‘There are interesting things we have to think about as parents that heterosexual couples don’t.’

Massapequa

“Our wedding was amazing, but as we planned it, we would meet photographers and DJs who’d ask, ‘Is that legal in New York? You do that there?’ We had conflict with family who were opposed to our lifestyle and didn’t immediately tell us. We had people attending our wedding who asked, ‘Can I bring so-and-so because he’s never been to a gay wedding?’ It was a spectacle for some. We said, ‘It’s just like a straight wedding, but it’s two women getting married.’

“Starting a family was an interesting journey. We did a lot of research and read that it can be a long, difficult process for people that can’t physically create a baby. We were extremely fortunate that my wife was able to get pregnant on our first try. The donor that I chose reflected me as much as possible. It was a really cool process because it was almost like shopping online!

“There are interesting things we have to think about as parents that heterosexual couples don’t. When we were getting our older daughter ready to enter school, we felt we had to prepare her for what might come. We talked to her about how there are different kinds of family structures and how not everyone has a mommy and a daddy. She was 3. We wanted her to feel empowered.

I would rather someone ask me respectfully what it was like to start a family. If we just stop to listen and learn, we might be mindful and in a better place.

“A big worry for us was that kids were not going to be kind to her. We didn’t think so much about the adults in her life. She came home and said, ‘My teacher said I have a daddy; everyone has a daddy.’ We saw that we had to prepare and educate the educators of our children.

“There are different struggles and worries for us as parents. I had to adopt our children. I had to be fingerprinted and have home visits. It’s really demeaning. We have to think about traveling to states that don’t recognize our marriage. I once heard a speaker say, ‘Being a part of the LGBT community, you will fight for the rest of your life. It’s not so much that you will fight big battles, but you will always have something you have to fight for or stand up for.’

“Some people feel it isn’t their job to educate others, but we disagree. I would rather someone ask me respectfully what it was like to start a family. If we just stop to listen and learn, we might be mindful and in a better place.”

‘I was concerned about telling people when I got pregnant again. I felt like I didn’t breathe for the first 12 weeks because I didn’t want something to go wrong.’

Massapequa

“I had a miscarriage at two months. It was traumatic. The first thing people say to you is, ‘It’s so common.’ Despite that, almost nobody talks about it. The whole process of fertility was stressful, and people are secretive about that too. I was concerned about telling people when I got pregnant again. I felt like I didn’t breathe for the first 12 weeks because I didn’t want something to go wrong.

“I was at school when I felt something was off. The doctor said my cervix was funneling. It was opening and closing. She sent me to the hospital, where I was kept under observation for a few days. Luckily, I went across the street afterward for an EKG appointment for the babies. The doctor said, ‘I think you’re going to have the kids today; we need to get you back to the hospital. They’re going to do whatever they can to keep the kids in.’

With medication, I made it to 24 weeks. Then 25. Then 26. I was at the hospital the whole time. They were born at 27 weeks and two days.

“I had just hit 23 weeks. The nurse who came in my hospital room said we could try to resuscitate them, but the chance of them surviving without serious illnesses was not good. That was the worst day. With medication, I made it to 24 weeks. Then 25. Then 26. I was at the hospital the whole time. They were born at 27 weeks and two days.

“Jackson was in the hospital for 93 days; Mae was in for 73. In the NICU, I would see tired, terrified women take their babies home. I also saw women who didn’t take them home. Mae was 1 pound, 10 ounces. Jackson was 2 pounds, 3 ounces. They were both on breathing support. Jackson had a whole slew of things, including E. coli at two weeks old. They had to treat him with an IV in his leg that got infected. Mae had an easier ride.

“Now they’re doing really well. At 2 ½, they’re on the tiny side, but they’re healthy. I see such growth in them. I wish I had more people to talk to when I was going through all of it. It’s important to have a support system and appreciate the people in your life who are there for you. I remember thinking, ‘I can’t do this.’ When I look back, I think, ‘Wow, look at what you can do even though you didn’t think you could.’ I learned that I am stronger than I think I am.”

‘I went from being an average teenager to being stuck in bed close to 22 hours each day.’

Massapequa

“Ehlers-Danlos Syndrome (EDS) is a genetic condition which affects the collagen in your body. My joints are loose, and things pop out easily because of it. EDS is also the underlying cause of my other conditions.

“I have Postural Orthostatic Tachycardia Syndrome (POTS), which means that I have low blood pressure, my heart races, I have improper blood circulation, and it causes neurological symptoms. I was first diagnosed with EDS in the eighth grade when I had minor symptoms. I started a campaign in the ninth grade to raise awareness, and continued to do it for three years with the help of my friends. I’m really proud that I raised $4,500 for the EDS Foundation.

“Things got worse quickly in the 10th-grade. I found out that I had Tethered Cord Syndrome, which meant that my spinal cord didn’t allow proper movement. I went from being an average teenager to being stuck in bed close to 22 hours each day. That summer I had my first surgery to have my spinal cord de-tethered. I was mostly in bed in 11th-and 12th-grade because I had another surgery to relieve high brain pressure. I had no muscle control so I couldn’t support my weight. I wasn’t even able to hold my head up anymore. I had to use my few good hours in the day to get schoolwork done.

I want to do biomedical engineering and then go to law school to do disability rights law so that I can help people with rare and unusual conditions; after all, I spent so much time in high school advocating for myself.

“In November of my senior year I had a fusion, which was a really big surgery that helped significantly. The day I was finally able to go back to school, it closed because of Covid! I wasn’t willing to let being sick stop me from taking AP classes.

“I poured my little energy into college applications. I learned that I am a very driven and positive person. I focus on the small silver linings, such as my great dog, Fritz. If I needed help, he would alert my parents. Recently, I was excited to play piano again, and now I can learn how to drive. I’m going to the University of Virginia in the fall after deferring for one year. I want to do biomedical engineering and then go to law school to do disability rights law so that I can help people with rare and unusual conditions; after all, I spent so much time in high school advocating for myself, like having them install a handicapped door button. At this point though, I’m just looking forward to being pretty normal.”

Interviewed by Iris Wiener

‘People suffer in silence when there is a medical crisis. I realized I can do something for people.’

Massapequa

“My son was born with Cavernous Transformation of the Portal Vein (CTPV). Oxygen wasn’t getting to Gary’s liver, so a part of it died. Because of this his spleen is enlarged, so it can rupture easily. Even though he was born with CTPV, his first episode occurred at age 7. It was a matter of life or death getting him to the hospital once he started showing symptoms, which was up to four times each year. It was a long stay every time. At age 11, Gary went to the movies with his friend and his father. He was eating popcorn, unaware it shouldn’t be eaten because it’s a rough food. It was ripping varices as it was going down his esophagus. He felt nauseous as he went to the bathroom, and ended up collapsing in the hallway with buckets of blood pouring from his mouth. He staggered back to his friend.

“As they left the theater, Gary heard the ushers asking, ‘Did somebody get stabbed?’ He was later taken to the hospital, where, in the first week alone, he had 12 blood transfusions. He was put in a medically induced coma so that he wouldn’t asphyxiate. He was there the entire month. I never left his side. I would hear other parents at the hospital saying, ‘I don’t know how I’m going to pay my bills.’ I was worrying about the same thing. People suffer in silence when there is a medical crisis. I realized I can do something for people. Gary, my daughter-in-law, and I formed Battle Hardened Foundation (thehardbattle.org) to help relieve that financial burden on other families.

To look at him you would be unaware there is anything wrong. We have become more compassionate toward others because we realize you just don’t know their stories.

“Gary once said, ‘Mom, I’m so battle hardened, I could do anything and take any type of needle.’ The foundation was named for survivors who are hardened from their experiences. I’d like to see families not have to worry about their finances so they can concentrate on getting better or staying with their family members and helping them get better. Nobody should have to worry about working to pay rent but not wanting to leave their family member’s side. Gary is 30 now, and this is the first 10 years that he hasn’t had any symptoms from CTPV. To look at him you would be unaware there is anything wrong. We have become more compassionate toward others because we realize you just don’t know their stories.”

‘Sometimes the person you’re meant to be with is right in front of you, and you won’t realize it until you’re 27 years old.’

Massapequa

“Joe and I met in our first-grade classroom, room 108 at Albany Avenue School in Farmingdale School District. I remember telling him I had a secret to tell him and went to give him a kiss on the cheek. He was my best friend in elementary, middle and high school. He went to Hofstra and I went to Johnson & Wales in Miami, and we still stayed in touch.

“It was only three years ago when we finally had our first date at the Massapequa Diner. We said it was either the end of our friendship or the rest of our lives. We knew that there would be no middle ground. In October 2019, Joe proposed in front of our first-grade classroom. He and his sister made up this crazy, elaborate story. She is a music teacher, so he told me she was conducting a concert at Albany Avenue. We were passing our classroom and I said, ‘Oh my god, we have to take a picture.’ We were alone in the room. As I was trying to find my phone, I turned around and he was on one knee. I was completely speechless.

It was only three years ago when we finally had our first date at the Massapequa Diner. We said it was either the end of our friendship or the rest of our lives.

“After I said yes, one of the custodians came out of the classroom next to us and was like, ‘That was so great, you guys. That was so beautiful!’ Everyone we spoke to said they knew it would happen; they were just waiting until we were ready.

“Our wedding Save the Date photo was from his seventh birthday party. He was always the nicest person. There’s not a nasty, negative bone in his body. Now, Joe is a sports editor. I went from being the head pastry chef at The Carltun and running the bakery at Whole Foods to the culinary instructor at Nassau BOCES’ Joseph M. Barry Career and Technical Center- their first female chef in 50-plus years! The female students at the school would say, ‘Why are there no female teachers here?’ I thought that it was important that all students understand there’s a place for everyone in this industry. That goes for both genders, as well as special needs students.

“The food industry is for everybody. My students think our story is hilarious. I say, ‘I’ll tell you from experience: Sometimes the person you’re meant to be with is right in front of you, and you won’t realize it until you’re 27 years old.’ Even though it is a cliché to say it, I really did marry my best friend.”