Backyard Camping

Putting up the tent

Levi wanted to take a picture of me with his camera (a rock)

It's up!

In the tent

Even though it was very early Levi said he was "so sleepy".  Hee Hee.  He was so excited to get into his sleeping bag.

Levi couldn't wait to eat s'mores too. 

Starting the campfire

Seth wanted to try out his survival magnesium stick to start the fire.

You scrape flammable magnesium shavings, and then spark the other side to light a fire.

He couldn't get it to work.  He ended up using a torch lighter.

Seth broke sticks off of our pine trees for roasting marshmallows.

Hot!

I think this was Levi's first time roasting marshmallows.  I taught him to patiently wait and cook them to perfection.

S'mores!

Sticky

Levi and Seth listened to a little radio by the fire before crawling into the tent to read a bedtime story by flashlight.  I headed back to the house to sleep in my own bed.

Goodnight guys!  I love you!

.

Old.... It makes me smile every time though.

Well worn thoughts

Well... there is not too much to report. I'm still just plugging along on home IVs. I hope I can go off of them soon. There is a friend who is getting married this week, I would like to go. I don't like dragging tubes around and hiding a pump in my purse....

  

CF is sometimes just as much of a mental battle as it is physical. It has been that way for a long while actually. Seth and I talked about fighting so long and hard, and knowing that you can't ever win. Though in doing that you do win, in a way. Don't let it get you down! I often don't like to talk about the mental part of CF... It gives the wrong impression. For some reason it always comes off as depressing. I am not depressed though. Sometimes I wonder about clinical depression verses circumstantial depression. Sometimes it it o.k. to feel sad when you have real reasons for feeling sad. God really is my hope and strength. If this, earth, was all that there was- that would be depressing.  I am tired of fighting the good fight.  I am exhausted and ready for heaven, who isn't? I love living.  I love life.  Real true life.  The gift of life is the best and I am thankful to really live.  Forever. 

Despite how this post sounds, I have actually had quite a nice day and am in really good spirits.  All of these thoughts pass through my head, like a record, even when I am completely happy and joyful.  Some things you have to experience yourself to really know what it feels like, Cystic Fibrosis is one of those things.  

I really like this song...

..65 Roses..


What is life expectancy, what a way to phrase a question/
What kind of answer should return the truth, convey the message// 
Is it, equality the same end for every person/
Is it sovereignty a giving God and living with purpose//
Is it only shall the strong survive and then will end the weak/
Or a dog eat dog world, take advantage, turn the cheek//
How bout living out your dreams and express it through a poem/
Know what you expect out of life and you can gain the gold// 
Well for a family of an infant diagnosed to comatose/
It's journey down the pathway to fight and know the ropes//
Each living soul is different like a fingerprint's identity/ 
Each body's made a little different, singing it's own melody// 
Embedded in the DNA, where the twisted strands dance/
I wish I guide the way and hold each little one's hand//
I've been there before, and I know the way now/
Like a tourist with a map and pamphlet, got it laid out//

Life loves me, life loves me not it goes/
See the beauty in a flower when I'm pulling on the rose//
Prick a fingertip, bleed a bit, from trying to hold it tight/
I want a year for every petal, still alive at sixty-five//

Can life be re-paid, can life be reimbursed/
Get the tears back you cried for every time you felt the hurt// 
What about medical bills, hospital trips, doctor visits/
Time and time again hearing results that weren't worth a listen//
But you have to, hear the news for what it is/
Could do damage to your ears, or it might mend a heart thats delicate//
A life-long relationship with medical technology/
Feel like the drugs and machines should owe me an apology//
Where to aim to blame, if only that I knew/
For the one who has the power, has more love for me than I do//
Not in measurements of self-esteem or the image in the mirror/
Not in a sense of being vein but in a sense of being clearer//
Unconditional, not limited by any means/
Break the strands and molds that try to pigeon-hole me please// 
Unconventional, I'll be damned if I don't defy/
Disease, I want seeds in a family that can multiply//

Life loves me, life loves me not it goes/
See the beauty in a flower when I'm pulling on the rose//
Prick a fingertip, bleed a bit, from trying to hold it tight/
I want a year for every petal, still alive at sixty-five//

Will God give me the chance to say goodbye one last time/
Gather friends and family members, single file in a line//
Apologize for neglecting, for always second guessing/
I should have nurtured more relationships are such a blessing//
Hear a word from a friend that makes you smile when it hurts/
Get better treatment from your wife than any certified nurse//
And a rock to stand on, not just in Christ but in family/
Break their backs just to help you hold steady handling//
(1,2...) I'm an angel in waiting/
Growing wings out of my spine to take flight navigating//
When it comes time, give em pounds & daps I'm outta here/
Take the one and only flight up, blast into the atmosphere//
Look next to me, I'm not flying all alone/
I'll take the long road home where the psalms unfold//
And be the oldest man living till the day I pass away/
Telling cystic fibrosis that it lost again today//

Life loves me, life loves me not it goes/
See the beauty in a flower when I'm pulling on the rose//
Prick a fingertip, bleed a bit, from trying to hold it tight/
I want a year for every petal, still alive at sixty-five//

                                                                  -Citizen Aim