Allow me to explain.......

I will never live a day without thinking about NAIT. Ever. I will always look at my kids and think about what could have been. There are many reasons for that. The main reason is because the fear and worry you lived with for so long never really goes away. It stays etched in your heart and your brain forever. You never live in a Pollyanna State ever again. Another reason I'll never forget is because I still play a huge role in the NAIT community, whether it's working with naitbabies or giving plasma for ProfNAIT, or just offering support to other NAIT moms. I'm never far removed from our little circle. I see constant reminders of what could have easily happened to my children. I wonder why it didn't. I really was never a tough person until we were struck with NAIT. Some people may say I'm crazy to still think about it, to still question things. But it never goes away. It just doesn't. It makes you harder. And yet, more sensitive, more vulnerable. More protective. A few years ago, my oldest child's behaviors were being questioned. Was he "normal,". I will never be able to explain my reactions to the questions. I look back now and realize I was irrational, but yet I still remember the fear that gripped me. It was like being back in that sterile hospital room in 2007 hearing something was wrong with my baby. My world was shattered in that moment. I had to fight like hell to have another baby and I thought that once we survived that, I could survive anything. But when my child was being questioned again, my hard, tough outer shell I had learned to build crumbled again. And I was that scared mom, crying alone at night while my baby was hooked to tubes far away from me, with no answers, no explanations. I will always be a little like that. A turtle. This hard tough exterior with a squishy inside. Just the right amount of pressure and I will crack and I will be a mess. A NAIT mom last night talked about how she's coming up to her son's first birthday and how painful it is. He bled. He survived, but he's no longer "perfect." It hurts her. She talked about her brave face she wears for her family and friends. She knows she's blessed that he's here and he survived, but it still hurts. She longs for another child, she wants more children in her family and yet she is frozen with fear. I know those feelings. Sometimes I felt like I was dying a little at a time on the inside when I told my kids' stories. And while I'm okay to an extent now, it will never really go away. And I know my kids aren't perfect and that they may be a little quirky or crazy, and I try really hard to not be a helicopter mom and I try not to make them perfect by living vicariously through them. Most mothers are neurotic by nature, but it's worse when things didn't go like they should have. So yeah. Those are my ruminations on my life as a NAIT mom. I'll always point my kids out to you, tell you how cute and smart they are. You'll probably think I believe my kids are so bad ass. And you'd be right. I do! They are my perfect, goofy, quirky little children that should have had different fates. Everyday I feel like I witness a miracle. So try not to judge me or them too hard. I'm never too detached from those scared feelings. The scab is there, but if you pick, I will still bleed.