Monday, September 27, 2010

a moment of triumph

Im having a rough day. One of those nothing goes quite according to plan cause ive been at appointments with Toby. Trying to homeschool, now juggle 6 therapy sessions a week and any other extra appointments are taking a toll on my emotional and mental stability.!!
So instead of sharing all my woes with you and sitting and feeling very very sorry for myself. I'm going to share a happy moment.
I hope that people from my church family will especially enjoy this.

Since our Pastor has been doing the "kids choir" every Sunday morning Ive enjoyed and not enjoyed it. Of course I love seeing all the kids up there and I love watching Gracie so proudly march up there to sing and all of my friends kids. But there was always someone missing. And that someone sat right next to me, (well sometimes, sometimes he prefered the smyer family) : ) Toby would never go up. The first time he tried he started making it that way and I honestly saw the shock of stairs and kids running hit him. It made my heart hurt so bad for him. He just broke down crying right there and turned his little walker around and sat down with me. That was it for him. He wasnt going to try it again. Every Sunday Pastor would announce the kids to come up, I would lean over and ask, "Toby do you want to sing?" He would say, "NO" and I wouldnt push it. I just left it alone even though I wanted to be the pushy, you will get over this fear right now, type of mommy. So every Sunday even though I loved it, I hated it because it always made it so obvious how hard things were for him. Things that werer so simple for the other kids and how he saw the difference.
Well about 3 or 4 weeks ago. I leaned over and asked. and He said, "Okay. I'll try it." I about died right there in my seat. I about had a panic attack. Luckily Jessica (toby's best teenager as he calls her) has always said that when he's ready she would take him. She was sitting 2 rows ahead. I got her attention and off she went with him. I love that she knew just what to do. She didnt hold him the whole time. She held him till he got comfortable and then put him down and held his hands so he could stand right with all the other kids. It was a moment of triumph. Such a small thing but it was amazing.Only a few people knew how much that moment meant. And every week since he's gone up without question. The last 2 weeks he's gone with his walker with different people helping every week.

There are so many aspects of this story I love. And even though its kind of a bummer day. I cant really help but have a sense of happiness when I think about it.
hopefully I'll post a picture soon


Jill said...

Those moments are amazing. What a fabulous memory to hold on to!

Jack Eherenman said...

It is good that you kept asking him to become involved. Just because he had to do things differently, he was still included and got something he really wanted to do, with a little help. That's the key. Give him the help to get him started and support as needed, but let him "stand " on his own strengths, in what ever he will try. Somethings will not go well, or as successful as others, but if he can try it, he will decide on those things he likes and those things he doesn't, and what it will take to keep it up. His disability should not get in the way of trying to figure out how to do anything he wants to try. There are always ways to modify any situation if you really try to look past the obstacles and get him into many things. There are many many role models out there. He will eventually become a leader for other to follow his footsteps as he becomes older and has many successes. It is hard to look at our kids just based on what they are doing, and not comparing them to what others are doing. Once we look at where they are, compared to where they were, we can then see just how far they have come. The rest will be up to them and also up to us to see how we can help them along the way. We can't and shouldn't do everything for them nor expect them to do or not do certain things before they try them. I have many athletes and friends who didn't expect to do many things until they had tried a few things, has success with them, and then branched out to try other things on their own, because they had the confidence to try, even if they didn't do them as well as others. The important thing was they tried it and did their very best. And then tried to improve what they were doing. Success isn't always being the best, but doing our best, and doing better the next time.
Give him lots of opportunities and he will do just fine. He will know that he will do some things well and struggle at others. But we all do that. We will filter out those things we like and stay with them.
You are giving him things at a young age that will carry him through to try other things later in life. The blessing is not in what he can't do that others can, but what he is doing now that he wasn't before. They may be little things to us, but they are huge to him. And your love will always be there in good times and tough times.

Jack Eherenman said...

I know how much it sometimes hurts for things we like our kids to do, but our blessings we get from them far out weighs them. I wouldn't wish a child with a disability on anyone, but I wouldn't change a thing because of what it has done for them, our family and me personally. It is hard to explain other than we have all been changed and blessed in so many ways when we look for them.
I wish I had the strength that my kids, and the athletes with disabilities, I have come into camp have. I am always amazed at the things they can do and the vast abilities they do have.
I know it is very trying with all the things you have going on right now, but it will get better and easier as Toby gets older and can do more for himself. He is going to continue to amaze you with things. Always give him the chance to try things, to succeed, to fail, to get back up and try again. He is doing so much more now than some who have his disability. Just enjoy every minute, even the struggles. The time you are spending with him now, will only be a memory in the short future, and you will miss having him around as much as you do now. Yes it's tough, but you will yearn for time with him as he gets out to enjoy things with others and grows up to be a fine young man. It happens to all of us, just in different ways.
I have been there with most of the things you are going through, in different ways, and miss some of the great times we had, even when we were dead tired. Time has a way of letting us remember the good times we had and putting some of the bad times or hard times behind us.
I hope this helps. I don't want to make it seem like you will never have tough times or shouldn't have these feelings when they come up. Just don't stay there and let them rule your life. Your joy is found in so many other things Toby and kids like him are doing and accomplishing. Just judge him on the things he is doing at the time and personal records or improvements he is having. It will make him know that he is improving and is having success. That will carry him and you along way.
I'm glad he is singing as music is a great healer and way to express many things one is feeling. It is a great skill and talent to have and to share. I have a girl, who is a very good athlete, that comes to my camp, who is now a sophomore in high school and is leading the singing at her church. She is in her high school choir, jazz choir, and loves to sing. She is probably close to about the same level as Toby. Loves racing on her track team, plays basketball, etc, just a good athlete and even though she has many physical obstacles, doesn't let it get in the way.
I can see so many things in Tobys future that I think and hope are possible for him and you to experience. I will keep you and your family in our prayers. I think you have a great future ahead. Focus on the road ahead and how God is leading you. You are fulfilling a purpose for Him. Just look at your family of friends who follow your blogs. You wouldn't have met many of them without what you are doing. Toby has given you so many things already. It is hard to think of what you will get in the future, but I know you are a better person because of him. I hope I have become one because of the people who have come into my life.
God bless

Bec said...

:) I just wish I could see all that goes on in the kids choir. I just get the back of their heads. I did notice Toby go up though...made me REAL happy!

Colleen said...

Yay! Great story! And I just realized that Toby is just 5 weeks older than Nate! For some reason I thought he was older.

Melanie said...

Hi Kari, I was in the middle of this long, eloquent note to you, and (on my husband's computer! grr!!) - lost it! So, if part of it shows up on here, SORRY!!!

Ok, I saw that you posted on our blog and thought I'd pop over and say hi.
Can I say that I LOVE this post? I am SO GLAD that Toby got back up there and sang!!That brought tears to my eyes!

I know that you read on my blog about being full of grace...

I just wanted to encourage you. I know that you are a little farther along on this road than we are (Rach is only 2 1/2).

I am really trying to find balance in our lives concerning Rachel's condition:
1) I will talk to anyone, anytime about it. I love when people want to talk about it, partially cause I get to tell them what a miracle Rachel is. (The doc originally thought it was something else and told us to terminate.) I want to be comfortable with her condition. I know that if I seem ashamed or try to hide it, so will she. I know that if I live as if it is just a part of our life, so will she. It is what it is: I know that these bodies do not work as they should (and the closer I get to 40, the more I know that to be true!) And the more I talk to other parents, I know that they pretty much ALL struggle with something for their kid. Can I say, that I am SO GRATEFUL that Rachel's condition is just physical and that she doesn't have a mental disability? I think that would be so much harder.

(trying to balance that with)

2) Not letting her disability define us or her. I don't want her to be known as "that Spina Bifida kid". And that's a big reason why I don't have the ribbon on my car or have joined all the groups. Maybe that's a bit naieve, but that's how I have had to deal with it, and each person's experience is their own. Rachel is so much more than just her AFO's...I want people to see past that...

Ok, don't mean to go on and on...I just mean to encourage you. I know, from reading your blog, that you are fellow believers...
Our life verse has been this (and I will sign off with):

Therefore, we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far exceeds them all. So we fix our eyes not on what is seen but on what is unseen. For what is seen is temorary, but what is unseen is eternal...