This week, we’re honored to feature Heather Wright, a CPA in West Seattle who was nominated by her sister Karin. Heather’s husband, Rob, was diagnosed with multiple sclerosis in 2011, and eventually had to stop working due to disability in 2015. The couple is raising two teenagers, Nate, 17, and Lauren, 15, who they adopted from Russia as small children.
Karin had this to say about her sister: “This woman deserves credit – like most moms, she is amazing. But my sister’s children have early trauma that she didn’t cause, and she has worked so hard to heal on top of the normal daily job of being a good mom. With the added trauma of her husband living with a terminal and debilitating illness, the stress is unbelievable at times and I continue to be amazed at her perseverance and integrity.”
We caught up with Heather to talk about her adoptive-family trip to Russia, what she wishes more people understood about MS, and how we can all help lighten the load.
Who lives in your house?
Nate is a junior at Cleveland STEM High School, and plays golf for his high school team, and helped found the school’s Social Justice club last year. He loves math and reading, and hopes to become a computer scientist, and then a social justice attorney some day. We adopted him in 2003, at age 1 from Russia (Novosibirsk in Siberia). At home we still call him by this Russian nickname, “Sasha” (though he gives us the death glare if we slip and use that name in public).
Lauren is a freshman at West Seattle High School. She plays volleyball and basketball for her school, and loves to snow ski, water ski, run, and play baseball. But basketball is her passion in life, and she just made the varsity basketball team this year. She also loves to read and write. She hopes to play basketball in college and the WNBA, and then hopes to be a writer someday. She is Nathan’s full biological sister, and when Nathan was 2 1/2 years old, we found out she had been born, and was available for adoption. Russian adoptions then shut down and we weren’t able to adopt her until she was almost 14 months old. We still call her by her Russian nickname at home, “Lyuba.”
Bruno is my husband Rob’s support dog, and our third child when he’s not helping Rob. He has made a huge difference in Rob’s life, and as a result, all our lives; his presence has had a calming effect on Rob, and noticeably decreased his tremors.
Hank and Piper are our rescue cats who aren’t happy to have a dog in the house.
Where might Seattle parents run into your family around town?
You’ll often find us at the gym cheering Lauren and her team at her volleyball and basketball games. We are always walking Bruno in the neighborhood, often swinging by the West Seattle library, Met Market or PCC on our walks. The kids and I love to watch movies at our neighborhood Admiral Theater. And it’s not uncommon to see the kids and me (and sometimes Rob) at our favorite neighborhood restaurants including Pizzeria 22, Mioposto, La Rustica and Menchies.
Your family cultural trip to Russia sounds like a meaningful and challenging experience.
Our trip was one of the most amazing experiences we’ve ever had. We traveled with a group of other American families who had adopted from Russia. The organization that runs these adoptive family trips is called The Ties Program. It’s an organization dedicated to helping internationally adopted children and their families travel back to the kids’ country of birth, learn about their birth country history and culture, travel to their cities of birth, and if possible, coordinate meeting birth families.
We traveled with 13 other families. We had guides, translators and wonderful coordinators who managed all the details, and helped us all emotionally process this momentous trip. We started in Moscow, touring the famous sites of the city, while learning about its history and culture, and sampling the local cuisine. Then all the families split up and traveled to the regions where their children were born. Every family on our tour was able to meet someone from their birth family, whether an aunt, a grandparent, a sibling, or birth parents.
We traveled to our kids’ birth region in Novosibirsk (central Siberia), and with the help of our fantastic driver and translator, we were able to visit the orphanage where the kids spent much of the first year of their lives. We had a long meeting with the head doctor who still works there, and she was very kind and tried to answer all our questions. We visited the maternity home where the kids were born. And we visited daily for three days our kids’ birth mother and four sisters at their home in the Siberian countryside.
It was a very emotional journey. I don’t want to go into details on the kids’ reunion with their birth family; our kids have their own stories to tell, and they’re not quite ready to share those stories. I will say there was a plethora of complicated emotions on both sides, but there were lots of big hugs, joy and tears. And most importantly, our kids felt a lot of love, and finally know where they come from.
After our regional trips, most families regrouped in Saint Petersburg, again touring the famous sites and learning the history and culture. But the best part of this segment was spending time with the other families, sharing our experiences, and processing everything together with our helpful and compassionate coordinators. In some respects this was the most important part of the trip. The kids had all gone through one of the most emotional experiences of their lives, that not many other people can relate to. They really bonded and relied on each other. And for the parents, we really felt like we’d found “our people.” Not many others can relate to the specific challenges, joys, and traumas we have in common not only from our trip, but through our experience of raising children who had endured sometimes unbelievable trauma in their early childhood.
We all look forward to a big reunion next summer in the States.
What do you think people misunderstand about multiple sclerosis? What kind of community support is most helpful to you?
MS impacts everyone differently, and it’s often not obvious when someone has a disability from MS – an invisible disability. Some patients are affected only physically intermittently, others only cognitively, and others with some combination of both, with varying degrees of severity and frequency. And you never know what the future holds, and when or how the disease will progress.
Rob’s a good example of someone with an invisible disability – if you don’t know him, he looks completely normal and you’d never know. But what you don’t see is how horrible he feels almost all the time. Most of us wake up in the morning with a “full tank of gas,” ready for the day. But Rob wakes up on “empty” no matter how much sleep he gets, and he has very little energy to use during the day; his fatigue is chronic and debilitating, and it’s very common for him to need to sleep much of the day.
He also has cognitive issues, and can no longer multitask, and can get confused very easily, especially if there are multiple stimuli. Several years ago he started having more physical symptoms, including tremors and pain, which tend to come on with stress. But stress to him is not what most of us think of as stress. … Simple activities like going out to dinner at a restaurant can cause extreme stress to his body, and bring on tremors. Even enjoyable things like hanging out with friends or traveling can prompt tremors and physical pain, so our social life as a couple and as a family has really decreased in the last few years. And when we travel, he’s often alone back at the hotel while I head out with the kids. He had to stay in the hotel room for many of the tours on our Russia trip, which was heartbreaking to all of us.
As for community support, my hope is that more people will become knowledgeable and empathetic about invisible disabilities. Rob has a disabled parking permit on his car’s license plate, but even so, there have been multiple times strangers have yelled at him (even in front of our kids) for parking in a disabled parking spot, telling him he doesn’t need it. Almost as bad are the disapproving stares and judgmental looks he often receives for parking in a disabled spot even with his disabled parking permit. If someone has a disabled parking permit, it is because their doctor feels it will help improve the quality of their life. It’s not because they’re taking advantage of the system.
And if you don’t have a disabled parking permit, please never ever park in a disabled parking spot, even for just a minute. It happens a lot, and it makes life even more difficult for people living with disabilities.
And lastly, for community support, I hope that the community would understand how isolating a disease like MS can be when the symptoms are chronic and painful. It means the world to Rob when friends and acquaintances send him an email or leave him a phone message to say “hi.” Many feel uncomfortable about the situation, and have stopped contacting him directly, or may ask about him when they talk to me. But it’s so special to him when he hears directly from them!
How do you get through difficult parenting moments?
We have some unique challenges with parenting our kids. Both endured unimaginable trauma the first year of their lives, some of which we still don’t understand.
They can’t remember what happened to them, so certain triggers can bring back very strong feelings that are difficult to process. Our kids had very different early-life experiences, whether it was severe neglect for months in a hospital, malnourishment, deep mysterious head scars, and so on. One of our kids suffers from PTSD, and turns to “fight” mode when distressed, and the other turns inward and to “flight” mode when distressed. That, coupled with Rob’s MS, and the exacerbation of his symptoms when stressed, has resulted in some very challenging parenting moments, sometimes on my own. And it’s also resulted in some very challenging moments advocating for our kids when dealing with their schools.
I honestly don’t know how I’ve gotten through some of our most challenging parenting moments. But I give huge thanks and credit to the various therapists and psychiatrists we’ve worked with through the years, sometimes using trial and error to figure out what worked best to help us parent our kids, while also helping our kids learn how to deal with their traumas. We’ve made many mistakes along the way, but I also feel we’ve made huge strides. Trauma aside, we’ve got teenagers now, which brings about unique challenges in and of itself.
My sister, Karin, has also been a huge help. She’s very involved in our lives, and has been very helpful in providing advice, support and even just an ear to let me decompress and vent when I needed to.
And recharging my batteries has been a must. I don’t get enough quality “me time,” so I’ve found taking girls trips with my friends has been an invaluable way for me to rest, have fun, and reconnect, allowing me to come back a better and more patient parent.
Is there anything the Seattle’s Child community can do to help lighten your load?
I would love help finding a way to get in contact with other families who are dealing with a parent who has a chronic illness. Having the support of other parents, and other children in a similar situation would be invaluable. I searched and searched for such a support group, but found only a support group in Tacoma that dealt with any family member that was ill. The kids and I attended several times, but found that we didn’t have all that much in common with many of the families that were most often dealing with a sick child.
Also, one of our kids needs a new therapist. It’s so hard to find an experienced therapist in West Seattle, who has expertise with our specific issues, who is a good fit with my child, and who is taking new patients. I would love some help finding someone.
Do you know where Heather and her family can find support? Email us and we’ll make sure Heather gets your message.
