Ninth Move to Heaven Day

I miss you sweet Tucker. Sometimes I think you and grief are all in my crazy head. But days like today, when I purposefully reflect, I remember reality clearly.

We didn’t watch any of your movies. We had a quiet Sunday together as a family here on Fripp. I purposed to enjoy the blessings around me.

We slept in after a long night of fevers and coughing with Zion. Hunter took the little people on a walk on the beach. We had a nice breakfast individually. Enjoyed some sunshine on the deck with the Lord in my Bible. A couple worship songs and an online preaching service, was great.Then all gathered and played some games. Then went to the beach as a family on the golf cart. Ving built the soccer field and we had a nice soccer game. Dug some big holes. Ving, Hunter, and Isaiah all went swimming in the frigid ocean. Zion fell asleep on my chest, and I took the picture attached. Usually I love to post the picture of Tucker snuggling me on the beach, so I thought this was a gift from the Lord today with Zion and I.. I am a blessed woman.

I took the golf cart to explore and find a pool, but they all were closed until March. We checked out the activity center and Eden had a blast holding snakes and reptiles. We came home and enjoyed a steak dinner mashed potatoes and green beans, hunters first tutoring meal from dad and mom. We hope to do one per child during the week of teaching them to cook.

I was blessed to receive some lovely texts and emails of girlfriends remembering Tucker and loving me. So grateful.

I’m settling into bed early tonight, just pondering things in my heart. So grateful to be Tucker’s mama.

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Hello sunshine

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Love you Sunshine!!!!

What fun to wake up this morning and see what our sanctuary for the month looks like in the daylight. We worked hard on pack last night and got everything situated. Went to bed around midnight. Baby was sick with a fever of 104 all night, so that was stressful. Still watching him today to decide what to do with him. Virus? Ear infection back? Not sure. Don’t want to spend tuckers move to have a day at the hospital, but might have to seek treatment.

Today’s been fun exploringThe area. I was a bit nervous when I woke this morning and Hunter Judah and Isaiah were missing. They went off on an adventure and I fear the worst. They returned so happy with tons of shells and a complete skeleton of a horseshoe crab. Excited to explore and starting to venture. We got all the bikes working and went on a family bike ride to explore the local area. Went and visited the beach and check that out. Gorgeous.

My favorite quote of the day was eden exclaiming, as she twirled in the water, “I have never been to the ocean before!”

We’re going to venture into town tonight to get the rest of our groceries. Perishables.

I’m resting in the sun on the porch with baby Z, he taking a nap on my chest, the others went back to the beach to play some soccer in this 4 o’clock daytime high temperature of 50.

Ving and Hunter were supposed to catch up on her schoolwork but they’re behind for the week, but there are so many distractions. Sunset will bring more time and opportunity.

One thought on my heart today has been that the earls, my cousins, giving us this house is a gift of this month to use as our sanctuary, a blessing. My heart has been overflowing with gratitude, and amazement at this free gift. Jesus giving me my free gift of salvation is the biggest gift ever. But for earthly gifts, this one is generous and huge.

I am praying for God to do mighty things while here. Trying to make note of them in my heart. What do I want these days to count for? How do I want myself to improve and become more Christlike? How can I take better care of myself, my children, and my husband. I asked the Lord to help me order those into realistic goals for each day.

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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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