19 July 2013

Response to a Reader's Comment

"I hate to be harsh but I have CF and what you should have done was have your whole family not go in the cave. Sure Oliver would be upset but that is better then Bennett feeling like a diseased boy. I at one time wanted to scuba dive more than anything. Unfortunately my CF made that extremely dangerous so I was told I could not learn to dive. This made me really upset and if my sister got to go but I didn't I would be mortified." 

This is the comment recently left on my post

I appreciate hearing many perspectives, particularly ones from those who have Cystic Fibrosis. Since I don't have Cystic Fibrosis myself, I recognize my limitations of knowing firsthand what it's like for my body to suffer daily from CF day in and day out.  So, I think hearing from those who must battle CF every day can be very insightful, this comment included.

As I have thought about this perspective of someone with CF, I have considered more about why Brian and I made the decision we did - and my unique role as not just the parent of a child with CF but also my unique role as the parent of a child with a sibling with CF.

For what it's worth, I decided to write more about the difficulties that come with maintaining balance in our family and how we have, up to this point, made decisions regarding these Cystic Fibrosis challenges.

1.) The first thing I would like to share is - Parenting comes with no parenting manual.  And Parenting a child with CF certainly doesn't.

Possibly Brian and I could have made the wrong decision when we let Oliver go to the cave but did not let Bennett.

However, this decision, right or wrong, was not made without serious reflection.

The last thing I would ever want would be to hurt either of my sweet boys.  As a parent, it's excruciating to have Cystic Fibrosis even have be a part of our decision-making process.

I think when considering any significant decision in our family regarding Cystic Fibrosis, Brian and I have to be very clear with ourselves and each other that our decisions could be judged by others as being the wrong ones (we may even come to that conclusion ourselves some day), but we need to be gracious with ourselves that they were intentional ones.

No big decision we make on behalf of Oliver and Bennett and their unique needs is made without intentionality.  Knowing this gives me the confidence that it's not my job to parent perfectly but to parent with the tools, insights and experiences I have been given.  That's really all I can do.

2.) The second thing I'd like to share is a response to this line in the comment:
"Sure, Oliver would be upset but that is better than Bennett feeling like a diseased boy."

I absolutely agree that there is nothing so important that it is worth having either of our children ever feel "less-than", "unwanted" or "unacceptable."

No child with person should ever be made to feel like they are not good enough - whether it be something they lack in skill or whether they be challenged by a disability.

And, within my control, I take great pains to make sure neither of my kiddos would feel this unnecessarily.

However, I'm not sure that I will ever be able to protect my kids from feeling left out or feeling hurt because of what others have said about them or because of what others have been able to do that they cannot.

This isn't a CF thing.  This is a human thing.  Life brings each of us situations where we have or will one day experience grave disappointment, loneliness and sadness over not being able to do or have something we really wanted.  I don't have CF but I know it's like to feel like a "left out" girl or a "less-than wanted" girl.  I'm not sure if there is really a way to prevent Bennett from feeling those very natural and normal human feelings.

So, this is why Brian and I feel it is not necessary for us to ignore the truth with regard to Bennett: Bennett is, in fact, a diseased boy.  He has Cystic Fibrosis.

That's not all that Bennett is.  But that is certainly a part of who Bennett is.  It's not something to be ashamed of.  It's something we must all acknowledge and address, for better or worse.

I believe there is no reason for Bennett to ever feel left out, unwanted or not special.  But we will never be able to take away the fact that God gave him Cystic Fibrosis.  This disease is a part of his life, as well as ours.

For us, embracing the benefits and limitations of having a progressive disease is choosing to accept fully the way one is made.  Brian and I have always felt, from the beginning, there is no reason to hide Cystic Fibrosis.  Instead, we want to acknowledge this is who Bennett is and we love him just the way he is.

Bennett has CF - it's clear by the g-tube he wears on the outside of his body.  It's clear by the enzymes he must take at school during snack and lunch.  It's clear by the activities that we must cut short or not participate in because he must come home to do his treatments.

We won't ever get around the fact that he is a little boy with a serious disease.

However, I agree with the sentiment of the commenter that no one with Cystic Fibrosis should have to feel like that is *all* they are.  And, as a family, we always do things that balance Bennett's need to be healthy with his need to feel accepted.

We made sure Bennett did not suffer needlessly on the day we went to the Cavern.  Fortunately, going to a cave wasn't Bennett's big wish.  He was just more than thrilled to get to do something Oliver was "over the moon" about.  Bennett's excitement came from the fact that our entire family was excited.

So, to my relief, when I asked Bennett if he would rather to go a toy store and pick out a super hero toy instead (Bennett LOVES superheros), he was overjoyed.  In fact, Brian and I think he was much more excited about the new blue Superman toy he got to bring home with him than he would have been had he gotten to see the cave (that's the way 3 year olds work, I suppose :)).

And ultimately, it turned out later that the cave would not have been something Bennett (nor I) would have wanted to do - not because of CF but because he is 3 and because I'm 9 months pregnant.  The walking Cave tour included included walking more than a mile and at several points was very slippery and dark.  It seemed like for such a little guy, it could have not been much fun.  And I know I am thankful not to have had to walk a mile while carrying this baby around. :)

3.) The last thing I'd like to share is that sometimes decisions in one situation look different than another.  I'm not sure Brian and I would make the same decision for our family, with regard to only Oliver and Brian going into the cave, if our children were ages 10 and 12 or 15 and 18 (instead of 3 and 5 as they are today).  The decision we made for our kiddos and for our family was based on what we felt comfortable with knowing the personalities of our boys and their cognitive and emotional awareness of the world around them at that moment.  Certainly, had the boys been in junior high or in high school, the decision may have been different or may have been handled differently.

But we feel that, in the same way that Bennett has limitations and will have to learn to live with those limitations, we don't necessarily want to hold back Oliver from doing what he can do.  I am confident he will have his own limitations in life to overcome.  And I cannot think of anyone more perfect to help him address the disappointment of limitations than his little brother who is learning at an early age how to overcome challenges and see himself beyond his diagnosis.

In conclusion, I will share that, thankfully, while CF did affect our family's decision to have all of us visit the inside of a cave, CF by no means took away the enjoyment we shared as a family on that little trip to Austin that day.  We were all each able to visit the Cave store, buy a few rocks, eat ice cream together and even mine for gemstones while we were there.  All four of us were thankful for the opportunity to be with each other and had a great time sharing in the experience, even if it did looked a bit different than we had first expected.  I'll share pictures of our time in the next post...

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