Sunday, July 10, 2016

Join the club, Emma

Emma held out joining the eyeglass family club until June 2016. Her brothers gave her a huge "welcome to the family" cheer (as if she didn't count prior) when her hunch of needing glasses was confirmed by the ophthalmologist. She is most definitely delighted that she can now see leaves on trees and that she will not have such a hard time seeing the board at school. She looks adorable!

Friday, July 1, 2016

When life is turned upside down

These past three weeks since our arrival stateside have been anything but what we imagined or prepared for this summer.

Flashbacks from 2008 when Samuel was diagnosed with SVT and was in PICU for one week with subsequent ablation surgery, and 2012 when doctors found a mass in my breast which then led to surgical removal have not escaped our thoughts as yet another four years have passed and once again we are faced with a serious and uncertain diagnosis, this time for Jonathan.

For two years Jonathan has been struggling more intensely with his health, sometimes to the point of debilitation. We have carried on the best we could trying to adjust diet, supplement and self diagnose when little direction or help was received from doctors in our host country. Every test always came back with shining colors, which led our colleague to joke that "Jonathan is the healthiest sick person she knows." Abdominal pain has become that background noise in his life, sometimes screaming in combination with extreme weakness and fatigue. It has been a long and weary two years for us as a family both physically and emotionally.

His pain continued to the point that in less than a week after our arrival in the US he was in the Emergency Room for severe abdominal pain and weakness. The ER doctor apologised for the long wait we had to endure, and I thought that maybe he was trying to provide some comical relief, because Jonathan was admitted in the amount of time it took me to park the car and was seen by the doctor within 45 minutes! (Earlier this year Jonathan went to the ER in Italy and when he arrived he was 8th on the list, after 7 hours of waiting he had moved to 10th place. He left and never received care.)

A CT scan was ordered which revealed that Jonathan has an abdominal aortic aneurysm along with several other spots of dilation. We were in shock especially after the doctor assumed this finding was known to us as it was present in a CT scan from two years ago. However, his primary doctor never told him and only alluded to a small abnormality but that it was nothing to worry about. It was a lot to swallow and certainly turned our world upside down. We are thankful the aneurysm size did not require emergent surgery and that he was released to come home, but still we have been sitting with this news for two weeks now and don't really have a clear picture yet of all that it means since we are still waiting for his vascular surgeon appointment.

In three weeks we have had 22 medical visits between the five of us. Nine of those have been for Jonathan. Needless to say it hasn't been all that relaxing or fun. However, we are beyond grateful to be near family during this time, to have their love and support accessible in tangible ways and to be able to address all these issues in a medical system we know and that speaks English. These few factors alone remove a tremendous layer of stress from our lives. 

God is good ALL the time! None of this was a surprise to him. When life is turned upside down it only allows us to see him more clearly. His plan through trials in life are so that we might more fully understand WHO he is. These weeks have been a tremendous growing time as a family. Our kids have fears for their dad, wondering if this means we can't go to California or return to Italy as planned and it has been good to shed tears together and direct them towards Christ. I love how God always places timely words of encouragement, songs and scriptures in front of us that minister in a mighty way. 

A recent post on A Holy Experience by Ann Voskamp was so meaningful to me and I would encourage you to read it here. The following section inspired by Daniel 3:16-20 jumped off the screen and into my heart as I read this the weekend Jonathan came home from the ER.

Even if He doesn't do what we beg, we are still His beloved. 
Even if He doesn't, He still is. 
Even if He doesn't do what we will, His will is still right and His heart is still good and the people of God will not waver. 
Real prayer has eyes on Christ, not the crisis. 
Even if He doesn't--He does give enough--Himself. 
Even if He doesn't--He does still love us. 
"If He doesn't--I will still believe. Still believe--in Him." 
Another moment this week was when one of our children was expressing to a friend via text how they feel they keep losing hope about the situation and how they are frustrated that their faith is weak. (Yes, I read my kids' text messages and they know it.) That same day as I was waiting for Jonathan during his colonoscopy and endoscopy procedures, I read this post. Wow! The timeliness was from the Lord and served to greatly encourage this child that "it’s not the strength of our faith that gives us hope; it’s the strength of Jesus’s faith."

We continue to trust and believe in God's perfect plan for our family. No matter the diagnosis we want to glorify God in all things--in the wait, in the pain, in the unknown--because He is worthy!

Here are two songs that our family loves to belt out in the car these days...Thanks for praying for our family as we come to mind!

Good Good Father - Chris Tomlin
Trust in You - Lauren Daigle