God’s Goodness in the Whirlwind

Summer is more than half over. The first half felt like a complete whirlwind to me. This week has been the first week I’ve been able to rest, nap and catch my breath.

We did our first camping trip of the season over Canada Day weekend. My anxiety was through the roof with my inability to help in prepping at all. My amazing husband and our amazing children worked so hard and did such an excellent job of getting us ready and making our camping time beautiful. We came home one night early because of heavy rain but it was so nice to be outside.

Next was prepping for our entire family to spend 6 days/5 nights camping at Kejimkujik National Park. We spent a couple of nights last September and all loved it so much we couldn’t wait to go back. But once again my anxiety and fierce mom guilt loomed heavy each day. There was so much to pack and prep, making sure we didn’t forget anything as there would be no running out for forgotten items. Lot’s of willing helpful hands made everything work. To go from being able to do almost all of our prepping on my own just a year and a half ago to sitting and not helping at all was devastating for me.

My soul is weary with sorrow; strengthen me according to your word.
Psalms 119:28 NIV

Despite me and my feelings, we had a wonderful time. To have all of our children, their partners, our grandbaby and best friends together, filled my heart like nothing else. I loved watching and soaking up every second with them.

An unbelievably huge blessing delivered the night before we headed to Keji by my beautiful sister and her husband…..a scooter. It allowed me to leave the campsite, join everyone to the beach and playgrounds, on walks, down to the waterfall. All things I never would have had the strength or ability to do. It has been a gift at home too, I can now get around the yard, go for a scoot down the road, finally go shopping, something I haven’t been able to do for over 4 months. So so thankful for this blessing.

We came home with my heart overflowingly full but my body extremely exhausted. We got home on a Friday, enjoyed our church’s summer picnic and worship night on Saturday, church on Sunday then a crazy full week of medical appointments.

* I had an ECHO test in between our 2 camping trips. My ejection fraction has stayed fairly stable despite all the chemo and other medications it is at about 45%.

* Monday, I had a zometa infusion. This makes me tired, gives me a low grade fever but is keeping my bones strong.

*Tuesday was an oncology appointment. A few adjustments to my meds. Discussion over my low hemoglobin count.

*Wednesday was a VON visit for my monthly blood and urine tests along with wound care that began right after our first camping trip, early July. VON have been coming to our house 4 times a week to care for my wounds. A huge praise is needed here. For most of early July my skin continued to break down terribly, new ulcers erupting almost daily. I had over 20+ wounds on my legs and arms, care was taking over an hour. But while we were at Keji and from there forward new eruptions stopped and my wounds began healing rather quickly and have continued to heal so well. I now only have two spots needing care and they are looking wonderful.

*Thursday was a full day spent at the cancer center receiving 2 units of blood for my low hemoglobin. I hadn’t received blood products since my childhood cancer. It took a couple of days but I’ve definitely noticed a difference in my energy level.

*Friday was my summer CT. The iodine you need to drink does a terrible number on my digestive system, it doesn’t sit well. Another huge praise here! No changes! Barely visible spots and nothing new! So very thankful that all we’re doing for my cancer is working. It’s heartbreaking to think our life would be pretty much back to normal now if I didn’t have scleroderma though.

The weekend allowed some breathing time and naps while the children were blessed with visits to Mavilette Beach both days with friends.

Thankfully this week has been quieter with only one Dr. appointment to see a GI specialist. Scleroderma is affecting my esophagus. It is tighening, making swallowing difficult. He’s going to do a thorough check and possible stretching of my esophagus in September.

Through July my ankles and feet tightened more, making me more unsteady with walking. A walker with a seat has been a huge blessing, letting me rest as needed while it keeps me steady and safer. I’ll use the scooter for longer distances or longer periods of time and the walker for short trips.

We ended the week with our sweet girly getting spoiled for the day, that she so deserves. She has grown up so much this year and helps me so much.

Children are a heritage from the Lord, offspring a reward from him.
Psalms 127:3 NIV

While the rest of us enjoyed a little visit to the playground with our precious grandbaby fitting right into the mix, she is so fun. Love watching her little personality blossom.

July also had us celebrating two birthdays for two of our boys. We now have a 13 and 20 year old in the house. Love them both so much!

This guy didn’t get to celebrate his actual birthday as he’d hoped. A break he had last year, never completely healed so he needed some bone graphing and a steel plate. Not fun but he did great and is healing really well.

This past week or so, I have had no noticeable changes or tightening with my scleroderma. This is a huge blessing. Please pray that these meds may finally be beginning to slow progression.

Please pray for the hearts of everyone in our home. There is weariness. This is hard for all of us. The workload I had carried was huge. It all falls on the shoulders of everyone else along with the added help I need each day. It’s alot to carry and my wife/momma heart is hurting. With school looming in the near future, this will add another element to our day again.

Be devoted to one another in love. Honor one another above yourselves.
Romans 12:10 NIV

Even youths grow tired and weary, and young men stumble and fall;
Isaiah 40:30 NIV

but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.
Isaiah 40:31 NIV

Praise the Lord with us for His many blessings this summer!