This Wasn’t In Our User’s Manual

When you are told your child will be going through a minimum of one year chemotherapy regiment, you would think you would get a User’s Manual to help you through the journey or at the very least, a road map.  Well, they do give you a three-ring binder but you quickly find you are pulling out the provided pages and filling it with your own findings, medical journals, prescription regiment, and the like. Six months deep, we are starting to realize there are many things we were not warned about.  Sure, a social worker came and talked to us for about two hours before being discharged from the hospital and in Alabama, we had a personal social worker that would meet with us every visit–to, at the very least say, “hello” and to see how things were going.  They warned (or kindly advised) us of many things.  Many things, however, were left unsaid.  Feelings of distance, selfishness, how you will react to what people will say, what they will ask, or how they stare, and your your sudden willingness to chose sleep over eating  were all things we never even thought about until we were staring them in the face.

Well, now we are “settled” into our new lifestyle and we are starting to become aware of things we were not prepared for or warned about.  Let me be clear in saying that the support we have received has been nothing less than amazing.  We have received support in places we knew we would:  family, friends, church, and social groups.  Additionally, we have received support from places we never imagined:  friends of friends whom we’ve never met, churches who have in some way heard of our story and write us to let us know Mac has been added to their prayer list, and even complete strangers offering to do fundraisers.  It is hard–knowing your son is fighting a disease to which there is no known cure.  There’s not a shot, not a pill, and because it is an orphan-disease, little to no government funding is set aside to do any research in effort to find a cure.

With all these gifts of charity also comes the gift(s) of awkwardness.  The gift of space comes first to mind. Yeah,  I don’t think I’m a fan.  I told my husband a few months ago how I’ve noticed some people are overly apologetic when discussing their own day-to-day lives and feeling the need to say, “but I know it’s nothing compared to what you are going through.”  Let me be clear.  It’s not a contest.  Sick children, whether it be a runny nose, a bump on the head that leads to an ER visit, or just a child who put on their cranky pants and decides to wear them three days straight, are all things that can test any parent’s parameters of normalcy.  Additionally, these are all things that can lead to sleep deprivation for ALL parties involved.  And let’s face it, sleep deprivation is sleep deprivation any way you slice it.  We (you and I) are parents and we never like seeing our child uncomfortable.  No matter the cause, we want our children to be healthy and happy.  Just because our son has LCH doesn’t mean you can’t talk to us about how allergy tests made your child miserable, or how they are a picky eater, or the fact they’ve had a runny nose.  Even before Mac’s diagnosis, I would cry when taking the kids to the doctor and they would cry just having to stick out their tongue  to say “agh.”

The gift of space has also come in the form of, “I just don’t know what to say.”  Here’s the catch:  you don’t have to know what to say.  And if I’m honest with myself, even if you did know what to say, the odds are pretty good that I wouldn’t know what to say and would just start crying on your shoulder like a pre-menopausal broad watching a Hallmark Special marathon.  If you know us personally or know someone going through a trying time, just let them know you are thinking of them.  This is a gift which is free—doesn’t cost you a dime—and is a gift which has more weight to it than you could ever buy in a store.  It is a gift that can completely alter someone’s day for the better.  The power is in your presence, though it may not be a physical presence, you are still “being there,” for the people you love and who need you.  You don’t have to have an answer, you don’t have to say the perfect thing.  You being there is where the perfection lies.  I am often amazed how when fighting feelings of being overwhelmed or slightly psychotic it is at that very moment I will receive a text, email, or a card in the mail simply stating, “I’m thinking of you.”  And it is at that moment I take a deep breath and take that strength, that encouragement, to get me—to get us—through another day—getting us one step closer to having this behind us.

Another thing I have become very aware of in the past weeks are my feelings of selfishness.  Though I think it is 100% natural for a mother to pray (in earnest) for her child’s health and recovering, I am combatting feelings of praying a selfish prayer.  There are people who are sicker.  There are people whose survival rates are significantly lower, or terminal for that matter.  There are people with little support structure—personal and financial.  I was raised to pray, “if it’s in God’s will.”  Hmmph.  That’s kind of a copout when you think about it.  The doctors don’t have a cure but God is in control. There have been times when doctors have provided incorrect information, they’ve prescribed incorrect doses (that one was a little scary).  By praying in “God’s will,” it’s almost as if I’m saying, “I want him to be okay, but if you don’t want him to be okay, I’ll try to understand.”  When I’m praying, “dear God, please, please, please heal Mac,” it’s almost as if I’m questioning God’s ability to heal my son.  I know many of you may not have faith in God but faith or no faith, I think if your child is facing a long-term, life-altering disease you will be forced to reexamine a mightier power.  Yes, you can see science.  You don’t have to “believe” in it because it is there.  There is proof.  But ponder these phrases if you will:  “Your son is my first LCH patient.  There is no known cure.  Funding for research is minimal.”  So yes, I take my comfort in knowing that God knew Mac before he was born (Jeremiah 1:5), despite the doctors not knowing his name even after looking at his chart before walking through the door.  I take comfort in God having the power to heal all disease and affliction (Matthew 10:1).  And as far at little government funding, though it would be nice, I cannot even trust to government to deliver my mail properly so why would I entrust them with the life of delivering my child through a horrific disease?!  Rhetorical question.  No need to reply, “my dad was a postman.”

Do you know what else was not in the binder?  This equation: a (how much sleep you will lose) + b (how many fewer hours you will be sleeping with your spouse) and c (= a minimum of 2 to 4 cranky family members on a daily basis.  There are many nights, especially the past 8-weeks or so, we find ourselves sleeping in the floor of our son’s room as he struggles to find some comfort among the thrashing and cries of pain in effort to get at least a couple of hours of sleep.  My husband and I get very few hours of sleep in the same bed.  And yes, I mean real sleep—not the Hollywood version of “sleeping together.”

So what’s the point of this post?  Simple.  I must “trust in the Lord with all my heart and lean not on my own understanding” (Proverb 3:5).  I don’t need to understand why people feel the need to keep distance.  I don’t need to feel selfish in prayer and struggle to find the words when God knows my heart.  I don’t need to worry about my temporary physical discomfort when my son is fighting a much harder battle.  I don’t have to enjoy the ride but I can’t get off.  Even though I have feelings of “I’m done.  I don’t want to do this any more.  How do people do this for years on end?,” I have to accept it.  I have to let it define me and redirect me.


5 thoughts on “This Wasn’t In Our User’s Manual

  1. Annette and I took a detour to Fatima and said some prayers for Mac. We are back on Cape Cod taking care of our new grandson Connor before we head back to Florida. Keep the faith we are thinking of all of you. Bob and Annette

  2. I found your blog through “Our Histio Family”. I have a 13 year old son who was diagnosed with LCH in July 2013. We are fighting this same battle and I just wanted to let you know we will be praying for Mac as well. While our road is difficult too, I can’t imagine dealing with LCH with a baby who can’t express how he is feeling. We are located in Alabama. We live close to Troy and travel to Birmingham often for chemo.

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