I know everyone has been wondering about possible dates for travel, but everything has been so unknown. I’ve also had more kidney stones this week and a trip to Dallas for a nephrologist appointment so it’s been another very difficult week. We had some discouraging feedback from the German Embassy here and our insurance so we honestly didn’t know if a trip to Germany would happen until like Spring because of COVID travel restrictions. Fortunately I have a very determined uncle who has been using his own German contacts to figure out things to try. He wrote to the German Federal Police about our situation and this morning called me with the wonderful news that if we can get the German doctors to write up a letter, we should be able to be accepted into Germany if we fly there.
My uncle is already looking up tickets and we could possibly leave as early as July 6th. Today we’ve been trying to get everything in order and figure out all the details, but I wanted to finally make an update and ask for my prayer warriors to pray for a way, financially & travel wise. Yesterday I was having more doubts, especially hearing more reports in the vascular compression groups of the German surgeon considering retirement at any time. We have a lot of odds against us, but I have seen the power of prayer and what God does with the impossible so I trust Him and how He uses others in unbelievable ways. I mean how much everyone has donated already is a testimony to that. Everything each person is doing, the sharing, the praying, the donating, the encouraging words, the advice, they are answered prayers for us and blessings that we could not fathom when we finally decided to open up about what’s going on.
I know some of you had no idea any of this was happening or to the extent. Honestly my husband and I are pretty private people and had lots of discussions about putting my story out there or not. We also have a difficult time asking for help. That has had to change when we no longer had a choice not to. I also thought if I or my family didn’t talk about it, no one would worry. Unfortunately this didn’t actually help and we had some really scary times this past year that I know they were worried they were going to lose me. To be honest some nights I didn't know if I was going to make it and the reality is that things are pretty desperate. I’ve had some pride I’ve had to finally release and admit how different my life and my family’s life has become with my illnesses.
I felt guilty bringing up my girls because I didn’t want people to think I was using them to get help, but honestly this affects me being a wife, mom, & our daughters’ lives. My oldest tells me daily how she wants me to go to the doctor so I can feel better to play with her. I’ve learned to accept the type of mom I currently am for the girls and let go all the expectations I had, but I know when I’m in so much pain, I can’t even be the mom for them emotionally or my happy self because I’m hurting so bad. Those little girls are my biggest advocates and have more empathy at such an early age, but I know if I don’t get surgery, I don’t know how much longer I will be around for them. I’m crying as I’m typing this and starting to reconsider sharing all these words, but I know that if I don’t, people won’t start taking these vascular compressions seriously. I’ve had a post in the works for weeks now about death rates for someone with SMAS, which often isn't diagnosed or believed until autopsy.
"I will trust you Lord, I will fear no more."
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