The good, bad and ugly of coping with a child’s serious illness

Preface:  I have been wanting to write about these topics, but have been resisting because I didn’t want to sound like a complainer or overly dramatic.  Just recently, though, my oldest son (the cancer survivor) said to me that I shouldn’t sugarcoat what this situation is really like.  He talked about how important it is to be honest if we want to truly connect or inform.  This boy of mine never ceases to amaze me.  So I am taking his advice and truly opening up. 

Life can be wonderful!  But let’s be real.  Life can be fairly complicated and messy as well. Add in a serious childhood illness and it’s a whole new reality.  You still have to juggle every day life – family, finances, career, friends, school, emotions, household, and more.  The earth keeps spinning, but your life has a new dimension.  There is a deeper issue now.  One that you never thought would happen to you.

Truth be told, I think I changed forever the day I learned that my son had cancer.  Nothing was ever the same again.  I was never the same again.  Since that day, more than 12 years ago, I’ve been facing an unending array of emotions that include worry, fear, anger, frustration, sadness, bitterness, jealousy, and uncertainty.  That’s not easy to admit because those are not very pretty things.  At the same time, I’ve been trying to smile and hold my head high.  Keep it all together.  Stay positive.  For the most part, I’ve forced myself to see the good in things and create a happy daily life for my kids.  I’ve written already about how important it is to be a joyful, approachable and safe haven for your sick child (and other children).  I even try to go out of my way to create joy when things are hard.  It’s not easy, especially because there are so many unhappy things going on, but I wouldn’t have it any other way.  I will always keep trying.

I wanted to write this blog because I realize that in all these years, there are many things I’d like to say to people in my life and the community as I’ve struggled with my son’s medial diagnosis and care.  These things are personal to me, but I imagine that a lot of parents with sick children have some of these feelings as well.  No matter how people feel,  I encourage sharing with others.  There is something very healing about opening up.  And I think you’ll find that people are receptive and want to understand.  I’ve come to learn that there is absolutely no right or wrong way to handle a child’s serious medical condition.  We all do the best we can.  And the most important thing is to support one another.

For my own sake, but also to just alert people to some of the issues facing parents of seriously ill children, I wanted to say a few things that I’ve always want to relay.

PLEASE BEAR WITH ME!

The emotional task of caring for a child with a serious medical illness is indescribable.  Don’t we all just want our kids to be happy and healthy?  That’s what it boils down to.  That is the most important thing to any parent.  When these two crucial elements are threatened (happiness and health), especially on a long-term and consistent basis, it takes a huge toll.  As mentioned, every single day I try to be positive and upbeat for myself and my family.  There is an absolute sadness behind my smile though, almost at all times.  There is a very true saying- A mother is only as happy as her saddest child.  Some days are better than others.  When a child is dealing with cancer care (or any serious illness), painful side effects, constant fear of cancer recurrence or other medical issues, missing out on every day activities, falling behind in school, coping with sadness or stress, the parent carries the burden as well.  It’s especially hard to sit back and just watch all of these things happening.  Your protective instincts want to make it better for your child, but you can’t.

WHAT IS HAPPENING?

So many times I have thought of the situation as similar to grieving.  There are definitely different stages.  I think every parent goes through some form of shock, sadness, anger, frustration and helplessness.  I assume at some point the stage proceeds to acceptance, but I’m still waiting on that one.  It feels impossible to reconcile how something so tragic and hurtful can attack your innocent child, especially when it’s for a very long time. I wrestle constantly with how this can happen.  How do you begin to understand?   If you see me at a time where I seem withdrawn or sad, please understand that it’s quite possible that I have been struggling with some aspect of the trauma facing my child.  Even when a child is not currently undergoing intensive medical care or hospitalization, there are so many physical and emotional side effects that continue on.  Some days are just very hard.  They are hard for my son and for me.  We don’t talk about it constantly, but there are almost always some side effect issues lingering, not to mention concern about upcoming medical needs.

TRYING TO COPE

One of the ways I have tried to make sense of it all and cope with the frustration is by trying to help others facing medical battles.  You can’t ever change the fact that your child has been given this difficult fate (nor possibly ever understand it), but you can try to make it better for him and for others.  At least then you are doing SOMETHING.  It’s a bit of a tonic for the otherwise helpless reality that you can’t take away your child’s diagnosis, pain or emotional struggles.  It’s also a way to give back when you feel like so many people have gone out of their way to help you.  It’s truly a gift to be able to relieve some of the burden for others in the depths of difficulties.  That is why I created the Maynard Childhood Cancer Foundation and Jake’s Reindeer Race.  To this day, everything we’ve done under those umbrellas has helped ease the sadness in some way.  And hopefully it has helped others as well.

THANK YOU!

Another huge thing I want to say is thank you!!  Thank you again!  I couldn’t say it enough.  The kindness, concern, care and help shown to me and my family has been overwhelming and extraordinary.  Not a day goes by that I am not thankful for every single act of kindness, even just a smile or “I’m thinking of you”.  It truly envelops my heart.  I don’t know how we could have made it through everything without the love and help from so many.

I’M SORRY!

Along those lines, though, I’m distressed that I haven’t been as good as I’d like about expressing my gratitude.  I have been remiss about sending formal thank you notes quite often.  I know I should have done a better job and if you are somebody that didn’t receive one from me, I’m very sorry.  My appreciation for the kindness shown is truly huge, but my energy reserves are not always there.  My mother in law is always so good about sending thank you notes and expressing gratitude.  She even preached a sermon about it a few weeks ago.  I sat cringing in my pew seat once again feeling guilty for not being as diligent as I should have been.  Please know, however, that I feel thanks to my core for all of the acts of love that I (we) have received.

DIFFICULT EXPECTATIONS

Believe it or not, there are some expectations that seem to exist for patients and families enduring a serious medical illness.  Perhaps these are self imposed expectations, but they exist nonetheless.  Our world seems to celebrate people who rise above challenges… they become the stars of movies, the heroes of literature, the subjects of inspiring news reports.  I’m the first to agree that anyone who can persevere with courage, strength and positivity deserves praise.  Unfortunately, this reality has always caused me to feel that I must rise above my son’s medical challenge with a smile on my face at all times.  I fear that others facing similar situations might feel it as well.  Maybe it’s not a bad thing though.  Maybe those enlightening stories show us that we can make it through.  But it’s hard sometimes when you feel that you have to always stay strong.

IT’S COMPLICATED

Sure, life is no longer “normal”, but it’s our normal.  There are doctor appointments, surgeries, tests, ongoing pain, sleepless nights, intense worry, missed school, missed time with peers and normal activities, required medications, therapy … you get the idea, plenty of things that don’t fall into a regular normal childhood.  This doesn’t even include the difficult impact it all has on other siblings and how those sweet children need additional attention as well.  So what do we do?  I have tried to take advantage of every good opportunity that now comes up.  I don’t know if I’m trying to make up for lost time or simply appreciate what’s now possible.  Either way, a new door has been opened.  I try to make sure we celebrate our lives.  We accept more invitations, go to concerts, open up on social media, connect more with friends, knock off bucket list items, take more vacations, and generally try to live life to its fullest.  Life now feels more fragile.  Health and longevity are not a given.  In turn, that has made me want to fully appreciate all of the love, opportunities, and potential for adventure that come our way.  These things also help fight the underlying sadness and make a positive attitude more possible.

It’s a big, complicated mess.  There is good, bad, and ugly.  I suppose that’s true about life in general.  I have learned that it’s important no matter what we face to stay connected with one another, be real with our feelings, support others who are hurting, and keep fighting against those darker days.  Even when there is suffering and sadness, it’s crucial to keep searching for the light.