Wednesday, August 07, 2013


In the early days of Brooklyn's diagnosis, I wrote. I wrote to heal, and I wrote to release. And I only wrote when I felt led. Somewhere in the middle of that, I started to feel obligated to write, and I hated that. I already have a writing job. This...this was for me. It was also for my family and anyone else who cared to read it, but, really it was for me. For a while, I stopped writing on here because it wasn't helping anymore. In fact, it was making everything confusing.

But today I am going to write for me again. Because I am ready, but mostly, because I need to.

As most of you know, Brooklyn turned 3 years old last week. As in, THREE YEARS OLD. That absolutely blows my mind. It amazes me how far we've come -- how far she has come -- and how life-changing and inspirational these last few years have been. So many questions have been answered; so many unknowns now known. Some of those answers have supplied more joy than I have ever experienced, but some of those answers have been heartbreaking. Some prayers have been answered the way I had hoped, but some of them have been answered in ways I have yet to understand.

It's interesting the way life goes on for everyone else after your world has been rocked. That is just the way it is, I know, but sometimes it is hard to come to terms with that fact when you are the one still dealing with the aftershocks. Most days, you can handle it and maybe even feel blessed by the impact, but there are days -- sometimes, weeks -- when the impact feels a little heavy and scary and maybe even a little unfair.

We are gearing up for Brooklyn to start preschool in a few weeks, which means school supplies and school clothes and lots of excitement. But it also means buying special leggings that will accommodate her braces, special backpacks that will securely attach to her wheelchair, and paperwork that requires me to write things like "paralyzed," "disabled," and "IEP." It also means preparing my heart for the moment when my 3 year old rolls up to a bus and waves goodbye -- a moment that feels way too soon, yet is necessary for the life I want for her.

That is hard.

And as I come to terms with all of this, she, too, is coming to terms with it. We have been talking a lot about her being a big girl now that she is 3 years old. We have ditched the binkie at night and getting ready to transition to a new big girl bed. There has also been lots of talk about big girl preschool and even a big girl dance class. All good stuff.

But then last week, she asked me on two different occasions if being a big girl meant she could stand all by herself..."like Emma."

Then, this morning, she said this to me...

"Mommy, can you get it for me? I can't reach it. I can't stand."

As her words -- "I can't stand" -- played over and over in my head, I found myself responding, "Yes you can, baby. You just need a little help."

But you know what? She can't stand. I know that. My heart knows that. And, now, she knows it too.

That is hard.

I have spent the last few years trying to pretend that this was getting easier. That I could do this...that we were going to rock this. But it isn't easy. It is hard, and honestly, it is getting harder. Physically and emotionally -- for me and for her -- it is getting harder.

And for some reason, I just needed to write that today. My heart needed to admit it, and I needed to also express it as a reminder to myself that saying it is getting harder doesn't indicate a failure on my just is what it is right now. History has shown me that God will get me through this, and in the meantime, there is no pretending necessary.

Like any mother, I am doing the best I can to give Brooklyn and Emma and Kendall what they need. And like any mother, I am also going to have seasons when it feels harder. Those seasons will come and go... and they will come and go and come and go.

Life doesn't usually get easier. I think you just get a little better at it with every step you take. Some steps will come easy, and some steps will take more effort. Sometimes you will fall, and sometimes you will come to a point where those steps are just too hard. As my rock star is teaching me, in those harder moments, you simply need to ask for help. That doesn't make you any less strong or any less able; it just makes you determined and that much closer to your destination.

We will get there, I know. She will get there, I know. But until then, will you say a little prayer for us as we navigate this tougher terrain? I coveted your prayers in our early "hard days," so I am humbly asking for those prayers again today.  Because I am ready to accept them, but mostly, because I need them.

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God."
Philippians 4:6 NIV


Anonymous said...

we adopted a little boy with sb one year ago. he is 5 now. i am thankful to hear your thoughts as it helps me sort through my own. praying for you as i know what it is like to rest in the prayers of others when things are hard.

Unknown said...

Our prayers r w u n Brooklyn n the family. Be strong n courage as the Lord Jesus will always take care of u.

Anonymous said...

Look how far your Little Rock Star has come, Keep looking In your Rearview Mirror at how far she has come, God has Big Plans for her and she will continue to Amaze you! She is Blessed and she will Bless you and your family with her joy of living.

Miranda said...

I love this!! Thank you for being so open and honest. They way you write it out sounds like my thoughts!

Lora said...

Our daughter has CP, and she will often say quite casually as she is getting dressed or putting her braces on "I HATE my CP" It breaks my heart, cause it is a part of her and it is not something we can change or fix. It just IS. And I hope and pray that I can help her find ways to love and accept the parts of her that are different from everyone else, while still respecting the sadness and loss she feels about being different. Such a hard road, for Mama's and their babies! Thanks for sharing your thoughts on this!

Anonymous said...

I could not have said this better. Clearly captured the things my wife and I struggle with. Our 19 month has SB. Very similar familial situations too. Keep writing!!! It truly blesses more than you know!!

Matt Larson said...