Christmas Time

Christmas is my favorite time of the year! For me, it puts everything into perspective. Is it so easy to be caught up with the way things should be in contrast to the way they are. 

It is a yearly reminder that God became a man and stepped into our world to bridge the gap between the way things are and the way they ought 
to be. It's the celebration of the gift of His presence with us.

Our family is the same as others  and it is easy to be caught up in the crazy busy schedule of activities and shopping... Hannah has already danced
at the town's Christmas tree lighting and a church's Christmas festival.

Actually, it is only 12 days to Christmas and I have done hardly any 
shopping,a couple of stocking stuffers and extended family gifts. So I need to get busy!

Cody comes home this Friday and we have several doctor appts scheduled 
over his and my holiday break. Our newest complication is Hannah's iron 
levels. The past couple of months they have been low despite a daily iron supplement. Her iron levels have run at the lowest 43 (normal is 50-120).
At her last infusion blood that was drawn hemolyzed before the could get 
the iron level. At the redraw her iron level was 14, that is significantly lower. So we are in a discussion about possible iron infusions.

It's a challenge. It would be so if I were still just at home just
homeschooling,but it is an even harder challenge homeschooling 
and working outside the home. Prayers for peace are greatly appreciated.

There have been days of late that I long to pray but am just so tired I can't seem to stay awake to. So there prayer sessions on the way to and from work. There have been days when quite honestly~ when I think of all the medical issues and what they could mean, or how I am not there to help Lucas traverse these potholes with learning issues~ that all I can do while Hannah is at dance class is sit in the car and cry. I am easily overwhelmed 
when I focus on what I am able to do vs what I want to be able to do or what I think I should be doing. It's a constant battle I fight.

I read these words in the past week and I want to share them with you because they are the truth I cling to especially in crazy times:

This is not the way it’s supposed to be. All this sadness and bad news and dying. All these anxious phone calls, wars, scary test results, car accidents, terminal diagnoses, ruptured marriages, dogs with cancer, infertility, prodigal children. We hate it, not only because it all hurts like hell, but because eternity itself is encoded in our hearts, telling us that things should be different—in fact, will be, someday. But that doesn’t seem to help much when we’re staggering beneath the bereavement of the way things are.
Of course, we feel this way- of course. But it's only when we bare our hearts to the
pain of this brutal paradox,that our hearts are fully open to the beautiful mystery: God sent his son right into the very middle of this mess. He broke His centuries-long silence with a baby's cry. Almighty God became helpless,humble, vulnerable to the hurts and evils of this world so that we- and our hurts in the bargain -might be redeemed. What on earth does redemption mean but to get back all that is rightfully ours,not because we are good enough, but because we are loved enough. Not because we deserve it, but because it's the way God wanted it all along. The story is clear all the way through the Bible. God doesn't want our sacrifices and our stuff - He wants our hearts. And I believe that He is gathering up everything that has ever broken our hearts to make it all right again in our redemption.
~from Seeds of Love by Lanier Ivester 

It is my hope and prayer that we would rejoice in the fact that God did not leave all this mess unredeemed and embrace His presence.
  

    

     

 

In Everything Give Thanks

The month of November makes me feel that life is passing more quickly. In an effort to slow it down, I try to fill the hours more meaningfully.  ~ Henry Rollins

   So this past April I turned 50...  everyone always says, "Ah, age is just a number, it's all about your attitude." Yes and no. Fifty did not tap me lightly on the shoulder. It was more like I turned the corner and ran smack into it! 

   I am learning though it's not so bad. As I've gotten older, moments have become far more important. Family dinners, coffee with friends, watching
a child's baseball game, heart to heart chats with my kids - these I am
grateful for, because they are what make up a life.

   November is one of my favorite months. It is a month we take time to remember the things we are thankful for. At 50 I have a great deal to be thankful for. These gray hairs and wrinkles are a work of art from many years fully lived and each one of them have been earned. So even for these I can be thankful.

    We have been writing what we are thankful down on leaves scattered through out our home. What are you thankful for this month?

Hello Fall!

     We had our first real night of cool weather. Our high today in south central Pennsylvania was 71 degrees. It was a glorious day.

     Also Hannah, Lucas, and I have made it through our first 4 weeks
of school ~ yay! I can say that it hasn't been all that bad. The only real
issue has been the logistical issue of getting everyone where they are 
supposed to be after school. It was a challenge before I was working more hours, with Mike now on second shift but, now it gives new meaning to the word.

     Hannah has started pointe class and has about five hours of dance a week. Lucas is into the new Fall Ball game season, which includes two nights of practice and a double header every weekend for a couple more weeks.  
It is not without its pitfalls physically. Hannah is now having infusions 
every three weeks.  Lucas just had his medicine dose increased but 
we are still only every four weeks. The cooler weather will bring its 
own set of challenges. It will be time to get out the heated throws 
that I can turn on in the morning when I wake up. That way their 
joints will have a chance to warm up before they get up. Each year 
as the demand of the activities grow... it tests the love for it and 
the resolve to do what it takes.  For now it's infusions, Bio-freeze,
hot water bottles at night & heated throws with an occasional ice 
pack. And a hefty dose of Tramadol here and there. 

     It is a labor of love scheduling and traveling because they are doing what they love. Some will never understand the physical cost 
and challenge... it is too easy to take for granted one's health. I am grateful because others are not as fortunate.

     Cody is a month into his junior year. He is thoroughly enjoying ecology
and all the labs it has entailed so far. We have a couple big appointments
upcoming Hershey at Thanksgiving for the kidney issues and Bethesda for our annual check in at the NIH. My sweet Rachel is settling to her new 
routine at the hospital and life without school.

   It is really amazing to me that my littles are not littles anymore. They 
have  become fascinating young people and I am privileged to have had 
a part in them.  

Braver than you believe...

   The past two weeks have been bittersweet.  The younger two have been getting things together and setting up their school spaces. Lucas and I have even gotten a jump start on lessons since the books arrived last week
and this years courses are loaded onto the online school we use. 

   I have started a new job and my school year starts the same day as

Hannah and Lucas's does. I had three days of training last week and three 
more this week... so we have had ups and downs.

   Anxiety has reared it ugly head several times...it has been challenging

and we haven't even had the first full day yet. But Lord lead me to this 
clip tonight. Its clip that makes me more than a bit teary. As my little guy

(yes, I know he's taller than me, but he'll always be my little guy) is
nervous about doing things without me and I am grieving that I can't be 
there all day with he and Hannah.

I thought maybe someone else could use it as well.

Blessings!

My youngest daughter reminded me its time for a blog post.  :)

Quite honestly I have put off posting because I don't want to come across as whining. So often lately I have just wanted to whine. Like a little kid who crumples on the floor and who is crying its not fair.

I ran across this quote a month or two ago by Skip Heitzig  and the truth behind it sustains me. "The storm didn't last forever, and your storm won’t either. Trials, difficulties, storms are seasonal—they are not 
perpetual. God knows  what you can take. God knows when He should 
show up. God knows when the deliverance should come—and it will." 

As much as I and my kiddos thrive on the routine school gives us, I enjoy 
the summer break from deadlines etc,. We are still learning its just a bit 
slower paced and more self directed.

This has not been a summer that has been lazy and enjoyable. This summer there have been no refreshing vacations and time away. This has been a summer to "get " through to survive through if you will. It's been a stormy season of life. It has been important for me to remember that it's just that a season. To remember that we have weathered storms in the past, that God has been faithful, and  He is STILL faithful, we shall weather this one as well.

But we are still in the midst of a storm and storms can be very scary to
experience. There is a fine line I believe in being honest about your life,
carthartically sharing if you will and over sharing. So I will spare you the
details of our storm. Suffice it to say medical and financial issues are at 
its root. And if you are a reader who prays for us we GREATLY appreciate
your prayer support.

We still have Cody's kidney issues to resolve, we have a plan of action
(sort of) and just need the opportunity to get it started. How is it he is
going to be a junior in college? When I started this blogging he was in 
middle school...

Our Rachel has started her 'real' job as  a college graduate and we all
know how scary and exciting that can be. We are so very proud of
her accomplishments and the way she purposes to do something and 
does it.  When she was little I would have said she was headstrong but 
maybe determined is a better way to describe her. She is such a blessing!

We will get through the next couple weeks. This season will end and a new one will begin. The challenge will be taking what we learned from this season into the next.

light momentary affliction...

 For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. ~ 2 Corinthians 4:17 & 18

These are some of my favorite verses but, truth be told often times the affliction seems neither light or momentary. I was speaking with a friend earlier this month and she pointed out how important it is to be real in our suffering. Not for pity but for those suffering as well to know that we understand the struggle. That we understand laying in bed and dreading getting up that morning. That sometimes it is very hard to just put one foot in front of the other.

Our finances have been tenuous since autoinflammatory disease reared its ugly head in our lives. But the past three years with Mike's cancer diagnosis and subsequent heart issues we have been closer to losing our home more times than I care to think about. My own job, while rewarding is not the most constant source of income.

Facebook has this lovely 'On this day...' option. It amazes me has things that use to distress me have become so common place now. For example months that Cody would have 2 chemo infusions would be enough to send me over the edge. Now Hannah has infusions every 3 weeks and Lucas every 4. It's not that it has suddenly become easier ~ it so hasn't~ but it's just what we have to do, so we do it. The day- sometimes week before is rough because the pain is dreadful. The day after is difficult because their body has been saturated with a foreign substance. Yet it makes life bearable for couple of weeks.

For 2 years now we have tried to get to the bottom of Cody's hematuria with no success. Finally we are heading in what seems to be the right direction but it is not quick by any stretch of the imagination. I had hoped that being involved in the study at the NIH would yield more answers only to find we are still an enigma.

But, I strongly believe and am thankful that there is more to this life. Because I have heard His still small voice. I have felt His hand of mercy. I know beyond a shadow of a doubt that my redeemer lives and has gone to prepare a place for me.  So that I can say as Paul ~ We are afflicted in every way, but not crushed; perplexed, but not driven to despair;  persecuted, but not forsaken; struck down, but not destroyed.

Before The Morning ~ Josh Wilson

Do you wonder why you have to
Feel the things that hurt you?
If there's a God who loves you
Where is He now?

Or maybe there are things you can't see
And all those things are happening
To bring a better ending
Someday, somehow you'll see, you'll see

Would you dare, would you dare to believe
That you still have a reason to sing?
'Cause the pain that you've been feeling
It can't compare to the joy that's coming

So hold on, you gotta wait for the light
Press on and just fight the good fight
'Cause the pain that you've been feeling
It's just the dark before the morning

My friend, you know how this all ends
And you know where you're going
You just don't know how you'll get there
So say a prayer

And hold on
'Cause there's good for those who love God
But life is not a snapshot
It might take a little time, but you'll see the bigger picture

Would you dare, would you dare to believe

That you still have a reason to sing?

'Cause the pain that you've been feeling
It can't compare to the joy that's coming

So hold on, you gotta wait for the light
Press on and just fight the good fight
'Cause the pain that you've been feeling
It's just the dark before the morning

d of the living.

Wait on the Lord; be of good courage, and He shall strengthen your heart; Wait, I say, on the Lord!"

        We celebrated Mother's Day and our 24th year anniversary with this girls graduation from college and nursing school. It was a wonderful weekend.

    These kids just keep growing up! And yes they are all officially taller than me. I am so proud of them all. Really they amaze me.  Mothering is  not for the faint of heart but I feel blessed to call them mine.    

And this guy, after 24 years I think he's pretty swell. We have traversed through many hills and valleys in 24 years. It has not be easy to say the least but, it's been worth it.

The past 2 months have been difficult for us. Circumstances beyond our control have made life super challenging. Sometimes praise is definitely a sacrifice. I am working on not complaining and focusing on the good in life. To practice the presence of God. Remembering He is right here with me is not always the easiest but ever so helpful. I also know while we are surprised when certain things happen ~ He is not. My life thus far has shown me that He has a plan and He keeps His promises.

One of the things Spring teaches me ~ even through the rain ~ is that great things are happening that you can't see. Oh we see the rain. And we see the tiny buds pushing up through the ground but not what had to happen underground to get it there. So that is my anchor in times like these. 

Part of the Journey

  

 I have been reading over past blog posts and realized that in general January through March are not a good months for us. In past years during this time we have faced cancer, heart disease, as well as the weather during this period is not the easiest for a disease with chronic arthritis.
   This past March did not stray off course. Our sweet Rachel is in her last
couple months of nursing school. I had a call early in the week saying that
she was sick maybe the flu? By that Friday she was admitted to the hospital.
She has had various issues with low platelets, inflammation and arthritis
in the past ~ all maybe a part of this mystery condition we struggle with.
Apparently what happened was she started with an allergic reaction to a
sulfa drug which then cause a systemic response that basically shut down her bone marrow. Scary stuff.
     Rachel has some wonderful friends. Friends at school who were with
 her daily, some far away that checked in daily, and some along with 
family traveled the distance to check on her.
     Me, I didn't think it could get any harder than dropping Cody off for 
college 5 days after having his chest tube removed... bringing her back after this ranks right up there.
    I had an epiphany last week. it has taken me about 20 years but I
know how to parent of a child with chronic illness... now I need to learn 
how to be a parent of an adult with a chronic illness and its not easy.
It is hard stepping back or even knowing when to step back and I am
sure I did not do a great deal of things right this last experience. Hopefully
they will give me grace as I travel this road.



Here’s to you 
You were pink or blue 
And everything I wanted 
Here’s to you 
Never sleeping through 
From midnight till the morning 
Had to crawl before you walked 
Before you ran 
Before I knew it 
You were trying to free your fingers from my hand 
‘Cause you could it on your own now somehow

Slow down 
Won’t you stay here a minute more 
I know you want to walk through the door 
But it’s all too fast 
Let’s make it last a little while 
I pointed to the sky and now you wanna fly 
I am your biggest fan 
I hope you know I am 
But do you think you can somehow 
Slow down
Here’s to you 
Every missing tooth 
Every bedtime story 
Here’s to Barbie cars, light saber wars Sleeping in on Sunday 
Had to crawl 
Before you walked 
Before you ran 
Before I knew it 
You were teaching me 
The only thing love can 
Hold hands through it 
When it’s scary, you’ve got me

Slow down 
Won’t you stay here a minute more 
I know you want to walk through the door 
But it’s all too fast 
Let’s make it last a little while 
I pointed to the sky and now you wanna fly 
I am your biggest fan 
I hope you know I am 
But do you think you can somehow 
Slow down

Please don’t roll your eyes at me 
I know I’m embarrassing But someday you’ll understand 
You’ll hold a little hand 
Ask them if they can 

I am your biggest fan 
I hope you know I am 
But do you think you can 
Somehow 
Slow down
Slow down

    
      

      January and February seem to have flown by. I have been working 

longer days and my two kiddos at home have risen to the occasion and

I am so proud of them! 

      In reality Hannah is pretty self sufficient with getting to classes online 

and assignments done, but she has really been trying to get the house 

neat for when I get home. Coming into a neat house is simply amazing!

       Lucas has been fantastic and going to History & Science class and

getting the homework for them done before I get home.  He also does

his Literature work independently. When I get home we just have to do 

Math, GUM, and Vocabulary together. He has even taken initiative to start

projects that he would normally wait for me to be around before starting.

      Those things go along way to making this 30 hour work (40 with driving time) week flow smoother. The things that do not are making specialist

appointments, keeping them, and playing phone or email tag with said

specialists. So far we are managing.

      Tonight was Lucas's first home infusion. We were hoping to be able to schedule his and Hannah's on the same night, but Hannah may go to 
every 3 weeks so...
       On Friday, Rachel and Cody will be home! Yes, I am excited to have everybody under one roof. Cody does have a medical procedure on the 
following Thursday so we appreciate everyone prayers.
       Hannah got a camera for Christmas and has become quite the photographer. Often I hear Luke complaining of having to be her subject.

       Luke got compound bow for Christmas and on Saturday he and  

Mike took it to the shop and had the draw weight adjusted and now his afternoons are filled with target practice. 

                     

                                            
          It's a wonderful, awesome, and amazing thing watching your children       grow into adults. Even if it means growing older. ;)                                                                                               

My Nursing Student

My Environmental Scientist Major

       
                                                                                                    

        

      

A Brave New Year

    As I write this the sound of boys and Hannah, playing soccer fills my backyard. It's a great sound considering it took pain meds to get a certain 12 year old out of bed this morning. He actually came out took pain meds and crawled back in bed and fell back to sleep. This group of boys is a special bunch! Two, like Lucas & Hannah have a form of arthritis and one has Chrohns. So it warms my heart to see them being boys (and a girl :) ) out in the yard.

    This week we start back to school after a two week break. We start on a Tuesday.... affectionately called around here a "fake" Monday. "Fake"

Mondays tend to be worse than a regular Monday and after a two week break?...well it should be an adventure.

    Here at home we are halfway through the school year. Yikes! Halfway

through 7th and & 9th grades. When we started this 'school at home'

journey Luke wasn't even born yet. So it boggles my mind that he will be

in high school in a year and a half.

    Lucas's anxiety has been better but the new vitamins are not helping as
much as we had hoped. He has his 2nd of 3 loading dose infusion on 
Thursday. It remains to be seen how well this medicine will work. Hannah 
is doing well ,but like Cody in past, she gets to 3 weeks and starts to
have more issues.

    This week we try and get to the root of the kidney issues Cody seems 
to be experiencing. Prayer would be greatly appreciated. It is hard to send
him back to school with no answers or plan of action. He is a fighter
though and he amazes me with his ability to press on and live life to its fullest.

     Looking to my children as examples. Living life to its fullest is what I  seek to undertake this brave new year.