CMV Spotlight: Valerie and DJ
Welcome to Sunshine and Shattered Dreams! I am so glad to have you.
My world for the last few years has been advocating and raising awareness of CMV but the only story I have been sharing is mine, which is not the only one out there. There are so many parents living out the same trials and triumphs as we are, and their stories are so important.
This year, I have decided to use my platform to shine a light on the warriors who fight CMV and the parents who advocate alongside them.
Samantha: Please introduce yourself and your child. Tell us a little about your family: Valerie: My name is Valerie. I am a first time mommy to my beautiful baby boy DJ, who is just about 6 months old. We currently reside in Philadelphia. He is my little rainbow baby. 2 months before I got pregnant with him, I had a very early miscarriage. In so many ways and for so many reasons, he’s a miracle.
Samantha: Before your child’s diagnosis, had you ever heard of CMV, how much did you know? Valerie: Before I gave birth to DJ I had never heard of CMV, which literally broke my heart when I found out that CMV is preventable.
Samantha: How did your journey begin? What was going through your mind? Valerie: A million thoughts. DJ was born with a stage 3 brain bleed and his bone marrow was extremely compromised, but he wasn't symptomatic. Meaning, he didn't have all the symptoms related to CMV, so at first, before his test came back, they thought he had leukemia. An infant born with cancer is something I never even knew was possible. Little did I know, I was about to learn more than I ever thought I would. Since I had no knowledge about CMV, I didn't know what to expect.
The doctors weren't even able to tell me if DJ was going to have a normal life, let alone live to see his 1st birthday. I had just gotten sober from drugs and alcohol right before I found out I was pregnant (thank God) and things were finally back to normal again in my life. Then when DJ was born life was like hold up!...CURVEBALL! It was unclear to myself if I was going to be able to handle possibly losing the most important person who had ever entered my life. I just remember thinking “God, just take me. Let DJ live and please take me.”
Samantha: Tell me a little more about his conditions associated with CMV. For his age, how is he developmentally?
Valerie: DJ has sensorineural hearing loss in his right ear and mild hearing loss in his left ear. Because of how progressive CMV is, he has a 75% chance of losing all hearing by the time he is 5 years old. He's just about 6 months old now. We are now starting the process for his cochlear implant in his right and hearing aid in his left ear and he will have them both by the time he is 1 years old. As of right now, his development is only a little bit behind. His head control is getting better everyday and is almost on track for his age. We’re not out of the woods yet though. We are still waiting to see if he will require a shunt for the hydrocephalus, which is just a fancy word meaning fluid building in the brain and not having anywhere to go. Also, he is still at risk to develop cerebral palsy.
Samantha: What has been the hardest moment for you as a mother? Valerie: Knowing that everything is out of my control and in God’s hands. Of course, I can work with him on his physical therapy and ASL. I am right here everyday working with him and rooting him on, but there's only so much I can do. I've accepted that this life is our new normal and no matter what happens I'll always love him more than the day before. But that doesn't mean that some days aren't extremely hard and push me to my limits. Being a first time mom is hard enough, but having a special needs child and pushing through no matter how hard things get, because at the end of the day your child is the only thing that matters, now that's strength. I’m not the first mommy to ever do it and sadly, I won't be the last.
Samantha: What is your greatest hope for DJ's life? Valerie: That he will see the beauty, just like I do, in everything that we've been through as a family. And for him to realize just how strong he is, and that if he carries that with him his whole life, no matter what he does or where he ends up, he will always make it through the good and the bad. I will raise him to know that no matter how far away from me he is in distance, I will be with him forever and always.
Samantha: This journey through special needs parenting can feel extremely lonely, even when we know we aren’t alone. There is often no physical closeness to a mother going through something similar. Where do you turn to fill your cup? How do you take care of yourself? Valerie: Well, In the midst of everything, I realized what I wanted to do in life and that is become a neonatal nurse, so currently I'm in school for nursing. Also, guided meditation is a big part of my day. I'd suggest it to anyone. If you haven't tried it already, give it a shot.
Samantha: A life filled with hardness can teach us some amazing lessons on love, kindness, empathy, and joy. What are some lessons that you have learned through your journey that might be helpful to a mother who has just begun?
Valerie: DON'T GIVE UP AND KEEP PRAYING. You’d be surprised sometimes by the power of prayer. Acceptance! Learn to accept that not everything is meant to be the way you had hoped for. DO NOT try and go through this alone. Keep family and friends around you, you're gonna need the support. The people that you care about and that care about you are everything during a time like this. Especially when you're too emotional to ask all the right questions when it comes to doctors and treatments and anything that you might not understand completely.
Bring a pen and paper with questions that you may have when it comes down to diagnosis and treatments. You’ll have a little more peace of mind when you can understand everything that the health care professionals are saying. THIS IS NOT YOUR FAULT. I blamed myself for so long, and it took a lot of people to convince me otherwise, including doctors. That feeling is probably why it was so hard for me to accept everything that had happened. And lastly, embrace that your baby is special. As much as I wish I could have prevented all the heartbreak and terrifying questionable moments, at the same time I don’t think I would take back anything that we’ve been through if I had the chance. Yea I don't have a “normal” baby, but believe me when I say that my son is special in the most beautiful and extraordinary way. And we will forever have the strongest bond.
Samantha: What is a quote, scripture, prayer, or piece of mediation that you would like to leave us with today? Valerie: “DEAF CHILDREN ARE ENTITLED TO KNOW THAT THEY ARE HEIRS TO AN AMAZING CULTURE, NOT A PITIFUL DEFECT” -Carla A. Halpern