Thursday, October 30, 2014

the word I hate hate hate and ending spina bifida awareness month

Ive been silent the last couple weeks on the Spina Bifida awareness. But thats cause Spina Bifda took up my last few weeks.  Its life. Surgery and Healing trumps blogging any day.

But I knew I wanted to do one more post. That I had one on my heart and that I wanted to end Spina Bifida Awareness month with it.


I've written about it Here before and have talked openly about my own personal struggle multiple times.

When people describe Spina Bifida. When they talk about it. When you hear about it. When the conversation comes up there is a word that ALWAYS, ALWAYS ALWAYS comes up with it.

I hate the word.

Its awful.  

It makes my stomach sink

It makes me feel ill.


When someone uses the word around Toby I want to pop their mouth. With a chair. 



Defect.


I wish I could take that word out of the dictionary.

I have a strong dislike for it. (if you couldnt tell)

So whenever anyone throws that word around. (which i get the technicality of it, but we arent talkign technical we are doing mommy talk) it makes my insides feel they just got squeezed and spit out.



Here is the definition for it.



This is what what is used to describe my son. Before we heard spina bifida we heard the words birth defect.    


For a while I never really addressed this. Never sat and analyzed it. But it hit me. Defect means somethings wrong. Something went wrong. inadequacy, shortcoming, deficiency, imperfection.  For years I struggled with that thought. For seeing Spina Bifida that way. 

The word defect can give the thought of God missing something. All these other babies came out great and perfect and exactly right. Healthy. But oh....this one...this one slipped through the cracks and is now defective.  Defect gives the idea of losing importance or of losing its worth. Of God missing an opportunity to do what He was supposed to do.




is this the way we view disabilities?

But let me tell you. After years of struggling. After years of fighting guilt and uncertainty. 5 years ago this month God set me straight. 
God didnt miss something. God wasnt unaware. It wasnt something I did or didnt do. There wasnt something with my body and they way my body provided for my babies. 

5 years ago I wrote a post called, "The fingerprint"  of course I cant figure out how to find the link so I'm going to post a little section of it.  I wrote about sitting in Nates teaching to the teens as he hit on disability. He spoke of all the familiar feel good verses. 

He spoke on being knitted together. When God was forming Toby. When Toby was growing in my womb was Gods back turned? Does somehow the verse of being knit together not apply to Toby? Or does it even more so?

Nate described it this way, (I'm taking this segment out of his book Be Confident in Your Creation)

"Did you realize that you are the work of the only true God? The One God who formed and created all heaven and earth and the same God who only has power to rule all creation is the same God who took the time and care to mold you as a potter molds the clay! This fact should make you jump out of your seat and praise God for your creation. You are the possession of the King of Kings and Lord of Lords. Perhaps some perspective will help you wrap your brain around your personal value. The price of a well-made quality guitar can range anywhere from $250.00 to $1,000.00. Now you take that same guitar and have a big name country music star sign the guitar all of a sudden, the value of that guitar skyrockets. The personal signature of an important person adds to the value of the object. You have the signature of God in your life. If the signature of a country music star can add to the value of a guitar, how much more would you say the signature of God adds to your value? You are priceless because God created your personally and left His fingerprint of expression."



This is now have I view Toby now! Spina Bifida isnt a defect. Its not a mistake God made. Spina Bifida is God putting his signature of Toby's life, on all of our lives. He allowed Toby to be formed this way. He wasnt unaware. This was His purpose and His plan.  


So when I hear the word defect to describe Spina Bifida its like nails on a chalk board. Toby is not defective. His worth isnt diminished. His value hasnt changed. If anything God took special care to put a special touch on Tobys life. Toby has God's fingerprint right there on his back.

Tuesday, October 14, 2014

I knew someone once with spina bifida and they walked great...

Spina Bifida is confusing. Its hard to grasp on to and understand. 
I know lots of us have heard, "I had a friends cousins uncles best friend who had spina bifida and he walked great and you'd never know."

And then...
you can see stuff like this and think, okay I think I got it. I have broke the code... 

and then.......



But then you see a kid walking without crutches at the same level as a kid thats a full time wheelchair user.


Why is this?  What's the deal?


There are kids who had fetal surgery. There are kids who didnt. There are kids who have had tethered cord surgery, there are kids who are waiting it out. There are kids who have shunt surgery after shunt surgery and then their are teens with the same shunt they had since they were tiny.  

We shout awareness and we play videos but then I think it gets a little hazy.  One kids dancing and jumping, another kids spinning in a chair, and another kid is running with crutches and we are trying to tell everyone they have the same thing!!?   


Well people, that's spina bifida. It doesnt pull punches. It cant be contained in a paragraph in your medical book. It likes to confuse and scare. As soon as you think youve got it figured out it laughs and pulls another crazy turn. 


But then I think it makes it hard for us mamas.  I dont know about you but every time I see a kid that is dong more than Toby that is his level I can doubt myself. Did we do enough therapy, did I push enough, did we mess something up. Why isnt he doing so well? We are happy for them to a degree but then we second guess. Because Spina Bifida is a guessing game half the time. We get offended by people posting about the joys of walking even though they have SB.  (because we know how much happiness we see when our kid zooms by in his wheelchair.) But then in the back of our mind. We wondered if we missed something. We worry we are to blame.And if we dont worry we are to blame we worry if others THINK we are to blame. A lot of the decisions surrounding spina bifida rest on our shoulders. How much therapy, how much pushing, this elective surgery, that elective surgery. Is it tethered cord, is it not tethered cord. Did we make the wrong choice? Did we jump the gun? Did we not move fast enough?

Remember how we all wish we could go back and talk to our pregnant selves and tell ourselves it will be okay.  
WELL....
I wish mommy of teenager Toby could come to me now and say, "hey dont worry about XYZ, thats not a big deal."  "hey dont blame yourself for that one."  "Hey you did the very best you could and knew how."  "Hey ya know that therapy just wasnt a big deal go let him play more."  "Or hey that right there, that is a big deal, put down the video game and go work him hard on that." 

But we cant. And so the doubt and the mess is there......And here is the only clear part that I've come up with.

It doesnt matter what others are doing. It doesnt matter the level. There is too much that comes into play with Spina Bifida. I couldnt figure it out if I wanted to.

But what I do know is that I want to be able to look at teenage Toby, I want to look him in the eye and say and know it to be true.....

We did our very best. We tried our very hardest. And we always did whatever we could no matter what. 

because thats what really matters....doing our best....... For Him.    





Wednesday, October 8, 2014

The Unsung Heroes are getting a Song

Toby and I hear a lot.....


"you are so strong."

"such courage."

"your faith is an inspiration."

"we dont know how you do it."

"You are so brave."

"Wow."

"You are such an example to me."




And we appreciate it. Every word of it.

but today in light of Spina Bifida Awareness month I want to take time to take the spot light off Toby for a moment.

I do believe he is all of those things, but there are others in our lives that are those things and more.

We know not every family has this. We know we are blessed beyond all we could imagine. 



To my Friends

You are so strong. You know that hanging out with me means baggage. You know it means helping me. You know it means work and you do it. You call me. You text me. You are there. You listen to my fears, you see my tears and even when there is nothing to say you are there. You can jump from having fun to hearing stories that break your heart. You sit in ICU rooms with me and sneak in ice cream. You are strong. You get 4 phone calls a day because I'm mad about the way insurance messed up again, and you still pick up the phone on the 5th call. You send boxes. You design and ship shirts. You are probably broke from fundraisers. You watch kids, lots of them. You go out late with me because thats the most feasible time for me to get away. You are what I need and when I need it. Week after Week, month after month, year after year. When I've lost all faith you give me some of yours. 
you are so strong

To the Siblings

Such courage. You get left behind. You get told to wait. You get a tired Mom.You sit by during endless phone calls to doctors and insurance companies. You know at any moment our normal day could end up at the ER or in a doctors office. You keep going and that takes courage. You wait. You help. You are sensitive to his needs and our needs. You are supportive and happy. You dont complain about the presents and the seemingly endless movies he gets to watch. You help with babies and do more chores than probably your fair share. You get scared and you get uncertain but you keep going. You stand by while people ask about him and not you. You stand by while people talk to him and not you. You are courageous. You are stronger than you know. 
such courage.


To Tobys Friends

You are such an example to me. You wait on him to catch up to you. You play the games he can join in on. You visit him in the hospital. You spend your money to buy him a present. You come hang out when you know there wont be any physical activity. You are the example. You carry arm crutches, water cups and balls. You dont bat an eye when he runs over your toes or knocks into your shins. You compete with him, because you dont treat him differently. You are the example. He's your friend not because you dont see the medical equipment, not because you haven't  noticed the scars, its because you dont know care.  I love each and everyone of you for that. 
you are such an example to me.

To the others (you know who you are)

We don't know how you do it. You bring us meals. You call us. You watch children. You fill bags full of snacks for hospital stays. You never seem to tire of doing for us. You call us and say, "We want to know. We want to understand. We want to know what he goes through," and you mean it. You pray. You think of us. You talk about us. We don't know how you don't get sick of us. You send us messages on facebook. You comment on every picture, blog and article. You go the extra mile to help us find equipment. You show up at our door with exactly what we are praying for.  We don't know how you do it.

So this is for you. The ones behind the scenes. The ones that really have all the strength. The ones who carry burdens we have carefully handed over. The ones we trust. The ones we love. The ones that make this month of Spina Bifida Awareness so much more than about Toby.

We love you all


So what about you?  Who is in your life that blesses your socks off and makes your journey easier?




Sunday, October 5, 2014

the purpose of the photo

Today I was asked/told

"I'm not sure I understand the purpose of posting this photo."

along with asking about his schooling, what he can do and what he cant do in regards to the photo.










and this is the photo in question.



  

Now usually im an oversharer. I share, share, share, type, type, type, photograph, photograph and photograph.   But this is something I've never shared. Nothing I've never done.   It just didn't seem like mine to share. My choice to show. 

But with it being Spina Bifida Awareness Month and all...I asked him.  He's talked a lot about showing scars and sharing things with close friends. I thought he might be ready for it.  And he was. He didnt bat an eye at it.   

It was a big moment for me, for us, for him.   And so when I clicked on facebook 700xs to see what the reaction would be to put something so "private" out there I was slightly shocked by the response of one.(especially because it was someone with Spina Bifida)

So I want to respond here. In detail and with some thought.


This picture means a lot.  It was snapped quickly with an iphone and uploaded in minutes, (because for real 8 year old boys have no patience for lighting and photo shoots) But this picture very well could have taken me hours, days and weeks to plan out.  I could look at this picture so many times because its so much all rolled into one.
  For one the fact that he would willingly share this image with the world shows me that he's in a good place. It shows me he's not ashamed.  He's not ashamed of his scar. Of what his body looks like and how its different.  It shows me I'm in a good place about it. Spina Bifida can seem like a shameful diagnosis for the mommies because so many people are misinformed about  folic acid keeping spina bifida away (not true, not proven, many mommies take folic acid months before their pregnancy and their babies still have spina bifida) I actually had a doctor ask me once why I didnt take my prenatals because clearly with Toby having spina bifda that was a fact.  (first and last appointment with that doctor,) But its always my fear, always in the back of my mind. that people think its my fault. So to put it out there says, a lot.
It shows me his courage. This scar isnt just from his orignal back closure surgery at 1 day old. This scar isnt just from his 2nd back closure surgery at 2 weeks old. This scar is also from his tethered cord surgery. Moving on from that surgery. Healing from that surgery. Walking after that surgery. That all took courage.  It shows me my courage. I'll never forget the first time they took his bandage off to show me his back as a few day old baby. I almost passed out. I felt like a coward. The room was spinning and I had to go sit down for a minute in a chair, but I didnt stay there. I didnt stay in that chair. I stood up, walked over and learned how to do dressing changes on his back. It took courage. When I held my 2 week old and had to hand him back over moments before  we were about to take him home from the NICU because I felt spinal fluid leaking all over his back, knowing this meant a longer stay and another surgery. That took courage. I was full of fear feeling that fluid on me, but we handed him over for another surgery. That took courage.
It shows me hope. When we saw his spot on his back at our 20 week ultrasound and first heard the words spina bifida we had hope. When Toby came on May 19, 2006 all we had was hope. We clung to it. When they took him to the NICU and I didnt get to hold him. I had hope I would hold him soon. When he had his first surgeries I had hope he would be okay. When he had his tethered cord surgery I had hope that he would walk again and be even stronger. Hope that better days would come. That it might not be so hard. Seeing the scar reminds me that hope is always worth it. Even now in these tough days. I need to be reminded hope is worth it. 
It shows me strength. Toby's body has fought. It has not beaten him. Toby's body has been through more things than I care to imagine. Toby is a warrior. I try not to glamorize spina bifida or say its more than what it is.  But for real people.  Check that stinking scar out. He's a fighter. He's got some kind of awesome strength. I'd be a fool to overlook that. The scar is a sign of everything we have fought against and yet everything that we have also embraced. 



and more than anything else 
It speaks of life.  
This surgery. Those scars. Those saved his life, and if that were the only thing that I could say,  then that's enough for me.


profits and prayers



Its Spina Bifida Awareness month but I'm jumping to a totally different topic today. 




Any idea where I'm going with this? Now this is a blog post that I want feedback on. I want to hear what you think.  So look at this as an open discussion.

In almost any church in America you can see this.  










And in and of itself none of these things are bad. As a matter of fact some of these products are pretty stinking awesome.  I've gotten a kitchen with some pampered chef, im typing with jamberry nails and Im wearing marykay makeup. I know you probably think I'm a hypocrite now. But I want you to understand that my problem is not with the product.

12 And Jesus entered the temple2 and drove out all who sold and bought in the temple, and he overturned the tables of fthe money-changers and the seats of those who soldgpigeons. 13 He said to them, “It is written, h‘My house shall be called a house of prayer,’ but iyou make it a den of robbers.”

I dont know about you but the fact that Jesus was angry. That he actually overturned tables makes me step back and hesitate. Makes me want to sit back and think before I do. I certainly wouldnt want Jesus coming back and being angry at what He sees me doing in church.    I believe that there is a great need to network in churches and that is beautiful and awesome and really neat. I love when I see people using Christian businesses and helping them grow. I love when people have good products that I can buy easily. What I dont love is when I feel like church members are being bombarded and hounded and pushed to order, to go to a party, to spend money that maybe they really dont have.   Its frustrating to me and this verse pops into my mind. I think, man, are we any better than them.  With me having a photography business (and I use that term loosely) I feel like I have to be very careful when offering photography to people. I have to make sure that people want/need what I'm offering. That I'm not pushing, guilting or otherwise using my church membership in a way that shouldnt be done.  That if Jesus were standing next to me I would not be getting my pamphlets, catalogs and business cards knocked out of my hands. That if Jesus were standing right next to me He would see that my heart and mind is set on worship, on growing and on changing.  Am I worrying about my profits or my prayers? I think its a balance. But I feel like there are plenty of times we lose that balance. 


And please dont get me wrong. I think fundraisers and things like that are great. I think its great to get our church family involved. And I also dont think its wrong to offer these products. (so please ,please dont put words in my mouth that arent there)  I think its when we take it to the next level. And maybe that level looks different for different people. But I think its a least worth the thought. At least figuring it out. Making sure we arent crossing lines and we arent pushing and shoving and turning God's house into a marketplace for us to make a profit. And honestly thats hard for me to say as most of my photography profit comes from church people. Again I dont think its wrong to offer. (cause guess what!? Ill be offering some fall mini sessions soon as a fundraiser) But hopefully I wont be knocking anyone down and throwing flyers at you in church. I will post it and then wait for interest and if not then I will move on. Because for me thats the level I'm comfortable with. Its what God has put on my heart personally.

I know this wont be a popular post. I know this wont get a lot of shares. But its been on my mind.  and I'm curious. What do you think? What's your take on this? Would you be driven out?  Have we taken it too far in our churches or am I jumping to conclusions?



and just because....seriously how cute is she!!?




Friday, October 3, 2014

Filling up your newsfeed

Ive thought about what to write around this time. I've even sat down a few times to write and it just doesnt come.

None of it seemed enough.

Spina Bifida Awareness is important. Its super crazy important.  When we heard the words 'spina bifida' we had no idea what it was or what it meant. We had no idea what our future looked like. We had no idea of anything. We just knew it was bad, very very bad.

We sat in an office hearing words that sounded like a foriegn language. Hydrocephalus. spina bifida myelomeningocele neurogenic bladder.  What the what?!

We were young. We had a 8 month old (im guessing, im too tired to do the math) and we had no idea what what going on.

It was like this Hurricane diagnosis had just swept into our life and screwed it all up with a bunch of words that had no meaning.

We are 8 1/2 years out from those horrible hard first days.

In that time Ive talked to a few moms that were pregnant with their babies. Sitting right where I was sitting. Scared out of their mind and having no idea of anything except that it was bad, very very bad.

Ive gotten emails and phone calls. Ive had the opportunity to share how much worth Toby has and beg them to see the same for their child.  I've answered hard questions. Ive said hard things. Ive fought for these babies and fought for their mommies to see what we can see now. How worth it it is. Some mommies I've heard the end of the story, I've seen their babies born through pictures. I've watched their babies grow to toddlers through pictures.  And other times I've never heard back. I never got a return phone call, a facebook friend invite, an email to let me know all is well.  At that point I can only imagine what the end result was.

Spina Bifida awareness itsnt about finding the cure. Its not about folic acid and taking prenatals. Spina Bifida Awareness month is about sharing the worth.


Its worth it.  

We mommies with our babies with Spina Bifida. We mommies with our toddlers with Spina Bifida. We mommies with our kids and teens with Spina Bifida. And I think we can venture to say that the adults with Spina Bifida feel the same way.

For us Spina Bifida Awareness month is about letting the world see, We are okay. Its okay. The kids are okay. Its about sharing the journey. Seeing the joy. Its about one less abortion. Its about one more birth. Its about the worth.  They are worth it all. It is worth it all. Every fight, every tear, every pain.  Because we also get lots of joys, triumphs and greatness.

So maybe You think we are all a little crazy. Maybe we annoy you with filling up your newsfeed.  Maybe you think awareness is no big deal.
Id like to see you try to explain that to me 8 1/2 years ago.
But man if in that room 8 1/2 year ago I could have remember a video, a blog post, a picture and been able to attach it to the word Spina Bifida. Maybe that video, blog post or picture would have helped replace some of that fear. Maybe that video, blog post or picture would make me realize that it was gonna be okay and that itd be worth it.
Maybe it would have been easier to say, hey, its going to be okay.
It will be worth it.
because it totally is. 


So on I will blog, On I will post and On I will share.