Hearts & Smiles – Secret Weapons

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HEARTS & SMILES – Secret Weapons

Practical and Unusual Ways to Navigate a Serious Childhood Illness

Hearts & Smiles?  What in the world can these have to do with a serious childhood illness?  Having your child face a difficult medical struggle is brutal and heart-wrenching.  That is absolutely true, but stick with me.  I’ll explain with a story.

Many years ago, my sweet five year old son (Jake) was a patient at Memorial Sloan Kettering Cancer Center in New York.  It had been a grueling few weeks and he looked completely miserable.  I didn’t see the happy, carefree boy I had known before.  Pain and fear had taken over.   I felt absolutely helpless and wanted nothing more than to make things better for him.  We were all afraid, stuck in a cancer hospital, and there was not much that could be done.  I was just looking around, exhausted, and there it was — something small and something silly!  I’d noticed a smiley face hidden within the parts of a medical machine.  I said with a half-hearted, forced smile on my face, “Look Jake!  See that face there?  It’s smiling at you!”  He gave me the tiniest smile back (finally, he smiled!) and my heart leapt.  My mission became clear.  I was determined to find every hidden happy face in that darn hospital.  It’s amazing how many you can find when you need to.  Jake actually grinned each time and also joined in the hunt.  We searched for smiley faces everywhere, and eventually hearts as well.  We talked about the fact that no matter how hard things are, you can still find happiness somehow. Those discovered happy faces and hearts somehow embodied actual and symbolic joy and love for us.  More importantly though, we found a distraction, a small unified goal, and something to remind us that we didn’t have to let the horrific situation control us.  To this day, more than ten years later, we still look for random hearts and smiley faces.  In fact, friends now send us pictures of their finds from all over the world.  Each and every one reminds us to live our days seeking some type of happiness no matter the circumstance.

So what’s the take away here?   Even when confronted with a frightening and difficult childhood illness, seek love and joy in every way possible!  Look for anything to ease the stress of your child’s medical situation.   You could find hearts and smiley faces of your own.  Or do something else.  Think outside of the box and don’t feel trapped by your situation.  Of course, a substantial childhood illness is still very serious and you can’t (nor should you) completely escape that reality.  But it can be indescribably helpful to lift your child’s spirits along the way.  It’s actually good for everyone involved.

Much of this is certainly instinct.  But, on the other hand, it very easy to get lost in the sadness and anxiety of the situation.  The pain and emotional turmoil you experience as a parent cannot be diminished.  However, even though it’s hard, you CAN pick yourself up and do things to create a more positive atmosphere.  Just make it a priority.  Do it for yourself and  for your child.  There are a lot of practical ways to begin if you just commit to trying.  Even the smallest efforts can have a good impact.  Here are a few simple ideas:

  1.  As suggested, find hearts and smiley faces in random places.  Find anything you can think of.  Make a game out of it.  Play “I Spy” or any alternate version that comes to mind.
  2. Turn to the entertainment often available in hospitals like movies, books, board games, words searches, video games.  Of course, every parent decides what is best, but we relaxed our rules and let our son watch the previously forbidden Teenage Mutant Ninja Turtles cartoon tapes!  Jake was so thrilled to have this pass that he was happy for days despite being hooked up to three different medical machines.
  3. Get creative and make something silly with your child.  Phone apps now have all kinds of options.  You can do karaoke with your child.  You can make short lip sync videos with Dubsmash.  You can play with photos.  You can create a large mural for the wall with just paper and crayons.
  4. Explore YouTube or Vine for funny videos.  You can request friends and family to find good ones for you.  They’d be thrilled to help, and something small and uplifting like this can easily change the mood.  In addition to being fun, older kids will appreciate being kept in the loop about what others are watching.  Younger kids will just enjoy something funny and interesting to take their mind off of their illness.
  5. Ask friends or family to write short stories or notes about anything that might be interesting.  Funny things that might have happened to them, a fun poem, a note about what’s going on in the outside world.
  6. Ask friends or family to send pictures or videos.  This is so easy  with smartphones.  A good idea to brighten your child’s day is to have his or her friends create a small video to let your child know they are not forgotten.  The friends can all just say hello and wave, they can sing, they can chat about the day, they can do a skit.  Anything will help!  Being sick, stuck at home or in the hospital can be lonely. Just ask friends to help.  Quite often they don’t know what to do and would be thrilled with a suggestion.
  7. Find silly things in the hospital to provide entertainment.  Practice throwing items into a cup, even a balled up piece of paper.  See how many you and your child can make in a row.  We actually filled syringes with water and sprayed them at each other.  Many of the nurses allowed my son to spray them.  It was a huge tension reliever and the staff was eager (and wonderful!)  to play along.
  8. Check out the hospital gift store, local drug store, or ask a friend to bring some simple items for “busy work” like word searches, crossword puzzles, coloring books, Soduko, Mad Libs.
  9. Create experiments or treats with foods.  Try something new, order that fancy dessert, have taste tests (sampling all the types of chips in a vending machine, different Jellos, various fruits, anything).  If you are daring, try Bertie Botts Beans from Harry Potter!  These have regular flavors and also terrible flavors all mixed together (think earthworm, ear wax, and worse).  They provided great entertainment as we dared one another to take a turn.
  10. Get to the know the nurses.  Connect with other patients and families if you can.  If you’re at home, let people know when they can visit or call.  A childhood illness can be isolating.  Any connections with other people can help.  Keep in mind that many people will try to give you privacy if you don’t reach out first and invite their presence.

There are so many simple ways to keep your child’s mind off the pain, uncertainty, or sadness.  There are countless ways to create some joy during a day that could otherwise be filled with unhappiness.  Nothing can take away all of the trauma, but making the effort certainly can’t hurt.  In fact, once you start down this path, I think you’ll find that hospital staff will even join in.  Friends and family are more apt to get involved.  You even start to feel the mood shift and the true smiles and joy start to grow within you.  This, in and of itself, is a medicine for healing.

I touched upon this in my last blog, but the one thing that kept me going through my son’s long cancer journey was the thought that I never wanted to waste a day with my child.  I didn’t know how much time he had left and decided to cherish every moment we had.  I sought to find love and joy in more ways than hearts and smiley faces, but they were a good start!  Little did I know that they were the ultimate secret weapon – trying to find happiness in a frightening and difficult situation.  Good luck finding your secret weapon!

by Cindy Maynard, written with love and hope

I am the mother of three boys (including one brave cancer survivor).  I am a lawyer, children’s medical advocate, crazy Kentucky basketball fan, and the president and founder of the Maynard Childhood Cancer Foundation.  Please visit http://www.helpkidswithcancer.org if you would like to learn more about our journey.

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COPING WITH A CHILD’S SERIOUS ILLNESS

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A CHILD YOU LOVE IS SERIOUSLY ILL…
NOW WHAT?

Breathe.
Inhale. Exhale. Repeat.
You can do this.
You are stronger than you think.
And your child needs you.

Nothing can truly prepare you for the moment that you learn your precious child is in medical danger. Your instincts to protect your son or daughter at all costs are thrown into turmoil. You can’t fix this – cancer, juvenile diabetes, genetic disorders, the list goes on and on. If your child, or a child that you love, has been diagnosed with a threatening medical issue, your world has just changed and your mind is probably reeling.

First, know that I am sincerely sorry your child is in harm’s way. I know how hard this is, I really do, but I also know that you can get through it. Second, I want you to know that you are not alone. You will be amazed at how many people care and would like to provide support. Third, I am here to offer some thoughts to help clear your head and possibly help you feel better prepared for what lies ahead. Nothing will fully prepare you, I know. I vividly remember that when my son was diagnosed with cancer at age 5, I was so afraid. I felt alone and scared and didn’t know where to turn. I was desperate to find information on how to cope, but very little existed. That is exactly why I decided to write this blog and why I hope that it can be helpful to others facing a child’s diagnosis.

What follows are some general things I learned along the way – from my own 10+ year journey with a child’s medical crisis, from working within the children’s medical illness field, and from talking with countless families facing similar struggles.

Make the best of it

When your child is suffering, it just sucks. There is no way around it. Your heart is worried and broken. That doesn’t mean that you can’t make the best of it. Remember especially that your child will read off of your emotions. The stronger you appear, the more peace and confidence he or she will feel. Although it’s hard, I promise you that joy can still be uncovered if you allow it. Some of the most tender moments can occur in a hospital. Reflections of beauty and wonder can be found anywhere. Try to remain open and positive. This small act can have a huge impact on morale for everyone involved.

Soldier On

Keep your chin up. Power forward. Keep on keeping on. While these little mantras may sound trite, they are actually quite applicable. You are faced with a traumatic ordeal. You unfortunately can’t change the diagnosis, but you can change and control the way in which you approach it. Know that you have it within you to persevere with strength and courage. Have faith in yourself. Yes, there will be days that you feel you just can’t handle it. Even in the best of times, those occur. But remember that you just need to soldier on. Give yourself a pep talk!  Maybe even create your own mantra. Just commit to caring for your own mental well being along the way.

Reach out to others

So many people care in these situations. Allow them to help. It’s good for them and it’s good for you. Those meals that southerners so often bring when a person is in crisis can do wonders. It’s not just the food. It’s a constant reminder that someone cares. Take people up on offers to provide assistance. It’s okay to lean on others for emotional and practical support.

Don’t give up hope

Hope is a powerful thing. Harness it. Remind yourself of it. It’s very easy to get drawn into constant worry about the future and what will happen. Before you know it, those destructive thoughts can take over. Whether through prayer, meditation or just positive thinking, hold fast to the hope that you will get through this, your child will get through this. Hope can provide you strength to carry on.

Build a positive team

At Memorial Sloan Kettering Memorial Cancer Center, an expert told me early in our medical journey to surround myself with positive and loving people. She said that now was the time to rid myself of unnecessary outside distractions. This was excellent advice! My team included family members, friends, teachers, church members, neighbors, ministers, doctors and nurses. Each and every positive or encouraging interaction helped in tremendous ways. Stay open to these influences. Welcome them to your team.

Take care of yourself

I have to admit, I failed miserably at this. I ate poorly. I slept poorly. I stopped exercising. I never took vitamins. I barely drank water. I’m pretty sure I only had water if Diet Coke wasn’t available. I was a mess. On top of the emotional drain that existed, I felt absolutely terrible on a physical level. I didn’t care. But now I realize that I should have made the effort to do better, not only for myself but for my child. I wish I had viewed this as a priority because it would have made me a better caregiver. Please consider taking care of yourself as you proceed.

Last but not least! Never waste a day

This one is HUGE for me! It defines my complete approach then and now. When I heard the words “your child has cancer,” I was devastated. I literally felt myself falling apart. And then something happened. In the midst of my sobbing, I thought to myself … what if he doesn’t have much time left… what if these are the last few weeks or months I ever have with him? It hit me like a speeding truck. Make the best of this time! Try to feel the love between you. Try to laugh each day. Try to celebrate every single moment that you can. I knew that if the worst were to happen, I would absolutely never regret taking advantage of the time that we did have together, even if it wasn’t the best of circumstances. This approach gave me a purpose. It reshaped our days. It helped me and it helped my son. No matter what the outcome is, better or worse than imagined, you will never regret this path.

Overall, it’s a day by day journey. But you have the power to control how that journey evolves. Fear of the unknown, anger, sadness, frustration can always creep in.  And that’s completely normal.  But always remember – You can do this. And your child needs you!

by Cindy Maynard, written with love and hope

I am the mother of three boys (including one brave cancer survivor, pictured below).  I am a lawyer, children’s medical advocate, crazy Kentucky basketball fan, and the president and founder of the Maynard Childhood Cancer Foundation.  Please visit http://www.helpkidswithcancer.org if you would like to learn more about our journey.

 

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