I am overwhelmed with mixed emotions and i need to vent!
What better way to to it that to blog about it :)
When i first started this blog i promised my self to not JUST write or go into details of the "BAD" that CHD brings along... because i so often read blogs that made me cry, sad and are just so discouraging, even when everything is going so well with them.
I don't want (and i hope it's not ) my blog to be one of those ones who will make other heart moms cry and feel discouraged .
I personally feel that beside the fact that she has a heart defect, had and has to have open heart surgery... there is not much "BAD" i can write about..
Was it hard watching my daughter so helpless during her surgeries? Yes..Very!!
Is it hard knowing she will need one and hopefully one last surgery? Absolutely !
It makes me sick just thinking about it!
Could i turn Nadia's journey into a sad story? For sure!
Is it a sad story? In so many eyes ...Yes, it is... for me it is so much more then that!
Nadia is a blessing to me/us... Tommy and i always say how unbelievably lucky we are to be her parents... there is so much good that comes along with her little "broken" heart.. so much Happiness, Hope ,Faith, Trust, Love and appreciation for life!
The GOOD definitely overshadows the "BAD".
I want everyone, especially other heart moms who still have this journey ahead of them to smile when leaving my blog.
Most importantly I want Nadia to read this one day with a smile on her face and realize how special, loved and blessed she is, to be born in a time were there is a "fix" for her complex heart!
I read something interesting about a CHD (HRHS) Adult (32)who is keeping a blog about her life as a survivor ....as much as i loved reading her blog... some of her posts were kind of depressing and a wake up call of what Nadia might have to face and deal with in the future as a female with a "Disability" ... I always think about her future and wonder about the things she will have to deal with.
There is her heart defect of course, her Scar, School, Work, Love life and having a family of her own.
On one of her posts was a comment from a couple of CHD adults who were complaining about how parents these days create blogs and post pictures of their babies and their scars and how we as parents violate their privacy's by doing so and how unaware we are about the affect it will take on them in the future...
One other adult CHD survivor wrote that he feels sorry for all these little babies/children who have parents that keep a electronic journal with pictures of their children, because on of these days someone could find their story online and make life in school, work or just in their personal life so much harder then it already has to be on them.
CHD teens/adults should be able to hide their scars until they are ready to tell their own story. Which i agree with on the last part.
I do might take the pictures of her scar off my blog until i get Nadia's permission to but them back on again.
Obviously the "SCAR" is a big issue for CHD teens/adults... which again i kind of understand.
kind of, because obviously i can't really relate to them.. the biggest scar i have is on my for head, barley noticeable, but every one dislikes something about their bodies, so i guess it must feel a bit like that.
I do think a little differently about the whole situation though... because i think it all depends on each individual and how they carry their scar/s.
See.. i met this beautiful girl Katie (18) who was born with a large VSD and had open heart surgery by age 2 ... she is my personal inspiration.
She wears her scar like a million dollar accessory and i must say it makes her even more beautiful.
When i asked Katie about what she say when people ask her about her scar.. she told me that she would tell them the truth and it would be the end of the story but at the same time open other people eyes. Why hide the scar that makes you, just you?
Before i met her i wondered allot about how Nadia will carry her scar.
I LOVE Nadia's scar... i kiss it every morning when she wakes up because i am not ashamed of it or of her, so hopefully i can teach Nadia that she shouldn't be ashamed of it, or her self either and maybe one day she will carry her scar as beautifully as Katie does.
So i guess all these comments bothered me a little. It is not as if i or other heart moms intentionally try to hurt our precious children by posting pictured of their scar/s.
Keeping a journal of her journey is not just SUPER therapeutic to me, but i also think it will give Nadia a little inside of her mommy's perspective in this journey.
If Nadia comes after me she will be a moody teen who thinks everything mom says is just super annoying and wrong:)) Yes, that was me for about good 2 years as a teen!
Maybe my blog will help her deal with things in some way or another.
All i can do is pray that I am doing the right thing by keeping up this blog!
Wishing everyone a happy easter
Thanks for stopping by