Monday, March 12, 2012


I hesitate to write this, and I'm not entirely sure why. It is real. It is honest. Things I promised this blog would be. But I'm still nervous. Maybe because Brooklyn might read this some day, and I don't want her to ever think I don't love her exactly the way she is. Maybe because I wonder what you'll think of me. Or maybe because I don't want others to feel weird -- or guilty -- around me because their children don't have physical challenges.

But, today, I am pushing all of that aside, and I am going to "just write" it for me. It needs to come out, and I need to make sense of it. So here goes...

For the first time the other day, I imagined what it would be like if Brooklyn didn't have Spina Bifida. I mean really imagined. Lately, I have been watching, noticing other little ones, and I started to wonder, what if...

I tried to envision her running along side her sisters, her cousins. Climbing onto furniture. Cruising along the edge of a coffee table. Getting up onto the fireplace.

I wondered what she'd be like. Would she be a monkey like Kendall -- climbing onto everything -- or a busy bee like Emma -- running around in circles (literally) until she fell down laughing.

What would it look like to see her pigtails bounce as she skipped? Would her personality be different? Her smile bigger? Her giggles louder?

Would she walk on her tip-toes? Would she spin and spin until she collapsed to the ground in exhaustion? Would she chase her sisters around the house, or would she prefer to be chased?

As the tears clouded my already cloudy vision, I tried my hardest to see it. And for a second, it was there. All of it.

I've never done that before. I did write this piece, but that was different. That was imagining her years from now (in Heaven) and it was from her perspective, not mine. I never actually tried to see my Brooklyn -- the one I see every day -- as anyone but who she is at this moment.

And now I know why.

It hurts. A LOT.

But more than anything, it is confusing. It makes me feel guilty, and it does not make me happy.

I have written in the past that I have felt a loss, but no regret, and I think that is very accurate. From the beginning, my heart accepted God's plan for Brooklyn's life. Even if I didn't always want it or agree with it, I accepted it and I trusted Him. And I am grateful for that because otherwise I would constantly feel what I felt the other day, and let me tell you, that is NOT a good feeling.

I'm not sure if there is a lesson here or not, but I have to remind myself that not everything has to make sense all of the time. Sometimes things just are what they are, and you feel what you feel. And that's okay.

But going through that -- feeling that -- confirmed that it is a total waste of time and emotional energy to picture what could be when the real Brooklyn is wonderful and beautiful and in front of me RIGHT NOW.

And it wasn't until I went "there" that I realized just how much I accepted Brooklyn for who she is. Up until this point, I never even thought about picturing her any other way. For some reason, my images have always involved crutches and braces, even as I felt her squirm in my womb.

So, now, as I write this, I am deciding that I am not going to feel guilty about going "there" because as I'm sure you would all would tell me, it was a natural, human thing to do. And second, and definitely more importantly, because it showed me that focusing on the here and now is so much more fulfilling than focusing on what could or should be. There are some things in life that you can change, but there are other things in life that require you to simply change your perspective.

I guess that is a lesson after all -- one I can apply to many other things in my life that have nothing to do with Spina Bifida.

And that really is one of the greatest blessings of this journey. How it is teaching me to live. To not imagine a life I want, but to dig down deep and create the life I want with the many blessings I have been given. To accept, to trust, to appreciate, and simply love. At the end of the day, that is really what this life is all about. We just junk it up with a lot of other things that really don't matter.

When I think about living life to the fullest, I often imagine myself running through a field of wild grasses on a sunny day without a care in the world. And I got to it the feeling of running through the field that makes you feel alive, or is it the breeze running through your hair?

I didn't realize it until now, but for me, it is the breeze. I can't see it, but I can feel it. Whether my eyes are wide open or whether they are closed, I can just feel it. We can all feel it.

That, my friends, is my blessed assurance. I pray it is yours as well.


Jamie said...

Very well put, and I couldn't agree more!!

Jill said...

Thank you for so openly sharing. I too have a child with spina bifids and ironically jut today I allowed my mind to wander there. To imagine my little boy pulling up on furniture, crawling etc. and it did hurt. I felt so guilty afterwards and reading your post made me feel better. I know God has a plan for our strong little ones. I found your blog on spina bifids kids website and enjoy your writing!