Strength Redefined

I don't think there is one true definition of strength. In fact, it's hard to describe what strength really is. I think it's hard to put in words just like love, instinct or resilience. I don't even think it's a choice. When you feel such ferocious love for your child, the kind that overpowers you, you can't help but feel strength. Day to day, it's easy to forget that my daughter has hydrocephalus. Yes it's physically obvious, but to me, I could stare at her all day and wonder how she could look so perfect. Right now, I enjoy every move she makes, not being surprised at what she does but still not taking for granted that she might not be able to do that. She moves her legs, and I am grateful that she can. She follows me with her eyes and I'm amazed that she can see. The dog barks and I'm so happy that she jumps. I enjoy the simplicity of each day with her and revel in the fact that she acts "normal." 

But the fear is there. The fear that one day, her development will be obviously delayed. That other kids will ask what is wrong with her. That she won't be able to make choices in this large world. That she'll cry in pain and there won't be a damn thing I can do about it. Or that someone won't believe in her. We look at her and think there's no way she will show brain damage because of how good she is doing now. But what if we're wrong? I think about the simple fact that her precious brain is so severely compressed against her skull and how cruel that is. It's not fair. It makes me angry, scared and desperate. To think I would give anything in this world to make it not so, but I just simply can't. My love is immeasurable yet I can't wish that fluid away. 

I've fully embraced this world. But how could I not? It's a family I never thought I would want to be in. I've struggled to find words to explain how it feels to know other hydro parents and just know they get it. I don't need to write this post for them to understand my feelings. That crushing blow when a doctor tells you there is something like this wrong with your child. We've felt it and remember it like it was yesterday.  Most of us have been offered termination and will forever remember that. We'll look at our children and wonder how that could ever have been an option. Not frequently but just enough to know it sets us apart from other parents. There's no other feeling than wondering about the quality of your child's life and knowing the only answer is "wait and see." The "wait and see." That is so hard. The hardest part of pregnancy. But when you learn to let it go, how freeing it is. Not knowing how things will go is the exact opposite of my personality. But I've learned how to do it somehow. I have no idea how. I'm sure there's many hydro parents that have the same personality and we have no choice but to "wait and see." I wouldn't change my daughter for anything. She's perfect to me. But how easy it would be to be naive and expect the same path of typical development. How easy to not have the heart-gripping fear that could sink you if you let it. I think struggles in life are necessary. However, I want my daughter's struggles to be trying hard in sports, not getting her way, learning how to deal with failure. Not waiting for the next shunt revision, feeling less capable than other kids, or basic motor activities. I know the hydro is not my fault, but it makes you feel like a failure as a parent. 

 

But these hydro babies and their parents. Wow, they are amazing.  How each milestone is so precious now. How we as parents, understand it and celebrate right along each other. How much it means to me that you see such beauty and strength in my daughter.  I wouldn't get that anywhere else.  I never thought I would feel so proud for stranger's babies. But I do. I'm happy alongside you and see such beauty and strength in your babies. And in you. It's like I know you. I still wonder how that's possible to feel so connected to others you don't know in person. The strength we have is unique and feels like a secret club that I didn't know existed. I wish I could explain it better. But I don't think I need to.