How has being a dad to a child with CdLS shaped who you are today?
Raekwon Graham –
Being a dad to a child with CdLS shaped me who I am today in so many ways. Becoming a dad changes your life but becoming a dad to a child with CdLS reshapes my heart, my mindset, and my purpose in ways I could have never predicted. Being a dad to a CdLSer has taught me real patience. The kind of patience that shows up even on the hardest days and longest nights. It’s taught me how to love in a deeper way, how to celebrate the little wins, and how to be present, even when life feels uncertain. There are days that test me days where I feel tired, worried, or overwhelmed. But then I look at Kalani, and I see courage. I see joy in the small things, resilience in every step he takes, and love that has zero limits. Kalani has shown me what it means to fight, to laugh through the struggle, and to shine despite the odds. Because of him, I’ve found my voice not just as a father, but as an advocate for awareness, understanding, and inclusion. Being a dad to a child with CdLS didn’t just change my life. It gave it deeper meaning. I’m not just here to raise Kalani but I’m here to walk beside him, celebrate him, and remind the world that every child, no matter the diagnosis, deserves love, dignity, and a future full of possibility. And for that, I am forever grateful.
Are there any resources, therapies, or strategies that have made a big difference in your child’s or your life?
Raekwon Graham –
Finding the CdLS foundation was one the biggest resources we’ve could have found! As a first time dad and getting to attend the CdLS Retreat made a major impact. It showed me I wasn’t alone. I didn’t have to feel I was the only dad with this problem. It showed me there are better days ahead of us. Every therapist made a huge difference in not only Kalani life but to me as a dad. Developmental therapy, occupational therapy, physical therapy, speech and feeding therapy all created a huge impact on our lives. Watching him work so hard during each session and coming home with a new skill he’s learned has made a big difference. He’s daycare teachers working with him. Here at home all of siblings work close with him to help him. Just having a small village of people who absolutely loves Kalani is just amazing. I couldn’t ask for better support!
Share the moment you first learned about your child’s CdLS diagnosis? How did you feel, and what helped you through that time?
Sergio –
When I received Jos’s diagnosis just three days after her birth in the NICU, I felt utterly shattered. It was incredibly difficult to shift my expectations for the future into the reality of the unknown that lay ahead. Thankfully, I found comfort and strength in the support of my friends and family during such a challenging time.
How has your understanding of CdLS evolved since your child’s diagnosis?
Sergio –
My perspective has truly evolved since receiving Jo’s diagnosis. I’ve come to realize that while she shares a syndrome with others who may have similar challenges, each individual experiences their journey in unique ways and reaches milestones at their own pace. It’s important for Jo to follow her own path, and I believe we should allow her the space to achieve her goals when she feels ready, without imposing any timelines.
How has being a dad to a child with CdLS shaped who you are today?
Sergio –
It opened my eyes to a new perspective on the world, revealing the true essence of resilience and strength. It taught me the profound importance of advocacy and standing up for what matters.
What are some unique strengths or qualities that your child has taught you to appreciate?
Sergio –
Joannah has helped me understand that life is too precious to be upset, or angry. She has shown me that no matter the challenges I face, there is always a light waiting for me at the end of the tunnel. It’s comforting to know that it’s perfectly okay to reach out for help when I’m struggling.
What were some of the biggest challenges you faced in the early days, and how did you navigate them?
Sergio –
In those early days, the most significant challenge we encountered was her health. Each hospital visit and feeding time felt overwhelming, and it was truly heartbreaking to witness her endure pain, even for something as simple as having a bottle of milk. I focused on taking it one day at a time. With Jo, tomorrow is filled with uncertainty, so I’ve learned to embrace each moment in the present as fully as I can.
What advice would you give to a new dad who has just received a CdLS diagnosis for their child?
Sergio –
I understand that worrying about the future can be overwhelming. It might be more helpful to focus on today instead. Remember, it’s okay to ask for help and seek answers to your questions. Don’t forget to take some time for yourself; it’s really important for your well-being.
Are there any resources, therapies, or strategies that have made a big difference in your child’s or your life?
Sergio –
DMI physiotherapy has really helped ( we’re so thankful for smile therapy for the last 3 years helping our little Jo)
In what ways do you hope your child’s story inspires others?
Sergio –
I truly wish for my child to radiate her joy and to demonstrate her strength as she navigates life’s challenges. She reminds us all not to worry because she is our little angel, here to teach us the importance of slowing down, embracing each day as it comes, and being grateful for the moments we share. In times of difficulty, she is our shining light, bringing warmth and hope into our lives.
What emotions have been the hardest to navigate, and how do you cope with them?
Sergio –
Navigating grief can be incredibly challenging, especially when we think about all the experiences and moments that Jo will miss out on. It’s a profound loss that touches every aspect of life.
What misconceptions about CdLS do you wish more people understood?
Sergio –
It’s important not to feel sorry for them. In fact, they might be the happiest kid I know. They show incredible strength, offer the warmest snuggles, and have a genuine love for showing affection. It’s truly heartwarming to witness.
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