Just Another Boring Night at Home

It’s a phrase you hear uttered, often in breathy and exasperated annoyance by someone wishing they had something glamorous or adventurous waiting for them outside their door.  The monotony of the mundane in which they view their lives has worn them down, and their restlessness and agitation lies in the fact that they perceive that they aren’t being stimulated beyond their daily routine.

We all want excitement, newness, and even some grandiose experiences from time to time to spice up our lives, which we so often tend to regard as boring.  There’s nothing wrong with wanting to alleviate the tiresome and repetitive nature of our daily lives.  Functioning out of obligation and expectation will wear on anyone over time, but if you can’t rejoice in the monotony of the mundane, what makes you think you deserve the extravagance of the extraordinary?

It’s so easy to say that we shouldn’t take anything in our lives for granted, that it’s practically cliché.  To say that we never know when we will lose something important is again clichéd.  And for as true as it is, it’s hard to remember sometimes.  We all know it logically, but it can difficult to put into practice.  It’s an exercise in perception.  Do you choose to focus on what you do have, and relish in the joy of your blessings?  Or are your so negatively focused, complaining over that which you do not have that you completely forget to acknowledge the good fortune you’ve already been rewarded with?  If you tend to lean toward the latter, you may unfortunately be bringing about the dissatisfaction in your own mind with your very mindset.

“I would give anything for a boring night at home.”  My cousin’s husband spoke this simple sentence to me last weekend as I visited them at the respite center of the children’s hospital where their six-month old son lay in a room fighting for his life.  Attached to a ventilator and fitted with a chest tube, he was stricken, not only with rhinovirus, and parainfluenza, but a very rare blood disease known as Hemophagocytic Lymphohistiocytosis (HLH)  as well.  As of right now he is undergoing chemotherapy, but may also need a bone marrow transplant in the near future.  To say that these last few weeks have been difficult would be a vast understatement, and sadly, they have been anything but boring.  I know, first hand how my cousin feels when she and her husband wish for a boring night at home.  I know how she feels to watch helplessly as her child fights for his life.  And I know how hard it is to stand by and not be able to lift a finger to help him in any possible way.

Talk about a change in perspective.  It’s impossible to concern yourself with anything else when facing your child’s fight for his/her life.  Noting else maters.  All the shamelessly unimportant details in life melt away.  You never care if you ever go on another fancy vacation, or eat at an expensive steakhouse for dinner.   You don’t need elaborate gifts, new clothes, material possessions, or nights out on the town.  Your only want is for your child to live, and if you had to crawl into a cardboard box and live out your days without a penny to your name you would gladly do so if it would save your child’s life.

Astoundingly, people may be unreasonable, unkind, and even unsympathetic to your plight.  Even those who are closest to you, those you expected to be there for you and for your child in a situation of such magnitude, but it doesn’t matter.  Suddenly you don’t have the time or the energy or forethought to worry about them.  Those problems are too minute, too boring, and before you know it your life is anything but.

I felt helpless for Debbie and Travis as we sat in the inpatient waiting room taking turns, two at a time visiting baby Jaxxon.  No one ever expects to be in those shoes.  No one can ever plan for being in those shoes.  It’s complete and total blindsiding being hit by such a monster.  At six months of age, no one ever expects a seemingly healthy baby to suddenly be in a fight for his life.

Since being whisked from the E.R. and processed into an inpatient, baby Jaxxon has been completely incapacitated.  He has been put on medication that causes temporary paralysis as well as heavy sedation.  Three days ago, as the doctors attempted to take out his chest tube, his left lung collapsed, and set him back even further.  He began his chemotherapy last week and will have two rounds per week for eight weeks.  If the medical team can get the HLH under control and stabilize his breathing, they can begin to treat the infections with a heavy dose of steroids.

Jaxxon is most certainly not out of the woods yet, but his care team is keeping a close watch on him and helping him make it through all this.  He’s just six months old I kept thinking to myself.  So young and so seemingly healthy.  My knee jerk reaction is to say that I “can’t imagine what his parents are going through”, which when said, more accurately represents the fact that the subject does not want to have to understand.  The thought of something happening to your child is so appalling that you can’t even force your mind to go down that path.  Unfortunately, to some extent I can imagine.

Debbie said to me that she has so much respect for me as a mother for what I went through.  She also told me that now she realized what it feels like to see you child struggling with such a horrific circumstance.  My heart ached deeply for her.  I knew she meant these words above and beyond mere platitudes.  She felt them in her heart because it’s true, you just can’t understand the tribulation and the feelings of helplessness unless you have lived through such an experience yourself.  I just prayed that she will never have to know the extent of the hurt and pain that I live with every day.  I told her that we have hope for Jaxxon, and that’s all we’re going to focus on.

Jaxxon

If you’d like to learn more about baby Jaxxon and his fight, or to donate to his family’s rising medical bills, please do so here:
http://www.gofundme.com/savingbabyjaxxon

If you know someone facing an extreme medical issue some ways you can help are to:

1.  Offer.  The person needing help usually won’t ask for it.  Bring a meal, do laundry, babysit, run errands, set up a medical condition website site to notify people of what’s going on, etc.
2.  Don’t back away because it’s hard for you.  That doesn’t help them.  It’s a slap in the face.  It’s hard for them too and they don’t want to be in their shoes either.  Just say “I don’t know what to say.  I’m so sorry”.  It will mean more than you know.  Don’t make excuses.
3.  Include them.  Don’t assume they don’t want to know about your news, good or bad that you would otherwise share with them.  They want to remain in your life and care about what is happening to you.  They also may welcome the change in topic from their issues.
4.  Be Respectful.  Check in often, but if they want space, give it to them when they need it.
5.  Listen.  Don’t try to “fix” the problem yourself, just listen if they want to open up and vent.

 

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