Sasha Hill is the voice of an incredible family, the Hills, as they navigate through the tough trials, heartbreaking loses and the triumphant revelations that Huntington’s disease exposes. Sasha’s father is in the intermediate stages of the disease, which has no cure. She is a fierce advocate in the search for a cure for the inherited neurological disease that can be described as a combination of ALS, Alzheimer’s and schizophrenia. Sasha has a 50% chance of inheriting the disease, but is making the choice to live in the present. She is the mother of one beautiful little girl (who is also at risk for the disease), the partner of an incredible man, and a freelance writer/speaker. 

You can follow Sasha’s heartfelt blog as she nakedly shares her fears, memories and quest for the “purpose of it all.” Sasha can also be found at @thehillsinhd on Twitter.

How did you meet, and how did you know that this relationship was special?

I knew Sonny was special for me, immediately.

Sasha & Sonny

Sonny and I met when the timing was anything but perfect. I was married to another person, and I had not been happy in that relationship for a number of years. I had tried, in my own way, to repair the relationship but there was a sincere lack of communication and passion between us and the relationship suffered because of that. After years of feeling lost, isolated and unwanted, I was filled with resentment and anger when I met Sonny.

I had just been transferred into a new role at work, and switched work locations. Sonny was the first person I met, and immediately, we both felt more than butterflies. There was a lightness about Sonny that I was attracted to. He seemed to sparkle, and I felt alive for the first time in years! It was far more than physical (although that was intense as well); it was as though a force had put this man in front of me to show me what I needed to see (even though I was not ready). Sonny was everything (and more) that I had been searching for. He was confident, supportive, kind, and honest. Sonny is a very grateful person, and has showed me the power of appreciation.

There was undeniable connection between us and we both knew we would never have a love like this again. The chemistry was incredible, and the more time we spent together, the more we appreciated one another, and realized that we were meant to be together despite the situation. Our friendship quickly developed into a romantic connection. The timing was not right, and Sonny assured me he would wait for me. We made some incredible life choices to be together, and have been thankful each day since.

Do you feel that you're connected on a soul level?

Yes, I absolutely do!

This is a particularly tough feeling to describe. I would describe it simply as "complete," a genuine feeling of whole-ness. I feel like we are both more of ourselves since being together. In all senses, we brought each other to life.

What do you do to ensure that you continue to experience your special connection?

We do not try to change each other, ever. We do not diminish each other, ever.

Instead, we focus on supporting one another and bringing out the best in the other partner. When we appreciate something the other has done, we say it! When we are happy, we say it! We celebrate our love passionately and romantically, by making our connection a priority. We make time for love making, cuddling, talking, dating, and participating in activities together. We openly share our fears, anxieties, hopes, and interests. We kiss each and every morning, and again every night. We talk things out, and make sure the other person can "hear" us. We also practice "unplugging" regularly, where we focus in on each other, and our family.

We try things! Whether it's food, sports, activities, sexual positions, readings, if one of us is interested in something the other person tries it too. We share what we're "into," and it helps us keep connected with one another. We also have many things in common. We continue to expose one another to our own development, and change and grow together.

We pray. As a family, we say “grace” at dinner, but often instead of a formal prayer, we take a moment and around the table each of us says what we are thankful for, and what is great about our lives. Focusing on the positive keeps us connected with mutual joy. We relish in that joy.

But, aside from what we "do" to keep that connection, there is an underlying current that is shared between us. It's a natural chemistry that has never needed force or effort. We genuinely want to be together and to be happy, and that desire fuels us to be the best person we can be for the other. I always bring the best of me to Sonny, and he does the same.

Do you feel that you have a shared purpose for being together?

I believe our purpose is to BE together. We have both grown in so many ways as individuals since finding one another's love. Our careers have flourished, our personal relationships are healed, we are at peace with ourselves, and with our family. Our purpose is to shed light on each other, and be the beacon that the other needs. Our purpose is to LOVE one another, plain and simple.

What challenge have you faced together?

Sasha & Sonny

The biggest challenge we have faced together, and we continue to face, is the possibility of Huntington's disease.

My father was diagnosed with Huntington's, which is a neurological inherited disease, and as such I am at a 50/50 chance of also developing the disease. There have been many sleepless nights, many tears shed, many questions asked. There have been moments when I would beg Sonny to leave because I felt he deserved "more" than this. We both know he will not leave. This is part of our journey, and we have faced it together and will continue to.

Sonny educates himself on what the disease is, and I support his journey through understanding and releasing any expectations I may have of him, how he will act, what he “should” say. We regularly do "emotional temperature" checks to see where we are both at, and most of all we support each other in moments of doubt by emphasizing the importance of NOW. We communicate. We engage each other in what our fears are. We get vulnerable.

What are you learning in your relationship right now?

I am learning about happiness. I am learning that it's OK to feel happy. That when you allow yourself to focus on what is wonderful and loving in your life, you attract more of it. I am learning how to be happy in small moments, gestures, and things that bring me pleasure. I am learning that happiness is my heart's way of saying "You're on the right path" and to allow that feeling to spread through me. I am learning to live in the present, and to appreciate that moment as it is.

How do you keep your sexual connection strong?

We make time, and we take our time. Sonny and I both enjoy physical contact, and not just in the bedroom! We make sure that our intimacy lasts all day, through sexy messages/notes, inviting affection, and soft kind words. We make a point to tell one another we are wanted, valued and special. Life can be hectic sometimes when you both work, and have children. But, we place intimacy at the top of our priorities, because for us, it is how we show each other love. We kiss often, and passionately.

What advice can you offer other couples to help them keep their connection strong?

The best advice I can give anyone is to appreciate who your partner is and where your relationship is, NOW. Instead of focusing on what your partner is NOT doing, focus, instead, on what you love about them. The more love you focus on, the more love you will receive (and give). 

Stay intimate. Embrace one another, kiss, hold hands, hug, whisper in bed together, send naughty notes – do whatever you need to do, but make sure being connected intimately is valued in your relationship.

What advice can you offer single people who desire a relationship like yours?

Find yourself and love that person.

For years, I tried to be what I thought my partners wanted. I tried to find my self-worth in their opinions of me. If they were mad at me, I was mad at me too. If they felt I was bad or wrong, so did I. It was a life filled with guilt, poor choices, and negative thoughts. The worse I felt about myself, the more negativity I would attract.

By taking the time to learn who I really was, deep in my soul, I have found a satisfaction and security that cannot be waivered by a person outside of myself. I have made mistakes, and some are dark. But, learning to love myself (darkness and all) has meant that when Sonny and I bring our love together we already know our own value. It means we can share the light AND the dark without shame. By learning to love myself, as I am, I have learned to love him as he is.

Is there anything else special about your relationship that you'd like to share with us?

We laugh. A lot.

Sasha & Sonny

Sasha, we're so grateful for your willingness to share your love with us in this way. What a beautiful love story. ~Mali & Joe, authors of The Soulmate Experience: A Practical Guide to Creating Extraordinary Relationships52 Prescriptions for Happiness, and the upcoming book The Soulmate Lover, and creators of Mantras for Making Love