While sheltering-in-place I’ve had the opportunity to read through some of my old journals written when Kai was first diagnosed and I’d love to share one with you. I’m struck by major developments in my thinking and beliefs, so I will make some comments from my 2020 self, at the end of this post that I wrote in 2014.
Originally Written by Kim Owens & Published on Caring Bridge (7.14.14)
What a week we’ve had! Our trip from rural, coastal GA to DC was AMAZING! Thanks to our Congressman John Barrow and his wonderful staff the trip was filled with surprises beyond our wildest dreams!
Day 1: Went up to the top of the Washington Monument (and witnessed a proposal), visited the Lincoln Memorial, the WW2 Memorial, the Korean War Memorial, and the Vietnam Memorial. Then we rested for several hours. In the late afternoon, we met with our Congressman, Mr. John Barrow and his staff. They learned a lot about Kai and presented Kai with a cute stuffed Eagle in honor of his Kai’s Comforts campaign. (Kai made an exception and decided to keep this one very special stuffed animal for himself!) Then we were surprised to have a meet and greet and photo op with Speaker of the House Mr. John Boehner. Kai was amazed to meet our Congressman and our Speaker! He kept saying, “Wow, I just met 2 of the most powerful men in America!” Mr. Boehner’s staff was gracious enough to take us onto his private balcony. It was an amazing view of the Washington Monument and Mall. Meeting these great men and walking the halls of the Capitol, visiting the private offices and seeing the Secret Service Officers was such an honor. Then we took the Metro out to Old Town Alexandria and had dinner with our friends the Shannons. We hadn’t seen them since their wedding 10 years ago in Palm Springs FL. It was so fun to see them and meet their beautiful girls. Then we collapsed.
Day 2: Met Mr. Barrow at the White House for a tour. We were amazed that he spent even more time with us. He walked us into the White House and told us some great history about the house. It was extra special because Kai’s classmate Lucas and his dad were also in DC and were able to join us for the tour. After the tour, as we headed toward the Smithsonian we saw President Obama’s Motorcade. Very cool! Then we visited the Air and Space Museum, where Kai received a private, tactile tour. It was great because the docent who gave us the tour was a wealth of information. We learned way more than we would have on our own. Then we visited the National Archives where Chris and Cash were thrilled to see the Declaration of Independence, the Constitution and the Bill of Rights. Kai was not able to enjoy the archives because the lighting was so dim to protect the documents and he wasn’t allowed to use his lighted hat. But, he understood, and just hung out enjoying the AC. On our way back we swung thru the Freer Art Museum where we saw a great collection of Asian art. Then we all passed out.
Day 3: Our feet were SCREAMING so we took the Metro as many places as possible. We started at the Museum of Natural History, then we visited the American History Museum, and spent just a few minutes in the Gallery of Art on our way to meet Minority Leader Ms. Nancy Pelosi! Again, Mr. Barrow’s office set this up, and escorted us thru the Capitol. Kai was thrilled to get to ride on the private underground train in the tunnels connecting Mr. Barrow’s office to the Capitol. When we went to Ms. Pelosi’s office we were expecting a quick meet and greet and photo op but we got WAY MORE! Ms. Pelosi met us at her office door, took Kai by the hand and gave him a tour of her office. Then she sat with us and told us about the exciting RP research being done in her CA district. She asked us to keep in touch with her and said that she’d be happy to help in any way that she could. She presented both Cash and Kai with her special “Challenge Coin” — amazing keepsakes! Then, to our surprise, she invited Kai to go onto the floor of the House of Representatives. Chris, Cash and I sat along with Mr. Barrow’s staff in the balcony and watched our sweet 11-year-old Kai schmoozing with the Congressmen and women on the floor and then we were surprised to see that Ms. Pelosi allowed Kai to submit a vote on her behalf! It was like a dream. We all had tears in our eyes… Then we got an amazing private tour of the Capitol. We learned all sorts of interesting details about the Capitol, its art, its history, and its kitty cat paw prints! Then we collapsed.
It was such an inspirational trip on so many levels — just overflowing with blessings. There is no way I can do the trip justice with words, but there were a few emotional highlights:
- Per Kai’s orientation and mobility instructor’s direction, Kai used the trip as an opportunity to practice his cane usage. It turned out to be very beneficial for him because the sidewalks in DC are very uneven, switching from brick to stone to pavement. The cane really helped with his depth perception and kept him from running into curbs, cars, etc. It also really helped because a lot of the buildings were dimly lit and he has a really hard time seeing in those conditions. And, it gave him (and us) some space to move around. He doesn’t do well in crowds because of his limited peripheries. The cane really gave him the space he needed to feel safe. He didn’t have any anxiety — I believe that the cane really helped him feel more secure in new environments. Oh, and he saw at least 5 adults using the Metro with canes! He says that independent living in DC would be a cool thing!
- So much of what we see on the news leads us to think the worst about our politicians but on this trip, we definitely experienced the best. And, they had absolutely NO reason to treat us the way they did, I mean we are just a middle-class family who lives in rural Georgia (we count for exactly 2 votes).
- On the way home, just outside of DC, our car’s engine died. But, as only God could orchestrate we had just exited the freeway which was gridlocked and broke down on the same block as a repair shop, a rental car service, and a hotel! It couldn’t be fixed without at least 2 more nights in a hotel and towing and rebuilding costs so we decided to sell it on the spot and rent a car. NOT WHAT WE PLANNED. Our 10-hour drive turned into a 36-hour ordeal to get home. We always try to look for the good and remember that there is a reason for everything…so you won’t be surprised to hear that on our way home we stopped for gas in South Carolina and met a 9-year-old Georgia boy with an advanced form of RP called Leber’s Congenital Amaurosis (LCA). I mean what are the chances of that? He and his family were on their way to a surf camp for visually impaired kids. We’ve become friends and are having a great time looking at the pictures of William surfing at the camp. Who knows, maybe next year Kai and William will be there together! Amazing Grace.
NOTES from my 2020 self.
The National Archives: It seems to me that every single American should have a way to experience our National Archives. Now, I would push a bit harder to find a way for Kai to have a meaningful experience while there.
Speaker Boehner: When we visited Mr. Boehner’s office, the staff was extremely helpful and welcoming, and we were super happy to have the opportunity to meet Mr. Boehner. Back in 2014, I would never have had the guts to say this publicly, but Mr. Boehner was rude. While getting ready to take the picture, Mr. Boehner reached over and lifted the bill of Kai’s tan, lighted, ball cap and said, “When I was a young man, I was taught to take my hat off when indoors.” At the time we meekly stated that he needs both his hat and glasses due to extreme light sensitivity but he seemed irritated by our perceived lack of manners. After the picture, he left. Now, in 2020, I would have used his comment as a doorway to say: “Sir, thank you for your time, but we are not here for a picture of you, we are here hoping to educate you about some of the issues that people who are blind or low vision face in the community, classroom, and workforce.” Now, I would not let his stature and demeanor stand in the way of sharing our important message. In 2020, I realize exactly how much our voices and now 4 votes do, in fact, count.
Surf Camp: Kai did attend the Indojax Surf Camp with William a couple years later and we all had an excellent time. I highly recommend keeping kids with low vision and blindness as active as possible.
Faith: Back then I truly believed that “all things happen for a reason…and God will work it all out” but what that really meant is “God will fix this.” I’ve come to realize that that that line of thinking didn’t help with acceptance. Now my faith is even deeper, but I no longer talk about God fixing or orchestrating things. Instead, I feel strongly that “it just is what it is.” I have a deep abiding faith that God is with us, but I no longer think he will “fix” things. I believe he walks with us and gives us strength in trials, but that ultimately it is up to us to step out of our comfort zones. It’s up to us to decide to accept hard diagnoses and it’s up to us to learn the hard lessons (such as braille, AT, white cane usage). I’ve experienced too many parents of blind and VI kids, and individuals who are blind and VI, who are using their faith as a shield and a crutch. Instead of thinking God will help them through this when they take a step in faith, they think that God will change it or cure it or rain down a miracle. They use that line of thinking to hide from the truth. Blindness is not “bad” or “good,” it just is what it is. It’s up to us to draw strength from our faith and move forward toward acceptance and get on with life. (Here’s a related post.)
Community: We’ve developed an amazing support system in the blind/Vi Community, but in the beginning, we felt very alone. We were making lots of noise about awareness, but we weren’t plugged into a larger community and our message was not clear. If we had this amazing opportunity to do over again, we would have arrived with a clear statement of what we needed from our congressmen and senators. We would have talked about accessibility in the classroom, the importance of braille and would have told them that we need to prepare our students for college and careers. But as I review this entry, I draw comfort in knowing that we were able to make an impact on these influential people by simply showing up and letting them interact with our son who was navigating the beginning stages of blindness.
Bottom Line: I am proud of the progress we’ve made at each step of our journey. And, I love meeting people who are navigating blindness. I whole-heartedly believe we are stronger navigating blindness together.