CMV Spotlight: Layla and Brandon
Spotlight on CMV
Welcome to Sunshine and Shattered Dreams! I am so glad to have you here to share your beautiful journey.
My world for the last few years has been advocating, shouting about CMV from the rooftops. The only story I have been sharing, however, is mine, which is not the only one out there. There are (unfortunately) many other families who have gone before us and will come after.
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. This is just 1 of them...
Samantha: It's so great to have you! Please introduce yourself to our readers. Layla: My name is Layla. My son's name is Brandon. He is 31-years-old and has Congenital Cytomegalovirus. Samantha: Please introduce yourself and your child. Tell us a little about your family: Layla: I was 14 years old when I got pregnant with Brandon, 31 years ago in 1989. I was 15 when I had him. I worked in a daycare in a youth-at-risk type of program when I was pregnant with Brandon. Back then, there really wasn't anything like universal precautions, like washing hands after diaper changes and wiping noses. For me, I know because I was so young and working with children, I was exposed to CMV there, with my initial CMV infection. Brandon is part of a very large family. I went on to have 4 more children and raised my 2 step children, adding up to 7 kids. None of the other children have CMV. Samantha: Before his diagnosis, had you ever heard of CMV, how much did you know? Layla: No, I had never heard of CMV before he was diagnosed. I had a typical medical delivery, and Brandon was deemed healthy and sent home with me. The one thing they did mention at birth was he had a small head circumference "but we will keep and eye on it". Samantha: How did your journey begin? What was going through your mind? Layla: At a few months of age we went to a well child visit and they were concerned he was not meeting his milestones. So, from there they sent us to the children's hospital in Portland, Oregon, and diagnosed him with Congenital Cytomegalovirus. He had all the tests. I was very fortunate because I had the support of my parents, and this hospital that immediately put him in physical and occupational therapy weekly for years. This helped him immensely, I am sure. I am so very grateful for all of the people who are in Brandon's life, present and past. Samantha: What secondary conditions does Brandon have? What does a typical day in their life look like? Layla: Brandon is mobile; he walks very unsteady, but he walks. He is severely disabled and is not able to care for himself in any way. He is in full time foster care now as an adult. He has epilepsy which has been the worst thing by far to this point. He lost a lot of function to these seizures. He has all kinds of seizures but now he has the kind where he just falls. He has to wear a helmet for safety. He has broken his teeth, his jaw, his arm, and his quality of life has been compromised because of the fear of him falling and hurting himself. It is a combination of medication, caregivers fear of him hurting himself and the fact that he is scared to fall. He really doesn’t understand why this is happening to him nor does he have any way of explaining it to us. Samantha: What is your biggest fear for Brandon? Layla: Brandon’s care when I am gone is my biggest fear. He most likely will outlive me. I worry about his care because it is the hardest work a person could ever do. Samantha: What is your greatest hope for him?
Layla: To be safe and live life to the fullest for him. I know he is gifted with bringing families together, whether he knows this or not. I truly believe kids like him are put on this earth for that reason. Samantha: How do you take care of yourself? This journey can feel solitary, like you are in it alone even though you know there are many more out there fighting the same fight. Where do you turn to fill your cup? Layla: Oh geez. This answer is going to be totally inadequate. I have had Brandon in care since he was 11. He comes to stay with us often but his care is so immense and time-consuming that it is literally impossible for one person to do it. When I have him for a few weeks at a time I am literally physically exhausted after taking care of him 24/7. It is heartbreaking and I honestly don't know what I am going to do in the future. It's truly awful.
He is an adult, a grown man. He probably doesn’t want to be around women, who are the majority of his caregivers. He wants to be with men, doing shop and truck things, guy stuff. I know that is raw but it is true. I love him dearly but the stress could possibly break me. 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? Layla: My advice is to get as much respite care as you can, do not ignore yourself, and get counseling, know this is not easy in any way, shape, or form. As we come into the next years of Brandon's life, the realities of his care are changing. We might have him move back into our home, and that will affect our marriage, our finances and my health. This is real and scary. I try to plan ahead but it is almost impossible. Samantha: What is a quote, scripture, prayer, or piece of mediation that you would like to leave us with today? Layla: Be Grateful! Stay mindful, and present today. Live minute by minute. Important for me is to make sure my health is taken care of because, if I go down I can’t take care of anybody else.
Thank you, Layla. Sharing your story will help people see the severity of the impact of CMV. It isn't just cute little babies, they grow up to be adults with significant needs that a mother alone cannot fill. Your strength is admirable.