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.



Tracy and Frank said...

I admire you so much, and from you I have learned its ok to cry. =')

KeicherMom said...

We love this book, and Todd Parr has a TON of books that have a wonderful message. What a beautiful post.

Leigh and Andy said...

oh kari...i am just waiting for those questions. waiting for what my heart will tell me to say, cause right now i have no idea. thinking of you guys as you are traveling through the "whys" now. you are such a great mama and your 3 (almost 4) kiddos are so blessed to have you!

Scasmflops said...

In tears as I read this post and heard about your struggles. Im sorry friend. My heart just aches.... I've already seen a glimpse of it in his eyes as he looks at the kids running around him... he's stuck on the floor. I've been praying that he too would know this is God's plan, and yes, it is for good. I broke down and cried in his presence a month ago and he crawled right over and curled up on my lap... I needed it. I think that whwn we face it with them, they remind us of all the good. You are a incredible mama and example. keep it up girl!Thank you for this honest post.

Cassie said...

I'm so sorry. I think it is impressive that Toby is so aware of his body and the differences in how it works. Caleb has asked a few questions here and there but I've yet to see sadness or tears from him, but I'm certain it will come. I'm certain he will wake up one day and say "Spina Bifida really stinks!" I think you are handling well. We all try to sugar coat things but eventually our kids will catch on and at that point we just have to be open and let the emotions flow and say "yep, SB does stink sometimes"

Colleen said...

Oh, tears here too! Nate turns 5 tomorrow, and he's not there yet, but a little buddy of ours who is about 6 months older has started rebelling against SB. From what I've seen, they all go through it, and some kids are smart and mature enough to start it early. Sending hugs your way.

Jill said...

What a fantastic, real post Kari.

acmcginnis said...

Thank you so much for sharing this story. Just makes me cry already, anticipating a moment similar one day with Lauren. I think you are doing a fabulous job! I'm glad I found your blog!

Rik4zmn said...

Kari, I am a Dad to a boy named Rikky that is 21 months old with SB. I am sitting here in tears as I read this because ever since we found out he had SB I have been wondering when he and I would have this same talk & cry. My wife and i love him more than words can describe and are both so happy to have him in our lives. God bless you and thanks for the post.

Anonymous said...

I just recently got this book for my 5 Yr old daughter who has SB and uses a wheelchair. She just started kindergarten and I thought this would be a great book for her teacher to read aloud to the class. She was happy to receive it and I know my daughter will love feeling like "It's ok to be different!"