Monday, August 30, 2010

What's in your town?

Our family wanted to go on one last adventure before school starts next week. We had planned on heading out of town for a couple of days, but then decided that packing up our bunch would be more of a hassle than it would be worth, and it would also mean that we'd be spending unnecessary money. So, we came up with an alternate plan.....and we are so glad that we did!

We decided to have an adventure by exploring our town. We live here, but we rarely go out to see what it has to offer. And, guess what?! There is a lot of fun to be had around here, and it hardly costs a thing!

We started our day by having a picnic lunch by the river. Then, we walked along the riverwalk, making our way to the downtown area.

Here we are standing by the river, across from the fishladder.

As we made our way through the downtown area, we ran into lots of fun things to explore and see. We went through a few hotels that are there. These hotels are not the type of hotels that the VW's ever stay at.....too expensive and too classy for us! The boys were in awe of all the "fancyness"! These hotels and many other buildings in the area are connected by a skywalk, so we rarely had to set foot on the streets! The boys loved walking through the "sky" and looking at everything down below! Caleb kept asking if we knew how to find our way back to our van and home again! :)

At the end of the skywalk, in a parking lot below it, we found a wakeboarding competition going on! They had brought in a few above ground pools and had them rigged up for the competition! Pretty cool!

After we left the competition area, we found a Polish festival going on down the street! We aren't Polish, but it was fun to celebrate with them for awhile!

Then we made our way over to the Civil war monument.....and then on to the newly remodeled downtown library.

Joel couldn't stay awake at the library in all the quietness! We aren't used to quiet at our house!

Gavin thought that this was pretty funny!

After the library we walked the boys through the college campus that Joel and I once attended. It was fun to see the changes that had been made since we'd been there and to share some of our experiences with the boys!

Then we walked over to the Calder, which is a sculpture made by Alexander Calder. It is a main fixture in the Grand Rapids area. I've seen it many times in my life, but for some reason it looked smaller to me than it used to look. I guess things lose their wide-eyed characteristics as we get older.....but the boys thought it was way cool!

Next to the Calder is a giant swing. This also looked smaller to me! (I must be getting old!) But, the boys thought it was huge and lots of fun!

Gavin had fun listening to his brothers' squeals, as they flew through the air!

We finally made it back to our van.....Caleb was quite relieved that we were able to find our way back! :)

Lastly, we drove to the ballpark and enjoyed a night watching some baseball!

When we went up to purchase our tickets, a lady offered us 2 free ones, so we only needed to buy 3 of them! I love when this happens!

Here is Gavin looking for flyballs.

And, here he is yelling when they scored a run! Either that, or he's yawning from boredom??? :)

There is nothing like bringing the family to the ballpark!

So.....that was our Saturday! We had a FANTASTIC day and it only cost us $15, besides the cost of some food! I seriously can't remember a day that was more fun for our family! We got to share time together, stories with each other, explore and stay active.....and it hardly cost a thing.....and took very little planning! Our boys are still talking about how much fun we had!

So, what's fun to do in your town? Take a trip around town and you might find that there is a lot more to do than you thought there was! Plus, I bet you will make a great memory and have a ton of fun! If you go, share your pictures with us.....maybe we'll be tempted to come visit you some day! :)

"I rejoice at Your word, as one who finds great treasure." Psalm 119:162

Monday, August 23, 2010

Does it get any cuter than this?!...............

..........I dare you to even try! :)

"Do not let your adornment be merely outward - arranging the hair, wearing gold, or putting on fine apparel - rather let it be the hidden person of the heart, with the incorruptible beauty of a gentle and quiet spirit, which is very precious in the sight of God." 1 Peter 3:3-4

Thursday, August 19, 2010

Things aren't always as they appear to be..........or as we might like them to be.

I had a few people talk to me, or leave me a comment on here, about how good Gavin's head control seemed to be while he was in his Johnny Jump Up. While Gavin's head control is much better than it used to be, it is still very poor and he is still very floppy. The only reason he appears to be doing well in those pictures, is because every once in awhile he will lift his head for a few seconds.....and at that time, I quickly snap a picture when he does! It also helps that I am using his Hugga-Bebe support cushion to help give him some support while he is in the jump up. If he didn't have this in there, he would surely slump way over and maybe even forward tumble right out of the thing!

Here are a few pictures of him not using much head control.....and these are just the ones that I happened to save. I deleted more pictures than I saved, because Gavin's lack of head control had him totally slumped over in most of them, or he had an unhappy look on his face.

Even though he has poor head and neck control, I think that it is good to put him in positions like this to MAKE him use those muscles that are so floppy. I know that Gavin will probably never even be able to sit on his own, but it's still worth it to make him do workouts every once in awhile. It's good for him, good for me and just because Gavin is unlikely to advance much further than he is, we can't and shouldn't, just give up on him. I happen to think that Gavin understands a whole lot more than he appears to know. He is often in his own little world and he doesn't seem to understand much of what is going on around him, but every once in awhile he shows us that he "gets" more than he appears to "get".

Being his Mom, I am aware of his moods and the little signs that he gives. Some of those signs are little looks of feeling proud of himself for something that he has done. Being in his Johnny Jump Up is one of the times that I see these looks come out in him. He has this look of determination and I think that it is good for him to feel like he is doing something great!

If you were around Gavin in person, you would see that he is very physically, emotionally and cognitively delayed. But, looking at this blog, you see what I portray to you. I happen to see Gavin as a happy, smart, cute, lovable, and somewhat capable boy. So, I try to show these parts of Gavin on this blog. I delete the "bad" pictures....I try to share his good side and achievements.....and I try my hardest to talk about the good, instead of the bad. Of course, you have read the "bad" times we have gone through too, but for the most part I like to share only the good things.

This is why it appears that Gavin has good head and neck control. I try to focus on what he can do.....not what he can't do.

The fact is, Gavin can't do much of anything. But, he is farther than he should be....according to many doctors. And, only God knows the future for Gavin!

I find myself getting sad about many things concerning Gavin, but when it comes down to it, what's the point in dwelling on the sadness. I do this often enough, but I really strive not to. This is hard to do when doctors are always telling me about all the bad prognoses. But, if I focused on all this depressing information(the fact that Gavin's heart defect is still severe, even after several surgeries...and that he has lung disease and a seizure disorder...and that his life expectancy is not very long.), I would never even get out of bed in the morning!

I also want to shield our other boys from the sadness. They are smart enough to figure out that Gavin is a special boy and they talk about how sad it makes them that Gavin can't do many things, but they also find the good things about Gavin and focus on them instead. In fact, they have great imaginations and play lots of games with Gavin that make Gavin out to be the best at everything they play. It's really cute to see them rooting for Gavin!

But, they also see the future for Gavin. From the beginning, we have tried to shelter Jacob from a lot of Gavin's conditions, because he really worries about Gavin. But, we have also told Jacob that Gavin will never be able to walk or talk. I thought that I had made this clear to him, but the other day Jacob said to me, "I just realized about a month ago that Gavin is never going to be able to walk." I suppose he was holding onto hope and keeping a positive attitude, like we try to do concerning Gavin. I asked him how he felt about this realization. He said, "I'm not good with it." And, all I could really say was, "Neither am I.".........I did go on to say that God has the future figured out, and that we will all be just fine, because of this. And, he agreed!

Gavin is totally dependent.....on me, on Joel, on his brothers, on his doctors, on many medications, on a feeding tube and a feeding pump.....all of these things just to keep him alive on a daily basis. Gavin relies on total trust and total dependence to be here each day. The funny thing is, it has taken having this special child, who requires so much out of me and others, to see just how dependent I am as well! I've always known that I am not in control of my life, but I sure did try to control a whole lot! Having Gavin has slowly shown me that we are ALL dependent for life. God is the giver of life and He is the giver of all of our blessings as well. Gavin's dependence is very obvious! But, the truth is, we are all just as dependent as he is! Having this realization is a scary thing, but it has also given me such a sense of freedom!

Gavin has very little head and neck control. But any of us?

Just some things to think about.....

Here is a poem that I read on a friend's blog this week. I think it sums up a lot of what I've been thinking about here.

The Things God Has Planned

It's sometimes very difficult
For us to understand
The wisdom and the love behind
The things that God has planned.

But we wouldn't have the rainbow
If we didn't have the rain;
We wouldn't know the pleasure
If we never tasted pain.

We wouldn't love the sunrise
If we hadn't felt the night;
And we wouldn't know our weakness
If we handn't sensed God's might.

We couldn't have the springtime
Or the yellow daffodil
If we hadn't first experienced
The winter's frosty chill.

And though the brilliant sunshine
Is something God has made
He knew too much could parch our souls
So He created shade.

So God's given us a balance:
Enough joys to keep us glad,
Enough tears to keep us humble
Enough good to balance bad.

And if you'll trust in Him you'll see
Though yesterday brought sorrow,
The clouds will part and dawn will bring
A happier tomorrow.

Author unknown

"For I know the thoughts that I think toward you, says the Lord, thoughts of peace and not of evil, to give you a future and a hope." Jeremiah 29:11

Friday, August 13, 2010

Just Hangin' Around

My favorite tree in our yard is falling apart! You may remember that we came home from our vacation to find a big limb from this tree on the ground. Well, this week brought another small storm, and when I looked out the window after the storm had passed, this is what I found. It scraped our barn, but thankfully didn't do any damage to it!

I have a thing for leaves and trees....looking at them calms me and makes me happy. I especially love looking at this tree. Seriously...I love it! It's a huge tree and it holds the boy's treehouse in it. I hope this is the end of falling limbs from it!

Caleb was actually very excited by the damage that was done. I think he thought that a new playground was just dropped into our backyard. When Joel got home from work and started to cut off branches to begin removing this huge limb from our yard, Caleb came inside bawling his eyes out saying; "Mom!, Dad is cutting apart the tree!" I told him that this is what needed to be done to get the mess cleaned up. He couldn't believe that we weren't going to just leave it there! "But, If you clean it up, I won't have my jungle to play in anymore!" Poor boy!

It does look like he and Nolan are having fun in it!

I guess, Caleb and I will both be sad when it's gone! :(

There are not only are huge tree limbs hanging around at our house though! Check out Gavin's new toy!

A Johnny Jump Up!!!

"AWW, Mom! What do you have me doing now?!"

"Come on! Do I have to do another workout?"

"Hey! This kind of makes me feel proud of myself!"

I love looking at his cute thighs while he's in there! Aren't they just edible?!

"Maybe this is fun after all?!"

"But, it sure is tiring!"

"Here I am pretending that I was parachuting from a plane and I got stuck in a tree...........Well, that's what my brothers said anyway."

"HEHE, this is lots of fun!"

"But, seriously Mom, I am getting tired! Could you please get me out now?"

I love being able to do such a "normal" activity with Gavin! what if he is almost 4 years old and this is usually used for a 6 month old! It still brings me pleasure to see Gavin using a toy like this!

Hope you have a great weekend! We'll just be hangin' around...... :)


Actually.....Joel and I, and my Mom are doing something really fun with our 3 oldest boys tonight! We are so excited! Joel's parents are watching Gavin for us.....this is a good thing, but I will be leaving Gavin for about 9 hours with someone other than Joel, and this is the first time I have ever done this!.....I'm kind of nervous!

There are so many little things that could go wrong (Pump malfunctions, giving meds, him having a seizure or gagging really badly.....) I'm used to all of this and it's no big deal for me to deal with all the little things that can go wrong in a day, but it can be scary and frustruating for someone who's not used to it. Plus, we will be over an hour away....*deep breath*....I know he will be just fine and in very capable hands, but I just wonder about me???? I keep telling myself that I have to get away sometimes and that Gavin will be just fine.....I'm having a hard time convincing myself of this though!

Here is a hint of what we are doing tonight.....Listen to the song that's playing on our blog right now! :) I'm so excited! (Of course, it doesn't take a whole lot to get me excited, since I don't get out much!) :)

"Christ has redeemed us from the curse of the law, having become a curse for us (for it is written, "Cursed is everyone who hangs on a tree"), that the blessing of Abraham might come upon the Gentiles in Christ Jesus, that we might receive the promise of the Spirit through faith." Galatians 3:13-14

Wednesday, August 11, 2010

I want to give them the world

Lately I've been feeling somber about things. I can't believe that it's August already, and my boys will be back in school again soon.....I may have more peaceful days when they return to school....but I miss them terribly and would rather have them at home with me, than at school. I had such high hopes for this summer. I was sad that Gavin would be in school part-time, but I knew that it would be good for him to keep up with the therapies that he gets there and also, with him there, I figured it would create some alone time with our older boys and that we could do lots of fun things together, things that are sometimes hard to do when Gavin is around. The summer is almost over and it seems like we have hardly done a thing! Life is just so filled up with necessities and it makes it difficult to just "be" a lot of the time.

I've read a few other posts this week, from other special needs Mommas out there in blogland, and it seems like this is the theme of our life. We are crazy busy with life and our special kiddos, and it's difficult to give our children all that we want to give them. I know that this is true for all moms, but I also know that it's ESPECIALLY hard when you have a child that requires a lot of attention and who isn't capable of doing a whole lot on their own. And, although we wouldn't trade in our special child for ANYTHING, we wish that we could have more time with our other children and be able to do more with them. It's sad not being able to give them all that we think they deserve!

It's also very sad to not be able to give more to our child who has special needs. I am a mostly upbeat person. Life can get me WAY down at times, but I always try to see the silver lining in everything. This is a more complicated thing to do when you have a child who is almost 4 years old and he can't even sit up on his own! I can be feeling so happy, but even then there is almost always a black cloud hanging over me, reminding me that something is not well. That something is the fact that our family is so different from most families. I don't know if it's just me, but I often times feel so alone in this world because when I look around, most family's children are able to walk, run, and enjoy what life has to offer.....and Gavin can't. This is a constant struggle for me! It's not just that it's sad for me, or sad for my other boys, but also that it's sad for Gavin! I want the world for him too! And the fact is, in this world, he will NEVER be able to do all that I wish for him.....and this breaks my heart!

I try not to think about the near or distant future with Gavin. (And, even though the future looks bleak, I pray that we HAVE a long future with Gavin! This is also a huge fear of mine.) But, if we ARE blessed to have him with us for a long time......I try not to think about some things.....

Such as:

Having to lift him when he is much bigger, because he already kills my back at the size that he is! I try not to think about having to change his diaper when he is 10 years old. I try not to think about the days ahead when he will be a bigger boy who gets stared at even more for not being able to even sit up on his own, and who acts like a 4 month old baby. ETC.....

I try not to picture my life and my other children's life too far down the road.....but some days this is hard not to do.

I realize that me and ALL of my boys are really quite blessed, but I also see others living a life filled with more freedom.....and some days I just wish that was our life. I want so much for ALL of my boys! And the truth is.....I am not capable of giving them all that I want to give them, because of this journey that we are on. And, this makes me sad.

These pictures kind of represent how I am feeling. We try to do fun things with all of our boys, but in the end, when we get a picture of all of our boys, it usually shows Gavin in his own little world, unable to take part in the activity.

Either that, or we are only able to get a picture of our 3 oldest because Gavin can't take part in the fun.

Or, someone cuts him out of the picture, like he's not even there.

The only thing that gives me hope some days is the fact that we have so much more to look forward to one glorious day. This life is only a fraction of our life. I look so forward to the day when I will be able to see Gavin running and laughing, and our other boys free from the struggles that come from having a special needs brother.....I seriously can't wait! Because...although I am SO VERY BLESSED to have Gavin and this life that I have been given...some days it is just too much for this Momma to bear.

"Bear one another's burdens, and so fulfill the law of Christ." Galations 6:2

Friday, August 6, 2010

Football and Smiles

Caleb is our "sports" guy. Our other boys like to play sports, but Caleb seems to live for playing! I think it's because he loves dressing up in uniforms....not necessarily because he actually loves playing sports. He does love to play and he is fairly good at most sports, but what he really loves is being able to sport a uniform! I'm serious about this.....I tell him all the time that he should have been my girl, since he loves to change his clothes so often throughout the day! If he is in the mood for football, then he changes into his football gear. If he feels like soccer, then he changes into his soccer gear. Basketball?.....yes, he even has an outfit for shooting hoops out back. He is quite the kid! And, yes, I have lots of laundry to do because of him!

So, of course he was excited about bringing home a new shirt after flag football started this week! But, now he wants to play "real football" because the uniforms are cooler! :)

Here are a few more pictures of him playing in his game this week.

Trying to grab for a player's flag:

Playing Center and handing off the ball to the quarterback:

I'm not a big sports person, but it really is fun watching Caleb in action! He has such an excitement for playing and for life in general!

And, here are a few pics of Gavin, that I took of him while we were on vacation. I took these pictures "blindly", since I was holding him on my lap and unable to see what I was snapping a picture of at the time. At first I didn't think the pictures turned out that great, but then I decided that I thought it was cool to see how Gavin looks sitting on my lap and interacting with me and his surroundings. I like how they show him at his natural self.

My boys are great at putting a smile on my face and bringing me happiness....most of the time anyway! (BTW, right after I typed this, my middle boys came in ready to kill each other because they are both accusing each other of stealing beans out of each other's bucket as they do their chore of picking beans from our garden! UGH.....BROTHERS!!!).....*deep breath*.....I may have moments of wanting to give each of them away to one of the grandmas....even Gavin at times!....but when I look at pictures of them, I am always reminded of how blessed I am to have them, and this life that I have been given!

"Happy are the people who are in such a state; happy are the people whose God is the Lord!" Psalm 144:15