Can you tell us about your condition?
In December of 2010, Sofia had just turned 9 years old, and a couple of her school teachers mentioned that she was not able to see the board. We took Sofia to our local eye doctor and she couldn’t tell what the problem was. They sent us to a doctor in Spokane in February of 2011 to further the investigation, and then in March, we were sent to the Casey Eye Institute in Portland. From just February to March, Sofia went from just wearing glasses to legally blind. In just a month’s time, Sofia had lost a lot of sight and the doctors were concerned so they investigated further.
In May of 2011, on Mother’s Day weekend, the blood and genetic testing came back inconclusive, so they sent us back to Portland again.
On June 3, 2011, the diagnosis confirmed that Sofia had a rare, terminal disease, Juvenile Batten Disease. The news was absolutely crushing.
I remember receiving the news on a Friday afternoon and it’s a day I will never forget. I was instructed by the doctor not to get online and drive myself crazy, but of course, I went on the internet looking for resources – but I really think I was just looking for hope. We ended up going to an annual conference hosted by the Batten Disease Support and Research Association Conference, which our church helped us get to, as it was only a month after the official diagnosis.
What are your biggest challenges?
This disease is gut-wrenching in so many ways. Each day brings a new grief. I catch myself scrolling through social media and everyone Sofia’s age (age 16) is getting their driver’s license, or I see homecoming pictures, or kids her age getting their first job. For Sofia, she’s slowly moving backwards. My reality consists of doctor’s appointments, changing, and feeding tubes.
With that being said, birthdays are so hard because you want them to be joyful, but for us, it’s just another year looming closer to the research and experience that shows her short life expectancy. It’s very bittersweet.
But, we try to stay positive all the time. We don’t have a fancy lifestyle, but Sofia loves Disneyland, the beach, horseback riding, and girl scouts, so we try to go and do those things when we can. I know through the challenges I can always fall back in confidence of Sofia’s faith. We are so thankful that she’s had a strong faith in her early years because while her dementia increases, she still connects with her faith and can say the Lord’s Prayer. She can still understand the stories from the Children’s Bible that we read and know that it’s still a big part of her life. I love that it’s something that’s stuck with her because a lot of memories are gone, but her faith is something that’s really resonated with her.
What were the major keys in helping you process this news and move forward?
Well, looking back now it is easy to see how God was with us and how we weren’t alone, but sometimes when you’re alone and walking in those dark days, it’s definitely hard to see it.
Something that really helped us early on, and still does, was meeting the Weaver family. We met them at the conference and they told us that they had a son who was a doctor in Sunnyside (only about 30 minutes from our hometown, Prosser). We got connected with Dr. Derek Weaver and we are so lucky to have him because it turns out he grew up with two brothers that had Batten Disease, so he can easily relate to me, knowing the struggles his parents faced, and he can relate to my second daughter Izzy (13 years old) as they both are siblings of the disease.
And of course, I don’t know what I would do without my faith and my friends. There are a lot of nights in hospital rooms or our bedroom that are lonely and we try to use that as prayer time because we know that God is there and has a plan in all of this. I have learned through faith that Sofia’s journey has a meaning and I may not know or fully understand the big picture, but I know who holds the future and that’s what I have to cling to. I’m not always sure the purpose but I know that there is one.
How do you overcome your daily fears?
Sofia is definitely very happy, and that’s helpful for all of us. But now and then she gets a little down and will say that she wishes she could see and read. I always tell her that “if God didn’t’ give us this disease, then you wouldn’t know that people need things. You wouldn’t care that the sidewalk wasn’t accessible and bumpy and that a wheelchair couldn’t go on it. But you know now and you talked to the mayor and the mayor fixed the sidewalk because you brought it to his attention. See how God works that through?” I always try to make a connection with her to help her see that there is a plan and God has a purpose for her. He’s using her and working through her, no doubt.
It is like a graph though, things are always kind of changing and we just get used to it and adjust and then we take a next step in the progression of the disease. Fears are always fluctuating, but we change and adjust and our focus from the beginning has been to make the most of the life that Sofia does have. We are always trying new things because we don’t want to live in fear and sit home because she might have a seizure somewhere, or have fear of what that would look like, and luckily our friends and community members have been really supportive.
Sitting at home in fear isn’t living. We just want to go out and live.
What is Sofia doing now?
Sofia has always been a girl who loves to dress up. Many times I would take her with me to the grocery store and she would be dressed as Cinderella or Pocahontas or Belle, and people would smile at us and I would just think “Oh my gosh, let’s just get through the grocery store!” But she’s always loved sparkles and fancy dresses, so when she was about 12, she wanted to start getting into pageants. She participated in a great organization called Miss Amazing for girls with a disability, but there was never one in Washington or Oregon close by. She participated in a few “mainstream” pageants but it was more challenging for us to maneuver than it was fun.
Sofia asked me one day “Why don’t we make a pageant, Mama?” And that was the beginning of it! Sofia really is the brain behind it all. She decides if the girls have trophies and crowns and she usually plans it all out. The pageant is called Miss Shining Star Pageant and we now operate as a 501c3. The first year had 16 girls, and the next year we had about 32, then 40, and then last year we had 44, so 2019 will be our 5th pageant in Prosser!
I was nervous about this at first because sometimes when you say the word “pageant” there are negative connotations that come up in people’s minds and I just wanted it to be a good day for the girls and special day for the families. But it has all been great. Sofia is very proud of the fact that people and come and she enjoys being able to talk with friends every year. She definitely just wants it to be a positive day for all the girls and so we work hard to make it special and she’s proud of the fact that it’s something she created and so many girls are getting joy out of it.
Sometime during the second pageant, Sofia was airlifted to Portland, and in the chaos, we weren’t thinking about clothing, so by the time she got out of the hospital, she didn’t have a change of clothes to leave in. The next year at the pageant, Sofia asked the girls to bring pajamas to donate to the hospitals so that girls wouldn’t get stuck without clothes. So we have been doing that each year! Last year the girls collected over 1,400 pajamas and it’s been a great way for the girls to practice their social skills and feel like they’re contributing. It’s just another positive for them to have in their lives. Sofia is very proud of the way she is helping; she just loves it.
What’s your advice to someone in the throes of adversity or facing hardship?
There is no doubt we are going to face struggles, whatever it may be, a fatal diagnosis, a cancer scare, a death in the family. There’s no doubt we are going to have trials and tribulations, and we often ask why God gives us these, but what a great opportunity to lean into the Father! If we don’t have struggles then why would we need Him? What a great way to step out into our faith and to just say “yes, Father, I know it’s dark right now, I know I’m in a low place, but I know that I need you and you will be there.” For me, it’s such a comfort to know that He’s going to be there. He doesn’t guarantee that it’s going to be easy, but everything has always been provided for me, by Him; a friend will come by or say something I needed to hear, or an insurance check will come as a rebate or something, but he puts these things in our lives and it’s almost like a game… like “oh, okay Lord, I see you and I see what you did there.”
A lot of people become a Christian thinking it’s going to be footloose and fancy, but if everything is always even keel, then how do you appreciate the rainbows? There’s nothing novel if it’s all mundane. God is going to be there on the mountain top and in the valley. Our job is to keep walking consistently in faith, knowing that He’s right there.
I feel pretty blessed to have a front seat right next to Sofia in her journey through life. I don’t know how her story will touch people or how being a part of the pageant will touch someone, and I may never, but I do really enjoy seeing life through her eyes and all the joy that she has inside her.
You just can’t sit in fear when you have your faith and know that this is just a small snippet of life. I don’t feel like I have much wisdom because most parents are raising their teens to be an adult in an adult world, and truly I’m just raising my daughter to die. It’s so easy to get caught in the darkness of that, but when that happens, I know 100% where she is going and I know she will be able to read and run and remember and not have seizures ravage her body. I think giving her the strong foundation in Christ is the best gift I could have given her, so the rest is up to him.
With one foot in front of the other, I do what I have to do. I know that God is the driver, and we’re just in the back seat with the snacks.