THE BLOG

When Your World Turns Upside Down

You'll get the worst phone call imaginable or you'll bring your child to the doctor for something you think is routine only to find yourself in an ambulance being transported... elsewhere. So, to those of you who have suddenly found yourselves in a hospital room facing the very worst possible news of your lives, here is some advice to keep you sane.
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I hope you never get the news that my husband and I got 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 for some of you reading this now, that will happen. You'll get the worst phone call imaginable or you'll bring your child to the doctor for something you think is routine only to find yourself in an ambulance being transported... elsewhere. So, to those of you who have suddenly found yourselves in a hospital room facing the very worst possible news of your lives, here is some advice to keep you sane.

Get Sleep! I know you're worried and totally preoccupied with playing out all the different scenarios in your head, but you will be next to useless if you're exhausted. 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 this situation (The Ronald McDonald House comes to mind). Talk to the hospital's social worker and see what's available then take advantage of it. If at all possible, share hospital-duty with your spouse or someone else close to you so you can go home and sleep. 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. Maybe you're very private and don't like sharing too much information about yourself and your children, but this isn't the time to handle everything on your own. This is much bigger than that, especially if we're talking about cancer. When your child is gravely sick or injured, you absolutely need help right this second. Get the word out to your community -- you don't have to announce it on a blog or on Facebook, 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. They want to give. The last thing you should be worrying about right now is finances.

Anti-anxiety medication may help. Even if you never needed anything for anxiety in your entire life, now is the time to ask about it. I took medication to help me sleep from around the time my daughter was initially hospitalized in September 2012 until a few months after her liver transplant in 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. Obviously talk to your doctor and/or therapist about this option. I can only say this worked for me but everyone is different.

Get Organized. 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), start taking charge. Pay attention to everything the doctors, nurses and specialists say. 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 my daughter's cancer). There are 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.

You are your child's advocate. You are the most important member of your child's care team. Never forget that! You need to be the hub of all the experts on whatever is wrong with your child and draw bits of info from all sources and then pump it back to the others. There are people out there who know about this and can talk about it with you. Don't be afraid to seek them out -- call them, email them, send a smoke signal. Do whatever it takes to pick their brilliant minds. Most doctors are fascinated by rare illnesses which is why they went into this crazy specialty of medicine. They will want to talk about this with you. Use that to your advantage.

Have faith in yourself. This last bit is specifically directed at you, the mother or father who is reading this from your child's hospital room (although we'd all do well to remember it). You and are a smart, competent person who is extremely capable at handling anything that comes your way. Never, ever forget 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 it's all very overwhelming, but you've got this.

Listen to me -- You've got this!

Above all else, remember, you are not alone. Please reach out, reach out, reach out. There are people who want to help you. They are in this with you. They are here to catch you. They love you.

Now get some sleep.