Pressed but not Crushed

(Italics taken from a devotional entitled "Streams in the Desert" p. 391-393. This particular article resonated with me (Renée) and in this post alternates with my own thoughts).

"They were a people who were living to themselves. Their hopes, promises, and dreams still controlled them, but the Lord began to fulfill their prayers. They had asked for a repentant heart and had surrendered themselves with a willingness to pay any price for it, and He sent them sorrow. They had asked for purity, and He sent them sudden anguish. They had asked for meekness, and He had broken their hearts. They had asked to be dead to the world, and He killed all their living hopes. They had asked to be made like Him, so He placed them in the fire "as a refiner and purifier of silver" (Mal. 3:3), until they could reflect His image. They had asked to help carry His cross, yet when He held it out to them, it cut and tore their hands."

I (Renée) remember asking God for humility. I remember asking God to challenge my faith, to grow me, to not make my life so comfortable. Little did I know how much God was going to take me seriously in all these prayers over the last 10 years...

Our most recent challenge has been a cluster of smaller, related challenges. Each a little similar, each one health related: Joel's back is a constant heartache for me. Nerve pain down his leg and into toes, tight muscles along his spine like steel cords. And yet he copes well, smiling at me throughout the day and being the Daddy his children need. But there are days that are hard. Painfully hard. And he's only 35.

A certain chiropractor was recommended to us by a friend. I had noticed the results in this certain friend who went there and so we decided to try it. This chiropractor has a strong faith in Jesus, runs his business with Christian music blaring, and treats the problem not the symptoms. There is something else that's different with this doctor than other chiropractors. His practice is based on a neurological philosophy. The spinal cord sends messages throughout the body and to all the organs and is vital to the survival and health of the body. His technique then, is to "reset" the signals from the brain to the organs by simple techniques which I do not have time to explain here.

The chiropractor evaluated Joel and to make a long story short: six years ago Joel was diagnosed with a short leg resulting with a 1.5 cm lift on his left shoe. Well, it turns out his other leg is shorter- and not by that much. So because of this misdiagnosis, Joel is now experiencing degeneration in his left hip, his scoliosis is worse and his herniated disc is not healing.

Forgiveness for the doctor who misdiagnosed him...

The chiropractor recommended the whole family get checked out since scoliosis and other such problems can be passed down to the next generation. So we decided Joshua should go in since he has the most health problems at the moment.

Joshua's evaluation: He has an extra disc in his lumbar. He also has a six degree twist to his spine - the start of scoliosis. And because of this skeletal problem it is pinching a nerve in his spinal cord that is directly in tune with his respiratory system, possibly causing his asthma difficulties.

"They had not fully understood what they asked, but He had taken them at their word and granted them all their requests. They had been unsure whether to follow Him such a long distance or whether to come so close to Him. They found it easier to obey than to suffer, to work than to give up, and to carry the cross than to hang upon it. But now they could not turn back, for they had come too close to the unseen cross of the spiritual life, and its virtues had pierced them too deeply."

So what more can God inflict upon our nine year old son? Not only does he have asthma, super sensitive skin that breaks out in hives when a band aid touches it, had ITP (a blood (un)clotting autoimmune disease), has Type 1 Diabetes but now he has an extra vertebrae and possible scoliosis. He's NINE. There is no diet remedy for scoliosis. No herbal concoction can take care of this. This is skeletal.

The neurological chiropractor says he can treat Joshua. Correct the scoliosis and more than likely, eliminate the asthma.

Of course I have my doubts. I've heard all this "treatment" and doc's "plans" and read the books telling me about "cures". The only cure I've been able to find is the cure for Celiac Disease. Praise God for that.

This chiropractor seems our only hope. His philosophies on medicine line up with mine. His diet choices are whole grain, whole foods - pretty healthy. His methods really seem to work.

But it's an hour drive away. In good traffic.
It's also out-of-pocket.

Three days a week for the first four months of treatment. For both Joel and Joshua. That's at least six hours of driving a week.

So we keep giving it to God. Surrendering these earthly tents to Him.

"Now at last their opportunity had come. Earlier they had only heard of the mystery, but now they felt it. He had fastened His eyes of love on them, as He had on Mary and Peter, so they could only choose to follow Him. And little by little, from time to time, with quick glimmers of light, the mystery of His cross shone upon them. They saw Him "lifted up from the earth", and gazed on the glory that radiated from the wounds of His holy suffering."

Our son, Joshua, is a brave boy. He has looked at chronic disease in the face and shook it's hand. He has warmed nurses' hearts and made them smile. He has looked so sweetly at me countless times while I watched helplessly as tubes, needles and white sheets dominated his life. He has matured so much over the years as hives, asthma, and blood are just a part of our day.

Why him? Why does his body have to be wracked with shots, immune system problems, disease and now scoliosis?

"As they looked upon Him, they approached Him and were changed into His likeness. His name then shone out through them, for He lived within them. Their life from that moment on was one of inexpressible fellowship with Him above."

O Satan, beware of my son. Though you try to kill him with disease and fill his life with pain, it is through this pain he is being made new, he is being made like his Savior Jesus Christ. A suffering servant. "Jehovah saves" my son and his life will not be in vain.

"Yet God strengthened them and protected them, even from themselves. They knew it was good to suffer in this life so they would reign in the one to come; to bear the cross below, to wear a crown above; and to know that not their will but His was done in them and through them." ("Streams in the Desert" Devotional pgs. 391-393)

Sing and Make Music

Praise the Lord!

How good it is to sing praises to our God;

for he is gracious, and a song of praise is fitting.

He heals the brokenhearted, 

and binds up their wounds.

Joshua trying out Daddy's electric guitar

Ever since Emily died, Joshua has complained of stomach aches. Until last fall. 

The summer of 2012 the Lord did miraculous healing in my own grief and thus in the grief journeys of my children. Ever since then, Joshua has not complained of stomach pain.

Josh has been ITP free for over one year now.

Joshua's blood sugar levels are steadily (and very slowly) improving. (We are giving him Prickly Pear Extract- a natural source of insulin).

Madelynn with Davidic harp (lyre)

Sing to the Lord with thanksgiving; 

make melody to our God on the lyre.

Rachel with harp

Rachel continues to eat gluten, with no side effects. Does she still have Celiac? We don't know, but we do know that she is happy, content, learning, growing and exploring. She is showing no signs of disease.

Hudson tooting on the recorder

Let Israel be glad in its Maker;

let the children of Zion rejoice in their King.

Praise him with trumpet sound;

praise him with strings and pipe!

Let everything that breathes praise the Lord!

(Psalms 147, 149 & 150)

Immortality

I have a confession to make.

The Bible says to confess your sins to one another so this is an attempt at that. The Bible also says Do not covet. That means, don't want what other people have, be content with what God has given me, be thankful.

So, here's my confession:

I covet other people's healthy, living children.

There. I said it. It's out there. And as I say this, I have two fully healthy children. Though I am incredibly grateful for them I brace myself for the day that Madelynn will come down with some awful, life threatening disease- like her 3 older siblings. I dread the day that Hudson will end up in the emergency room like his brother. 

I see other people's children. Healthy. Happy. Living. They can eat what they want. And it does not affect them. They can go out for ice cream without a second thought. Restaurants and festivals are not intimidating.

Children laughing and yelling, not silent and dead in the ground.

A friend posted this quote awhile back. And it has changed my view of people, of life and of eternity...

you don't have a soul.

 you ARE a soul.

you have a body.

-c.s.lewis

My children are SOULS. Living souls who yearn for heaven just like I do. We are souls made in the Image of the Eternal God Himself. These bodies we walk around in may be full of disease and death. But that does not change the fact that we are souls full of life. 
Joshua is not a diabetic. He is an immortal, treasured soul whose body has the disease called diabetes.
Rachel is not celiac. She is a precious soul made in the likeness of her Maker but her body cannot handle gluten at this time.
Emily is not dead and silent in the ground. Her body is dead and silent. SHE is alive, because she is a soul, an eternal soul like her Creator.

So though this life is not "fair", I am grateful for my God. The God of hope and restoration. Of life and heaven. For Him, I am grateful. And for Him, I will not covet. For Him, I will not compare my children with others. For Him, my heart will be grateful. 

And to Him, I pray that all my children will someday have a heaven day like our Emily.

A New Normal...

My New 'Normal'

Normal is having tears waiting behind every smile when you realize someone important is missing from all the important events in your family’s life.

Normal is reliving that day continuously through your eyes and mind.

Normal is every happy event in my life always being backed up with sadness lurking close behind, because of the hole in my heart.

Normal is staring at every baby who looks like she is my baby’s age. And then thinking of the age she would be now and not being able to imagine it. Then wondering why it is even important to imagine it, because it will never happen.


Normal is telling the story of your child’s death as if it were an everyday, commonplace activity, and then seeing the horror in someone’s eyes at how awful it sounds. And yet realizing it has become a part of my “normal”.


Normal is each year coming up with the difficult task of how to honor your child’s memory and her birthday and survive these days.


Normal is my heart warming and yet sinking at the sight of something special that my daughter would have loved, but how she is not here to enjoy it.


Normal is having some people afraid to mention my child.


Normal is making sure that others remember her.


Normal is after the funeral is over everyone else goes on with their lives, but we continue to grieve our loss forever.


Normal is weeks, months, and years after the initial shock, the grieving gets worse sometimes, not better.


Normal is not listening to people compare anything in their life to this loss, unless they too have lost a child. NOTHING. Even if your child is in the remotest part of the earth away from you – it doesn’t compare. Losing a parent is horrible, but having to bury your own child is unbelievable.


Normal is trying not to cry all day, because I know my mental health depends on it.


Normal is realizing I do cry everyday.


Normal is being impatient with everything and everyone, but someone stricken with grief over the loss of  their child.


Normal is a new friendship with another grieving mother, talking and crying together over our children and our new lives.


Normal is wondering this time whether you are going to say you have four children or three, because you will never see this person again and it is not worth explaining that my baby is in heaven. And yet when you say you have three children to avoid that problem, you feel horrible as if you have betrayed your baby.


Normal is knowing I will never get over this loss, in a day or a million years.


And last of all, Normal is hiding all the things that have become “normal” for you to feel, so that everyone around you will think that you are “normal”.


-Author Unknown   




A friend posted this on her blog. A lot of what the Unknown Author writes about I can relate to, but not all do I necessarily agree with. I know Emily is in heaven, and I know all things will be restored, made new, tears wiped away when Jesus returns- hence I will get over the loss someday. 




Joel and I are learning and relearning that "normal" is very relative. So much happens that everyone is constantly adjusting. It doesn't take a big event (ie: loss, diagnosis, new child) to throw our old normal out the window. Usually it's just the mundane things- like a child eating 3-4 times more than usual because of a growth spurt, or a wave of sickness hits the house, or getting to bed late too many days in a row, I could go on and on. And all these things happen one after the other. That's the part I can't get over: Our family is in the middle of dealing with one episode of Something and then Another Thing comes along and we need to deal with that and then look out! Here come Something Unexpected and then Not That Again in the same week. It's a whirlwind. And through all of it there are the daily chores we all need to keep up on. Whew!  It's so very easy to get caught up in this whirlwind. And then get irritable about it. It doesn't take much for me these days. Last weekend I pretty much had a permanent look of exasperation on my face. 



Doesn't God say, 'Children do not exasperate your parents or they will become discouraged?'


Um, no. It doesn't. I think what God says is, "Rejoice always, pray continually, in everything give thanks for this is God's will for you in Christ Jesus."


Seems impossible, Lord.


"With God, nothing is impossible."
"The fruit of the Spirit (italics mine) is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self control."


Oh, humility. Where art thou? Thou art shy and fleeting, yet without you, I cannot walk in the Spirit.
May we all find this humility that Christ spoke of.

"Have this mind in you, which was also in Christ Jesus: 

who, existing in the form of God, 

counted not the being on an equality with God a thing to be grasped, 

but emptied himself, 

taking the form of a servant, 

being made in the likeness of men; 

and being found in fashion as a man, 

he humbled himself, becoming obedient even unto death, 

yea, the death of the cross. 

Wherefore also God highly exalted him, 

and gave unto him the name which is above every name; 

that in the name of Jesus every knee should bow, 

of things in heaven and things on earth and things under the earth, 

and that every tongue should confess that Jesus Christ is Lord, 

to the glory of God the Father." 

He Heals All Our Diseases...

  What do you do with a verse (see title) like that?

Why does our seven year old boy need to live with this consuming, painful, expensive, wasteful disease?

Why should our little boy need a man-made pancreas? 

(The box above contains Joshua's new insulin pump.)

Or why does our little girl need to deal with a disease that separates her from everyone else? 

(Yes that photo above has two toasters. One's Gluten Free, the other is gluten.)

How do you explain to your baby that she will never go outside, why she has tubes down her throat 24/7, needs a machine to breathe for her and is constantly being poked and beeped at? 

And then she leaves before we say goodbye.

And yet through all of this darkness

there is love...

And spring times...

The Lord is my strength.

And the Lord shines through Joel like a beacon, like a lighthouse.

I am so thankful for them both.

All Good

The Big Day is wrapping up:

Blood platelets are in the normal range. Joshua no longer has ITP! (hip hip hooray!)

Joshua was brave and now has the insulin pump. Thus begins another adventure...

Rachel and Madelynn and Hudson had a good time at their respective babysitters. :)

And now, as I type this, a dear friend is being rushed to the hospital via ambulance with a possible stroke.

Lord, have mercy on us.

Big Day

Today we embark on yet another day of doctor's appointments.

Today Joshua is tested one last (we hope!) time concerning his blood platelets. If they number in the normal range - Josh will officially not have ITP anymore.

Today Joshua, Mommy and Daddy get trained in to use an insulin pump. He actually gets hooked up to it today, which he is (a little) nervous about.

Thank you to those who are watching our other children-we so appreciate it!!!!

Smorgas-nalia

Lots going on. Sometimes it's overwhelming. But I know God is not overwhelmed and to Him I trust and depend upon for strength.

Last week we had a scare with Josh so we had his platelets checked. No problems-his numbers are in the normal range.

Joshua's insulin pump arrived on Sunday. Who knew there would be three workbooks and a big box of stuff to sort through just for a pump? A little much I think, but we're wading through it.

Hudson is finally over his sickness. I think he's taking a break from teething too. He's been sleeping through the night a little more and he's been happy! It's so nice to have my Hudson-boy happy again. He babbles so much; we have "conversations" which he turns very serious for, and then starts smiling and laughing. He's still crawling and cruising along the furniture. No interest in walking...yet.

Madelynn is still sick. And miserable.

Rachel has been bubbly and happy. She's been saying some funny stuff, but I keep forgetting to write it down so I can share it with you.

It seems as though it's spring here. Robins, rain, sunshine, 60 F, breezy, walks, no jackets, yarrow and green grass coming up. I'm trying to get some spring cleaning done so I can move onto the yard work. I didn't expect spring to come so quickly! What a treat!

Trying to decide on having a garage sale or not.

Joel's been helping out at the church alot lately due to Pastor and his wife being on vacation. They deserve a vacation!!

I've been able to make bread almost everyday. I love fresh bread so much. My dad gave me an easy one rise recipe. It takes a mere five minutes to mix up. If you want the recipe let me know.

Joshua is working on his first creative writing assignment.

Joel and I bought a new wedding ring for me. I had lost mine a couple years ago gardening (or something like that) and we never found it. I love the new ring-it is so simple yet beautiful. I will try to post a picture of it later.

Joshua learned how to ride a bike!!

Rachel is learning to write letters and draw stick figures.

Madelynn knows most of her ABC's just by listening to the older two.

We visited some dear friends, Mark and Kelley, Oliver and Karis last weekend. It was so great to see them and catch up and see where they live now. (they moved recently). The kids had a great time together.

I really like birds. I'm not big into naming them, but I like the idea of birds. So sweet, so free, so fun to watch.

I miss Emily. But yet I am delighted that she is with Jesus.

I am excited and looking forward to this summer. This summer with a garden, and fresh air and picnics and spending time with family.

Joel took over for an evening after supper so I could go on a bike ride. (Isn't he a great husband?) I love to bike. I really do. I love to go fast and feel the wind, and yes even get out of breath. I feel so invigorated afterwards. I hope I can keep this up throughout the summer, then maybe I won't feel so tired all the time.

I love my kids.

I love my husband.

Another Update on Joshua

Yesterday Joshua had a doctor's appointment concerning the ITP. His platelet levels are now 329,000. A week ago they were 149,000. And two weeks ago they were 2,000. May praise be to Jesus!
Doctor's orders this time are: No Activity Restrictions. (yea!) And no more pokes until his appointment in April: In five weeks Josh will have another platelet check and if those numbers are good then we are in the clear. !!!

Bruises from the ITP

This spot on his lower back looks alot better than it did when it first appeared. The first time I saw this bruise, it was the darkest, bluest, purplest, blackest bruise I've ever seen. 

Notice bruises on both arms.

The day we went into the ER (Feb. 11th), Joshua had a bloody lip, blood crusted nose, and he was bleeding from his gums. These pictures are from after we came home from the hospital, so the purple spots look better. He also had/has petechiae (red dots) which aren't visible in these pictures.
Giving insulin shots was hard, because the giver of the shot (Joel or I) could see exactly all the other spots where we had previously given shots. Just red and purple spots all over those areas.

Another Update

Just wanted to let you know a little update on Joshua. He had his blood drawn and tested on Friday for a platelet count. And his numbers came back to nearly normal: 146,000. (Normal is 150,000-450,000) This is very good, but Acute ITP is more of a waiting game than we (Joel and I) anticipated. The hemotologist (Blood doc) wants to see Josh's platelet count steady over a period of time. The treatment he received at the hospital will wear off at about six weeks. So it is very important for Joshua's numbers to be consistent at about this time period and of course afterwards.

We are looking at about 2-3 months of going to the lab and getting Josh tested. If you can put yourself into a six (almost seven) year old boy's shoes, you may have a better idea on how to pray for him: He's sick and tired of being poked. He wants to run in the house again and he wants to ride his scooter on these warm sunny days (but he can't-due to his current condition).

Joel and I are doing pretty well. We are tired. I'm overwhelmed. My faith is strong, but my body and emotions are exhausted.

Rachel, Madelynn and Hudson are doing just fine. They've caught up on rest now so life is pretty "normal" now.

Thank you to all who've been praying. I don't know where we'd be without Christ and His Church.

Come Lord Jesus, Come quickly...

HOME!

We are home now! Hurrah! A big thank you to all for your prayers and support and encouragement. Joshua is doing well, no bleeding at all today. When we arrived Sunday at 1 am J's platelet #'s were at 2,000. The docs wanted him above 10,000. Today he was 16,000! (A normal person is between 150,000-450,000) The docs say he should be back to normal within six months. For all those curious I finally have the correct name of the condition. Ready? here it goes: Ideopathic (no one knows why) Thrombocytopenic (low platelets) Purpura (purple spots) or ITP. So for Joshua's homework: two feet on the ground until further notice.


You can read more about ITP Here if interested.

update on Joshua (edited)

We spent the night in the hospital due to a few bloody noses. Because of his low blood platelets, bleeding is a warning sign for Joshua's health. The nurses put a mister/vaporizer in his room, and Joshua has not bled from his mouth nose since! :) We are waiting for Joshua's platelet numbers to come back from the lab and this will determine when we get to go home. Hopefully today. Thank you for praying. Joel and I are doing well.

Prayer for Joshua

Please pray for our son Joshua who has been admitted to the hosptial. He has an auto immune condition called Acute ITP. THe doctors don't know why he has it, but they have given him a blood clotting medicine to help with the bleeding. And he is receiving antibodies to distract his body from attacking his blood platelets. He is doing well, but we want his blood platelet count to be back to normal. This condition is short term and treatable (most of the time).  We are hoping to go home either tonight (sunday) or tomorrow. Pray for Joshua as he is not enjoying all the pokes. :)
-Renee