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.
Sunday, November 25, 2012
Wednesday, November 7, 2012
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?
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?
Friday, October 26, 2012
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".
Monday, October 15, 2012
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
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
Tuesday, October 9, 2012
O hush October morning mild...
October
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.
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
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.
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.
Monday, October 1, 2012
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.
~ 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.
Friday, September 21, 2012
“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."
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."
Sunday, September 9, 2012
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!
Wednesday, September 5, 2012
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.
Sunday, September 2, 2012
Growing Pains..
Last Saturday we packed up all of the things Rachel had been collecting for college and dropped her off at her dorm. It was an emotional day to say the least. In fact the whole week has been fraught with emotion...
Someone told Rachel as she was struggling last week that....that if it wasn't scary it wouldn't be good for her, it wouldn't change her and wouldn't be worth it... perhaps Rachel summed it up best with this C.S.Lewis quote "We are not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be." Growing...setting out into the unknown is never easy. Thankfully we know we are not in this alone.
This Saturday my mother and I were able to take the day and drive to the college and spend the day with my sweet girl. We had a wonderful time listening as Rachel shared stories about her week, friends and her classes so far. I have no doubts that she will make it through just fine. I'm thankful to see that God has already been faithful and put wonderful people around her
Friday, August 31, 2012
our Journey
Life is often compared to a journey starting with our births, ending with our deaths, with many stops along the way. I would like to focus on the part of the journey our family is traveling at this time. Eleven years ago my husband Mike and I started on the journey of home schooling. We had three children and one on the way and had no idea of what we were getting ourselves into.
Being a teacher by trade, I knew it would be challenging. Just how challenging we would soon discover. Twelve years ago we did not know we would be sidelined by our child's chronic illness, learning difficulties, special needs and my husband's job loss. However God knew and we have learned that He has a plan and He keeps his promises.
We have four beautiful children: Rachel, Cody, Hannah and Lucas. May of 2003 we decided I would quit my job as a teacher and start home schooling. We choose a public charter school mainly due to curriculum costs and the fact that we were just getting our feet wet. In September of 2003 Cody started developing strange rashes, experiencing joint pain, running extremely high temperatures and a variety of other symptoms. It soon became clear we were fighting a battle often for his life. We still have no definitive diagnosis eight years later. All of the children have since been diagnosed with arthritis.
As Lucas started school we began noticing some differences in his learning
style compared to the others. We found he has a sensory/auditory processing disorder which can make life challenging to say the least.
This journey we are on has been long, difficult and often painful, but it has also been filled with grace, hope and peace. We have been blessed to have many who have stood with us and prayed for us. We have learned to embrace the journey and see the blessings along the way.
Proverbs 16 : 9 A man's heart plans his ways, but the Lord directs his steps.
Subscribe to:
Posts (Atom)