Thursday, June 30, 2011

Steadfast Progress

Caleb and I were eating lunch alone together today while Benjamin was napping, I can't remember exactly what we were talking about but Caleb made the comment: "I can't walk".
Ouch.
And he didn't say it with sadness, he just said it very matter of fact.  So, of course I jump in and say "Of course you can walk honey, you walk all the time."  Caleb clarified that he meant he couldn't walk without his walker.  And he's right.  He can't walk without his walker.  I've noticed a real longing in him to just walk, like everyone else.  He has said several times recently: "I just want to walk by myself" (again, not in sadness, just matter of fact).  But he can't.  He needs his walker.  I felt the need to immediately show him how far he has come.  I pulled up a video of him when he was barely 2 years old and had just gotten his first pair of HKAFO's and was taking steps for the very first time.

video

 I really wanted him to see how hard walking was for him and how much slower he used to be.

video

Two years ago Caleb "graduated" out of his HKAFO's and got AFO's.  I wanted him to see how unsteady he was when he first got those AFO's.

video

And I wanted him to see the progress he made in just a short time.  (This video was taking 3 months after Caleb first got his AFO's.)


And here is Caleb walking a year after getting AFO's.

And finally a more recent video of Caleb running to first base!

 

I don't know if Caleb truly realizes how far he has come.  I know that even I forget the long road he has traveled.  I needed to see these videos today.  I needed to see how much he has progressed.  I needed to see how strong he has gotten.  It's easy to focus on the things he still can't do but the truth is that there are so many things that he is doing now that he wasn't doing a year ago.  It is constant progress.  Steadfast.  Is it as fast as I would like, or even as fast as he would like?  No.  But it's progress.

Today was physical therapy at the playground and Caleb DID NOT want to go.  And I almost let him out of it.  I almost said: "Okay, we will skip the playground today."  But I didn't.  We went, even though he didn't want to.  And he did great.  He is faster and more confident every single time.  I doubted myself earlier in the day for making him go and tackle that playground but then I saw these videos and I'm reminded that this journey he is on isn't easy.  He has to work hard, even when he doesn't want to.

I've been trying to get him to use his forearm crutches too.
He is so not ready to walk with these crutches.  He wants to.  But there is no way, he just isn't ready...yet.  I've been trying to get him to just stand and balance with the crutches.  It is so hard for him, and it seems like there is now way he will ever be able to walk with these but there was a time when he struggled to walk with his HKAFO's but he got stronger and he did walk.  And he struggled to walk with his AFO's, but he got stronger and he does walk (and even runs sometimes).  So we will practice with the crutches.
He will get stronger.
Everyday is progress.
Redefining.
Steadfast.

Monday, June 27, 2011

One Weekend. 2 Birthday Parties.

Caleb was Mr. Popular this weekend and had two birthday parties to go to.  His buddy Bryce's party was on Saturday.  The theme was Indiana Jones.  Too cute.
Caleb had a lot of fun at Bryce's party.
There was a water gun fight.
Caleb, Bryce and Nathan just sat there shooting each other with water guns.  It was too funny.
Little stinker trying to shoot his mom with a water gun.  Maybe he is tired of me taking his picture??

There was a silly string fight.
I think this was Caleb's first silly string fight...he loved it.
In case you are wondering, silly string is really hard to get off of walkers.
There is silly string all in his glasses and hair.  Look at that smile, I think someone is having a good time.

Where is Benjamin you ask?  Well, he was having his own fun.
Picking up piles of leaves and throwing them is always a fun activity for Benjamin.
Oh, and getting to eat a blue lollipop is pretty fun too.
The lollipop matches his eyes.  He's so cute.

There was a small playground for the kids to play on.  Caleb decided to try out his new skills and attempt to climb the equipment by himself.  Totally his idea.
So proud of himself!  And you know what?  I'm proud too.

And just for fun here are some of Bryce's past birthday parties.  It's fun to see how much our kiddos have grown.

And then on Sunday, Caleb went to a birthday party at a local petting zoo.  It was super hot and all us adults were absolutely melting but the kids had so much fun.  It's like the heat just doesn't phase kids at all!

We saw the goats first.  And the goats loved Caleb.
 The goats just surrounded him.  Maybe they have never seen a wheelchair before or something.  They did like to munch on his braces for some reason.
This black goat kept trying to head butt Caleb's chair.  Glenn had to keep pushing the goat back.  It was a bit comical.
Benjamin preferred to keep a safe distance.  He was more interested in playing in the dirt and if you had been there you would have heard me say (several times): "Benjamin get off the ground, that's not dirt!"  Goats poop.  A lot.
I just liked this picture.
The boys got to ride a pony.  Benjamin loved this!  I was holding him to make sure he didn't fall off the pony so I wasn't able to get any pictures of him, but trust me, Benjamin loved it!  He sees his bubba ride a horse every week so I think he was excited to finally get to ride a horse himself.
Checkin' out the tractor.
These are our attempts at getting a picture of the family.  It's not easy to hold the camera out far enough to get a picture.  And it is really hard to hold the camera out to get a picture while you are on a hay ride!
That is one good-lookin' family right there folks!  The cute boys make Glenn and I look good. :)

Thursday, June 23, 2011

Finding Balance


Sometimes I find it difficult to achieve a balance between Caleb having Spina Bifida and Caleb just being Caleb.  Does that make sense?  I'll try to explain with a recent example.  I had thought about sending Caleb to a few different VBS programs in our area this summer, instead of just going to the VBS at our church.  But then I second guessed myself because I wasn't sure how to handle it.  Everyone knows Caleb at our church, I don't have to explain anything anymore.  They know him.  Other churches don't know Caleb.  So I wondered if I needed to call ahead to a church to say "Hey, I'm bringing my 5 year old to VBS at your church this week, but wanted to let you know that he has Spina Bifida and will be using his wheelchair."  Or could I just do what every other parent does and just drop him off with no explanation at all?  Do you see where I am going with this?  Is it necessary to "prepare" people in advance just because Caleb has Spina Bifida?

And this isn't just about VBS, I can think of other examples as well.  I try to find opportunities to get Caleb around other kids and people that have wheelchairs, braces, and walkers.  I jump at the chance to expose him to adaptive sports so he can see all the wonderful things that are possible.  But sometimes I worry that I don't take him to do all the things that other kids his age would do.  Does that make sense?  I love getting him together with his fellow SB buddies but I don't necessarily work to set up play dates with other kids.  Am I defining him?  Am I keeping him from doing things because I make decisions based on the whole SB thing?  How do I find the balance?  The best of both worlds?  I wonder if Caleb will find it difficult to achieve balance as he gets older, as a teenager and then as an adult.  I'm sure part of him will enjoy meeting with others that share the same experiences as he does, all the things that go with SB but I'm certain part of him will just want to fit in and not just be "Caleb with SB". 

I wonder if I do too much for him.  I do a lot for him (and Benjamin too), not because I don't think he can do it, but because I can do it faster.  And maybe this isn't a SB thing, maybe it is just a parent thing or a mom in a hurry thing.  I can get him dressed faster than he can do it so I just do it.  Well, he's about to be 6 years old and I'm certain I won't be getting Benjamin dressed when he is 6 so why in the world and I dressing Caleb?  This has been one of my goals this summer (along with tackling the playground).  We have been having Caleb get himself undressed at night before bath.  It is somewhat difficult for him and he was a bit resistant at first but he does it.  Getting pants/shorts off are the hardest for him to do but he does it.  Could I get him undressed faster?  Without a doubt.  But I'm not doing him any favors by doing these daily tasks for him.  I'm reminding myself that I am not raising little boys, I am raising men and future husbands.  Caleb is very capable, and I know that, but I'm am sometimes guilty of not giving him the opportunity to show me and himself how capable he is.  I admit fully that I jump in and help when I see him struggling with something.  It takes restraint on my part not to come to his rescue.  I see the pride he feels when he does something new on his own.  He loves it.  Mastering a task sends his confidence through the roof.  And I want him to be confident.  So, I am taking a breath, and deciding right now to give this boy, this future grown-up, more responsibility.  Not just with dressing/undressing, but with other things as well.  He often asks me to get him a drink so I do but ya know he is capable of walking to the fridge and filling his cup with water.  Sometimes the little things are just as important as the big things.   I feel a breeze of change blowing folks!

Does anyone else out there find achieving balance difficult?  Am I the only one?

And because no blog is complete without some pictures...
Caleb and Benjamin had some fun splashing in a puddle today.  Their socks and shoes (and Benjamin's shorts) were soaking wet by the time they were done.

I took these pictures of Benjamin a couple of weeks ago while Caleb was doing his horseback riding. 
He was fascinated with the wheelbarrows.  I love that little booger.

I even find achieving a balance with this blog to be difficult.  I worry that I focus too much on Caleb and Spina Bifida and not enough on Benjamin and how precious he is.  He is a lot of personality in a little bitty package.  I am so thankful for Benjamin.  Whenever I feel sad about the 2 pregnancy losses I had before Benjamin, I remember that if I hadn't lost those babies then I wouldn't have Benjamin.  And he just brings me so much joy.  I need to do an "all about Benjamin" blog post soon so I can share all of my favorite things about him.

Thursday, June 16, 2011

Pool and Playground

So it is already super hot here in Texas.  H.O.T.  Really hot.  And it's only June, which means this is just the beginning.  To help us beat the heat this summer I decided to get a pool.
Clearly nothing fancy but the boys love it and it's roomy enough that I can get in as well.
Benjamin likes standing under the sprinkler "water feature".
Caleb loves the pool but doesn't care too much for Benjamin splashing.  He was using this octopus pool toy to protect himself from Benjamin's splashes.

My sweet boys having fun together.

Last week I mentioned that my summer mission is to help Caleb learn to navigate the playground equipment at his school.  We met Ms. Vickie for PT at the playground today and I took a bit of video.  I wanted to be able to see his progress as the summer goes along.  Sometimes I don't realize how far he has come and how strong he is until I watch a video of him from a year ago and then I can really see his progress.
(it was really windy today so sorry about all the wind noise)


He really has to work hard and Ms. Vickie does not go easy on him.  She is really trying to teach him the safest way to climb the equipment but he wants to hurry and just do it.  I was feeling pretty discouraged watching him last week but he did really well today.  I hate that he has to work so hard to do something that should be so simple, but it is what it is.  The truth is that climbing this play equipment wouldn't have even been possible for him this time last year.  I'm going to take video of him "tackling" this playground as the summer goes on.
The hard work of climbing the equipment is worth it once he gets to the slide!

Tuesday, June 07, 2011

Summer mission: Tackle the playground equipment!

Caleb's favorite part of school was recess.  Of course.  What kid doesn't love recess?  Unfortunately the playground at Caleb's school is filled with wood chips.  Everywhere.  And those of you with kids that use walkers and/or wheelchairs know that wood chips are evil and not at all walker/wheelchair friendly.  Most days Caleb would choose to get out of his wheelchair and just play in the wood chips.  He crawled around in them daily which is brutal on his sweet knees.  I know the teachers would offer to take Caleb to swing or to do something else but he would always choose to just play in the wood chips.  I think Caleb chose to play on the ground instead of on the equipment because he feels safe on the ground.  He can't play on the equipment without considerable help.  I hate to use the word "can't", but it's true.  He can't do it.  So, now that school is out for the summer one of my goals is to teach Caleb how to get on the playground equipment at school so that next year he will feel much more confident and will hopefully venture out of the wood chips.  We are going to have physical therapy at the school playground this summer with his PT, Ms. Vickie.  Today was our first day out there.

There are several pieces of equipment on the playground, I chose this one for Caleb because I think it will be the easiest for him to maneuver.
 Ms. Vickie didn't waste anytime and put Caleb right to work.  She helped him considerably and really tried to show him where to put his hands and feet.  It was not easy for him at all, but you could tell that he was proud of himself.  This is probably the first time he has been on this equipment. He has watched all of his classmates run and play all over the playground while he sits in the wood chips.  This is unacceptable to me.  Again, I don't blame the teachers, Caleb chose to play in the wood chips, but sometimes you've got to push a kid a little bit so that they get out of their comfort zone.  I'm actually a little mad at myself for not addressing this issue sooner.  It drove me crazy that he was playing in the wood chips almost everyday and I didn't do anything about it.  When we had his IEP meeting at the end of this school year I mentioned my frustration and the school PT offered to add a goal to work with Caleb on the equipment outside next school year.  Why didn't I think of that sooner?  I should have mentioned this to his school PT ages ago but it just never occurred to me!  Oh well, better late than never I guess.
Working his way to the slide.  He was grinning ear to ear!  He was so proud of himself.
  Going down the slide.
Ms. Vickie took Caleb through the equipment 3 times and by that third time I could tell that his legs were super tired.  She really pushes him which I think is good because he can do it.  He may never climb through playground equipment like his classmates, and that's okay.  I just want him to have more choices.  I want him to be able to get himself up on the playground and go down the slide, I want him to have that choice.  I don't think he feels like he has that choice because it's not something that he can do on his own.  We will continue to do physical therapy at the playground this summer.  I want to give him every opportunity to increase his strength and confidence.  He may still need some help on the equipment when school starts in the fall but at least he will have had lots of practice this summer.
 Going down the slide with Ms. Vickie.  Look at that big grin!  He really worked so hard out there today. And he did it without complaining (other than fussing about being hot and sweaty!).  I think the desire is there and Ms. Vickie and I could both tell that he was so proud of himself.
(I guess Benjamin prefers to play in the wood chips too)

Saturday, June 04, 2011

I love adaptive sports!

Today we took Caleb (and Benjamin) to the Turning Point Extravaganza.  It is an event held every summer and it features a variety of adaptive sports.  I always like taking Caleb to these types of events because it really shows him all of the things that are possible for him.  There are a ton of sports and activities that are available to him.  And Caleb seems to really enjoy seeing other people that are using wheelchairs.  Several times today he said "Look at all these people in wheelchairs!"  He loved it.
He wanted to do hand cycling first.  This cycle is different than the one Caleb just got through Athletes Helping Athletes.  He drove this one around the parking lot a couple of times.  I'll show you Caleb's new cycle at the end of this post (most of you have probably already seen it on Facebook).
After hand cycling, Caleb (and Benjamin) gave disc golf a try.  Neither one of them did very well.  Benjamin opted to just cheat and put his Frisbee directly into the goal.
Caleb nervously watching someone going down the zipline.  We tried so hard to get Caleb to do the zipline because I think he would really like it but he wanted no part of it.  We just couldn't convince him...maybe next year.
They had a large tank set up with a bunch of catfish in it.  Caleb had a lot of fun fishing.
He loved catching fish, and he actually caught several. But I guess it isn't terribly hard to catch a fish when they are confined to a small area.
Benjamin enjoyed watching Bubba fish and he was even brave enough to touch one.  I kinda thought the catfish tank was a bit mean, it didn't seem right that these poor catfish just kept getting caught and thrown back over and over again.  But I'm a bit of a softy so I'm probably the only one that was bothered.
They had some RC cars too.  Caleb chose the monster truck...of course.
Next was wheelchair tennis.  I think this is so cool.  Caleb had a lot of fun with this and the volunteers were so patient with him.  I just love that all of these different sports are available.

Both boys were begging to ride the pontoon boat so we headed there next.
While we waited for the boat, Benjamin found some dirt to play in.  Of course.

Okay these next pictures have me in tears because I am laughing so hard.  I have never seen anything so funny.
"Um mom, I can't really breath in this life jacket."
"Um mom, now I'm falling over."
"Um mom, I appreciate you making the life jacket lose but I'm not sure this is any better."

And finally....drum roll please....Caleb got his hand cycle this week!! 
It didn't quite fit him at first, it needed several adjustments in order to make it "fit" Caleb.  Well I had no idea where to start so Justin offered to come over and help us fit the cycle for Caleb.  Remember that Justin custom builds hand cycles and we had originally wanted him to make a cycle for Caleb but when we got the grant through Athletes Helping Athletes we couldn't use Justin anymore.  Anyway, Justin was kind enough to offer to help us with Caleb's cycle.  Great guy.
Once the cycle was adjusted we let Caleb take it for a test drive.
 Caleb actually did very well.  This hand cycle is so cool.  Caleb got going fast enough that Glenn was having to run to keep up.  I think it will take getting used to but Caleb will get the hang of this thing is no time.
I'm super excited about this opportunity for Caleb.  He loves his new bike.  What a blessing to him and to us.  A couple of kids in the neighborhood saw Caleb on his bike and they were begging to try it!  They said Caleb's bike was way cooler than theirs!  Too funny.

Here is a short video of Caleb's first test drive.

Yay for adaptive sports!!
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