Finding Strength in the Special Needs Journey: One Mom's Story of Hope and Resilience - Adriana Perez

How a mother's love and faith help her navigate the challenges of raising a child with a rare genetic disorder

 

By Sarah Carvajal

As special needs parents, we often find ourselves on an unexpected journey - one filled with unique challenges, heartache, but also profound love and moments of joy. Today, I'm honored to share the story of a remarkable mother named Adriana, whose 7-year-old son Jorge (nicknamed Coco) has Jordan syndrome, a rare genetic disorder that causes developmental delays and severe epilepsy.

Adriana's story is one of resilience, faith, and finding beauty in the midst of struggle. Her experiences offer valuable insights for other special needs families, as well as anyone facing difficult circumstances. Let's dive into Adriana's journey and the wisdom she's gained along the way.

1. Navigating the Early Days of Diagnosis

Adriana's pregnancy with Coco was normal, but shortly after birth, he began having seizures. The doctors initially misdiagnosed him with cerebral palsy. It wasn't until he was older that genetic testing revealed Jordan syndrome.

"When I was pregnant they didn't say there was anything wrong," Adriana recalls. "Everything was normal, he was full term. The only concern my doctor had was he thought he was going to be a little bit bigger."

Those early days in the NICU were incredibly difficult. Adriana shares: "I came home empty-handed. I think it was that that was like the hardest thing to deal with because every day somebody would come pick me up and take me [to the hospital]."

For new special needs parents, Adriana emphasizes the importance of allowing yourself to grieve. "There's that a lot of moms don't know that you have to go through a grieving process," she explains. "You're grieving their health, you're grieving a lot of things."

2. Facing Medical Challenges Head-On

Now 7 years old, Coco faces significant medical challenges, particularly severe epilepsy. Adriana describes the heartache of watching her son endure hour-long seizures:

"It's very scary to like see him sleep for a while and just waiting to see if he's gonna come back and be able to breathe on his own and all of that. I feel like that's what's the hardest."

Despite the difficulties, Adriana maintains hope while being realistic. She's explored various treatments, including a vagus nerve stimulator (VNS) implant to help control seizures. Though it hasn't been as effective as they'd hoped yet, Adriana remains open to its potential:

"I know some people it may take two years to work properly, so I'm not - my hopes are not so set on that right now."

3. The Impact on Family Dynamics

Raising a child with complex medical needs affects the entire family. Adriana speaks candidly about the strain it initially put on her marriage:

"I feel like at the beginning it was super scary and there was a time where I was mad at God because I didn't understand it."

However, she's found that facing these challenges together has ultimately strengthened their relationship:

"I feel like now it's a - it kind of like made us a little bit stronger. We see things in another perspective. We don't make arguments out of those small things anymore."

Adriana also shares how Coco's siblings, ages 8 and 10, have adapted:

"They're very involved with him...They take turns at night. She'll do it one night, he'll do it one night. They know how to do things for him, which totally shocked me."

4. Finding Your Tribe: The Importance of Community

One of the most powerful aspects of Adriana's story is how she's found strength and support through connecting with other special needs families. She emphasizes the value of support groups and shared experiences:

"Having a support group and having people you can relate to - it helps so much. It helps you understand, it helps you cope, it helps you everything."

Adriana encourages other parents to seek out these connections, whether online or in-person. She's found that sharing her own experiences can be healing:

"This is what I do to kind of cope. I go in there and I see if I can help anybody, give them feedback, and that kind of distracts me from just thinking it's just me and I'm going through all of this."

5. Maintaining Hope While Being Realistic

One of the most challenging aspects of the special needs journey is balancing hope with realistic expectations. Adriana shares how she's learned to approach this:

"I do have hope, but I don't set expectations that are not there...If I don't expect it and it happens, I'll enjoy it more. But if it doesn't happen, I'm not gonna hurt my heart."

She encourages parents to celebrate every milestone, no matter when it happens:

"When it happened, I was so happy. I sent the video to everybody. I was like, 'Look at him, he's sitting up!'...You savor it so much more."

6. Self-Care and Coping Strategies

Caring for a medically complex child can be all-consuming. Adriana emphasizes the importance of self-care and finding healthy ways to cope with the stress. For her, connecting with other parents and offering support has been healing:

"I love getting on the lives and people talking. I just love to hear everybody's stories. We may not all have the exact same thing, but we all have a lot of [shared experiences]."

She also stresses the importance of allowing yourself to feel your emotions:

"Not being okay is okay. If you need to cry, cry it out. If you feel tired, it's normal. You don't have to feel guilt over it."

As our conversation drew to a close, I was struck by Adriana's strength, wisdom, and unwavering love for her son. Her journey reminds us that even in the midst of tremendous challenges, there is beauty, growth, and profound connection to be found.

To all the special needs parents out there, know that you are not alone. Your love and dedication make a difference every single day. May Adriana's story inspire you to keep pushing forward, to find your community, and to celebrate the precious moments along the way.

Remember, it's okay to not be okay sometimes. But with faith, perseverance, and the support of others who understand, you can find the strength to face whatever comes your way.