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Breck's Thoughts: Happy Birthday and Get Well Soon

Tuesday, September 28, 2010

{EDIT: Bennett's doctors still feel his symptoms point to a virus.  However, a stool culture and C. Diff. test may show otherwise.  Unfortunately, we won't likely be getting those tests results until Thursday - Bennett's first birthday.}

I had another good cry a few days ago.  It always feels good to cry. 

Bennett was on day 3 of being sick (we are going on day 6 at this point) and we were getting more concerned that it wasn't just "normal" baby sickness. 

Bennett's old symptoms had come back - vomiting/not tolerating his feeds, abdominal pain and overall irritability.  Add to that: fever, mucus-y diarrhea and rectal prolapse.

So much of me wanted to say, "It's nothing. It's normal. Kids get sick.  So what?"

But, despite my greatest efforts to reassure myself, something inside me felt these symptoms were classically Bennett-CF-ish and needed greater attention to them. 

We had been to the doctor a few days before and were concerned we should go again.  The last thing we wanted was to waste our time for another appointment just to be told "it's nothing."  And yet, the worst thing would be for Bennett to continue to suffer should something really be wrong.

Should we go to the doctor again?  Are we missing something?  What if it's serious?  What if it's not?  What does this mean if he's sick?  Are we at the beginning of another few months of sleepless nights and a child in pain?

It was just all too difficult to handle at once.

The day before, we had missed taking him to get his first year birthday pictures in Austin.  We knew we faced missing an anticipated date night to the Symphony on Tuesday (which we did miss, by the way).  And we knew that Bennett will likely miss his own birthday party later this week if he doesn't get better soon.

I was sad that things were being cancelled.   But that wasn't the reason I cried.

I cried because, in the midst of this new stress, I was grieving.  Only one year ago this week, similarly, our plans were being changed and doctors were being called - Bennett was being born sick. 

We have learned that, unlike Oliver, when Bennett gets sick, it seems to cause a fundamental shift in our family and schedule.  We can't go anywhere and everyone in the family hunkers down for a long road.  For Bennett just doesn't seem to get "kinda" sick.  His illnesses always seem to last longer, be more serious and caused him more stress.

Sometimes I think it's wild how nuts Brian and I both get over Bennett being sick.  Why can't we just calm down and allow it to "run its course," I wonder.

I have recently realized there are several reasons why Bennett being sick - even for minor things - is so overwhelming to us:

First, it brings back recent memories of frustrations, hospitalizations, additional medications and doctor's visits.  All we have really known, so far, about Bennett being sick has been that it has been very serious.  So, like Pavlov dogs, we become immediately alarmed when we find Bennett showing symptoms of illness.


Second, we are very well aware that, with CF, that which is benign can turn into something serious.  And that which seems serious, can be very benign.  With Bennett, a cold can be just a cold, or can be pneumonia.  Diarrhea can be the stomach bug, or can be a blockage.  Weight loss can be nothing more than that, or an admission to the hospital.  Symptoms can either be very serious or completely unconcerning.  It's terribly hard to know which is which.

Third, we sometimes feel like nobody is in control over Bennett's health care.  Three of Bennett's specialty doctors live two hours away so its not very feasible to jump in the car and come in for a quick sick appointment.  And despite that his Pediatrician is typically in town, this time, Bennett's Pediatrician is out of the office until Thanksgiving.  So, at this point, we are working with another Pediatrician who doesn't know CF very well, or Bennett at all.  It is very scary to be the "eyes and ears" for the doctors who are far away and to interpret all that we know for the Ped doctor who is trying to "catch up" on his case.  It can feel like nobody is in control.

Fourth, we are already worried alot regarding Bennett on a daily basis.  Adding other things can feel downright unbearable at times.   We are constantly wondering if he's gotten his enzymes, therapies, vest treatments, etc. on a daily basis.  We are always listening and looking for signs of illness (fast breathing, coughing, runny nose, etc).  Our schedules and routines are ever changing as Bennett gets older and his medications must be adjusted.  It can all be alot to handle within a normal routine of a day.  Adding sickness is not only inconvenient, it can be difficult to juggle on top of everything else.

The bottom line is, Bennett getting sick can be overwhelming.  And that's worth a good cry.

But my tears are usually the words I cannot speak.  They force me to a place where I must listen to my heart and feel my emotions.

My tears remind me that something matters.  The health of my child, the peace of my family and the excitement of life without illness matters.

But I live in a broken world where health and peace are not promised.  So, I grasp to what I know about God even more during moments like these.

My favorite Bible verse as a little girl is still the one I know by heart the most today.  And its the one I am using remind myself that I don't have to be in control all the time:

What time I am afraid, I will trust in You.  Psalms 56:3

I know Bennett will get well soon, one way or the other, I just wish it wasn't so downright painful.

2 Responses to “Breck's Thoughts: Happy Birthday and Get Well Soon”

  1. I'm sorry to read Bennett is sick, I hope it will be something they can treat and that he will get better soon.
    First birthday! WOW, Congratulations Bennett you are 1 year old tomorrow, that is a fantastic milestone to reach.
    Sara had her 1 year control at the CF-center yesterday. She had lost some weight, but stretched about 3,5cm :) We got some new directions on our feeding problems and are told not to stress the food down even if she lost some weight, she is on the 25% percentile and they are not worried. So now its just up to us to stress the food down a little. She is still getting her tube feed milk on a bottle, and that is probably what is keeping her weight sort of under control. They mentioned the Mic-Key button again, but we will wait. Sara is on two different antibiotics because of a cold shes had for 4-5 weeks so they did not take the obligatory larynx expectorate sample.
    Get well soon Bennett and HAPPY BIRTHDAY!

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  2. Being a mom is hard, and having a sick kid is really hard. Crying is sooo important and liberating. Know that lots of prayers are being said for you guys and there is an end in sight!!

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