why I blog / blog updating

  I am in the process of updating my blog. Please be patient with me as I find time to rearrange things and update photos and all of our book lists. 
  I truly enjoy maintaining this blog. It's a fascinating way to showcase what we're up to as a homeschooling family for myself and for any friends and family who dare to enter. For me, this is a way to go back and look at memories of our years in a beautiful scrapbookish way.  In doing so, I get to share our lives...our adventures, our sorrows, the 'rebuilding' of our lives without a precious someone.....no longer here with us on earth. (oh how we miss him)
  In addition, I get to write. I find writing to be a therapeutic outlet for me. I am not saying I have any extra talent beyond the average American mother, but we all need an outlet and this is one of mine, a journal of our lives. 

Beautiful sunrise, glistening on the fresh snow outside my window a couple weeks ago.

Hoping to see no more snow!

art museum and exhaustion

Daddy is home today and off early yesterday. We were able to just spend time together. I wish I could figure out how to get pics off my iphone onto here. Someday I will figure it out. It won't even let me upload from Facebook...arggg....
A trip to the art museum.  Free ice cream scoops melting.  Leisurely walks by the River with cool breezes.   Watching the Littles at Karate, taking in the smoothness of their movements, the increased confidence in a Ninja boy as his increased lankiness defends his core.  Such a delight.  Such a a sadness with our little family of 4 now.  Tears coming as I watch that sweet video of our missing heart.  So thankful for these two left to us. Thank you Lord.
The garden has been good and not good.  Now the corn must boil on the cob and the steak grilled just right.....resting after being so easily exhausted.

my first mother's day without you

This day was more difficult than I had anticipated.  There were many factors that may have contributed to me feeling very melancholy all week.  Your birthday was on the 9th, Mother's Day was Sunday, your public/family celebration was on the same day as Mother's Day and my hormones were a little wacky all week.  So, how much was the mixture of this that made me so downcast, I am not sure. All I know is that I thought MD would be pretty low key because I, after all, still have 3 other children that I am 'still' a mother too here on earth and they love me etc...however, I have really felt the acuteness of my precious boy not being here with us.  I felt like the fog lifted somewhat and I could 'feel' the loss a bit more. 
Oh how my mind tries to keep me in the dark as I loop around in my mind very quickly, all of the things that go with thinking of him and missing him.  It still all feels so unreal.  Where is that boy of ours?  Then I remember, he is in Heaven, happy and not missing us....what a relief but a sadness all at the same time....

the flu and a doctor visit

Me, the Man and Damsel all got the flu last week.  It was a doozer.  We had our sox knocked off badly.  So far, the oldest and Secret Agent are free from said flu.  So happy. 
Sometimes when I get it in my lungs I just need an inhaler to help out, but usually manage quite nicely without an antibiotic.  I try not to take one unless I truly need it.  I can't even remember when I have ever had one..it's been years.  When they try to give my healthy kids/ hubs one prophylacticly I usually substitute it with something natural and it works like a charm.  I wish I had something like that to cure children's cancer..oh how I wish.
It was a decent, quite trip to the doctor.  We switched to her from our old doc back in 2010, we went for a 'well check' to establish ourselves.  I wanted a doc that would see us in the hospital as well, but as I visited, I found out that is gone now too and likely will be the case for all of soon enough.  I remember discussing in some way or another, my son's fight with cancer, back then.
  Fast forward to last week.  The wait was not long in the waiting room, the nurse was nice enough, the Doctor was kind, even though I sat in the room for quite some time.  My case was easy.  She asked me about my symptoms...she assessed my lungs and my heart, my lymph glands.  She was friendly enough. 
I have to admit, I wondered, does she know? Does she know that my heart is broken?  Does she know about my precious boy?  Should I tell her?  Would she even care?  I thought, how do I bring it up? I am only here for my lungs.  I thought if she asks me how I am or how my son is, then I will tell her....
Nothing...
She read my file on her computer...was it there? Our discussion the last time I was here?  Did she wonder why I was away for nearly 2 1/2 years?  How I have been in this time?      

NO.....

I guess I am old fashioned in this way.  Maybe I expect too much.  I know from my own medical training history that it is important to assess the 'entire' patient...the whole being..it seemed important to me...I feel my loss ever so more acutely as illness permeates my physical body.

I fear that this new health care we are moving into will only open the door for more of this.

Juice Master

Frozen summer squash.

Life continues to be busy for me, us.  I somehow can download pics again for now...what does this mean exactly?  I have no idea because I have no time for this picture business. 
As you can see, that is my juicer I am using. I really like it but it does get way more foam than my previous juicer, but also more juice, so I am still trying to figure out my final opinion on the subject. 
Braveheart has now been 10 months post transplant.  We are so thankful for how far he has come.  It has been such a bumpy horrible road, yet we have remained optimistic, believing he is healed, holding onto Christ as our rock.  You don't think of the 'what ifs.  You must live for each day.  All the good moments and the bad are a part of our story.  How does one go on without the hope that is Christ?  I often wonder.
 Just when you think B is feeling better and is ready to tackle the world, he then starts to get an ankle pain, a bowel infection, then his blood pressure start acting up...well, this may or may not be a good sign of his kidneys, so we are just keeping faith and holding tight.  I have been also trying to talk with B about eating less sugar. I have had this poor kid on so many diets, I know he is sick of it and he had radiation so I left him alone a bit, not including he still has had many healthy meals in general at home, but I have seen him cut back on treats and now that he got C-Diff again in his gut, we are talking about cutting out milk as it seems to help based on what other transplant kids parents are telling me.  I have long suspected he may have some candida issues after all the meds, treatments, antibiotics etc...
Please pray for us as any big diet change for the the "whole family" takes mental prep.  I have made so many changes for myself and our family but to get B off milk or stop having sugar snacks altogether for the kids or just B, well it is a thing I have to wrap my brain around!

The days go so fast.  I have made many lifestyle changes because my body was in dire need of help after this transplant, my bad knee, my bad feet, adrenal fatigue issues, wt. gain.  I had to put my energy into good food for B and his healing and MINE!  I had no choice.  I have seen marvelous results so far.  My feet and knees are better but not completely healed, I feel better overall but still get fatigued (this can take some time to heal from what I have read) and I have lost 30 pounds!!

Thanks for your prayers!

i don't always have it together

Sometimes I suppose it looks like I have it all together.  I am strong in the Lord.  I am human.  I have days like recently where I am reflective...thoughtful..not depressed, just thinking...asking 'why?'....why did my brave boy have to have cancer?  Why does my dear brave boy have to have kidney damage?  Why so many complications? Will he ever find love?  Have children?  How will You use him Lord because I know you have called him...I know that in my gut.  I know all the usual responses, the verses....I cling to those but sometimes I just have to have a moment I guess. 
Maybe I just don't feel well.  Maybe a long stressful illness can be similar to a death, in that there are stages of grief.  Maybe I am just tired.
I know I will feel better again, refreshed in the Lord.  I am older now and just a itsy bitsey bit wiser.  I know that everyone has there mountain to climb.  I know that if your life is going perfectly, hang on, be ready....it will come, that mountain. 
I am ok.
I am thankful.
So...very....thankful.....

discharge?

Today is Day 67.  Discharge is within our grasp.  Now we are waiting for his blood pressure to calm down.  If today is Tuesday then we have gone home to a condo of a friend.  It was weird as we wheeled our son out looking over the walkway out over all the construction. Life going on as usual. We have been here for right short of 11 weeks!  It becomes part of you.  Daddy is with us, this makes it all so much better. Now I will squeeze my other kids soon. Braveheart has been brave..so brave..God has answered so many prayers...thank you Jesus!!

Day 37

I happen to know that we have been here for a long time now.  Since Sept. 1st.  I think we're hanging in there ok. Some days it does take it's toll though.  Especially during certain hormonal explosion times.  Mostly you nurses here are just great, but boy do you hold some power over how we feel here. Some just don't click with us or respect me as the parent and seem like you are still in 'high school' in your attitude.  Thankfully, that is rare.  Thankfully the Lord is my portion and my rock.  I will show the love of Christ and not be brought down by these little bumps in the road for long.  Amen.

Day 29

Today is day 29 post transplant.  We have been through the ringer and back.  Have you ever thought your child might be facing death...soon?  It's a disheartening feeling.  It is a surefire way to learn to pray better.  We have turned a corner in his healing.  We have a long way to go but we are heading in the right direction and we are seeing many prayers answered.  Whilst he is sleeping, I just stepped outside into a beautiful 80 degree sunny day with a lovely breeze.  My current world.  I need to be out here, to feel the sun on my face.  I find bits of green intermixed with shiny architectural shapes of buildings 8 stories high.  Breezes are just always better when you are next to trees.  I am unable to think of what I will do when I get home.  I am only here, in the now, in this moment.  Praising God for victories along the way......

i'm giving in....

It's time for healing time to move on
It's time to fix what's been broken too long
Time to make right what has been wrong
It's time to find my way to where I belong
There's a wave that's crashing over me
And all I can do is surrender


Whatever You're doing inside of me
It feels like chaos but somehow there's peace
It's hard to surrender to what I can't see
but I'm giving in to something Heavenly





Whatever You're doing inside of me
It feels like chaos but now I can see
This is something bigger than me
Larger than life something Heavenly
Something Heavenly

reminiscing with photos

I have been spending some time organizing my photos. Waiting patiently for the sales to go on so I can clear up my blog and put pics on there again. I finally got that done today! Wow, I am now printing out 2009. So surreal to go through those. Braveheart looking so good, we thinking he was going to finish this and be done forever. Sometimes our timing isn't the Lord's timing. I know he will be healed, I just know it! It just feels weird to look back on our journey and be where we are now. It hurts a little. When the cancer comes back, it is harder to cure. Kids are so different from adults. His is so fast, it gives us little time and less choices! That can be very hard to swallow. I am strong though, HE makes us pillars of iron..look in Jeremiah! God's word is healing and it gives so much good word to live and speak out over our lives...thank you Jesus for our boy!

beautiful sunny sunday

The sun is shining today, with a lovely breeze. I alternate between much needed deep cleaning inside and sitting and reading outside on my modest porch and of coarse, cooking food for 'bottomless pit boy'. :) He is off with dad, at the moment, ordering our new dishwasher which we are in desperate need of. It has been far too long of the old one not quite working right.
The list of things is long. My thoughts wander easily. Priorities are just...different. I am getting ready for the school year. Planning what to do with B until the transplant, during the transplant and after the transplant. Planning what to do with the two littles. Torn between what I CAN do, what I LONGto do, what I WISH I could do and what I SHOULD do...in other words...what the Lord LEADS me to do.
The garden needs weeding. I may get out there. The ratio of weeds to veggies is detestable. I will not give up on my 2 spinach plants, 3 pole beans, one watermelon seeding, many reseeded tomato plants and the turnips and arugula I threw in to get rid of the seeds and feed the hamsters a treat!!
Oh, I think I have one broccoli that survived. woot woot.
B's head is large but he is almost done and is in good spirits. I am so proud of him. He is some amazing kid. He told my mom the other day that he may wish he had lost a limb than have cancer. Ugh.
Be healed Braveheart, in Jesus name!!