A 'Thank You' Letter to Those Who Support Families of Medically Complex Children

Thank you. A million thank yous, actually. I know you probably don’t fully understand how much it means to us, but I wanted to tell you I see you… and I appreciate you!

I know sometimes it can be hard to have a friendship and relationship with parents of medically complex children.

It’s so hard. It’s hard for a lot of reasons, but one of the major ones is that relationships with parents like us aren’t 50/50. Some days they may not even be 60/40. Do you know what that tells me?

You have the biggest hearts in the world.

You’re selfless.

You can put others before yourselves, and relentlessly, without even being asked.

Do you know how important that is?

It’s such a difficult thing for me to know that — as the type of person who always wants to give so much of myself to others — I literally so often lack the capacity to do so. There isn’t an option to give yourself to others when you are in the throes of survival. You can try…I certainly have. But having the freedom to spend a night on the town or even go to grab coffee can be so limited. That means you keep asking, even when we consistently say no. When we have an appointment, or we are in the hospital again, or we don’t have anyone who’s comfortable tube feeding our son — let alone being comfortable to watch him for a couple of hours. But you keep asking…and you keep accommodating.

You understand that sometimes the only way for us to be able to do something is for us to bring our medically complex child along.

So you have get-togethers that are kid-friendly, or you invite yourselves and your families over to our house for dinner. You choose to stay in with us and in turn choose us, over and over and over again. We want to do the same for you, but it’s so hard when we don’t have a choice in the matter. You understand that. You don’t get upset with us. You have the ability to practice empathy — to put yourself in our shoes and understand that our daily battles require extra support that we can’t often reciprocate.

We have had so many people turn away from us.

They have done so because we haven’t been able to reciprocate attending events that require us to have childcare. Some people have turned away because it’s too difficult to cope with a friend or family member whose child might have a life-threatening diagnosis, or because it’s easier to just be around people whose lives aren’t in routine crisis. We have often felt as though our hearts have literally been ripped out from our chest as we have traveled this journey of having an undiagnosed child, a journey that leads to nowhere happy or to nowhere at all. And then on top of that, to watch people bow out when you need them the most — when you’ve always tried to be a light in their darkness — it’s an awful feeling.

But you haven’t deserted us.

You’ve shown your bright light.

You’ve understood.

You’ve chosen compassion, not cowardice.

For that reason, we know exactly who is real.

We know who has our back without question. I can’t even begin to express how priceless that is. It eases the immense pain of not being able to rely on lifelong friends or even other family.

You hold space for our heartbreak.

You try your hardest to empathize with what this journey is like.

You allow us to grieve when others push us to just be positive.

You hold our hands through the ick.

You pick up the pieces.

You choose us.

You don’t give up on us.

You are our person, our people, our tribe, our everything…the people who help us stand, who cheer for our wins and cry for our losses.

You’ve shown us there is good in the world.

You see us.

You aren’t afraid to see us.

We would literally be lost without your willingness to do all of these things, despite having to put in so much of the work.

Because of you, we know what is important.

We know that the quantity of relationships doesn’t hold any weight to the quality of relationships. We know how very much it means to be a constant in the lives of people who are suffering, and because of that, we will make lifelong efforts to be that constant for others when and how we are able. We have hope that someday we will be able to return the favor — hope that may not have been possible without your help, or support or relentless love.

Thank you for showing up, moment after moment, day after day.

Never, ever doubt the impact you are making in the lives of your family members or friends.

Never question the efforts you put forth, because effort in our world is like pure gold.

And so are you.

Thank you!