CMV Spotlight: Jaimie and Jacob
Welcome to Sunshine and Shattered Dreams! I am so glad to have you.
My world for the last few years has been advocating. The only story I have been sharing is mine, which is not the only one out there.
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
Jaimie: I am Jaimie, a full time nurse and mom to Jacob, who is 28 years young.
Samantha: How did your journey begin? What was going through your mind?
Jaimie: Jacob was diagnosed at 10 days of age, he had an apnea episode at home. I was
overwhelmed with all the information that was coming at me. We had an amazing pediatrician but I think she may have sugar coated a lot of things for me.
Samantha: Tell me a little more about Jacob's conditions associated with CMV. At his age, how many specialists are on your team?
Jaimie: Jacob has global developmental delay, he functions at 18-24 months of age, he has a seizure disorder that started at age 6. His seizures are well controlled on Dilantin, unfortunately that has caused osteoporosis which he gets a yearly infusion to treat.
He sees a specialist for seizures, osteoporosis, chronic kidney disease, behaviors and a dermatologist for dysplastic nevi.
Samantha: What is your biggest fear for Jacob?
Jaimie: That something will happen to me or his dad, his future would be uncertain. He does have an older brother, sister, brother in law, sister in law, 5 nieces, 1 nephew, many aunts and uncles, grandparents and a great grandma though.
Samantha: What is your greatest hope for him?
Jaimie: That he will know love and happiness everyday of his life.
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?
Jaimie: My husband and I are a great team, he knows when I need a break and I know when he needs a break, we make a great threesome.
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?
Jaimie: Patience, use your support team when needed, one day at a time.
Samantha: What is a quote, scripture, prayer, or piece of mediation that you would like to leave us with today?
Jaimie: Worry about nothing, instead pray about everything
Life ain’t always easy but it’s a beautiful ride.
Thank you, Jaimie, for sharing your story. We rarely get to hear from parents of older children. You have many years of wisdom and advice, such a blessing to the rest of us.
To learn more about ways you can help raise awareness about CMV, please visit the National CMV Foundation. If you would like to make a donation to the National CMV Found. in honor of Jacob, please visit here.