Thursday, June 23, 2011

Things have changed

I havent fallen off the face of the blogging world!! I promise I havent! : ) I'm just pregnant and well that is basically like falling off the face of the planet when its number four!!

Tonight I have a post on my heart that Ive wanted to share for at least a week now but just havent taken the time to set myself up emotionally to write it all out.

Warning: I have a feeling this post could be hard for mommies to read who arent "here" yet but I still thought it important to write because most likely who will be "here" at least in some way.

Toby is five now. Five is big stuff. Five has also become the age where Toby is now struggling. Struggling with things I didnt think we'd struggle with for at least another few years. Toby is struggling with being different. There have been times that I think my heart would just break into two with some of the things he says. But at the same time I'm so thankful he says them. So thankful that he trusts us as his mommy and daddy to share what is going on in his little heart. He asks the question of why? the horrible awful makes my insides squirm, "why" question. He asks why we dont have a shunt. Why we dont have braces? Why does he have to have a back brace? He asks if we ever had braces when we were little. And he cries. Alot of the time he asks those questions he cries. It all started with the back brace we recently got for scolosis. It was almost like a lightbulb went off in his little head and he thought, "hey this stinks and this isnt normal!" Part of me wanted to play tough mommy with him. His orthotist told him it was like his thor outfit. I told him he looked tough. He cried. I wanted to keep telling him how cool it was, how smokin awesome it looked. but you know what? it wasnt cool. it didnt look smokin awesome. it stunk!!! so instead of my usual ploy of how amazing something really is. I sat down in our entry way with him that night and I held him and we cried. I dont know if I will ever forget it as long as I live. My heart broke because I knew he was hurting and I knew he didnt really understand. But we just sat there and cried. I dont think a few months back I would have ever thought it okay to let him see me cry like that. I would have hid myself in my room after giving him the "this is cool" lame talk. But things change and that night we just cried. Nate sat with us and we talked and we let him know it was okay to cry. It was okay to be sad. And you know, it really was okay. I cant even write this without crying now. I guess its still a little too fresh. or maybe im a little too pregnant : ) But its still okay.

Anyway, I tell this story to say that yea, we are struggling a little over here. I feel like the words we share with him now will help shape the way he sees himself, his disability and God. Its a hard thing to explain to a 5 year old that the God who loves them and only wants good for them would allow this to happen. It's hard, but I know that its true. I am clinging to that truth every time we talk. I pray that the truth will ring so true in my life and heart that Toby will see it as just that. TRUTH. I do believe that God made Toby exactly the way Toby was meant to be. I do not believe Toby was an accident, a product of medication or lack of medication. Toby is Toby and every part of him is the way he was meant to be.

In a totally different tone. We did discover a great book that is lighthearted but really perfect for this time in his life. The other day he was starting to get upset about his back brace again and Gracie ran and got this book to read outloud. I love that she had the thought all on her own.

It's called It's okay to be Different. (you can click the name and it will bring you to the amazon website to order)

I love this book. The first time I heard it Toby was repeating the words to his speech therapist.

"It's okay to have wheels."

"It's okay to need help sometimes"

"Its okay to eat macarroni and cheese in the bath tub"

I teared up at least through the first 4 readings.

Its just a fun, sweet, not too heavy book on differences. I think its been helpful. Its even been a good conversation starter on how soooo many of us our different.

Well, I hope this post finds you well. I hope you know that even though we go through rough spots, hard times and dark storms. They pass, They always do. Then we come out on the otherside of it stronger and better for it.


Monday, June 13, 2011

Decisions, decisions

Summer has officially started, and we're officially in "countdown mode" with regard to Esther-Faith's kindergarten. Oh, we're not counting down the days until she goes to school, we're counting down the days until we have to make a final decision.

To make a long story short: Private school close to me with no services (PT, OT, Speech, adapted recreation, etc...) that is all day, every day and close enough that I could get to her every three hours to assist with cathing.


Public school with services that only meets Monday, Wednesday, and every other Friday to which we would have to transport her but where she would have a nurse to help with cathing and then we have to find childcare for the other days of the week.

It is a HARD decision. And we can't seem to make up our minds. We've got our pros and cons for each. We've made our lists of "what-ifs." We've agonized over the whats and wherefores. And STILL, we can't decide.

I know, it's kindergarten. Except for our kids, it's more than just classes. The decisions go beyond what they'll learn to how they will learn it. Where will they have the least restrictive environment? Where will there be someone who knows the signs of shunt failure?

How do we decide?

If you've walked in these shoes, ANY advice you can give would be appreciated!

Monday, June 6, 2011


It has been a while since I have posted anything on here but I intend to get back into doing so more often. Because of the long absence I suppose I should reintroduce myself. :) This is Karen Orr, Carson's mommy ( We have recently added our second son, Silas, to the family. Everything is going fantastic and we are more than blessed. Yesterday, I heard an amazing sunday school lesson and I want to share it with you.

First the story was told of a man who fashioned himself an incredible sailboat to journey across the ocean. It was very large and beautiful for the eyes to see. The sails were magnificent. It was greatly admired and people were very complimentary to its appearance and grandeur. When it became time for the man to begin his journey many marveled and envied at the boat as it made its way out to sea. It was just so pretty and so perfect, they thought. Soon into the man's journey he came into a storm, and his boat was quickly turned upside down. In this position the hull was visible, and it was very obvious at this point why his boat could not withstand the storm. Although the sails were beautiful,and the boat was large, the hull was tiny and very poorly constructed. The man neglected the hull... nobody would see the hull, and therefore he regarded it as unimportant. He caused his own boat's failure.

Now the moral of this story. We are the boat. Our sails are what people see of us. How they see us. How we dress, do our hair, our make-up. It could be our nice homes or our nice cars. The sails are our material things. The hull, is our soul, our heart, our inner selves that are not visible to the eye.  Nobody sees our hull, they see our sails. So, all too often we decorate our sails, we worry about our sails, and we spend our time and money to gain more material things so that we might be complimented. Of course the storm referenced in the story is none other than the storms we face in our lives, the harder times. Because I am posting this on a blog entitled Spina Bifida Kids I can safely and assuredly say that we all know what it is like to face a storm in life. But friend, I ask you, how is your hull doing? Are you spending any time investing in what will sustain you through the storms. When I heard the words, "It is Spina Bifida, a birth defect that will affect your child." It did not matter what I was wearing. My house, and my car could not carry me through the trial. My faith did, my God gave me strength and peace and comfort. He still does. It is our responsibility to build our boats, and ours alone. Will yours make it through?

This was a blessing and encouragement to me, I hope that it is likewise to you.