So many have asked how I am feeling. Such a loaded questions as my heart is being pulled in so many directions.
The first set of feelings is about the surgery, risks, etc. I am so very thankful Nina was a candidate to have this possibility as there are plenty of Tuberous Sclerosis kiddos who are not. The chance to be with a team of neurologist and surgeons who we trust is a huge blessing! Especially coming from skeptics such as Josh and I. But obviously the thought of my sweet baby lying on an operating table for hours kills me! The what could go wrong is always hanging over me. Though honestly I have enough faith in the doctors, that it is not a huge burden.
The thought of what my baby feels kills me. She is not able to really tell me how she is feeling, if she is scared, if she is angry for us putting her through all of this, neither can we explain why we are doing this for her. That thought hurts my heart as we are still building trust in our sweet girl. She is still learning we will NEVER leave her. We will never give up on her and that we love her and are fighting for her! Oh how I wish I could explain to her when they wheel her away that our arms ache to hold her and we will be waiting on the other side every time!
There is a greater fear for me if this will work. There is a very high success rate for this kind of surgery. 75% of kids come out seizure free either on meds or without meds. I hate to think of us having to put her through this again if this doesn't work.
Probably my greatest fear is who will be wheeled back out on that surgery bed? When you mess with the brain the way they are, all kinds of changes can and hopefully will be made in her life and personality. Our surgeons assistant said, you would be surprised in how fast their brain recovers and begins to rapidly learn things she missed out on for so long. All of this is GREAT NEWS! But if you have a child, imagine falling in love with a child, all their quirks and mannerisms that make them uniquely them, and you see all of that falling away. Do not get me wrong, I want my baby girl to live up to her full potential! I look forward to one day being able to hold a conversation with her and watch her starting up friendships with other children her age, but we love our Nina. We love her truly for how she came to us. Her stubborn fight that has carried her through her life and hasn't stopped yet, her love for feet :), her giggle that can some times start for no reason but soon has you laughing and her love and affection for everyone she meets! THAT is our Nina. The quirks that at one time I did not understand but quickly became overwhelmed with love for!
As we sit in the waiting room waiting for our names to be called so many emotions run through my head about what days lay ahead, but I know without a shadow of a doubt, the Lord knows my fears, He knows my heart and He is and always has been holding my baby girl in His hands.
This song has been my heart as I lean and trust in the arms of my Heavenly Father...
I can not wait till we can look back on this day as another day Nina's life was transformed!