Maybe the Joy Can Outweigh the Heavy
written by Meg Navolio
It was recently my son’s third birthday.
I have a six-year-old daughter too, and her birthday is always filled with joy and nostalgia for her birth and those early memories of her as a baby.
Birthdays are different for a medically complicated child. There is almost more joy, because of all they’ve overcome to be here and to get to this point. I mean, my heart could nearly burst as I watched my son finally walk, dance, and clap to his favorite songs.
But there are dark memories and feelings too.
There’s the loneliness of the weekly ultrasounds for the last 10 weeks of the pregnancy, all of which I attended alone due to Covid. There’s the trauma of finding out that the extra amniotic fluid could be an indicator of a genetic condition.
There’s the isolation of visiting your baby in the NICU alone, without your partner.
There’s the sadness of your husband calling you because the doctor just gave him the diagnosis. The answer you’ve been waiting for, but never wanted. And, it’s coming second-hand on the phone because of the pandemic policies. You're crying sitting on your patio as your dad and daughter ask what is wrong and do you need your mom to come over and comfort you.
There’s the fear when your now three-week-old baby has major surgery to place a g-tube and you are again alone at the hospital. A friend is praying over him with you on the phone. Your partner is again at home, not allowed to be there. If something goes wrong, you will get the news alone.
There’s the grief for the life you thought your child would lead and your family would lead. For the sibling relationship you thought your kids would have. For the milestones you thought your child would hit at certain points.
And there’s the frustration over all the hoops you have to jump through to get your child the care he needs to thrive. The time spent on the phone with insurance. The missed days of work for appointments. The schedule organizing for therapies. Other people don’t have to do all this along with work, raising other children, keeping their marriage going, maintaining friendships.
And so on my son’s birthday, there is sadness, fear, grief and there is guilt for feeling all these things on what should be such a happy day and anniversary.
But there is also joy. Because he is the most joyful child. Because he has worked so hard to reach this point. Because your family has worked so hard to reach this point. Because each day with him, just as he is right now, is a gift.
And while this anniversary can feel heavy, maybe the joy is felt more deeply because of all it took to get here.
Meg Navolio lives in the Chicagoland area with her husband, Drew, and her children, Nora (7) and Nolan (3). Nolan has a rare genetic disorder, Prader-Willi Syndrome. As a middle school teacher, she’s always valued inclusion, but once she had Nolan, she gained a whole new appreciation for it. In the past three years, she has become more passionate about advocating for the rights of people with disabilities and shining a light on the experience of raising a child with a disability. She also enjoys running, reading, traveling and time with friends and family.
