Friday, June 15, 2012


It's funny the way God works sometimes. I have about four unfinished blog posts saved in my cue, most of which are no longer than a few short sentences. Others have been fully written in my head, but haven't even made it onto the screen. No matter how many ideas kept popping into my head this past month, something has kept me from posting anything since my last entry. It's almost like I needed that entry to float around here for a while. Like I needed it here, waiting for me, so I could absorb all that it meant before moving forward.

I meant -- and felt -- every word I wrote in that entry. Yet, it wasn't the whole story. Just a half-step toward a full blown leap of acceptance I wasn't ready to take yet -- and certainly not one I was ready to share.

Last week, I took that step. And today, I feel ready to share it, although I admit that  the feelings are still pretty raw. Actually, I don't know if "being ready" has anything to do with it. I just feel like I need to share it. My head -- and my heart -- need to release.

So here goes...

Brooklyn has spent the last few months working her butt off. A physical therapist comes to our home twice a week to work with her for about an hour, but I work with her every day for about 1-2 hours, depending on how crazy things are around here. This includes time in her stander for weight bearing and time in her RGO brace and walker to practice walking. It's a part of our daily schedule, and the girls have even helped me find creative ways to keep Brooklyn motivated and happy. As you can imagine, those moments are the ones that make it all seem worth it. Not only because Brooklyn is getting stronger, but because I see Emma and Kendall at their very best...and perhaps I see the best in myself as well.

If you have followed our journey at all, you know that Spina Bifida is all about waiting. There is no real way to accurately assess nerve damage and physical limitations, so you just have to wait and see. Sometimes it's a matter of therapy and muscle strengthening, and sometimes it is a matter of what I have started to call "heart strengthening." In other words, it's a matter of acceptance.

I have said before that there have been images in my heart of what Brooklyn's future will look like. Those images have included a little girl with pigtails walking with arm crutches. Maybe a wheelchair for longer-distance adventures like the zoo, but for the most part, in my head -- in my heart -- she was able to walk with little assistance.

Back in January, when we had our muscle test, there was really no trace of any gluteal (butt) muscles. I have said all along (and was told) Brooklyn has strong quad muscles and that's all she needs to walk. That is true; however, you need gluteal muscles to stand.

As Brooklyn and I have worked together these last few months, I have been amazed by her determination; the way her mind wills her legs to "KICK!" even when the rest of her body isn't quite able to keep up. She can kick, yes, and she can move forward, but her back is very arched and her balance isn't secure enough for us to just let her go. She wants it -- we all want it -- but her body has its limitations. That's just a fact.

So I finally asked the question the other day. The question I know my PT and our other specialists wait for us to ask because they don't want to make any predictions and maybe because they know we need to be ready. So I asked, and it looks like we need to start thinking about ordering Brooklyn a wheelchair.

I've struggled the last few weeks over my fear of this word -- this new image -- when I've known it was always a possibility. Some of you reading this may even thinking, "Duh, of course, she needs a wheelchair." But this whole hope/acceptance balance thing is tricky. I have tried my hardest to take one step at a time and I know God can do anything, but I am learning that at some point, there are realities you have to embrace just to get through it all.

I'm not really sure what I've struggled with more -- my disappointment or the shame of my disappointment. If the goal is to give Brooklyn independence so that she can get wherever she needs to go, does it matter how she gets there?

Well, to a Mama's heart, it does matter. Honestly, my heart is broken. And still breaking. The tears are falling as I type, and I hate that. I know this shouldn't matter. I know Brooklyn is happy just as she is, and I know God has a plan. But it still hurts. A deep, throbbing hurt that turns my stomach and makes me feel utterly helpless. Sometimes, I feel as if I failed her. I know in my head it is not my fault, but my heart doesn't quite agree. I am her mother -- the one who carried her -- and if you too are a mother, you know that this is a feeling you really never escape.

And since I am laying this all out on the table, I might as well tell you that this whole acceptance thing happens in waves. Just when you think you have it under control -- BAM! --something hits you and the pain is as raw as it was on that first day. This time, there were actually two waves of grief. The first was just the overall disappointment of her challenges, while the second was the one that compares her to all the other little Spina Bifida rock stars I have come to know. Rock stars I have seen through their early stages that are now taking steps, playing sports, and standing in photos. It is that second wave that throws me the most, as my heart battles with feelings of joy and triumph and, well... I'll just say it... jealousy.

Perhaps the hardest part of all of this is that I can see the determination, the will in Brooklyn's eyes, and what I can't handle is that some day she may be disappointed, too.  Her spirit is such a wonderful mix of strength and sweetness, and more than anything, I don't want that to be taken away from her.

But it is that realization that pushes me to get past this. To let myself feel and express and not be ashamed so that when she comes to the age of understanding, I am over it and I can encourage her to embrace her life and keep kicking. God gave her that spirit, and I believe -- I have to believe -- He will not take that from her.

I also realize I have a role in that, too. I can't mope around and act like her life is something to be sad about because, well, it isn't. Her life is a beautiful, wonderful, glorious miracle that I wouldn't change for the world.

And so just like in those early days, I am clinging to His promises, letting the tears fall, and digging deep to find the will to move forward. Yes, my image has been altered, heart adjustments are being made, and we will order that wheelchair. But Jeff and I have promised each other that no matter what, we will encourage her determination, to keep her kicking, even if it's not all the time. That no matter what her mode of transportation is, we will never let her give up. We will do our best to breathe as much life into that spirit as we can because that is about all we can do. The rest is up to Him.

I am broken, yes, but as the days pass and I find the strength to hand this over to Him, I can feel His peace and power in my weakness. And the more I lean on Him, the more I can feel the hope finding its way back into my heart, pushing out any preconceived images I have been holding on to. Because the only image that matters here is the one He created.

The love I have for Brooklyn outweighs any of this pain and that is how I know it is all going to be just fine. Just like He planned.


Anonymous said...

Lisa, One of the lines from my favorite songs is Strength will Rise as we wait upon the Lord and you and Brooklynn will be strengthen from Him. My philosophy is when you can't see what He has done for you in your life, just think of you life as a Rearview mirrow and look in it and see the wonders he has preformed, and you will go, Oh My God, Look!, What He has Done! And if she need a wheelchair to get her around, let it Be! At least She is seeing the World! Mary Ann

Tristan said...

I feel your struggle! My little SB rock star is my 7th child and he's just 5 months old. I look at the many possibilities and already know Mason won't walk. We've got family making a bumbo into a wheelchair so he can get mobility as soon as possible once he's ready. Mason's lesion began at L2 and went down to the sacrum. He can pull his legs in at the hip but can't push them straight again, nor can he keep them up, they fall to the side once he pulls them in. So many SB children have more movement. It's hard some days to already know we're not going to make it to walking in any form.

Acceptance does come in waves. I have hard days when I see all his 6 older siblings can do that he won't be able to do and I cry. God planned Mason's life and created his body perfectly for that plan. I know that. I still have to be reminded of it often though!

Lora said...

I've loved reading your blog and following Brooklyn's story. I honestly don't remember how I found it, but it was before she was born I think someone linked it on Facebook. Anyways, I love that you are so real in what you are feeling and dealing with, not just for your sake or Brooklyns, but I am sure there will be other Mama's who will read this someday on a similar journey and it will mean SO MUCH TO THEM! To know they aren't alone, that someone has been where they are. Of course your Mama's heart hurts, we all want our children to be happy.

My struggle is not the same, but having adopted a little girl with CP who can walk I find that I have similar feelings about her inability to walk "normally". People stare at her as she limps along with her little butterfly leg braces. People gasp when she trips and falls and look at me like I am a terrible devil-woman when I let her get up by herself because I know she is a big girl and doesn't WANT HELP, but they think I should run to her and brush her off and baby her or something.

I just want her to not have to deal with the stares and questions and whispers….but I can't fix that for her. I can only help her be the best she is capable of and I'm trying to find a way to make peace with that so that she can make peace with that.

Thanks for this post. I am not a spina bifida mom, but it still very much resonated with me.

Cassie said...

I just thought I would chime is as a mom with an almost 7 year old with SB. Caleb got his chair when he was 2 1/2 and it was without a doubt the best gift we could have given him. It changed his life. And the chair didn't mean we were giving up on walking. Caleb eventually gained enough strength to walk very well with AFO's and a walker. Tethered cord surgery in April has taken that ability away, either temporarily or permanently, and I have found myself back at the beginning trying to make peace with the wheelchair again. And it comes in waves. But at the end of the day my Caleb is a happy kid and he loves his wheelchair and the freedom it gives him. If he isn't sad, then why should I be? Your Brooklyn is beautiful.

Miranda said...

I remember those days of fear and like I had failed Trinity, but she loves her wheelchair! When she's in her chair it's like nothing else matters to her. We vision all these great dreams for our kids and all the achievements they will have in life, but something that I have had to come to terms with is that my dreams where not God's plan! A song I heard at church last night had a phrase in it, "He makes beautiful things out of dust!", and what a beautiful thing He has and is making in our kiddos!!

Stephanie Wilson she/her @babysteph said...

I've been thinking about you. You are an incredible mother.