What it is like to parent a child born with EA/TEF is unimaginable to most people. As part of Different Dream’s annual observance of EA/TEF Awareness Month, guest blogger Danielle Drummond tells what the experience has been like for her family.
What It Is Like to Parent an EA/TEF Child
I’m hoping to open the eyes of many to what it is like being the parent of a child born with EA/TEF…for my family anyway.
Like so many others, our story is a hard one. Our son was born at 30 weeks, and we thought that would be our hardest challenge at the time. A few hours later, we learned he would have more challenges than we thought possible. Six years later, life is still a struggle… just a different kind of struggle. Our trip to Italy did not end up in Holland. It went straight to Siberia.
Parenting a child with EA/TEF is like getting punched in the gut when you learn there’s something wrong with your baby.
It’s being scared to get attached or buy baby clothes while your child is in the NICU… because you don’t know if they’re gonna make it.
It’s missing half of what the doctors say because medical language is so very foreign.
It’s sleeping 30 minutes at a time so that you can feed your child in small increments to keep the food down.
It’s the realization that you can hand your child to someone you don’t like and guarantee they will get puked on because our kids puke… a lot! Did I say a lot? Because I don’t know if that does it justice.
It’s friends and family members thinking that you’re exaggerating your child’s problems because the doctors fixed everything. They don’t understand that fixed does not mean cured. Not by a long shot.
It’s the insurmountable amount of research you do to help your child–this should end with an honorary nursing degree. And the number of doctors you will have to educate about your child’s condition. You will become the teacher, but you keep having to learn new stuff, too.
It’s surgeries upon surgeries and procedures on top of the surgeries.
It’s learning how to hand your child to a surgeon and handle the nagging fear that you will not see your child alive again. It is death spells.
It’s post-traumatic stress disorder (PTSD) though it should be called constant traumatic stress disorder.
It’s being on a first name basis with the ER staff.
It’s having to quit your job because daycare aren’t safe. They aren’t equipped for the level of care your child needs. Not everyone knows CPR or the Heimlich Maneuver.
It’s becoming a proud germaphobe with good reason for Lysoling every single door handle, seat cushion, and light switch.
It’s hard.. it’s very very hard. It’s also faith strengthening.
It’s facing your worst fears and yanking up your grown-up britches and look like an 80’s nerd.
It’s moving forward by doing whatever you need to do because your kid needs you.
It’s developing new priorities in life–like keeping your child alive.
It’s appreciating every day you get with your baby.
It’s learning how strong you are as an individual and as a parent because nobody can prepare you parent a child with medical problems.
It’s going to your car to scream it out on bad days until your neighbors think you are certifiable.
It’s spending every waking moment advocating for your child because no one else understands.
It’s being a part of more than 20 support groups online.
It’s finding encouragement and understanding in places you never imagined.
It’s finding a second family of people just like you and discovering you are less alone than you thought.
Love to all of my brothers and sisters on this journey! May we shine brightly, especially when the world seems to be at its darkest.
Danielle Drummond is a proud wife and mommy to a special little boy. She grew up as the eldest of 4 siblings, one of whom was born with medical issues. By watching her mother sacrifice for her disabled child Danielle learned to be sensitive to those on the special life journey. She applies this lesson every day as parent to her son with special needs. She invites you to interact with her on Facebook at The Special Life.
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