This is an interview with Suzy Clement, a mother of two special needs children. Suzy is a photographer / artist and is married to Lenny Gonzalez, a videographer and musician. Their daughter Mielle is 14 years old and has Juvenile Myositis, a rare, autoimmune disease. She is still in treatment and is functioning well, given her challenges. Lucien is 9 years old and diagnosed with a form of autism. He is mostly non-verbal and requires help with all his daily needs.
You have two very different children, each with their own special needs. Your daughter has a rare, autoimmune disease, Juvenile Myositis, and your son is developmentally different. These are two huge challenges; can you describe what you and your husband have done over the years to cope with their needs?
For my daughter, diagnosed at age 5, the first challenge was even finding a doctor who could effectively treat her medical condition. Thankfully, in my research I found the Cure JM Foundation and learned that her first doctor was not treating her illness appropriately, so we had to find another. Then, it was managing the many doctor appointments and all the medications, and seemingly endless insurance issues.
For a couple of years, we flew to Chicago every few months to see one of the top specialists in the country. We learned how to hold down a kicking, screaming child for a blood draw, and how to give injections at home. We took her to a child psychologist to help her with the emotional aspects of her illness, as well as the terrible steroid-rage side effects from the high doses of prednisone. And, we started raising money to fund research for a cure.
My son displayed developmental delays at nine months old, which ultimately developed into severe autism. One of the first things we had to do for him was learn about the various agencies and resources available to us. The state offers services, but it is quite a job to figure out what they are and how to access them. There are long waits for things like assessments and therapy, so we became squeaky wheels to get him in as soon as possible.
He had seemingly endless appointments for physical, speech and occupational therapies as well as a special group preschool program several times a week. He regularly saw a developmental pediatrician and a neurologist, and had many tests: MRI’s, EEG’s, chromosome testing, etc. They revealed nothing definitive. We tried to get his case in front of as many doctors, researchers and specialists as possible, hoping that someone would have seen something similar and shed some light on what we were dealing with. We participated in studies and sent his records to a neurologist nationally renowned for his knowledge on brain malformations, but nobody could even agree about what they saw on his scans. So, with nothing to point us in a particular direction for treatment, over the years we tried many, many of the various medications, diets, therapies and modalities that have been anecdotally effective with autism. None of them dramatically changed things.
When he turned three, we had our first Individual Education Program meeting with the school district and he began at an autism-specific preschool. Since that time, we have had several serious issues with the school district - incompetent and/or unqualified teachers, inappropriate and even dangerous physical environments in the classrooms, as well as lack of adequate facilities (such as accessible bathrooms) to meet the students’ needs. Thus, we also became advocates on that front.
Theodore Roethke has a poem called The Waking and a line from that poem is, “This shaking keeps me steady.” What keeps you steady? How do you two cope with your own needs?
Well, we weren’t steady at all in the first couple years! Everything hit us at once. There was a lot of financial stress as we dealt with medical and therapy expenses, and tried to keep our businesses going. The sadness was overwhelming at times, and we both struggled with depression.
Over time, we gradually regained our balance. For me, one big development took place about a year after our daughter was diagnosed. I had become more involved with Cure JM, and I was invited to run a half marathon with the organization to raise money for research. I accepted, and it ended up changing my life in a myriad of ways! First of all, running has become an incredibly important coping tool for me, both physically and emotionally. Friendships were deepened when people stepped up to run along with me. The fundraising has had a huge impact, as well, because it gives me a sense of power over the disease, however slight. It proves that JM has not broken me. And when family and friends support our daughter with a donation, it encourages me to keep going.
I have a strong partnership with my husband, and that also helps keep me steady. In the beginning, we had all we could do to just hang on. In making sure the kids got what they needed, we neglected nurturing either ourselves our own relationship. As time passed and things slowly settled down, we found that we really had to consciously reconnect with one another. The experiences with our kids taught us that to glean strength from our marriage, we need to be able to truly trust, to allow ourselves to be completely vulnerable with one another.
We both need to be generous in giving the other space for the things that nourish our souls, because that’s what helps us make it through the hard days. And we need to be gentle and forgiving when we forget things or make mistakes, because even though things aren’t as intense as they used to be, they are still pretty intense and it’s just damned hard to hold it all together sometimes!
More recently, because our schedules have eased up somewhat, I’ve been able to do more self care than I have in years. I began singing in a choir. I do Pilates and I read books (but nothing too heavy!). I make sure that I don’t become isolated from friends, which is really easy to do. At various times I have participated in therapy and support groups. Lastly, the friendships I’ve formed with other JM and special needs parents are incredibly helpful and supportive.
What have been the biggest challenges?
Probably the most obvious is just dealing with the sustained overwhelm of such tremendous demands on our time, energy and financial resources over so many years.
Honestly, though, I find the biggest challenge is within me. Because from the first moment, with both of my kids, I was certain that if only I would make all the right decisions, do the right things, fight tirelessly and selflessly, then I could fix both of these situations. Then, and only then, would things would be ok.
This is nonsense, of course. The fact is that in both situations, I have a very limited amount of real power over what is going to happen. Yes, I can fight to get them the best doctors, treatments, and services to make things better for them, and you can believe that I will never stop doing that. But ultimately, I cannot control what their bodies do. To delude myself into thinking that I can only leads to a constant sense of failure, no matter how much good I accomplish for them.
And if I believe that things will be ok only after the kids are “fixed”, then things will never, ever actually be ok, because it’s simply not possible to achieve. So at the same time that I fight fiercely for my kids’ benefit, I also do my best to forgive myself, be gracious and grateful, and find joy in the midst of it all.
What have been the most surprising outcomes or experiences of parenting your children?
I think the most surprising thing is the degree to which these experiences have changed my own perspective. I now have a stronger sense of what I value and what is worth fighting for, and they are not all the same things as before.
You are both artists, how have your children changed what you do as artists, if at all?
I have been a photographer for nearly 20 years, and I have always been really interested in capturing natural, authentic moments of beauty. I’ve primarily done this at weddings and other larger-than-life events.
Now, I find myself still fascinated with this idea of finding beauty, but in the ordinary moments of every day, not just during extraordinary occasions. These ordinary moments are the ones that make up the hours and the days that become our lives. I ask myself: how can I be sure to recognize and appreciate the beauty that is there, however hidden or subtle? How do I manage to choose joy every single day?
Then, to take it further - is it possible to not just survive, but find beauty even in the midst of incredibly difficult situations? How? This is what I’m most interested in exploring with my photography these days.
You mention that you are most interested in capturing the everyday beauty in your photography; do you have any photos that you can show as an example?
There is always something lovely to be found in nature, no matter how simple or humble. One of my favorite things to do is just walk around my neighborhood looking for beautiful plants and flowers, especially those growing wild. This one was in a little patch in the unkempt front yard of an abandoned house. From a distance, the main impact of the scene was one of decay and neglect. But delving a little deeper yielded this beauty.
And here are a couple from a recent "day in the life" portrait session. It's a different kind of portrait photography in that it's not about dressing everyone up and always looking happy for the camera. Rather, it is about seeing and capturing the feeling of life the way it is right now - because, ultimately, "right now" is all we truly have - and it is fleeting! However mundane, messy or complicated "right now" may be, I'd like to believe that there are always moments of beauty, love, and joy to be found and appreciated.
I love the questions you are asking yourself at the end here, do you have thoughts about “choosing joy” on a daily basis? Can you give me an example of when you didn’t choose joy and when you did?
Sure! Sometimes it is as simple as really enjoying a bite of nice food, playing with the cat, savoring a few stolen moments with a good book, or stepping outside to appreciate nature for a moment - be it the warmth of the sun on my skin, a refreshing breeze, or some rejuvenating rain (it helps that we generally have great weather where I live!).
Other times, it has to do with figuratively stepping outside of myself, shifting my perspective, and reframing the story I tell myself about whatever is happening. As an example, for the past several months my daughter has needed regular treatments of 14+ hour intravenous infusions that come with unpleasant side effects lasting several more days. I hate it. It makes me so angry and sad that she has to go through all of this. But at the same time, I have to recognize that we have a lot for which to be grateful... like the fact that we have access to doctors that actually have experience treating her illness; that I have a capable husband who can care for our son while I'm gone; that my work situation is flexible and allows me to be available for these appointments; and even that we have a car that will get us there and back.
Despite the stress of the situation, I'll most likely share a nice moment or two of connection with my girl over the course of the experience, talking in the car or laughing at a movie together in the hospital. There has to be SOME small bit of goodness to be found in there. If nothing else, at least they feed us at the hospital and for once, I don't have to cook dinner!
I wouldn't choose this path and I would do just about anything to spare my daughter from having to endure these things, but this is simply what we have before us. All we can do is keep moving forward with as much grace and joy as we can muster. I won't lie and say that I never have sad or bitter moments, never feel sorry for myself, never ask "why BOTH kids?" or "why ME?"... but I try to just accept and experience those feelings and then, as much as possible, release them, because ultimately they do not allow me to move forward.