My name is Larie. I have been best friends with Kari since 3rd grade. I count her more as a sister than a friend. That makes Grace, Toby and Milo my niece and nephews=).
I'm really not sure how to abbreviate the story of the past five years (counting pregnancy) . With Toby I can go back to the pregnancy test that told us that a new life was on the way. About two Months later I found out I was expecting my first. Kari had her "It's a boy!" ultrasound and then two days later found out about his Spina Bifida. Those were some hard days. It was nice to have the kind of friendship where tears can flow freely. I cried with her and without her, but crying with her felt better. My uncomplicated pregnancy became a painful thing. It was such a complicated time.
I can't say there was any game plan as far as support. We just walked through those months together. One thing that helped me deal with feeling helpless was reading up a lot. I did not want to feel clueless as she used medical terms and I just wanted to really understand it myself. Also it helped to know what I was talking about when I ended up being the go to person for friends who were afraid to bug her for updates or make her explain it again.
Toby's birthday was one of the best days of my life. I got to be in the room when he was born, and it was like finally meeting someone you have known forever. I knew how I felt about Grace, and watching Toby come into this world and knowing before hand how I was going to feel about him was huge. It was hard to see him taken away right after birth and to know that this was just the beginning of the lifetime effects of Spina Bifida. At the same time to me from that day on Toby has been a person and a personality and Spina Bifida is the secondary plot of his life.
It has been a long time since the day he was born and there have been many new things to face. I think Toby might hate me if we lived in the same city. I get so excited about the things he does and Toby does not like that kind of attention. It would be hard to down play my sometimes cheerleader - like excitement. From the beginning until now I am so thankful to have a front row seat in Toby's life and to hear daily of his conquests or to just hear about the everyday stuff the three of them get into.
I have loved being a part of his life and even though I am not the best aunt ever (his birthday card is still waiting for a stamp), I love Toby to death (and Grace and Milo). I did not start out trying to be the best support I could be to Kari after his diagnosis. I just cried because I had to; I rejoiced because I could not help it. I think the important thing is to be a part of the story just because you are a part of the story and not because you are trying your best to help the parents. Life is hard, and we need each other. I have needed Kari in my life, and she has always been there for me.
One of my favorite pictures ever: a sleeping Toby on my very pregnant belly.