Support

What is support for us?

          There is a big difference between support and a rescue. A rescue is 1. doing something for someone that they can do for themselves 2. doing something for someone that they haven't asked you to do for them 3. doing something for someone that is a detriment to yourself in some way. When people rescue someone else, they often end up with negative thoughts and feelings about the "help" they have provided. Maybe you gave your last dollar to the homeless guy and he bought a beer. You think "that was my LAST dollar. I needed that. And he bought a beer!! WTF!?!" Maybe you do something for your friend that you would have liked someone to do for you and they didn't appreciate it in the way you would have liked. One definition of support said "to hold up; to keep from weakening; to strengthen." That definition gave an example of a tripod supporting a camera. The tripod isn't there to take the pictures but is instead there to help the camera take better pictures. If the tripod was rescuing the camera, it would say "here, camera. You go put your feet up and I will take the pictures." Except, a tripod can't take pictures.

I thought we were talking about CF and support. Why are you talking about a camera and a tripod?

          Individuals and families dealing with CF do need support. During this first "tune up", many people have asked us how they can help. Often times people want to help but don't know how. Or, others may feel like they should help but don't want to, don't have the time to, or don't have the resources to and may feel guilty. And others may think they know exactly what to do but are afraid it may backfire. So, where does support start? The tripod was made to provide a specific kind of support to the camera. It stands there. If the camera doesn't use the tripod, the tripod doesn't say "but i was standing there ready to be all still and the stupid camera didn't even acknowledge me." It doesn't say "all i do is stand here while the camera gets all the glory." The tripod knows exactly what it can do to make sure that the final picture is perfect.

Ok, seriously. Enough with the camera. How can I help? 

          The first step is finding out what you can do to help.  Even if it sounds stupid or simple, it is what is being asked for so respect that. That starts with the CFer or their care givers opening their mouths and asking for it. "Closed mouths don't get fed." Now is not the time for pride or stubbornness, caregivers and CFers.          
 Next, the support people have the right to say no or to say that they cannot do it. I would rather have someone decline to help (for me, honestly and directly) then to have someone help me and then resent me later. And, I personally don't need you to even come up with an excuse. "Uh, see.. what had happened was..." I don't honestly have time for your reasons and I won't remember them later. A simple "sorry, I can't" is just fine for me.I won't hold it against you, I wont hate you, and I will find someone else to help. But, if you are telling me you can help and then back out or do a half ass job because you didn't want to in the first place, that will make it harder for me. So, commit to a yes or no.

You say a rescue is doing something for someone that they haven't asked you to do but I would really like to surprise my friend by... 

          I have had many awesome friends go above and beyond what I asked for because I could not see that I needed something done. I love it. They are awesome.  The trick here is if you choose to do something that someone hasn't asked for, you assume the responsibility of your feelings about the result. Maybe someone wants to surprise the baby with balloons at the hospital but balloons aren't allowed at the hospital. Thank you for the gesture but we can't accept them. It's not a personal attack on you. Don't get mad at me because I have to ask you to take them home or to my house instead. At this point in my life, I haven't slept for 3 days, I have barely eaten, my 6 month old is strapped to machines, my 2 year old is all outta whack, and I am an emotional wreck. I don't have it in me to stroke your feelings about being disappointed that your surprise didn't go over well. I appreciate the gesture though and don't give up trying to help. 

I think that it would be easier if you guys... So, I will help you by telling you what I think you should do

          Uh, no. Do you have a baby with CF? Have I asked for you opinion? Are you a medical doctor... better yet are you OUR medical doctor? No? Then please don't try to do the things for me that I can do for myself such as make decisions about my child's health. I love getting feedback and hearing about things that I didn't know. Maybe you've been in this hospital before and know Nurse Susie Jane. You know that Nurse will do anything for a Starbucks. Tell me about it! Thanks! I love it. But, if I tell you that I already know that Nurse Susie Jane has had a Starbucks today and is still PMSing please don't come to the hospital with a Starbucks trying to bribe her for me.

You look like a mess; take a shower and a nap. Your house is gross. Your 2 yr old is being a brat. You are being irrational. You're bitchy. Your husband, your mom, your .... 

          Zip it. I know. Reserve your judgments please. I am probably going to fly off the handle a few times. I will probably look like hell. My house has a funny smell to it that I can't place because this is the first time I've been home since Thursday (its Sunday). My 2 year old is off schedule. My husband is doing the job of 2 parents. And, we're both still working because we have to afford this outrageous hospital bills. If you aren't coming to clean, watch my kid, give me a massage then zip it. Actually, even if you are helping, still zip it. I will not look like a super model. I am on edge. And all the people in my life who are helping me are probably tired too so if my mom isn't super nice or my husband doesn't say hi when you walk in, please know that we are all doing the best we can. A little understanding and patience is greatly appreciated.

I pity you. I feel so sorry for you.  

          Thanks for thinking of me. There is a difference between empathy and sympathy. Sympathy is feeling sorry for someone; pity. Pity often leads to wanting to rescue (save) someone. I don't need saving and I don't want pity. Empathy is "identification with and understanding of another's situation, feelings, and motives." When you empathize with someone, you are able to put yourself in their shoes a little bit and provide more genuine support and understanding.  It's not really about what you say but what you are thinking. You can still say "I'm so sorry you are going through this" without pitying me. I want you to know that we will be ok, though. I am sorry I am going through this too but it's apart of CF life. If you know me, you know that I am a trooper. My husband is a trooper. Jaxon (my 2 yr old) is a holy terror who is independent as hell and smarter than all of us put together so he will be just fine. And, Maddox (the CFer, 6 months old) is the happiest baby ever known to man. Seriously. Hooked up to machines, this kid is playing with the cords and laughing about it. We will all be fine, I promise.

You didn't even say thank you!

          If I forgot to say thank you to you personally, I am very sorry. Please know that in this moment I want to write thank you cards, send gifts, and sing my praises to each and every one of you. But, when and if I get back to real life, I will be playing catch up in every aspect of my day (work, cleaning, my health, the health of my kids.) I struggle with expressing gratitude enough. I want to "repay" people for everything that they have done for me because I have a hard time accepting support. Sometimes, I just cant repay everything everyone has done. Just know that if you need something from me and I can do it, I will (but you may have to ask because my mind reading ability was lost when I got pregnancy brain 2 years ago). Thank you all for everything you have done, will do, thought about doing, and everything in between.

If you are a CF family, please ask for the support you need in clear and direct terms. Don't expect people to be mind readers. Don't think "if they loved me, they would just do it without me asking. They should know how to help." They don't know how to help. Don't get mad when someone can't help you. Everyone has their own struggles and you may not what their struggles are. Maybe this is too hard for them to be involved in because they fear their child will die and they can't come see a kid strapped to machines. Be understanding of everyone else's situations and life. Be grateful for those that do come out to help. Be grateful for whatever support you are given, even if its not exactly what you pictured. And, when your life is a little calmer, return the favor. I believe in karma. Bank your karma when your kids and family are doing well. Give back to others every chance you get, but don't give with the expectation what that person will "owe" you later.