Winter Escape 2015 – Day One

We have talked about escaping the winter, and enjoying a longer period in the south, for many years. After the past two winters of Irvs poor health and illness, we decided to go for it this winter. Spending the remaining of February in Fripp Island, South Carolina, at the PattiShak, cousins Earl’s beautiful beach home. Then heading to Daytona Beach, Florida, to spend the month of March near Darci’s family. Still working remotely and homeschooling by day, and hopefully outside – adventuring otherwise.

So grateful for friends help, watching children, taking them on adventures, and helping us get packed up. It’s been a month of preparations. Grateful for a friend’s trailer to tow behind our Salisbury-bus, and the ability load lots of our not necessary items, but fun-to-haves.

Departure from Webster at 12:11 pm.

Originally we had intended not to spend any days of February in New York, but a church conference, work meetings, and illness prolonged our departure date.

After various illnesses, with three trips to the doctors office this week, we began our journey today praying for safety and thanking God for improved health.

We have never driven farther than six hours with our family. This first stretch to South Carolina, is 16 hours.
Our goal was to drive half-way to Fripp, SC and stay at a hotel, with a pool.

We are only eight hours in, and have already had quite the adventure and made many memories. More stops than we had planned for potty breaks. Judah who just finished his antibiotic, is needing to have diarrhea every 45 minutes. Fortunately we have a potty seat here and many garbage bags. Hunter is getting brother of the day award. Isaiah, ate a lot of Subway turkey sandwich with cheese, and since he just recovered from a stomach bug, he vomited. Again, Hunter was able to share the garbage bags with him. Success. Eden, has gotten carsick, and Zion spiked a fever. We multitasked at BJ’s, filled the gas tank, used the bathroom, and bought cough medicine, Advil, Gatorade and peanut butter. Because, we laid out 24 peanut butter and jelly sandwiches to make this morning, and had no peanut butter. We will be making them at the hotel tonight. Memories.

I just purchased this Day One App, fitting name, and I hope to keep track of our memories during this Winter Escape!

Approaching Richmond, practicing our CC memory work geography and capital song! Lol

9 hours and 24 minutes of adventure down. Success! Life with the Lord and Salisburys is always an adventure!

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Again … tumor & surgery?

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Worship service,  a lovely walk, and swinging in the sunshine this beautiful Sabbath day.  Makes my heart sing!

Irv and I chatting, few words.

Just being.

Sharing what God’s Word has been speaking to our hearts.

 Truth, these past few months have been hard.  The just-do-the-next-thing kinda hard.  Haven’t posted, but it’s time.

As we chatted and swung,  Irv shared 1 Peter 5:6-11 has been one of his favs lately….

Humble yourselves, therefore, under the mighty hand of God so that at the proper time he may exalt you, casting all your anxieties on him, because he cares for you. Be sober-minded; be watchful. Your adversary the devil prowls around like a roaring lion, seeking someone to devour. Resist him, firm in your faith, knowing that the same kinds of suffering are being experienced by your brotherhood throughout the world. 10 And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you.11 To him be the dominion forever and ever. Amen.”

It began with anxiety, not sleeping spells, amped feelings, palpitations… it would last a few days and disappear as fast as it arrived.   It cycled practically monthly.   Then, the never-ending, winter days  rolled together somehow and suddenly the symptoms became so constant our barometer for a ranking a good day became skewed.  He’s been suffering.  Many dark & difficult days.

After failing many tests at the neuroendocrine center,  this past week we were told that his pituitary brain tumor has returned or remaining cells have grown.  The stinkers are producing a lot of ACTH, wrecking havoc with Irv’s hormones, brain, and body function.   He’s lost 20# and is having difficulty functioning in his daily living activities.

We walked away last spring from surgery thinking all this was behind us.  But now we’ve learned more.

But God knows and already  knew.

Irv has the diagnosis of Cushings Disease, “a very terrible disease” as Dr. Calvi explained.  He was in remission after the first surgery attempt 3/13, and doing wonderful on NO medications.  Some patients remain in remission forever, some 6 months, and some 5 years.  We assumed we were in the forever catagory.

His Cushings disease is noted to be caused by  ACTH secreting microadenomas.

Currently, it is recomended that he undergo repeat surgery on April 15th, to remove tumors if possible.  With the amount of pituitary he has left currently, he is only a surgical candidate one more time, as a possible permanent option to rid this disease .

Then, if surgery fails, medications and radiation are only options to attack microadenoma tumors in future.  We would like it gone forever, with surgery being option for that outcome, and preserving pituitary function.

We ask and know that God can heal Him in any way He sees fit –  and we walk forward seeking wisdom to make treatment decisions.

We covet your prayers.

Especially this week as we make decisions and seek second opinions in Boston and / or Pittsburg.  Depending on answers we will continue in Rochester with surgery on 15th of April or not.

Irv has casted his many anxieties on God, as we know God cares for us.  He’s been humbled and continues to humble himself under the mighty hand of God, a good and loving hand.  We’re resisting being devoured, asking for strength to be firm in our faith.  We’ve been comforted by God, as we know His faithfulness in past very well.   We are reminded that we ALL  are suffering really, everywhere, with different struggles and areas we are being stretched and growing.  But the God of all grace, who has called us in Christ, has, and will again … restore, confirm, strengthen and establish us.  Grateful.

Thank you for loving us…

Darci (Irv & family)

I’ve had some ask me about our hope and strength, and we LOVE  sharing about our personal daily relationship with God.  If you have questions, please ask!  You might enjoy this little video the kids and I watched recently too 

 

Day of Play

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Friday, we journeyed to the National Museum of Play. Our membership expires the end of this month and I wanted to make one more trip. We have enjoyed this wonderful Christmas gift Uncle Jared gave us last year.

We met up with friends for a couple of hours, enjoyed lunch, bought some Christmas presents in the gift shop, and finished the children’s sibling Christmas shopping on the way home.

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My Birthday Man

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I thank God for this mighty man. Happy birthday sweetheart. Thank you for loving me as Christ loves the church, serving our family faithfully with excellence, and being an honorable, mighty man of God! We love you more than words or emotion can express.

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Cookie Day

I believe there should be such a day, in the month of December. However, none of my children have any memories of a December cookie day with Mom. But, I do. It was Christmas of 2005, and I made some type of cookie with Hunter age 4 and Tucker age 2 1/2. I have a lovely picture of us wearing our aprons and using our kitchen helper stool. Grief has a way of unconsciously avoiding activities.tucker at sink

Last Christmas, great aunt Lynn and grandma made a fun kitchen day with Christmas activities and making bark. This December, it struck me suddenly, this lack of my children having a cookie day memory. I searched for a long-ago friend’s best cut out cookie recipe ever, and went to work. To work, that is, with my amazing mom at my side. I’m wise to know that one should not attempt such a mission without grandma.

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Grandma even gets the credit for calling me from Wegmans, and picking up my missing ingredients. She also dropped off my Christmas gift, a prayer-dream of mine for many years, my first mixer ever! Don’t let my lack of ever owning a mixer, be a testimony to my baking skills. LOL.

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I had to call my baking friends to find out if salted butter was allowed in cookies, and if I could substitute skim milk for regular milk or soy milk, and this was stressful details! Eden and I arose early to make dough, because it had to be refrigerated for three hours minimum. It was a fun early-morning activity.

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The festivities began…

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Judah is at a special age, and a constant reminder of the gift of Tucker. These next few pictures are some of my favorites from the day.

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Ving had his friend Jeremiah over for a few hours in the afternoon before church to hang out. They were such fun to have in the kitchen. Jeremiah began rolling out dough and using his cookie cutter like a pro. I overheard Ving comment, “You look like you have done this before.” To which Jeremiah replied, “You look like you have not!” Lol.

Grandma just giggled as she taught Ving how to roll out dough, but to have it continuously wrap around the rolling pin and him keep on rolling. It then dawned on me, that my oldest son of almost 14, did not know how to make cutout cookies either!

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And the decorating began…

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Lots of pictures. Lots of memories.

So grateful for all these treasures the Lord has given me.

Lots of cookies. Lots of calories and I should-not-have-cookies-for-breakfast, mornings. Cookie day is fine for me once a year!

We had planned to make three different types of cookies, but this adventure took us six hours, so we were content with these!