up the picture" ( he drew a picture for his grandpa and she drew over it ...which started the tantrum) he continued " I just don't understand why Nadia has to go to the hospital ?..why do u have to all go and I can't?"....i explained again that Nadia's heart would need to be fixed so she can feel better.....he answered " but mom...she is fine..." he started to cry and said " Why can't she just have a whole heart like me?" ... at this point i just cried with him..i just couldn't believe he asked me that.. i really couldn't talk anymore or think of anything to say to him.
What can u say to you six year old son that could make him understand or could make him feel any better about his little sister having open heart surgery ?
After a big breath i told him that all we could do is pray and be very positive about this situation we are in.
Tommy and I decided that we would want Justin to talk to a child life specialist and for her/him to explain it to him in a different way..a way that a six year old could understand more..i have heard they do a wonderful job at it... i am praying that it will do him good! He is such a sweet boy and the best big brother i don't ever want him to change the way he is!
Tommy is dealing with it too... he has been working like crazy, which has helped him some. It is really hard to see him crumble at times. Nadia is Daddy's little girl!
How do i feel??
I feel scared,sad, hurt, drained & nauseated... I feel as if this is a out of body experience.It is unreal that the Fontan surgery is already here..... tomorrow...UGH!
This surgery has proven to be the most challenging one for me.
U may ask ur self ..what is different about this time and the last two surgery's?
Well, maybe the fact that Nadia is not just a baby anymore.She is able to have conversations with me.. she is able to tell me when she is hungry, sad, happy or hurt. She is my two year old Miss personality. She is my sweet little sensitive princess and my best buddy. She helps me out in the house... no kidding.. she helps me empty's the load of laundry and the dishwasher and even "tries :) " to vacuum ...she stands on her little stool watches me cook and kisses and hugs me when i am hurt ..because she cares and fears for me as much i do care and fear for her.
My relationship with her is so strong... it may sound silly to some people because yes, she is just two, yet our bond is so strong.
A mother/daughter bond that I have once had with my mother. I missed it so much and now that i have it with my daughter, I am just not ready to lose it again... and the thought, that I might could.....is killing me.... it is literally eating me up.
I do have complete trust in her surgeon. I do have complete trust in God. I do! But as strong as I am and as as strong as my faith is ...I catch my self thinking scary thoughts.
" we really didn't see this coming" ... " it was just a freak accident" .." i am so sorry Mr. & Mrs. Dabit"..
these thoughts just play over and over in my head and some days it just makes me drop to my knees.
I can't imagine continuing a day without her in my life.
We are 2nd case tomorrow. Surgery is around noon. I will try my best to keep everyone updated.
Please keep Nadia, Justin, Tommy and Me in your prayers
