Dear Caregiver...

As the sounds settle down for the night and your child falls asleep, your night is just beginning. You ensure that everything that needs to get done gets done – the emails, the medical supply orders, the laundry, and the to-do lists for the following day. (Or next week, right?)

Whatever needs to be done, it's on you. While everyone in your home is fast asleep, you are the one fading away.

Caregiver, I hear your silent cries for help

If you are avoiding everyday life outside of your kids, watching friendships fade, hiding emotions, and neglecting yourself – I can relate to all of this more than I would like to admit.

With each day that passes, I realize more and more how much caregivers have to give up taking care of their rare children. No part of this life is easy, and it may never be. But having an optimistic mindset, even when you don't want to be positive, can help.

Asking those around you to help you

I accept that things may not be done the way I want them to be, but if my child is safe and taken care of, I am okay with it. They will not resent me for taking a break. If they could tell us how much we deserve it, they would.

Caregiver, this life is so unfair to us

This life is not fair to us or our children. In my opinion, some days it is torture. Of course, we love our babies, but why was this life given to our family? We're good people. We do the right thing.

The lack of understanding, the burdens, and the constant fights to get things that come so easily for those outside our space feels so biased. The uncertainty that comes with rare diseases and the inability to fix my child's well-being is hard to live with. Hence, so many of us exhaust ourselves searching for a cure.

Finding balance and delgating tasks

Finding a balance between fighting for a cure for your rare child while actually living life is not easy. To avoid overwhelming ourselves, we must set realistic goals and reasonable priorities. Delegate responsibilities to others within your rare disease community, close family, friends, and volunteers. Taking breaks to care for the everyday needs of your child, your family, and yourself is crucial.

Caregiver, I see your mind wandering and worrying

Sometimes, I wish someone else could take over, even for a day or 2.  But with each day that passes, I have realized that sometimes we caregivers are the only ones who put the same effort into caring for our rare children.

Thoughts often run through my head about what would happen to my child if something unexpectedly happened to me. What is going to happen when I am no longer here? Waking up each morning knowing I am one day closer to leaving this world without my child is scary, and it often makes me sick to my stomach. We, rare caregivers, are needed forever. But forever doesn't exist.

Planning ahead and living in the moment

No caregiver wants to think about life without their child or their child's life without them. Accepting support from others and thinking ahead about the future with the guidance of professionals can help you make the process smoother. In the meantime, educating family, friends, and siblings on the type of care that is needed can help greatly. Though it is easier said than done, living in the moment and enjoying every chance you can with your child will leave memories your child will hold onto forever.

Caregiver, know that you are not alone in how you feel

This rare life is hard. It will always be hard. Though we fight every day to find cures for our babies, it is not our job. Our job is to be their best advocate and give them the best quality of life. Of course, I am going to try and cure my child, and I sure hope we can do that for all of our kids. What parent wouldn't want that? But it is easier said than done and sometimes just impossible.

We must come together and lift each other on our hardest days. We are together in this small, rare disease community, and we will fight through it with resilience and strength, spreading awareness one day at a time.

Caregiver, you are doing amazing

I am so proud of you for all you do, have yet to do, and what you sacrifice for your family.

With much love,
Alex Gaudlap
Rare Mama