Something Is Wrong with Your Baby: 5 Things I Wish I’d Known

Something is wrong with your baby. I remember, as though it were yesterday and not 1982, when our doctor sat down beside my hospital bed and uttered those words. Something is wrong with your baby.

I reach through the decades at the young mother and wish I could go back in time and sit beside her. I wish I could tell her what we learned between then and now about raising the baby we both love. I wish I could calm her anxiety with these 5 nuggets of wisdom our baby taught us through the years.

1. One day you will meet other parents of children with your baby’s rare diagnosis, EA/TEF, and it will be wonderful. Thanks to the internet, which will come into it’s own when our son is in his 20s, you will meet families who understand the challenges of caring for your baby. They will validate your hunches and applaud your advocacy on behalf of your son.
2. You are the expert about how your baby’s condition is manifested in your child.Surgeons and pediatricians will know more about the condition your child has. But you know more about your child than the professionals do. Therefore, your expertise is equal to that of the professionals, and you deserve to be heard. When you find a doctor, a therapist, a nurse, or a caregiver who treats you as such, rejoice and make them part of your child’s care team. They are golden.
3. You must be the keeper of your baby’s medical history. The details of your child’s early medical history will be seared in your memory. Your baby will not remember the details at all, though the experience will be stored in your child’s brain in a different way. You must document the early medical history so your child has it to refer to as an adult.
4. Reach out and ask for help. People care about what you and your baby are going through. Most of them have not raised a child with special needs and have no idea of how to help. So when they say, “Let us know what we can do,” have some practical suggestions ready for them. Things like picking up your grocery order, bringing a meal, driving you to an appointment, bringing your mail or clean clothes to the hospital, or specific prayer requests. You’ll be surprised how quickly they’ll say yes.
5. You’ll adjust to your new normal. Your life will never go back to the normal it was before your baby was born. But you will adapt to your new normal more quickly than you think. You will become stronger. You will mature. You will grieve, but you will also rejoice in the gift of each moment with your child. You will one day be able to encourage young parents in similar circumstances who need to know what you wished you had known when the doctor sat beside you and said, “Something is wrong with your baby.” You will discover the beauty of your new normal and be comforted by it.

Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. The book she is working with Dr. Gary Chapman about using the five love languages in special needs families will be released in August of 2019.