Photo by Rachel Hadiashar
I met Steph sophmore year. 1996 at Ithaca College. Steph is just one of those people you love from the moment you meet her. Me, Steph, and the girls on our floor, we laughed. A lot. Ate dinner together most nights. Played in the beauty of Ithaca, NY. Became grown-ups in each other's presence. And then we went our separate ways.
Until Facebook brought us back together a few years ago. When I caught back up with Steph, she was married. And then she was pregnant. And in a Facebook blink of an eye, she was announcing the birth of her sweet baby boy, Nicholas.
Steph shared the story of Nicholas, learning that her newborn had Down's syndrome, and calling on her community for support, good thoughts, and prayers as in her words, "we navigate down a road that we have never traveled before." To share her story, Steph and I connected 20 years after we first met over the phone, just like it was yesterday.
Megan: "What do you love about your family?"
Steph: I just love the fact that we are a unit, the three of us. All the decisions we make in our lives are focused around what is best for our little unit. My sister-in-law gave us that advice long ago: you have to do what is best for you & Nick. Other things will have to wait, you have to put your own little family first.
We truly enjoy each other's company. We love to take walks as a family. I love that we can all hang out together and we enjoy it. Doesn't have to be anything planned, or a vacation. It can be as simple as going to a diner for pancakes on Sunday morning. Or Nick making pancakes at home.
Nick and I adore our sweet son. He brings us more joy than we could ever ask for. Nicholas has this little laugh that just makes you laugh along with him for no reason, infectious. He also gives the best hugs; He wraps his arms around your neck and rests his head on your shoulder kinda hugs. Then you know all is right in the world.
It sometimes can take Nicholas longer to learn a skill or to figure out just how to do something. But when he finally "gets it" that feeling of pride is awesome.
We get so much enjoyment out of being parents. But after Nicholas’ bedtime, we definitely have our time together. So often parents either complain about being parents, or on the opposite end of the spectrum, they feel guilty if they take grown-up time to be together.
Megan: And that truly is the best gift parents can give their children. For the couple's love to be strong; for them to enjoy time with one another.
Steph: It started so early on in our relationship. We do a ton of communication, but we don’t over-analyze. Like when Nicholas wasn’t walking yet. We problem-solved, got everything out on the table, and then we decided what we were going to do.
I love my husband more as time progresses.
We don’t hide anything from each other.
I used to be more of the one who was so open, or so quick to express how was feeling about things. He was more of the listener.
But now that Nicholas is getting older, he is experiencing a lot of significant delays that begin to weigh on you as a parents. Like wondering if there is something I could be doing better.
Now Nick and I are both very open about our feelings and concerns, especially with Nicholas. we can share, but there is also that validation that, "hey, I am going through it too." We confirm what we are both feeling, and we both need that sounding board.
Megan: How has parenting a child with special needs impacted your relationship?
Steph: Most important is acceptance. My mom told me a story. I was born with a cleft palate.
My parents went to a support group. They met parents who separated because one parent accepted it, and the other couldn’t. One parent can’t accept the reality, then the other parent is left fighting the battle alone.
Nicholas’ birth was bitter sweet. We were so excited, planning, and then it was like someone took that moment from us. I remember lying in the hospital bed with Nick, and we just cried. Experiencing the loss of what we thought would be for our child.
But, honestly we do the same thing everybody else does. Our daily agenda is the same as any families. Nicholas goes to early childhood special education preschool and sees a few more doctors than just his pediatrician, but other than that our life is just like everyone else’s. I am not going to shelter him. He plays with other children, only one of his friends also has Down’s syndrome. And that’s mostly I want to talk to his mom because we think the same about a lot of issues. That our child has Down’s syndrome doesn’t rule our lives, it’s just another thing on the agenda.
Megan: Do you worry about Nicholas’ future?
Steph: I have stepped out of the worry zone of what the future will hold. Because none of us know what will happen in the future. If I looked at Nicholas and felt bad for him because I thought his life is going to be hard, well he may have this wonderful future ahead of him. I can’t worry about something I have no control over. It took a while to get to that.
Megan: Do you feel like you’re there now?
Steph: I really do. How I emotionally try to deal with things is day by day and week by week. I changed my mind-set on many things. Having a child with Down's syndrome puts things in perspective. I don’t have the energy to gossip or dwell on the negative, or listen to drama that people bring on themselves. I don’t have time for negativity. I focus on the positive aspect of things, it brings me peace.
Megan: What are the biggest challenges you currently face?
Steph: Not letting Nicholas' struggles consume us. It's really easy to sink into sadness. For example, he's three and he's not talking right now. But I have to look over the last 8 months, and see how far he has come. It's about focusing on the little accomplishments.
Megan: What widsom would you share- with all parents- but especially parents of children with special needs?
Steph: Take it week by week and day by day. Don't over-think and try not to think too far in the future. Don't get wrapped up in too much thought. Enjoy the moment. Just because your child may have special needs, your life is still normal. You can give them every experience you would give your child.
Our family functions well because we are supported by so many people.Lean on the person or people you are going through the journey with. The feeling that you are not alone adds to the ease of moving through life. Communication and honesty are so important.
Megan: Do you feel like Nicholas brought you that gift?
Steph: I think it’s having a child, becoming a parent. Sometimes the fact that he has Down’s syndrome does have an effect. It’s like, “please, that’s what you’re going to complain about.”
The innocence of children sometimes
puts you in your place.
It’s that life lesson to take time to enjoy
and be in the moment.
Splashing around in a pool,
not just to swim but to splash around and experience water.
Or like Santa Claus.
we took Nicholas this year to see Santa
and I was giddy standing in line waiting.
The child’s world is a much calmer, happier place.
When we were little it was like “ssshhhh, don’t point,” if we saw someone with special needs.
I really believe the world is changing. Everyone has something they are working on.
We are all different. Everyone has something that makes them unique.
Support Steph's family in Race4Respect to raise money fororganizations assisting people with Down's syndrome and their families. Click here for more info.
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Hi friends, I write from the heart to tell my life story, and the story of those in my neighborhood called life. Research shows that our children's emotional & mental health is contingent upon us parents being able to tell our life story, or "coherent narrative." This is my coherent narrative, my life story in the making, with some of what I love in life too. My goal is to share my life in a way that is real, uplifting & positive- sometimes serious, sometimes fun. In my practice, I inspire parents to empowerment through reclaiming our life stories and learning respectful discipline. My work is my offering to our children- our future. Wishing you all a happy family!