One Year Later

Wow what a year it has been!! I've survived the lowest lows and realized I'm a lot stronger than I ever knew! December 10 will never be the same to me, it will always be the day my whole world was turned upside down. Ironically enough we were supposed to be in Disneyland that weekend, the happiest place on earth but instead we were in the hospital with our beautiful baby girl experiencing the worst time of our lives. I remember everything about that hospital visit... I remember every nurse, every failed attempt at getting an IV in my baby, every conversation almost word for word, I remember what I was wearing (which I've since thrown out since I'm superstitious), I remember almost passing out since I hadn't eaten during our hospital stay and mostly I just remember crying and crying and crying! How could this happen to us? We already had a healthy son and you just never even consider that something will be wrong with your child especially when you already have a healthy child. Even when I read my pregnancy books I would mostly skip over the parts discussing disease and illness, that kind of thing only happened to other people's children, not my baby. Well I was wrong, now I had several doctors telling me just how bad things could be....80-95% chance of mental retardation, most likely my daughters brain, kidneys and heart would already have benign tumors growing on them due to the genetic disorder Tuberous Sclerosis they diagnosed her with...I just couldn't even wrap my head around it, all I could do was cry....this couldn't be happening!

The months after her diagnosis were probably the hardest for me. I was glad I finally had an answer to what was going on with my baby but it just wasn't an answer I wanted to hear. To say I struggled seems like a huge understatement, to watch your baby have seizures every day and know they are causing damage to her little brain and then to know there isn't a thing you can do to take this away from her...it's just the absolute worst pain I've ever felt. Every day was filled with fear and sadness, you don't get used to seeing seizures. I hope some day those first months will fade from my memory but for now I still remember it all...the panic, the tears, the loneliness, the look in her eyes during a seizure and praying endlessly to God to take this all away.

I still struggle daily with all of this but I'm in such a better place now! Even after what we've been through I feel like I'm a much more positive and grateful person then I was a year ago. I've spent a lot of time by myself this year, mostly by choice and have thought about our uncertain future millions of times. I didn't want to spend time with friends for a long time because my world was so consumed by this that I couldn't pretend to be interested in anything else. To think of people going on with their lives when my life was in such turmoil just seemed so unfair to me. I couldn't imagine gossiping or listening to someone complain about something that seemed so unimportant in comparison to my problems. As I sit here a year later I realize everyone has problems, some smaller than mine but some much larger than mine, so I count my blessings and thank god every single day for all I have, I realize things could be a lot worse......things were supposed to be a lot worse.

I appreciate everything so much more than I once did. Every milestone Presley meets is SO much sweeter to me since we didn't know if she would ever meet them. I've learned to speak up, trust my gut instincts and be the best advocate I can be for my daughter. I've learned you don't have to put 100% of your trust in doctors, my mommy instincts are still valid no matter what any doctors say. I believe in miracles and I trust in God.

When I first saw this picture I immediately got teary eyed...... it just made me think back to that horrible doctor who told me my baby might never walk and she was climbing mountains this day! Her stance makes her look like the tough little fighter she is, and although we know she has a long road ahead it seems like she's saying "bring it on".