The good, the bad, and the difficult

So let me start my story at the beginning of this particular story. When Boo was born and was in the NICU he had a lovely nurse, Chris, who was from our same town that would take care of him at nights. She would often reprimand me for staying too late into the night, for sleeping with Boo on my chest (because on my chest he wouldn't desat or Brady), and for pushing myself too hard after major surgery. She was also pregnant at the time, with her 8th child, making me feel a little less freaky for having five and making me feel like we shared something, being pregnant at the same time. She was due VERY soon, actually around Boo's actual due date, and I would sometimes look at her and wish that Boo could still be safe and resting inside of me instead of in the NICU with wires attached and going into him in all kinds of places and fighting for life. As time went on we discovered that we had several children the same ages and as it turned out G-man and one of her daughters were in the same fifth grade class. We finally brought Boo home and the NICU was thankfully behind us.

As the years went by we would inevitably run into Chris here and there at school functions. We would smile and say hi and she would ask about Boo or say hi to Boo if he was there. It was a casual passing friendship. Many of my kids are friends with many of hers since we have so many kids of the same age.

Well, The Man went to Tinesy's curriculum night and ran into Chris again, as another one of her daughters is the same age and on the same team and our Tessa. They got to talking about Boo and Lyme disease and all that stuff. Chris mentioned that she's writing a paper for college on diseases that the mother can get that transfer through the placenta to the fetus and asked if she could use Boo as a case study. The Man said yes, and that's fine with me. It really is. I think it's good to get Boo's story out there and heard and make people more aware of this and how this can affect mothers, and babies, and whole families. So really totally fine with The Man saying yes.

And yet it brings back all those old feelings. Those old feelings that in large part were washed away, or perhaps just swept aside, when the Kitten was born. That internal pain and anguish that I hurt Boo. That I did this terrible thing to him. That in the end when push comes to shove this really is all my fault. No I didn't drink during my pregnancy. I didn't do drugs. I didn't eat foods that could have endangered his life. I didn't participate in dangerous activities that could have harmed or put him in danger. I did everything I could for him to be strong and healthy, like his brothers and sisters before him. I tried to make sure to do things right for him... but it was what I didn't know that put him in danger and in the end created life long difficulties and challenges that he will have to face. I know in my head that I did everything I could for him. That I tried my best to have him be strong and healthy. I just failed because of what I didn't know. So my head says "not my fault" and my heart screams in agony and pain and guilt and self loathing that I did this to him. It doesn't matter that I didn't know. It doesn't matter that I tried to do everything right. I didn't and in the end that's what caused all of this. I didn't do everything right and I was sick and I made Boo sick. So much of this pain and self loathing just kind of went away after the Kitten was born. She was strong and healthy and perfect. She IS strong and healthy and perfect and typical... hell... she's more than typical she is a force of nature. So I could look at her and say "I did my best and she's okay. I did my best and Boo is not and it is what it is." and I move through life like that most days now, most days since the Kitten. Until someone brings it all up again and the feelings come racing back and that hurt and pain come flooding back and overwhelm me.

I love all the kids. I look at each and every one of them and I think what a miracle they are. When I wonder if I really believe any more I look at the faces of my children and I think that only a great and loving God could have granted me these amazing blessings... these miracles in my life that I love with my whole heart and soul and that make me crazy and make me laugh and make me feel like I'm going to go out of my mind and make me realize how much life is worth living and the kind of legacy I want to leave for them. I love them all like crazy and there isn't anything I wouldn't do for any one of them. Boo is different though. Boo holds my heart in his tiny little hands in a way nobody else in the world ever can or ever will. Boo needs me more than any of the other children. He just needs me on a primal level. He needs me to be his Momma that will love him "ever." He needs me to be his touchstone. He needs me desperately and beyond reason. He needs to know that I am always there for him... and I think if I have done nothing else right as a mother what I have done very right is that Boo knows that I adore him with a love that knows no measure... and that I will always love him "ever." So while I adore all my children, Boo has a special place. I recognize the possibility that I might always have to take care of Boo. That he may always need me to be his Mami. That he will need me to guide him through his life always. Maybe not, who knows... but maybe. My instincts to protect him are in overdrive ALL the time. My instinct to watch over him and keep him safe and take on any and all challengers is revved way up. I will protect him from anything I can... from the world if I have to.

So tonight we heard from Chris via email. About Boo and what she has learned about Lyme and the fight against it. About possibly presenting Boo's case to help the fight that we face day in and day out become better known. To perhaps help other parents dealing with this realize that they aren't alone. To maybe help another mom who is hating herself and consumed with guilt realize that sometimes things just happen. I like the idea of helping others with Boo's story... while at the same time it tears my heart. I know what I have to do. I just hope I am strong enough to do it, and do it well as it deserves to be done. For Boo. For other children like Boo. For other families like ours. I just wish it wasn't so hard but when it comes to Boo it seems all my strength leaves me and I just want to cry and cry and cry. I will do this though.

Here's my new fave pic of Boo... just because.