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.

The unknown is the hardest part, not the day-to-day

Parents of a medically complex son with multiple progressive disorders, who is now age 18, talk about their fear that something will happen to them before their son dies and the challenge of not being able to plan his end-of-life.

The lack of diagnosis frustrates me. I’m a planner. For him, he couldn’t care less.

Parents of 3 children under 9, the youngest of whom has a rare, terminal illness, talk about their different responses to the lack of a clear roadmap for their daughter.

I’m feeling trapped. But we’re getting closer to that future.

Getting ready for the next chapter. The mom of two sons with mito talks honestly and frankly about how she likes to have a plan but the plan is ever changing. "What is four years going to look like for us?"

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."

I had to learn to live in the moment and not look at the future.

The mom of two sons with mito talks about the very early days of adjusting to her new life, striving to stay positive and in the moment.

You evolve into all these things.

The mom of a medically complex son, now 18, talks about the evolution of her acceptance of all the gear, the challenges, the needs, over the years.

You get to the point where this just Is What It Is.

Parents of 3 children under 9, the youngest of whom has a rare, terminal illness, talk about how they are adjusting to their new normal.

Something always comes up. You do it again and again and again.

With two sons with mito there is always something. You clear one hurdle and along comes another. There are so many decisions to make -- back surgery, trach -- and considerations about quality of life.

I’m going to keep moving forward.

The mom of a 12-year old son with SMA Type 1 shares how she thinks about how she copes in a day, with all the bits.

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.

I choose to look at the bright side of life.

Parents of 3 children under 9, the youngest of whom has a rare, terminal illness, talk about how they focus/work on their attitude and perspective.

They're still learning about the progression of the disease.

The mom of a 12-year old with SMA talks about how her son has lost almost all movement and how he is now the oldest child in the SMA clinic at their hospital.

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."

I may not be able to save her, but I can give her the best life possible.

The father of a 5-year old with Leigh's Disease, a mitochondrial condition, talks about how his job is to do all he can to help his daughter, including with experimental trials.

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.

He has taken over the entire home.

Parents talk about their commitment to keep their medically complex son, now age 18, at home and the extent to which his needs have taken over their home.

I can only think out a few years.

The mother of a 3-year old with a rare life-limiting disease talks about living without a roadmap or timeline.

What I’ve learned from this …

The parents of a 3-year old with a rare, life-limiting illness share what they’ve learned thus far caring for their daughter: compassion, patience.

You have to have a sense of humor.

The parents of a 3-year old with a rare, life-limiting illness share how important a sense of humor has been for them on their journey thus far.

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 "

What gets to me is all the medical appointments.

The mom of a 3-year old with a rare, life-limiting illness talks about the tedium and demands of all the hospital trips and where she draws the line.

Your day-to-day life can be a happy place even though your child is going to die.

There is no planning. You’re just there, life on hold. (Or Everything is put on hold until his life ends.)

The unknown is the hardest part, not the day-to-day

The lack of diagnosis frustrates me. I’m a planner. For him, he couldn’t care less.

I’m feeling trapped. But we’re getting closer to that future.

My biggest fear was getting caught in the medical machine.

The elephant in the room: admitting my child is sick and complex

I had to learn to live in the moment and not look at the future.

You evolve into all these things.

You get to the point where this just Is What It Is.

Something always comes up. You do it again and again and again.

I’m going to keep moving forward.

It’s a suffocating feeling.

When I feel myself spiral downward, I have to do something else.

I choose to look at the bright side of life.

They're still learning about the progression of the disease.

When your child is in an experimental clinical trial ….

I may not be able to save her, but I can give her the best life possible.

We don’t know the end of the story but her story will live on forever.

The benefit and blessing of going day-to-day

He has taken over the entire home.

I can only think out a few years.

What I’ve learned from this …

You have to have a sense of humor.

Just because your child is seriously ill, doesn’t mean you stop parenting and teaching them.

What gets to me is all the medical appointments.