In-Depth with Darlyn Simpson

 

Nat: Is it easy to become used to her situation and forget that she needs more attention? Or is it always with you?

Darlyn: Stephanie’s high needs have become a normal way of life for us but we certainly notice how involved her care really is when we go away on vacation or when she changes caregivers. Having to outline and explain every little detail can be overwhelming, both to us and to the person caring for her.

Nat: Moms worry. It’s what we do. But I can only imagine your worries are greater, more founded?

Darlyn: I’m always worrying. Every single day. I worry about different things than what you would expect a parent would or should have to worry about. I worry if she’ll wake up every morning. I worry if her skin seems a different shade, if her belly is distended, if her urine has a different smell or if her pupils are slightly more dilated than others in the same room. When her complete health and medical care is in your hands and you have to be her voice, you worry as a parent that you might miss something and then the self-blame and wonder sets in – if only I had noticed sooner, what if I had done this instead, why didn’t I think of that? Every single decision weighs heavy on my heart.

Nat: What does that do to you, your health, your relationships?

Darlyn: I definitely lack sleep, not because I don’t have the opportunity but because my brain just won’t shut off. Stress used to be what drove me forward in my professional career but these days the extra stress and worry fills my glass to overflowing quite quickly and I find myself having to cancel planned outings with friends or family and delegate work.

Nat: How does it affect your marriage?

Darlyn: I met my husband Vaughn when Stephanie was almost 6 years old. We’ve been married now for 5 years. In order to maintain Stephanie’s care, I’ve had to put some pretty heavy responsibility onto his shoulders, basically asking him to be my parent twin. Generally speaking, we all know that moms and dads manage daily life and parenting in different ways and “training” Vaughn to think for me as a mom, with respect to Stephanie has definitely had it’s up and downs but we are stronger now for it. Each and every day we get closer and have an incredibly strong bond, together and with Stephanie. Vaughn has been an incredible sidekick in this life and she is his biggest fan.

Nat: If it’s not too personal, is her biological father a part of her life?

Darlyn: No, he has never been in the picture. He met her a couple of times at 18 months and at 11yrs old but he didn’t think he was equipped to be as good a father to her than the people that already helped care for her. He opted out basically, and I do believe it had a lot to do with the extra dedication it takes to raise a child with special needs. I’ve always been okay with that strangely and have never asked for anything from him on Stephanie’s behalf. She has amazing people who have loved and surrounded her all her life.

Nat: Do you ever think “why me”, “why us” or wish things were different?

Darlyn: I don’t ever feel sorry for myself because we get so much positive feedback from Stephanie. It’s definitely not all roses around here but her charming personality gives us balance. I do wish things were different for her sake, so that life was easier for her. For example, she is struggling with enjoying her new school and new worker. To the point that we would remove her from school if they don’t hire a new worker. These are our every day struggles. It hurts and its very hard but when this child is yours, you really don’t have anything else to compare it to. I have only ever raised one child and this is my normal.

Nat: Tell me about how you’ve changed through this process? How are you different now as a mom of a teenage special needs child versus a toddler special needs child?

Darlyn: I used to take things too lightly, meaning I really had no concept of how much Stephanie would need a true, strong advocate in life. As she’s grown and we’ve experienced so many medical challenges, I am only now discovering my voice and the power I can put forth on Stephanie’s behalf. With her transition into the adult system looming over us, she needs our support and advocacy more than ever.

Nat: What has the journey been like?

Darlyn: Talk about living a life that is completely different than what you grew up thinking parenting was! I like to think that I was lucky to have Stephanie as an only child because I am able to love her and care for her with no other comparison as to what it’s like to parent a child without special needs. Normal to me is wiping her bottom for 17 years, normal to me is tucking in a teenager at night, normal to me is endlessly snuggling and smooching a “child” that is 5′ tall and 112 pounds.

Nat: Have there been times where people are cruel or unkind, staring, judging?

Darlyn: I can honestly say that not I nor Stephanie have ever really experienced any negative treatment because of her disabilities. Children in school were always trying to mother her and take care of her and when we did go on outings, maybe I was just so oblivious to everyone around me that I didn’t notice or chose not to notice their reactions.

Nat: What was your lowest moment?

Darlyn: To be completely vulnerable, I confess that my lowest moment in raising Stephanie is when we decided at one point to have her live in a community home instead of with us. When she was around 9 or 10, behavior issues were at an all-time high and we were exhausted and burnt out. We were informed that putting in an application to have her live in a community setting would take at least two years before there was movement, so we decided to at least put in our request, not knowing how long we could manage on our own. It was this overwhelming even before any medical issues even arose. We basically continued living our life and things actually got easier during the application wait time. A couple of years later, after she had begun to experience seizures and intracranial pressure, we received word that a space in a small home had opened up for her. We were heartbroken, especially at this time of medical need and uncertainty in her life. It was decided that we should at least give the placement a try, now that it was upon us.

Nat: How old was she?

Darlyn: She was 13. We visited her during the week and brought her home on weekends. I was barely coping with this sudden change and was told that this feeling was expected and that it would get easier over time. It got worse. I cried myself to sleep every night and I pleaded with my husband to agree that I should leave my career and stay home to raise our daughter. Of course he supported this decision and with Stephanie having only been away 8 weeks, she moved back home. This was the best decision we’ve ever made and there is nothing I wouldn’t do for this girl. It will be a long time before we could ever consider a similar life change.

Nat: You have your own, successful business now that allows you to be home with her and give back.

Darlyn: Once I decided to leave my career behind, I could afford to shift all my energy to care for Stephanie. Working and dealing with a medically unstable child was extremely difficult, especially with the weekly appointments and numerous surgeries. It was after about a year of being a stay at home mom that I was craving to be a part of the business world again. I have always been a creative person and loved to sew. AshleyGabby Designs was my solution. I researched and designed a few different products that I thought might work. In April 2013, I opened my Etsy shop and started selling children’s teepee play tents. I wanted to also dedicate my business to Stephanie and other children with life threatening conditions, so annually, I donate a portion of sale proceeds to an organization that supports children like Stephanie. I remember my husband smirking at the time, being supportive in his own way by saying that he would be very proud of me even if I only ever sold one tent. Over 2,000 sales and 3 years later, we now have a good laugh over his initial comments.

Nat: What has Stephanie taught you?

Darlyn: Stephanie has taught me so much more than I could ever teach her in her lifetime. She teaches me to have patience, organization, tolerance, acceptance. She reminds me to enjoy the little things in life, to laugh at nothing, to just sit still for a moment and love unconditionally. She is so funny and it’s so refreshing to be around her. I often say that I’m here so that I can take care of her body and she’s here to take care of my soul. She lifts me in a way that I can’t imagine I would’ve experienced otherwise in life.

Nat: What are your hopes for her? For the world she lives in?

Darlyn: My hope for her is to achieve better health. To have a quality of life that isn’t defined by seizures and medications and proximity to hospitals. I’ve been asked a number of times that if I had one wish, what it would be. I expect that most people assume I would wish for Stephanie to be “normal”, but I wouldn’t. She wouldn’t be Stephanie without her incredible resilience, her comedic attitude and her amazing, wrap around your body, deep hugs. I only ever wish for her health or at the very least some reprieve every once in a while so she can come up for air and just be a kid. As for the world she lives in, she needs only opportunity. If the world can provide kids like her, kids with special needs, the opportunity, they will show us what is really possible.

Nat: What advice do you have for parents of other special needs children?

Darlyn: I think we’ve been through a lot as a family and I can probably give advice until the cows come home but what will be really important for new parents of special needs children to truly understand is that they will experience an ebb and flow. They will face incredibly hard times, there will be challenging moments, there can be endless decisions to make but there will always, always, always be something in between that makes every single struggle worth it. A laugh, a new word, a dance, a “be still my mommy heart” moment that refills your cup when you are empty. Wait for those moments, hang on to those moments, they will get you through to the next one.

Nat: For the rest of us? What do we need to understand? Be more compassionate about?

Darlyn: I mentioned this on my Instagram recently, I had posted a picture of Stephanie with bruises on both her eyes from a seizure injury. I wanted people to really see what life is like for Stephanie (and us as parents) when I talk about seizures or medications or doctor’s appointments. The reality, not the filtered version of our life. I ask simply that when you encounter a child living with any condition, when you hear about a fundraiser or see a post come across your social media about awareness, even if you are not able to help or donate, please encourage and show some love. It takes only a moment and it honestly, truly goes a long way in lifting a spirit. Surprisingly, maybe even your own.