Reality Check

Whew...it's been awhile.  I have been blogging in my mind constantly but didn't realize it has been almost a year since the last time I actually recorded my thoughts. Something always stops me until the time is right I suppose.  So here I am again… looking at life and soaking in all the lessons it is teaching.  Tough lessons are being learned all around me. At the present time, I am surrounded by friends who are going through tremendous struggles that are remarkably similar to mine.  As I deal with life as a mom of a chronically-ill child, I am also watching several of my friends (who are more like my family) also living the same life, watching their own children suffer from various life-threatening illnesses.  I look around and see so much struggle and heartache going on and it is overwhelming, suffocating at times.  Not many people can relate to what this journey is like, which I suppose is why God has provided me with close friends who know all too well.   The normal response of people who aren't in this position is to say, “I can’t imagine what you are going through” or “I can’t imagine how you feel.” I can assure you, you can’t.  

Before we were thrust into the world of childhood cancer, I had NO idea what parents of sick kids actually went through.  I knew it must be very emotionally tough to see your child sick and figured it was financially straining to have to manage medical bills, but I had no clue of everything that is involved.  These things don’t even begin to scratch the surface of what it’s like.  There is not one aspect of your life that is left untouched or unchanged.  I thought I would give a glimpse of the “normal” lives of a family dealing with chronic illness by sharing some typical things that myself, my family and my friends’ families have dealt with or faced in the last couple years.  The quickest way is to make a list, although I will not even be able to think of a fraction of all the things that could be included…unfortunately.

•            Hearing the news, the odds, the stats, the prognosis

•           Telling your child the news, the odds, the stats, the prognosis

•           Watching them get poked with needles repeatedly, every week

•           Watching your child lose their hair and then getting it shaved 

•          Surgeries, biopsies, chest tubes, other tubes, drainage bags

•      Nose bleeds (sometimes lasting up to six hours), vomiting, mouth sores,          diarrhea, infections, sepsis, chemo, radiation treatments

•           Watching vital signs on a monitor praying they stabilize

•           ICU, ER, OR, PACU, TPN, NED, ID, IR, ALL, AML, DSRCT...huh?

•          Watching your child throw up everything they eat or drink

•          Test after test…waiting to see if the cancer has returned

•          Getting bad news…sometimes over and over

•          Watching your child lose so much weight that you can barely remember          what they used to look like

•         Hearing your child talk about death

•         Hearing them beg for help and you are helpless

•         Watching them lose their personality and everything it means to be             young, carefree and normal

•         Spending night after night  in the hospital (over 350 nights for us in                 16 months), away from your family and other children, sometimes missing     birthdays, Christmas, New Years

These things are heart-wrenching to watch as a parent…but I think these are the things that are more obvious to most people when they think of someone battling cancer or other terminal illness.  There are tons of issues that families of ill children deal with that are often overlooked because you don’t see them unless you are the ones going through it.  Here are just a few…   

•     Having one child begging you not to leave the hospital and another crying for you to     come home

•     Missing school and sports events as well as daily life of your other kids while you           care for your sick child

•     Being away from your spouse, the one person who is your source of strength as you       deal with everything in the previous list without them

•     Being the spouse who can’t always be at the hospital because you have to work and         maintain your household, trying to focus on work and worry about finances while           also worrying about your sick child and frantic wife

•     Dealing with the siblings and their reaction to all the changes in life and having a           sick sister, missing the absent parent

•     The whole family worrying from afar 

•     Having to take care of every need of a very ill child no matter how sick or tired you         feel yourself

•     Still having to care of yourself so you can be strong for your child when you don’t           have the time, energy or motivation to do so

•     Spending countless hours on the phone with all sorts of people: insurance, hospitals,     doctors, medical suppliers, pharmacies, making appointments

•     Filling out paperwork necessary for insurance and extra help, income verifications,       gathering tax returns, pay stubs, bills, etc. in the middle of all the other chaos

•     Fighting to get procedures or medications approved through insurance

•     Focusing on your spouse and trying to maintain intimacy when your mind is                   distracted and your heart is sad

•     Sleepless nights in a chair or waking up at all hours of the night to care for sick child

•     Putting all of your own needs and desires on hold indefinitely

•     Having to become a nurse overnight for your child, learning new skills 

•     Watching other families you have met lose their children…this is so tough

•     Being in the middle of something and having to drop everything immediately and           race to the hospital

•     Leaving for the hospital not knowing if you will be gone for a day, a week or a month     or more...not being able to plan for the future

•     Driving back and forth to hospital two hours each time over and over and over

•     Dealing with other people’s reactions to the situation you are in…Most think they are     being helpful but people say some of the craziest things to you.

•     Meeting everyone’s expectations of you as you travel on this journey…yes, people           actually expect you to act and react in a certain way even though they really have no       clue what you are actually going through. 

•     Trying to focus and enjoy normal things in life even though your heart is filled with       worry, anxiety, and fear

•     Trying not to be filled with worry, anxiety and fear because you know that, as a               Christian, is what you are supposed to do

•     Trying to make sense of it all spiritually, especially when you pray for help and                healing and things only get worse

•     Finding the positives even in the worst of circumstances so those around you don't         lose heart 

Do I list all these things to gain pity or a pat on the back? Absolutely not. I am not choosing to walk this path of childhood cancer; it was chosen for me.  I deserve no credit or special recognition for the things I have endured. I tell you the stark truth so that you can have an inside look at what really goes on.  As I said, these things are just the tip of the iceberg.  I tell you these things so that compassion for others would increase.  So that we would all learn to get out of our comfortable lives with our trivial problems and get in the trenches with those who are suffering.  Being part of the “cancer circuit” and also having close friends who are walking this difficult path, I know that these issues are not unique to my family. I talk to families every day at our hospital that are experiencing these same struggles. I have sat and cried with my close friends in the last day as we talked about disease progression and dealing with the reality of our situations. People need others during these tough times.  Yes, we need people praying for us and our children, but we need friends, family and fellow Christians to provide real, tangible love and support.  

As I spoke about in my previous blog entry, I have learned throughout this journey  to see a purpose for what is happening and am able to find a silver lining most of the time.  Just as I have made a long list of all of the tough aspects of the cancer life, I could easily make a list of all of the blessings that have become apparent in the midst of this trial.  Aside from all the amazing people whom I have had the pleasure of crossing paths with since this all started, I am a different person now than I was on May 9, 2013 (the day before diagnosis).  In the future, I plan to write about Christian suffering and what God has showed me through it all.  Although I am so appreciative of what He has taught me through cancer, I pray that it would not take getting cancer for people to learn how to love others and put that love into action. I pray that we could learn how to share in each other’s burdens and take time to help those around us who are struggling.  I find it amazing that the people who ask me most often what they can do to help are my friends whose children are also chronically ill.  Having a plate that is already overflowing, they are still willing to give what little time and energy they have left to help me out.  I pray that we would all learn to be like that…

I challenge anyone who reads this.  Read and re-read the lists I wrote down in this blog.  Instead of saying "I can't imagine how you are feeling," take a moment to try.  Think about how you would feel going through these struggles with your family. It is exhausting, emotionally, mentally and physically and is often a very lonely time.   It is not just families battling cancer that need help.  People everywhere have needs.  Everybody has a story.   I don't write about this so that someone will help my family but so that I can also refocus on helping others.  Being in the midst of so many suffering people makes it so incredibly apparent how great the needs are of those around us.  A popular response is "let us know if we can do anything to help." I have said this many times thinking I am being kind by offering to help but now I realize that it is unlikely that people are going to call you and let you know what they need.  Pray about what you might do to reach out to a family or a person who is hurting. Be practical.  What could you do to make their lives easier, to relieve their burden even a little? Cook them dinner? Mow their grass? Buy them some groceries? Babysit to give them a break? Pay their electric bill? Clean their house or put up their Christmas lights? At the very least, be more kind and patient to those you encounter each day.  Change your reaction toward others. Take time to slow down and listen to people.  Spend time with others without being distracted.   Use the resources and blessings God has given you to pay it forward.  Christ called us to love and serve others.  Instead of just praying for their needs to be met, go meet their needs.  Look around you.  Be His hands and feet. Thanks for listening...God bless. 

“Bear one another’s burdens, and so fulfill the law of Christ.” Galatians 6:2