Saturday, May 14, 2011



So I realize that I haven’t been very good about updating all of you on how Brooklyn is doing physically. It hasn’t been on purpose. Most of the time, I’m just too tired to type it all out, and sometimes…well, I just don’t want to. Or, rather, I’m not ready to. But after seeing all the wonderful comments about the photos I posted a few weeks ago with Brooklyn sucking on her toes, I feel I at least owe you a quick explanation of how our little Rockstar is doing.

She has been a busy girl the last few months. She has physical therapy once a week for her gross motor skills and occupational therapy once a week for her gross and fine motor skills. She is delayed a tad on both, but that is to be expected since she is still building up her core strength. Her casts and her head size put her at a disadvantage from the start, and because she is missing leg mass (muscles), her center of gravity is off. Needless to say, she is working hard to catch up.

She can roll over from belly to back, but when it comes time for back to belly, she struggles. She tries so hard to do it, but her legs get stuck and she needs a little help getting them out of the way.

She is definitely kicking and can bend her legs at the knee, although both take some effort. It’s pretty clear that she doesn’t have any feeling in her feet or toes, but that doesn’t keep us from tickling, rubbing, and praying over them every chance we get. We’re not sure if she has any feeling between her ankles and her knees, but she definitely has feeling in her quads, as evidenced by her giggle every time they get tickled during a diaper change. According to our physical therapist, quads are all that she needs to walk.

She is THISclose to sitting all by herself, and I am so proud of how far she has come in just a few months. She no longer cries through her therapy sessions and is happily interacting with toys and her therapists. She still, however, hates tummy time, but she is starting to tolerate that more and more.


We have done some weight-bearing leg exercises, but because she lacks feeling in her feet, she doesn’t quite understand that she can support her body with her legs. So we are going to have to teach her legs what to do—and that will take time.

She will also need to have surgery in the next two months since her first foot surgery didn’t take, so she will be back in casts right around her first birthday. A bummer for sure, but the good news is that once she is out of the casts, she goes right into a stander, which gives us a huge incentive to get her feet where they need to be.

I have to admit, watching her work isn’t always easy. I know what my other girls were doing at this age – Kendall was practically walking – and I am trying hard not to go there. There is just so much that I took for granted. And then, of course, I see other babies her age crawling around and standing, and we aren’t anywhere near that.

I’m not going to sugar-coat it…all of that hurts. Up until now, the differences have been minimal. Brooklyn has been just like any other happy, kicking baby. But now…now the things we feared the most are starting to surface and, well, that can take its toll on a mama’s heart. Honestly, it has been taking a bit of a toll on all of our hearts.

But as I am learning, this is all part of the process of acceptance. I am learning it is okay to hurt and not be Miss Positive all the time because if I am really going to work through this in a healthy way, I’m going to have to admit that I do get sad. I do get frustrated. And I do get disappointed.

In many ways, I feel like we are climbing a mountain. Sometimes we are full speed ahead with our eyes on the prize, while other times we are exhausted, trying to find our way around a bump, or just need a break. All of that is part of the journey.

At this week’s physical therapy session, our therapist did something new. She propped Brooklyn’s arms up against a chair as she held her legs straight, and it looked like she was standing on her own. And in that moment, I got to experience a new part of the journey—the mountaintop.

I can’t tell you what an awesome feeling it was to get a glimpse into Brooklyn’s future. My heart felt like it was literally going to burst. I was so proud I could barely contain myself—and she wasn’t even really standing by herself.

Not yet, that is.

This journey is rough and I know it will be long, but I now know that it will be those mountaintop moments that will make every rough patch, every bump, every stumble more than worth it. As a man I respected very much used to say, “Onward and Upward!”



Summers Family said...

Such a hard worker she is and adorable too! Hang in there. I understand your pain and your joy!

Wishing you all the best.


Colleen said...

She's precious! Yes, this is the beginning of an emotionally difficult stage for you, as she starts showing some delays. But remember--the delays hurt YOU, not her. And just because there's a delay does not mean she won't do it eventually! Nate didn't start walking until he turned 3, but he did it. It just takes them longer, and that is okay.

Gretchen said...

She is so beautiful and so precious!

I KNOW it is hard, but remember to find the joy in all she CAN do :) And it is AMAZING what they can do when we don't think they will!

Prayers abd blessings for your heart on this journey! It is a journey, and you WILL have victories, just keep focusing on those :)

Anonymous said...

Hi my name is Stephanie. I have a 3 month old daughter with Spina Bifida. I live in the Lincoln Park area. We seem to be in similar situation medically and I think we have the same doctor. I was hoping to get in contact with you via email or meet at SPina Bifida clinic if we have the same doctor. We just got our casts removed and now have braces. I was wondering what socks have worked best for under the AFO's and if you've tried the liners that advertise you don't need socks. Thanks so much

Carrie said...

She is so darling!!! What gorgeous blue eyes! I can imagine how difficult missing those milestones would be, but I'm glad she's so happy & doing so well!!! And so happy for you as you glimpse her future - walking! :)

Stephanie said...

Thanks so much for the update.

You are a brave woman...a brave family...and I admire you all.

Your little girl is priceless and precious and clearly treasured beyond measure. She's going to do big things in her life with such a phenomenal cheering squad behind her.

Norma said...

Lisa and family. As a man I respected very much used to say, “Onward and Upward!” I knew this man you respected very much. I respected him too. Keep in touch. My new email is

Thanks for your blog and honesty. Yours girls are beautiful. My grandchildren are 8 and 6. Goes quick. I am so blessed.

Norma Budzinski