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Part 3 of my Dealing with Diagnosis series is going to discuss dealing with the horrible situation of having your child receive a difficult diagnosis. Image your family doctor taking you aside to tell you that your child is ill. People deal with this every day.
Because my wife and I don’t have children, I’ve had to enlist the help of some friends of mine who have been kind enough to help.
With names changed to protect the innocent, “Jill & Max” were college friends of mine. When we were talking about what had transpired in our lives over the next 20 years, we shared stories- I told them of my Acoustic Neuroma diagnosis and treatment, and they told me of their experience with every parent’s nightmare. Their young daughter, “Mary,” had been diagnosed with Heart Disease.
I can’t imagine how much the fear that we’ve discussed in Part 1 and Part 2 of this series would be multiplied when your young son or daughter is involved. There is a responsibility there to be the strong family member & partner that we have discussed, all while trying to keep yourself together as the fear of the unknown for your little one is tearing you apart inside. But, like all great parents, Jill & Max were up to the challenge.
Here’s my interview with Jill…
What was your immediate reaction to the news?
I was shocked and scared when our cardiologist told us about Mary’s heart. It was news that we never, ever imagined we’d hear. She gave us time to process the news alone. Max and I both cried as the options presented to us were so severe and frightening.
What coping methods did you use?
I let myself feel whatever emotions came over me. I cried when I was scared or nervous, laughed at the things that brought me joy, and kept myself busy to keep my mind off what was to come. Eventually, I relied on my friends and family and my faith. They prayed for us, helped us research more, and were just there whenever we needed them.
How did they work? How did others react to them?
They did work. I’ve always had a pretty positive attitude and believing that somehow we would get through this- no matter the outcome- helped me accept the situation. No one ever reacted negatively to how Max and I dealt with our feelings. Until you are in such a place, you do not know what someone is going through. Using humor, even as a bit of a defense mechanism, helped a lot. There is a lot to laugh about and smile about if you look around you.
Since your family has been dealing with this for years now, what has worked best long term?
Talking openly about my feelings and concerns or fears with others has helped. I’ve also been lucky to share our story with so many people who are just starting out on their journey with their heart child. We’ve been interviewed for magazines and newspapers- and to me, giving others hope and optimism is the best gift I could give myself, Mary, and others who have similar concerns. I find that I now have causes that are near and dear to me- ones that I raise money for and support in any way I can. I’ve been blessed to have a 10 year old daughter who is tough and determined and a survivor. She gives me strength each and every day. She also reminds me how precious life is and to never take it for granted.
Any other suggestions for patients and/or family & loved ones when encountering a difficult diagnosis?
Allow yourself to feel. There is no right or wrong way to react to a difficult diagnosis. Also, get as informed and educated about your options, the details of treatment, success rates, prognoses, etc. When others want to be there for you, let them. They may not know what to say or do, but allowing them to be a part of your experience helps a lot. Knowing that you are not alone and opening yourself up to the support and kindness of others makes the situation more do-able.
Any great charities or causes you’d like to mention?
We’ve been fortunate to live in an area that has great resources for our daughter. We have participated in the Twin Cities Heart Walk for 10 years- raising over $12K for the American Heart Association. Team Mary walks every year in support of our daughter- and all those who are fighting against heart disease.
She also attends Camp Odayin (www.campodayin.org), the only camp in the Midwest for kids with heart disease. She gone to day camp for 2 years when she was 6 and 7-and overnight camp these past 2 summers. She’s surrounded by other kids like her- with scars and meds and issues that only they can relate to. When she goes, she feels normal and accepted. Camp has given her confidence and joy and lasting friendships, too.
I am able to give back to these organization by volunteering and raising funds. It’s the least I can do as they have given my daughter and my family such hope and happiness. It’s been an amazing journey and I am able to look ahead now, hopeful that my daughter will live a good and happy life.
Thanks to these wonderful people for sharing their story with us. There is so much we can learn from each other, the most important of which continues to be – you don’t have to do this alone.
Have you had a child receive a difficult diagnosis? Please share your story in the comments section!
Image courtesy of Praisaeng at FreeDigitalPhotos.net
Not exactly the amazing snow event they kept telling us about…
But I’m not complaining, I’d much rather spend the day writing than shoveling!
In Part 1 of this series (link to Part 1), we talked about how patients need to focus on dealing with their diagnosis in their own manner. Part 2 of the series will focus on how spouses, loved ones, and family cope with a difficult diagnosis. I think this is one of the hardest situations to be in. The patient has had this thrust upon them and uses whatever coping mechanism they can manage. They compartmentalize, joke and laugh, cry their eyes out, pray, and countless other ways that will see them through.
Spouses, loved ones and family, on the other hand, have to deal with things in their own way – but it can’t infringe upon the method that the patient has chosen.
Let’s say Jane Doe decides that she is going to internalize all the fear, anger, pain, and frustration of her brain tumor diagnosis, and deal with it as privately as possible. John Doe can’t cope with his fear, anger, and frustration by chatting up people in the supermarket check-out lane about it. That’s going to lead to John & Jane getting 2-for-1 pricing on marriage counselling and chemo sessions. Not good!
Does that mean that John shouldn’t be able to express his grief and frustration about his wife’s diagnosis? No, of course not. But John Doe is in a tough situation where he needs to seek his comfort, solace, and motivation for being a supportive spouse during his wife’s time of need in a more private fashion. He is going to have to find friends, counselors, and family members his wife approves of that he can talk to about their situation. And Jane is going to have to give a tiny little bit in order to let her husband help her. I don’t envy either of the Doe’s – and I have a healthy respect for both of them as they deal with things as best they can.
My wife got a phone call from me one Tuesday morning in the summer of 2009. It was the typical “Hi Honey, guess what? I’ve got a brain tumor!” phone call. My diagnosis was an Acoustic Neuroma (a what?). I can honestly say that I was so overwhelmed at getting such a diagnosis that I don’t recall ever giving much thought to what my wife’s feelings about might be. Does that make me a bad person? No, I don’t think so. As in the case with Jane and John Doe, I think the patient pretty much gets a pass.
So how did she deal with it? If you’ve read my book, you know that my wife is the classic Type A, task oriented, make a list of things that need to be done and check them off 1-by-1 kind of lady. She’s not the type who runs around in panicked circles… (that’s me). She took a deep breath and helped me figure out a plan of action – go see a specialist, read as much as we can about it, start to plan for surgery, make work arrangements so she could be around as much as possible, figure out the best way to keep family and friends informed about what’s happening.
Then came the hard part - Dealing with me. My wife and I are complete opposites. If it is possible to take two completely different paths to the same destination, we’ll find them. She had to figure out ways to divide her task lists down into small enough increments that I could achieve them without feeling overwhelmed. She had to convince me that it would be worth having the surgery done no matter the terror I was experiencing at the possible outcomes.
After the surgery – when the doctors got their first look at the incision, she was standing there as well. She dealt with the nurse I kept puking on. She was even able to manage her frustrations enough to stop driving like Mario Andretti when we were on the way home from the hospital and I was too woozy for an angry car ride.
My Family – all did their part as well, even when that was not doing anything. My brother and parents had volunteered to come out to DC to help. I think everyone, including the three of them, realized that it might actually cause more stress for everyone if they did. It was a really nice gesture, and I appreciated it – but I really appreciated their understanding that coming out to visit while I was recovering from brain surgery might not be the best thing for me. I am sure it was hard to sit over 1000 miles away and wait for updates.
My Sister – was local and was able to come and visit in the hospital and at home during my recovery so that my wife could get a break sometimes. She also played a huge role in helping me get ready for the life changes that would come from my tumor and surgery (but that’s a story for a future article).
SO WHAT? WHO CARES? As with Part 1 of this series, this is all directed at you. You have to do what works best for your situation.
Are you the patient? Try to be a little flexible if you can with how your loved ones need to process what is happening to you – but don’t ever let it change how YOU want to deal with your diagnosis.
And you caregivers – This is a tough road for you. Your loved one understands that, but they’ve got to do this their way. Do your best to fit your methods around what is working for them. If you find yourself at odds that are just too hard to overcome, find someone to help – DO NOT argue or fight with the patient. Ask your medical team for help – there is probably a social worker or counselor who can offer guidance. Or ask whatever spiritual advisor you might usually seek help from. Or ask someone who has been through a similar situation. All of those people will have ideas that might help.
What about you? Please share your story of successes and challenges in the comments section