When Your World Turns Upside Down – An Open Letter to All Parents
I hope you never get the news we got that fateful day back in August 2012, when an emergency room physician (looking shaken and pale), told us that our child had cancer. I hope you never experience those frantic moments (now all a blur) of trying to pack for a hospital stay with no idea how long it will last, or if your child will survive, or if your life (as you know it) will survive – financially, emotionally or otherwise.
But I’m writing this letter today because, for some of you, that will happen. You’ll get the phone call or you’ll show up at the E.R. for something you think is routine only to find yourself in an ambulance being transported…elsewhere. That’s exactly what happened to someone close to me last week – a cherished part of my circle of support who was endlessly loving and giving to us throughout Ana’s ordeal. At the moment, he and his wife have just tumbled down the rabbit hole. They’re not ready to reach out. This letter is for them (I’ve already communicated some of this advice to them directly), but it’s also for the those of you who may find yourselves suddenly thrust into this scary, heartbreaking place that I’ve been a part of since that long-ago day in August.
Here is some advice to keep you sane.
I know that you are worried and exhausted and totally preoccupied with playing out all the different scenarios in your head, but you will be next to useless if you’re exhausted.. So please make sure you get some rest. Sleep is critical for you right now. You’re going to be expected to make some very important decisions and take in a lot of information over the coming days/weeks/months, and it will be virtually impossible to do that if you are extremely sleep deprived. There are many organizations that exist to help families in just this situation (The Ronald McDonald House comes to mind). Talk to the hospital’s social worker and see whats available, then take advantage of it! Sleep when you can. If you can go home for a couple of days and switch off with your spouse or someone else, then do this. It will enable you to recharge (and give you much-needed time with your other child/children if you have them).
Accept all the help you are offered. Accept it!! You’re going to need it. I understand the feeling of not wanting to burden people, or maybe you’re very private and don’t like sharing too much information about yourself. This isn’t the time to handle everything on your own. This is much bigger than that. I guarantee you that you and your family are loved and when your child is gravely sick or injured, you absolutely need help right now. Get the word out to your community – you don’t have to blog about it like I do, but at least let a key family member or friend become your spokesperson so they can manage things like fundraising and food trains. Believe me, people WANT to help, plus you don’t need to worry about finances on top of everything else.
Xanax is your friend. Even if you never needed anything for anxiety in your entire life, NOW is the time. I took Xanax to help me sleep from Ana’s diagnosis around September 2012 until a few months after her transplant (around May 2013). I don’t take it now, but I don’t regret that I used it when I needed it. This is ground zero. This is the emergency you’ve been dreading all your life. You can fall apart a little but eventually you’ll need to hold it together.
Once you are out of the deer-in-headlights/sleep-deprivation stage of your ordeal (I estimate this can take anywhere from five days to three weeks), get organized. Pay attention to everything and take notes. Don’t be afraid to send scans, tests and pathology out for a second opinion – this is particularly important if whatever is wrong with your child is rare (as is the case with Ana’s tumor). There are many smart people out there who already have a lot of experience in dealing with what your child is going through (even if it’s rare) – this may be a strange new world for you, but remember that’s just because it exploded into your life without warning. Ask questions. Ask them of everyone. Stay alert.
Take a deep breath and remember that there are people out there who know about this and can talk about it with you – don’t be afraid to seek them out and call them. You need to be the hub of all the experts on whatever is wrong with your child and draw bits of info from each and then pump it back to the others. These doctors, at the end of the day, are all fascinated by rare illnesss/disorders which is why they went into this crazy specialty of medicine and they will want to talk about this with you – use that to your advantage.
This last bit is specifically directed at my friend (although we’d all do well to remember it). Have faith in yourself! You and your wife are smart, competent people who are extremely capable at handling anything that comes your way. Please remember that! I know the environment is not one you’re used to – there are tubes and wires and medications with strange names being pumped into your child, and the environment isn’t exactly restful, but you’ve got this. Listen to me – YOU’VE GOT THIS!
Above all else, remember this. YOU ARE NOT ALONE. You were never alone. Please remember my advice and reach out, reach out, reach out. We are all in this with you. We are here to catch you. We love you.
Now get some sleep.