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


Becky said...

LOVE THIS POEM! It's perfect. :) Just like your little boy. xoxo

Stephanie said...

I'm so glad to be back! I can't believe how much I ,missed everyone!
This poem is so perfect, I love it.

God has such a plan for everyone of us.Gavin's plan is right on, whatever he does or doesn't do is just fine. You are such a great mama for him. I see it in his eyes too! The happiness... his life is wonderful.

Lacey said...

I hate when Mondo say's he wants to take Jax when we die, just because I know that Jax will never outlive us. I know they say they will never do this and that. But look how many times they are wrong! Jax is smiling more everyday. And he's definitely getting more interactive. I'll take it!!

Cindy Lichtenberg said...

I love the poem. I hope you don't mind me posting it one of these days. :0)

Gosh, I didn't realize how fragile Gavin's health is. I'm glad that you explained this. I do keep Gavin in my prayers, and I think it's helpful to know more of what I need to pray for.

And I thought Gavin's neck control was looking better than you had described before. I get the picture thing. But, at the same time, Gavin is super cute- I tell ya- If I ever meet you in person- your gonna have to watch out for me!

Stephanie said...

Love you guys! I love coming here because it reminds me of where we were. Honestly - Gavin is EXACTLY where Christopher was (maybe even a little more advanced) at the same age!!!! :)

The docs don't know everything and I am so glad to hear that you are not limiting your expectations of Gavin.

The fact that he hangs out in his stander (something CHristopher still cannot do) and his Johnny Jump-up tells me we haven't seen nearly what his potential is. Also, I know EXACTLY what you are talking about when you say you think he knows more than he lets on. (wink). Sometimes, I think it is a conspiracy because the little buggar (Christopher) is trying to get out of working. LOL!

Hugs to you guys - Will conitnue to keep you all in our prayers. Keep it up Gavin!!!!

Steph and Christopher

Annette Gysen said...

You and Gavin continue to teach us a lot of good lessons about dependence, trust, hope, and love. What would we do if we didn't believe that God loves us and that the difficult things he sends to us are somehow (in ways we can't understand)good?

ANewKindOfPerfect said...

I think it's great that Gavin likes the jumper! It's definitely a good sign that he wants to be in it and is proud of himself in it. :) Who knows ... the doctors don't know. I agree with you - my son asks me occasionally thinks about Emily's future, and it sucks. Will she walk? I don't know. Does it make me sad? Yes, it does. Will she ever eat by mouth? I doubt it. Will she talk? I don't know. That part sucks. But the smiles, the cuddles, the love that just radiates from their little bodies ... and all those other things don't matter quite as much. :)

Reagan Leigh said...

I know what you mean. Typically I do my best to get "good" pictures of my daughter (with her best head control or her eyes uncrossed) even though they may not depict the extent of her disabilities. Everyone wants their child to look "good". Thank you for being so honest!

Michelle said...

thank you for sharing and your honesty with everything going on. I think Gavin is here to teach many lessons to many people, and what he knows and what he's capable of - that's all still to come! He's going to continue to surprise and amaze people :)