On Finding Love: Samantha and Nathan
When you were a teenager, did you have any hesitations or challenges in dating specifically related to having Morquio? How did you navigate these challenges?
Social gatherings in and of themselves were difficult to navigate. It was hard to go out and do things like go to the mall and go shopping with my friends, since walking more than a few hundred feet at a time would cause me pain and require me to sit and rest for a while before I could continue. This made dating difficult to even fathom for a time, because I could not go out and do a lot of things kids my age would do like mini-golf or skating – it was limited to movies, restaurants, or just hanging out at the house playing games.
I soon learned that not being able to go do all the other stuff like the other kids wasn’t really that important at the end of the day. By having dates where we would go out to eat or see movies and hang out, it allowed me to really get to know someone and see how they would interact with me in a more personal way. If we did venture out to the mall or some other outing when I would need to stop and rest, it allowed us time to sit and talk and get to know each other more. Board games and video games with my family were great times for bonding and building a relationship between my boyfriend and my family as well.
How did you and Nate meet, and what led you to begin dating?
Nate and I met the summer of freshman year in high school at a local little league baseball game. We had both volunteered to run the scoreboard during the game – I was up there for a friend’s team, and he was there for the other team that his cousin was playing on. I was also there with one of my close friends at the time as well. During the game, we all talked and got to know each other while eating fun dip from the concession stand and trying not to botch the scores, since none of us really knew the first thing about baseball.
After that, we started talking little by little and became good friends. We would hang out with friends and family, talk at school, and we messaged each other on AIM and texted a lot. I knew from day one that I wanted to date him, but he was steadfast that he only wanted to be friends. He wouldn’t date anyone anyways until he was 16, because he said, “What’s the point of going on a date if we can’t drive and are stuck with our parents the whole time?”. After he turned sixteen, I watched him go through a bad relationship, and almost giving up myself, I got into a toxic relationship as well.
After I got out of the relationship I was in, I was still trying to help him get through his. I would try and be a mediator for them and everything. Ultimately, enough was enough and they ended it. A little while after that went by, and in junior year of High School, he asked me out. Until that point, he had always told me we would never be together like that. I’ve asked him why and he has said that, until then, he had been blind to the fact that the most important quality in someone you are going to be in a relationship with is their ability to put the other person’s needs before your own. He said that what I had done by helping him get through the mess that was the past relationship to try and save it so many times is what did it for him. Essentially, by me putting my feelings on the backburner to help him try and do what he thought was going to make him happy, it just really showed him how great of a person I was and how much I really cared for him, to make that kind of self-sacrifice.
Did Morquio have an impact on your relationship while you were dating? If so, how did you navigate that as a couple?
Thankfully, Morquio did not end up having a really significant impact on our dating. Since we had been friends for so long, we had a pretty good idea of what to expect from one another, and he understood my limitations. So dating was pretty easy because the only thing that really changed is that now we went places by ourselves, held hands, and kissed.
Our families and friends were great and everyone was supportive – no one had anything negative to say.
I would say that one of the biggest challenges has been that as I have gotten older, I have become more heavily reliant on my wheelchair when we go places. This has meant good and bad things – on one hand, this means that we can go to places that we didn’t used to get to, like the mall or even places like Six Flags, and can actually enjoy ourselves. But it also means we are sometimes limited because we have found that not everywhere is handicap accessible. While going through stores at the mall, he is all the time pushing displays, or clothes racks out of the way to make room for the wheelchair to fit. Going to places like Six Flags can be challenging, because in order to get to a ride we have to go up the exit via a long series of steep ramps that barely accommodate a wheelchair’s width, while timing our ascent of each ramp with that of the passengers of a rollercoaster disembarking the ride. All of this can prove challenging at times.
When did you fall in love with each other, and how did you know you wanted to get married?
Since we were friends for so long and knew each other so well, the transition was easy. We both knew within six months of dating that we wanted to be with each other for the rest of our lives. We both wanted the same things in our lives.
Since you have been married, what challenges have you faced as a couple related to Morquio, and how do you deal with these challenges together?
Daily I struggle with the pain related to Morquio, and some days are worse than others. Thankfully my husband has been able to help me when I need it, whether it’s small things like getting something down that I can’t reach or carrying something for me or helping to lift me into the car when we need to go somewhere and pushing me in the wheelchair while we are out. At the same time, he is very supporting and tries to help me maintain my independence by getting me things to help me do things around the house more easily, like a smart thermostat so I can control the thermostat without having to go up and down stairs or cameras so I can check in on the kids when they are in the other rooms, comfortable rolling chairs so that I can do stuff in the kitchen and always have a seat close by if I need to sit, etc.
Some of the biggest challenges we have gone through have involved our children. I’m sure pregnancy is not an easy thing for most women, but, as someone with Morquio, pregnancy is very difficult especially in the mobility department. The pain associated with Morquio was amplified by the additional pressure on my hips and back. There were also additional tests and considerations the doctors were worried about, with my heart and lungs. Don’t get me wrong, I enjoyed being pregnant and love my children – at least enough to have 3 of them – but the pain was certainly a real thing.
As parents, my husband and I were very concerned with the chances of our children getting Morquio as well. We sat with the geneticists at DuPont and discussed our concerns, and my husband even had blood tests done to check on his genetics so that we could know what the odds were that our kids could get it. Ultimately, we found out that the odds were in our favor that the kids would not get it, but we still had each kid tested for it when they were young, and thankfully they are all negative for the disorder. Overall, we have been blessed to be able to handle each of these issues and concerns together and communicate very openly with each other about any concerns that we have.
What personality traits or character qualities do you each have that are important to making your relationship work?
Caring, forgiving, loving, self-sacrifice, encouraging, supporting, and good communication.
Do you have any dating or marriage advice for others related to what you’ve learned from your own journey as a couple?
Know your worth, offer praise even for the smallest accomplishment, like getting a new high score in a game, little things add up. Work through fights and try to come up with a solution – even if it isn’t the option either of you like, it may be the best for the situation. Support each other and encourage each other in their undertakings. Laugh and play games together, communicate your feelings and talk about your day.
A gallery of images of Samantha and Nathan (top left) dressed in white, (top right) at their wedding, and (bottom) posing for a holiday snapshot, and (top center) their kids.