Longing for full nights sleep.....

Tonight finds me fairly exhausted. This morning at 5:30 am you could find me in the family room crying out to God and asking for mercy.  Our Lucas has SPD or Sensory Processing Disorder.  And although it is not a constant issue but falling asleep and staying asleep can sometimes be a big struggle for him.

Early.. very early this morning 1:30 am to be exact he was wide awake.  I believe he finally crashed somewhere between 5:30 and 6:00 am.  Unfortunately everyone in the house was awake at some point during those
early morning hours. Needless to say we all slept through the alarm for church
and since I work on Sundays it's been a long day.

This is going to be a difficult week for Mike's biopsy on Tuesday. Thankfully
Cody is feeling well! H has had a few issues with jaw pain and knee pain, but she felt good enough to go on an outing with a friend so she seems to be turning the corner.

So tonight we sleep... well at least I hope so! Tonight we are trying a fan for some white noise.  It may be time to invest in that weighted blanket.

A bump in the road...

22 days... Cody is now 22 days into a "flare"? We had thought after the infusion of the 21st he would be better, but although his temp dropped
during the infusion he was running a low grade temp again the next day.
No one else in the house is sick so it has to be his issue.

The big problem right now is the pain. We have tried a couple different
ones now.  Neurontin helped with the pain but totally knocked him out.
Cymbalta does not work as well but maybe it needs to build up in his system?
It is so frustrating to see him in pain and not be able to do anything!
Its also discouraging to ask "How do you feel today?" and hear "I'm in a lot 
of pain".....UGH!

Meanwhile we are facing another bump in the road.  Michael went to the doctors at the end of January with what we thought was going to be another kidney stone. He had blood in his urine and back pain. They did an x-ray and could not find any stones. What they did find upon exam is a lump in his prostate. Today he had a urology appointment. The urologist did his PSA level (PSA is a protein produced by both normal and cancerous prostate cells. A high level of PSA can be a sign of cancer) His was a 7.1 at his age it is supposed to be under 4. He will be having a biopsy on the 26th.  Trying to not worry until 
it's warranted is easier said than done.

Waiting well..............

    Well I bit the bullet and sent Cody's application to the NIH. Praying now that he will fit into a genome study. I know that we still might not find a definitive answer however its a new avenue to pursue.

    Next week we will start a new semester... ready to leave this last semester full of pain behind and start a new fresh semester.  Rachel left 
on Sunday to start her new semester at Eastern University. Hannah, Lucas and I are just keep plugging away.

    I was reminded this week of a quote by Elizabeth Elliot, "Waiting on God
requires the willingness to bear uncertainty, to carry within oneself the unanswered question, lifting the heart to God about it whenever it 
intrudes upon one's thoughts." I long to wait well and not grow weary but, waiting well is a challenge. How does one wait well?...when things don't make sense? Trust.  Reminding ourselves of God's past faithfulness and remembering that He never changes builds our trust.

   He is faithful even when I am faithless.  Just last week Luke started OT
again and I had just about given up hope... just two sessions and we are beginning to see improvement.  I'm very grateful because his vestibular 
issues had become overwhelming were causing my head to spin.

  So what have I learned this month?  Waiting and trusting is a process
that although difficult is rewarding.  And it's worth it to trust my unknown
future to a known God.

                               Cody with new little cousin

                                       Rachel, Luke, Hannah with cousins 

Steady my heart in this bright new year !

2012 ended in a whirlwind.  November and December brought on a 
seemingly never ending flare for C.  Working part-time, homeschooling and managing all the medical needs of our household along with the holidays stretched me fairly thin.

I don't know about you~ maybe it comes with being a mom~ but I'm a people pleaser and I hate to say no if it's going to disappoint someone. But life at the hectic pace it was in these last two months... did not afford me the opportunity to say yes to everything.  The hardest part was telling myself its okay to say no.

Lately I have been feeling stretched super thin... I actually forgot Rachel and Lukes's eye appointment even though they called and reminded me a couple days before..ugh! I am trying to streamline appointments and school schedules just to survive.  In the midst of all my distress at not being good enough at all this mothering stuff God spoke to me and reminded me I need to rest more in Him.  Because I cannot do this on my own and I don't have to... He is right there waiting for me to ask for His help.

"May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit." Romans 15:13

“Better a handful with quietness than both hands full, together with toil and grasping for the wind.” (Ecclesiastes 4:6)

I'm not exactly sure what happened but it seems I turned around 
and Thanksgiving is past.  November has been a rough month.  
Cody has had a rough go of it. The bad days have definitely 
outnumbered the good days. 

A week before Thanksgiving we ended up in the ER with a terrible
case of pleurisy/ costrochondritis that made it difficult to breath.
He has spent most of the month on prednisone which makes him
ever so much fun to be around (not). After about four good days
it is back.

Rachel was home for five days, that visit went by entirely too fast! 
In three weeks though she will be home for Christmas break.

Although this month that we celebrate our thankfulness has been
one that has been tenuous to say the least... I am well aware of
the many blessings we have. I am finding that having a thankful heart 
is sometimes an act of my will.  I have to choose to not look at
the overwhelming circumstances and threatening clouds and look
at the good things instead. That doesn't mean I walk around in denial
of the bad circumstances... it means I have to remember that
God has brought us through troubled times before. I do not 
believe he has brought us this far to leave us now.

I read somewhere that bad days cause faith's rubber to meet 
life's road.  And I found as it says in Ecclesiastes 4:6 Better a handful
with quietness than both hands full, together with toil and grasping
for the wind.

November comes and November goes with the last red berries and and the first white snows....Clyde Watson

I looked out the window just now and its snowing, and this poem came to mind...

The first to fall is the first to go.
Earth wears its mantle damp and chill-
Patina of November snow.

Leaves raged with fire just days ago-
Now grays, ash browns, pale yellows tell
The first to fall are the first to go.

Remains of harvest in desolate row
Brace for the final winter kill
Beneath their shroud of November snow.

The rakes now dry, the plow and hoe
Await Spring's promise to fulfill-
The first to fall are the first to go.

Lit by the sky's anemic glow
The pines are standing stiff and still,
defiant of November snow.

In barns of silence wait those who know
What lies beneath the fields they till-
The first to fall are the first to go,
Together with November snow.

November Snow by Joseph Pacheco

I am not sure I am ready for snow just yet, I am not sure I am ready to give
up the beauty and richness of autumn for the seeming bleakness of winter.
Oh winter is beautiful too! I honestly love for Thanksgiving to start the swing of the Holiday season.  

The thing about winter is that looks are deceiving.  It would appear to the naked eye that everything is gray and dead, but all the while the foundations for spring are being laid.  Life is like that at times too.  It would seem all
hope is lost and yet we do not know what God is doing behind the scenes.
Galatians 4:4-5 tells us 'But when the fullness of time had come, God sent forth His son, born of a women, born under the law, to redeem those who were under the law, so that we might receive adoption as sons.'

So the question is how will you weather your winter season? God is always
in control, He is always working behind the scenes putting His plan in motion.
Will praise Him for what you can't see and trust Him?

There is a reason it's called a sacrifice of praise....

     Just when I think I have accepted the fact that we may never have a definitive
diagnosis for Cody and that I am okay with that reality rears it's ugly head.  You see
Cody is looking at colleges to visit, he is trying to do the normal things 16 almost
17 year old boys do.... But reality is he has a chemotherapy infusion every three weeks
to control an unnamed disease he has been fighting since our first hospital visit at
5 weeks of age.  And now he is having less then 3 weeks relief between those said
infusions.
        Although he has been taken care by one of the best pediatric rheumatology  
programs around and we have excellent communication with them we are learning
that adult rheumatology is not the same. Cody will be 17 in December so we
have approximately a year left with our doctor and then what???
        We are looking into seeing how we can get Cody into see Dr. Kastner at the 
National Institute Of Health he is working on a genome project with fever syndromes.
I have a strong feeling that we are going to need some documentation heading into
adult rheumatology and his college career.  And really its more than that I have always
felt a great need to know the enemy we are fighting.... just to have a name to put to
this "thing" that attempts to take over our lives so very often.
       So we move ahead not exactly sure of what lies ahead... as a quote I read today
said," when God closes doors, you've got to praise Him in the hallway".

          

Be still....

  R and I were talking about how the semester is just about
halfway over... wow.  On Wednesday I get to bring our girl home
for her first visit in eight weeks (we've been up to see her but,
she hasn't been home in that time).  It's going to be so nice
to have under our own roof for a couple days.

  It is really a marvelous thing to see your children grow and mature.
R is finding her niche at school and that is wonderful to see.
C is plugging away on his full schedule and senior project. H 
and L are showing great strides as independent learners.  All these
things make life so much more pleasurable for this mama.

  Children although loads of work are blessings in thousands of ways.
I think mine have taught me much more than I've ever taught them.

   On Wednesday night L came home from church telling me he
needed to spend time every night letting God speak to him.  So that
evening oh about 20 minutes after he laid down, he sought me out...
"Mom", he says ,"I don't know what to do God's just not talking .."
We ended up having a great conversation about prayer and reading God's 
word (of course it reminded me about how impatient I am for God to speak
and answer me at times).

         "Be still, and know that I am God: I will be exalted
         among the heathen, I will be exalted in the earth."
                                Psalm 46:10



   

O hush October morning mild...

October

BY ROBERT FROST

O hushed October morning mild,

Thy leaves have ripened to the fall;

Tomorrow’s wind, if it be wild,

Should waste them all.

The crows above the forest call;

Tomorrow they may form and go.

O hushed October morning mild,

Begin the hours of this day slow.

Make the day seem to us less brief.

Hearts not averse to being beguiled,

Beguile us in the way you know.

Release one leaf at break of day;

At noon release another leaf;

One from our trees, one far away.

Retard the sun with gentle mist;

Enchant the land with amethyst.

Slow, slow!

For the grapes’ sake, if they were all,

Whose leaves already are burnt with frost,

Whose clustered fruit must else be lost—

For the grapes’ sake along the wall.

   This morning I was up bright and early... not 
because I wanted to be or had to be...but 
because I couldn't sleep. Our Siamese has taken 
to demanding food as soon as someone stirs.  I
moved enough apparently for him to think I was 
fair game.

    I actually, once I force myself out of that

semiconscious state, enjoy being up

when no one else is.  I love the quiet of the house. 
I love curling up in my favorite chair with a cup of tea

and my bible. Starting my day this way centers me
and allows me to cast all my worries of the day and
hand over to the One who cares for me.


    Blessed are You, O Lord our God, King of the universe, Who has kept us in life, and has preserved us, and enabled us to reach this season. 
  

October is crisp days and cool nights, a time to curl up around the dancing flames and sink into a good book.

Autumn is the second spring when every leaf is a flower
~ Albert Camus

   Driving down the road today I noticed how the leaves were 
turning.  I absolutely love this time of year. The crispness
in the air and the beautiful leaves.  The kids and I put our fall
decorations up the other day... and Hannah and I are having a 
grand time trying lots of recipes with apples and pumpkin.  We 
can't wait to do them with Rachel when she comes home.
   Because I love this time of year it breaks my heart that this
weather that I love sometimes causes such grief to our
children.  Our rheumatologist told me today " You guys are
going to need at least a 1/2 time rheumatologist dedicated
to the care of your family!".  As Cody came off his flare
Hannah woke with stiff fingers and knees. We started her on
a run of prednisone that was a long week...quite a few nights 
she woke up in the middle of the night hungry.  Yesterday
was her last day and boom the pain is back.  So we will be
squeezing a doctors visit this week and looking at other options.
   Also Cody's jaw seems to popping quite a bit when he eats
it's a little unnerving.. so I guess an MRI is in our future as
well.
   So now is the time we start to embrace comfort measures
and tricks. Electric blankets turned on 20 to 30 minutes before
getting out of bed can take the edge off of stiffness.  Curling
up in bed with a hot water bottle to do school.  And we purpose
in our hearts to be thankful.
  My mother always said when things look their worst start 
counting your blessings. That practice has held me in good
stead. I am teaching it to my children ~ it's hard to worry
and complain when your reminiscing about God's faithfulness
or the blessings He's given.
  
   

  

“Rivers know this: there is no hurry. We shall get there some day.” Winnie the Pooh

     On Tuesday we will have been "in school" for a month. Part 
of me feels its been a long month and part of me can't believe
a month has already past. The older I get the passing of time
is a quandary.
     Fall is definitely here. The morning air is crisp and the geese 
are flying overhead. We have started to settle down into our
school time routine...  I say started because this has been a 
season of change for us and every time I think we have a 
routine underway life intrudes. 
     Rachel is fairing much better these days and conquering
those beginning of the semester jitters. Hannah is settling
in and working much more independently which is a huge
blessing. Lucas has shown himself to be more mature this
year and his coping skills when thrown off balance are
amazing to see in action. Cody has had a rough start the
past two weeks brought a pretty big flare one we haven't
seen the likes of in quite awhile. Thankfully he is now 
recovering and perking up a bit. 
     One of the lessons we are constantly learning (especially
with chronic illness) is we each have our own strengths and 
limitations. So we need to learn new ways to solve problems
and to be resilient. That has been a big lesson for me recently. 
I have been away from the house a lot the past two weeks. 
It has not been easy with Cody ill~ my mind is constantly in 
two different places. I have always been primary caregiver and 
teacher... not so much the past two weeks.  Mike has done 
a wonderful job getting school done with the younger ones 
and monitoring Cody's condition. That means I've had to let 
go a bit...  okay not a bit a lot!  Like I said Mike does a 
fantastic  job but its different than the way I would do it.  
Have I told you letting go of control doesn't come easy for me? 
But, I am thankful in a small way for times like these 
because it reinforces our strength as a family... it is a 
testament to the love we have for each other.
   

Proverbs 16:1

"We can make our own plans, but the LORD gives the right answer." 

      

   
    

Best laid plans...

    "the best laid plans of mice and men often go astray...." you 
can prepare for everything except the unexpected.  23 years ago 
when I graduated college I never believed I would be here 
in this place today.  A friend said to me today I can't imagine 
how it is or him and you to deal with this everyday (speaking 
about Cody's illness)... quite honestly some days it seems like 
too much, that its too hard and I want to wake up from this 
nightmare and be done.

    Then I look at how far we've come. There are bad days. It is 
very hard to see your child give up something they love because 
the illness doesn't make it possible anymore. It is hard to see 
them have rethink all they ever wanted to be. Robert Frost once 
said If there is one thing I've leaned about life it is... it goes on.
Nine years ago getting an answer became an all encompassing
goal for me.  Nine years ago we talking about replacing heart 
valves  And we still don't have all the answers... and I have had
to rest in the fact that I don't have all the answers but I know 
the One who does and to just go on.

  The Psalmist wrote Thy word is a lamp unto my feet and a light
unto my path.  Have you ever walked a path in the dark with a 
flashlight when camping?  If you hold the light in front of you 
can't see very far ahead but you can walk safely... if you try to 
shine the light ahead you end up tripping on things you didn't 
see on the path. It is so easy for me to want to see what is 
ahead and then get tripped up on everyday life.  I believe God 
is an ever present help in times of trouble... I know this to be 
true because we have experienced trouble and we have 
experienced His presence in a very real way. We never had to 
replace that heart valve and I have been able to see my son 
grow into man of faith, compassion and courage. 

    Right now I feel as if I am being crushed in the crucible...
Cody is flaring, Mike has pneumonia, Rachel is struggling to 
come into her own... I could go on and on. I have to trust that
God has a plan and that He keeps His promises... my 
experience is that He is always on time and never late!

He fails us not

   Today has been a crazy day...  a crazy busy day.  Last week 
after dropping Rachel of at school we started... well some of us 
started with a cold. It was a miserable cold... Mike is 
still fighting it. We are very careful with illness in general 
because several of the kiddos are on meds that suppress their 
immune systems (Cody especially).
      So after about 9 days of this cold... and usually Cody 
doesn't get the little things such as colds etc. his hyperactive 
immune system usually cuts them off at the pass... he was 
not getting better but worse. He started running a higher temp 
and his joints became very sore. We spent 2 days trying to get 
ahold of rhuematology and finally today had success. 
Unfortunately the treatment of choice to head off a major flare 
is prednisone.
      Although I know at times it is a necessary evil- I don't like 
it. The past couple times he has been on it he is just plain mean
and hungry all the time. I don't mind the hungry but the mean,
well lets just say there are challenging days ahead.
      As I was plugging through the day, school, doctors visits 
and children who at times did not want to cooperate I was 
blessed to have a song running through my head. And I wanted 
to share it with you. I think it easy to be overwhelmed by the
hard things in this life and if your like me I tend to think I am
failing everyone... I need to remember that I can't do things in 
my own strength.  I can't keep it all together all the time, but
I trust in someone who can.