When it’s a Long, Indefinite Timeline
Your day-to-day life can be a happy place even though your child is going to die.
“When she was diagnosed, I didn’t know that you could become comfortable with the knowledge that your child wouldn’t be there forever and that you could still have a pretty happy cohesive family with the child that has a terminal disease and we didn’t realize that until we were living it but it’s true.”
There is no planning. You’re just there, life on hold. (Or Everything is put on hold until his life ends.)
Parents of a medically complex son with multiple progressive disorders, who is now age 18, talk about the challenge of not knowing how it’s going to go, how long it’s going to last, and the frustration of not being able to plan. Everything is put on hold until his life ends.
My biggest fear was getting caught in the medical machine.
A mom of a child with a brain tumor talks about how her greatest fear was getting caught in the medical machine of treatment at all costs, and that she was going to lose control of medical decisions on his behalf. "It was an everyday struggle."
The elephant in the room: admitting my child is sick and complex
The mother and father of a 5-year old with Leigh's Disease, a mitochondrial condition, talk about the challenge of adjusting to having a medically complex child. "Special wheelchairs, equipment and school make you admit your child is different." The mom cried a lot when her child first went to a special school. "But that's part of the journey."
It’s a suffocating feeling.
I have days where I question if I can do this. I feel like Superwoman but I'm NOT Superwoman. The mom of two sons with Mito talks about the impact of the burdens: lost friends, cancelled trips, truncated trips because of nurses. I ask "Why me?" I want to just be me, but sometimes I have to give to give give and I struggle with that a lot.
When I feel myself spiral downward, I have to do something else.
The mom of a 2-year old with a rare, fatal illness talks about how she lives mostly in the day-to-day normal, coping with all the typical bits of juggling busy schedules for her entire family, but sometimes bumps into the reality of her youngest child’s prognosis.
When your child is in an experimental clinical trial ….
The mother and father of a 5-year old with Leigh's Disease, a mitochondrial condition, talk about how their daughter's positive response to an experimental study drug means she has more time but they don't know how much or what to expect. "When she gets sick, we don't know if this is going to be the one."
We don’t know the end of the story but her story will live on forever.
Parents of a 22-month old with leukodystrophy and 6 other children talk about living with this child for whom they do not know how long she has. They talk about how they know it is likely their daughter will die but because they don't know exactly, they focus on Today. The dad observes that their daughter's STORY will live forever.
The benefit and blessing of going day-to-day
Parents of a 22-month old with leukodsytrophy and 6 other children talk about how You Just Do It. If you actually step back and reflect on what you’re doing, it is overwhelming. Their daughter has taught them endurance and the importance of focusing on the present.
Just because your child is seriously ill, doesn’t mean you stop parenting and teaching them.
The mom of a 9-year old daughter with cancer talks about how parents try to keep things as normal as possible. "You don't stop being a parent, teaching them what you'd teach them if they're going to live. you're still going to say No and mean it. Because not all children die "