Thursday, January 26, 2012

What She Has, Part III

**just to clarify--none of this is 'new news', we found out Lilah had 1P36 deletion syndrome over three years ago, but chose not to share it at the time.

The news was the worst we had received so far....which is saying a lot, because in the course of the last 4 months, we had gotten some pretty bad news...time and time again.  I remember telling a friend that I felt like the sky was falling in, bit by bit--and the news that Lilah had 1P36 deletion syndrome was the final bit.  I'm sure everyone is different, but for us, this felt like the worst news we could receive.
Here is why it was far worse for us than any of the other diagnoses we had already been given:
-it was the reason for alllllll the other 'things'....the seizures, the structural anomalies, the low tone, the poor weight gain, the heart disease....they were not mutually exclusive anymore...and their sum seemed greater than the individual parts....and even though we knew they were not going to get we knew.

-this diagnosis came with a slew of new things to worry about that, up until that day, we had not even considered (certain mental retardation, hearing and vision loss, non-verbal communication, etc)--and we already felt very maxed out in the worry department.

--the diagnosis felt like a death sentence....if not literal death, then certainly a death of hope.  Up until that day, we still held the slightest hope that she might be 'normal' (very sick, but 'normal'). now, we knew she wouldn't be 'normal'.

We didn't really keep her diagnosis a 'secret', but we definitely did not share it with anyone but close friends and family.  I knew we wouldn't keep it private forever, and it was nothing we were ashamed of, we I just needed awhile to process it.  I did not want 'it' to be what defined Lilah....before she had a chance to prove all the statistics wrong.  I did not want people I had never even met, googling pictures of 1P36 babies and comparing their pictures to my baby.

Most of that seems silly now and I wanted to share because God has written this child a beautiful story....and this is a part of that story.  I know that 'what she has' is not 'who she is'....she is the daughter of the King, perfect and pleasing in His sight.  I hope Lilah's life is and will continue to be an encouragement to others.


Heather Joseph said...

I love you Gina. Thank you so much for sharing all these "Parts" in your blog...I appreciate so much your honesty and openness as you grow in your love for your sweet beautiful baby girl...xoxoxoxo

Alexandra said...

Regardless of "what she has", and even without REALLY knowing you guys, she is such a beautiful child and it is so awesome to read about every little step towards progress she makes. She is blessed with such a wonderful family to guide her along.

Amy Young said...

I am glad you shared. Regardless of what she "has" she is wonderful and amazing, just like her mom! :)