A place where dads caring for a loved one
with Rett can share their experiences
Dadvocates was created as a platform to share stories about different dads in the hopes that their experiences are relatable to other caregivers. From facing a diagnosis, to changing family dynamics, to finding the right wheelchair, it’s all about getting the resources you need.
Because with every new connection, we all become part of the larger Rett community, so no one has to go through this alone.
Meet Victor
Victor and his family
Victor and Tiana
Jeannette, Victor, Aliyah, and Tiana
My name is Victor, and I was born in Puerto Rico. I now live with my family in Huntsville, Alabama. I met my sweetheart, Jeannette, in high school, and together we have 3 girls: Aliyah, 14, Tiana, 12, who is living with Rett syndrome, and Sofia, 3. I hope my stories can help other dads realize they’re not alone.
Learning About Rett: Always be ready for change
Learning About Rett: Always be ready for change
Milestones happen at different times
for every kid. As a dad, I was less tuned in to the milestones Tiana was—or wasn’t—hitting. But my wife kept noticing delays. She couldn’t hold her head up or get into the crawling position. And the most confusing part was that every time we worried about something, she’d hit that milestone a couple of months later, and our anxiety would go down. As much as I worried, I was also relieved when she reached a milestone, like walking right before her second birthday.
Every time we worried about something, she’d hit that milestone a couple of months later.
Finding out about Rett is different for every family.
In between Tiana missing and reaching milestones, we kept noticing unfamiliar hand movements that led us to a neurologist. She became part of a study, and 6 months later, they called us in. By that time, I really thought she had some form of autism because some of our family members were diagnosed with it.
So, when they told us that Tiana had Rett syndrome, I felt lost. I was overwhelmed. I wasn’t sure what to feel, was unsure of how to console Jeannette, and I just kept thinking, “What's going on?”
Not sure what to do, I tried to lighten the mood with a dad joke and asked if she was like one of the X-Men since we were talking about mutations. It fell flat. No one thought it was funny. And no one laughed. And that's when I realized this was serious. I was in frozen mode. Processing all of it hit me hard, and the closest thing I ever felt to that on an emotional level was when our first child was born. But this news was at the other end of the spectrum. So, there we were. We got a diagnosis. And we were both thinking, “Now what?”
We got a diagnosis. And we were both thinking, ’Now what?’
Being Present: Equal love, custom attention
Being Present: Equal love, custom attention
I’ve always been someone who has a lot of energy.
And when we started to have kids, I thought that meant always doing something with them. But Tiana taught me that a big part of being a dad is also being able to just sit still, be by her side, and let her feel my presence.
Sitting with her has become very special to me because it’s one of the things that she absolutely loves. I admit, at times, it's painful for me because I start thinking about all the things I could be doing. That’s when I remind myself that this time is for us and that she enjoys just being there with me. And I feel it from her. I may hold her hand (and her involuntary hand movements calm down or disappear), or I may put my hand around her, and she leans into me, and we just enjoy watching a movie together.
Sitting with her has become very special to me because it’s one of the things she loves.
When I come home from work, my 3-year-old runs to me, and
my teenager rolls her eyes, but they can both come to me. Tiana is often in another room and maybe even in bed. And if I’m not actively thinking about her, I could easily forget to say, “Hi.” That’s why, when I come home, I go directly to her to hug her, kiss her, and check in on her because I know she heard me and my other girls talking, and she’d be waiting. Acknowledging her, that's the number 1 thing to me.
Acknowledging her [Tiana], that's the number 1 thing to me.
New Perspectives: Learn when it’s time to pivot
New Perspectives: Learn when it’s time to pivot
I know I care for my daughter Tiana very differently
than my wife does. I think it’s just the difference between dads and moms. Here’s a perfect example: when my wife goes to sleep, she never really sleeps. She has a monitor or 2 on her nightstand. They’re bright and loud, and they keep track of Tiana's breathing. But when I put Tiana to sleep, I’m able to fall sleep without any distractions.
As a dad, and more importantly as a husband, I have tried to be more aware of what’s going on, especially as it relates to Tiana. My way of helping has always been to just jump in and start. And I’ve realized that may not be what my wife needs. I’ve adjusted my way of helping, and it came by first realizing that I’m not the most important thing.
As a dad, and more importantly as a husband, I have tried to be more aware of what’s going on, especially as it relates to Tiana.
Because of Tiana and her diagnosis with Rett syndrome,
I’ve become a much more compassionate person toward those who are less able. Not because they don't want to. Not because they're lazy. But because they just can't due to physical disabilities or mental traumas.
I often think back to the type of dad I was even 30 minutes before Tiana's diagnosis and about the kind of dad I am today. Before her diagnosis, I was quick to dismiss most people's problems and make assumptions. I’m happy to say that my perspective has changed, and I have Tiana to thank for that.
My perspective has changed, and I have Tiana to thank for that.
After having Tiana, we knew we wanted a third child,
but we were afraid. Especially because her Rett diagnosis had been such a shock to us. To help us make our decision, we talked to a bunch of families who were in a similar situation to ours. Dad to dad. Mom to mom. Family to family. They mentioned that one of the benefits of having other children is that your life would revolve less around Rett. Of course, we'd still be paying attention to it, but in some ways, we'd have more balance.
If you have a child with special needs, having more kids may help make your life better and everybody in your family's life better, and could help you all feel more relaxed.
If you have a child with special needs, having more kids may help make your life better and everybody in your family's life better.
Go With the Flow: Nothing turns out as planned
Go With the Flow: Nothing turns out as planned
One day I noticed that kids were outside and
all headed to the pool. Of course, I wanted Tiana to go and be included in that experience. So, I picked her up, got her changed into her bathing suit, and brought her to the pool. What happened? She started screaming because she didn't want to go to the pool. I had made a huge mistake. Because I never asked her if she wanted to go there in the first place.
As a nonverbal person, she has a very good “Yes” and ”No” (she looks at you for “Yes” and away for “No”). At the time, I wasn’t open to hearing a response I didn’t want. That pool incident made me realize that part of being a good dad is listening to her words and reading her body language.
Part of being a good dad is listening to her words and reading her body language.
As a person who likes to go, go, go, our recent family trip
to Playa del Carmen taught me a lot about flexibility, adaptability, and how to enjoy family time with a child with special needs.
Before Tiana’s diagnosis, I approached vacations much like Clark Griswold in National Lampoon's Vacation. I planned a packed itinerary that included doing at least 3 things every day. Now I have an itinerary, but it’s a list of 3 things that we may or may not do—that week, lol.
We were all excited to leave home and get out of our routine. And during that Mexico trip, I was still transitioning from itinerary mode to go with the flow mode. I learned about this nature water park excursion. It sounded fun, so I bought tickets, and they included a bus ride there. I told everyone in my family what time the bus leaves. But no one was getting ready (at least at my pace), and I started to get stressed out.
Long story short, we missed the bus. Normally, I would have gotten really stressed that our plans fell through. But I learned to just accept the fact that we missed the bus.
Thinking through our options, we all got in a taxi—wheelchair and all. We still had a bus ticket to come back to the resort, but I had already decided that taking a taxi for our family would be much less stressful than the bus. Because, we are now the family that misses the bus. And that’s okay, because that's just our life with Tiana.
We are now the family that misses the bus. And that’s okay.
Finding Community: Support groups are for everyone
Finding Community: Support groups are for everyone
Everything we do, in some way or another,
revolves around Tiana's condition. So as a dad who’s lived through the shock of a Rett diagnosis, I try to figure out how I can help lessen that burden for others. For many families, I've become a first stop for information and support, and it sort of just happened naturally. When someone first reached out to me years ago, I just had to help.
Since then, many parents have contacted me, and now I have an email written and ready to send that includes resources on medical equipment and information on basic services like Medicaid (including waivers), Supplemental Security Income, and employer health insurance as well as how their loved ones with Rett can qualify for them. These resources help them to understand that they can qualify for most social services with a condition like Rett. And it’s important for me to be able to share what I’ve learned with others.
For many families, I've become a first stop for information and support, and it sort of just happened naturally.
When you connect with people who understand your situation,
they understand you better. You won’t have to explain what Rett is or why you have so many wheelchairs because they already get it. It’s also a way to laugh about your problems together.
I really recommend meeting up with another dad who’s in a similar situation to you. Grab coffee, grab a drink. And don't just do it once, because that first time you're probably not going to talk about anything. You're just going to sit there, have a drink, and have a superficial conversation. But the next time you meet, more feelings and shared experiences are likely to come out. It's something I should do more of, especially with other Rett dads.
Here’s a story I like to tell. I really don't like poop. But there's so much poop in my house. And if it touches me, I freak out. It just ruins my day. But being able to talk to another dad that gets it. Gets me. Gives us both a chance to understand each other and laugh about it.
It's so important that other Rett dads realize that they're not alone. Even if they feel that way. Because we’re all out there. Sometimes we're just hiding. But there are more of us than you think.
It's so important that other Rett dads realize that they're not alone.
In 2018, we took a road trip through the Midwest
all because we met a family online. They also had a daughter with Rett and were getting rid of a wheelchair she had outgrown. My wife asked me how long of a drive it would be to Chicago. At first, I thought, “We’re not driving to Chicago with the whole family!” Chicago seemed far, even if I knew we could use the wheelchair. But then I looked at a map and realized how many interesting cities there were between Huntsville and Chicago. So, off we went, making stops in Tennessee, Missouri, Indiana, and Kentucky. To this day, it has been a favorite family memory.
We met the family and got the wheelchair, and now we’re better prepared since different situations require different chairs. I did not realize that until we started exploring and trying to do things as a family.
We met the family and got the wheelchair, and now we’re better prepared.
