I’ve struggled with this post for a long time. I started working on it months ago when I read something someone wrote to people in her life while she was battling cancer. I would tell you who that is, but I don’t remember her name. It was an online journal, much like ours. I remember that her honesty struck me. I’m using her idea, but writing it from my perspective. So the credit goes to her…whoever she is.

It was hard for me to write it in a way that didn’t sound self-serving, like I wanted people to do more for us. This is not the case. We are surrounded by a loving, giving, group of people (you many people know who you are) who care for us and help us with so many things. I started writing this so that people would understand what is truly helpful for a family in crisis or for a family living with special needs kids, who simply just need some extra help every once in a while. I’m writing this using “I” but you could put any number of names to replace it. It’s your neighbor. A member of your family. Someone you know at work. A church member. Your friend.

1)       “Let me know if I can do anything”

We hear this all the time. I believe that it is true. If I call you, you will do anything for us. I know this. I’m not sure why I don’t call you when I really need some help.  Let’s be honest. I won’t call you and request that you do some laundry, come by and help me do a quick clean on the house, or pick up some milk and eggs and swing them on by on your way home from work. I know you have lives of your own; you’re busy with jobs, kids, etc. I think that is why I don’t call. I feel guilty that I’ve asked you to help me when you have your own things to do.

But if you really want to help me: call me. And insist that there must be something you can do. Don’t take no for an answer. Make a specific offer. An hour of babysitting, a simple dinner, a grocery store run since you will be there anyway, run an errand. If you have the time, an extra hand at a kids’ doctor’s appointment would be awesome – so I can actually talk to and hear what the doctor has to say. Or call, ask what is a good time to come by and come. Do anything. We really appreciate it. I promise. 

2)       Simple words.

We really do appreciate to know we are in your thoughts. Send an email, or a note, or leave a message and say just that. We feel isolated most of the time because few people we know in our day to day lives can truly understand what we are going through – what a strain our situation is on our family unit, our marriage, our emotional selves, or our finances this has been. Sometimes we don’t answer the phone because we just can’t talk about whatever bad news one more time that day. But it feels wonderful and comforting to know that we are in someone’s thoughts and prayers. Really, it does.

What to say:

Thinking of you.

I’m praying for you.

I’m praying for ________ (fill in the blank with something specific)

Anything that shows an interest in upcoming tests/evaluations or tests/evaluations already in.

You are doing a great job holding it together…how are you holding up?

I understand (if you really do).

I can’t understand what you are going through, but I want to.

I’m so sorry you are going through this.

3)       Complicated words.

I know you don’t know what to say to me sometimes. I know it’s hard to hear me talk openly about our challenges, and it makes you uncomfortable – I see it in your eyes. Please know that I need to talk about it. Talking about it helps. I need to talk about the tough issues. Our uncertain future. It’s ugly to talk about the kids’ mortality, but sometimes I must. It’s our reality.

When I do have to talk about the ugly issues, please don’t tell me that God choose me because I could handle it (although my disclaimer here is that some parents believe that, but let them tell you). Some days I don’t handle it very well. Plus, I don’t honestly in my heart believe that God chose me. I believe that God knew what would happen in our lives and God made sure we were surrounded by loving people to help us find our way.

What not to say:

God wouldn’t give you more than you could handle.

It’ll all be okay.

They’ll be okay.

You should take better care of yourself so you can take care of them. (trust me, this…I know)

You need to make sure you take care of your marriage.

4)       Please don’t feel sorry for us.

We really work hard not to feel sorry for ourselves. This takes practice: the art of not feeling sorry for oneself. Sometimes we need to have a little self pity, but we don’t want the kids to feel or see any of that. They have enough problems. Our main job on top of keeping them as healthy as possible for as long as possible is to give them as “normal” lives as possible. We have to do that between fitting in meds, therapy/evaluations, doctor visits and testing, etc. They still have to have fun, play, have friends, parties, color and be kids. It helps us to accomplish those things when we’re not feeling sorry for ourselves.

5)       Celebrate with us.

It’s nice when people know where we are in the process of treatment or testing. Pay attention. Inquire about it. We like to share the good things too. We like to talk about the successes. You might not think that Gage learning the alphabet is that big of deal – after all, he is 6 – but we’ve been working on it for over two years. Or that Quinn just recently mastered walking down one step without help – she’s three – it’s been a long physical haul for her. We like to talk about labs that show the kids are stable. It sounds silly, but some of the conversations I remember the most are the ones where friends and family were genuinely interested and excited about a great lab or small milestone reached.

In closing, please know that we get busy in our lives and aren’t always the friend or daughter or son or sibling we should be. We don’t always get to do what we want because we’re controlled by the kids’ medical, therapy and educational schedules. We’re not as forthcoming with thanks and gratitude as we should be. But know, that with all that I am, I appreciate your support and would not have survived with my sanity intact (that may be debatable with some people) without you.