24 September 2012

Our School Routine + CF

Not too long ago, a CF Mom asked a question to a CF forum on Facebook about how other families deal with Cystic Fibrosis treatments and school.  I thought I would share a bit about our routine and how we have learned to handle the additional stress of caring for CF while also being on time for school.  I would love ideas from other families - of ways to make the morning go more efficiently!  

Here's what we do...
In the morning, clothes go on first.
Our rule is you must get dressed before you eat.  We have found that hunger is a very good motivator in the mornings.  So, we ask that both boys have their clothes on before breakfast.  (This also allows for us to run out of the door and eat breakfast in the car should our morning turn out to be a rough one.)

The boys share a bedroom.  So, I hung little hooks on the boys doors where I will place their school clothes each night.  That way, dressing for the day is much easier for them as well as for Dad who helps dress them.  I will often do this on the weekend as well.  It cuts down on battles on what to wear because the decision has already been made then night before.

I hang their clothes on a single hanger (looping their shorts/pants through the hanger) and stuff their socks and underwear in their shirt.  They have a basket where they keep their shoes so those are easy to find as well.  From my experience, locating items for school is half the battle so we've learned how to counteract that.

Breakfast is fast.
I probably won't win the "best mom" award in the breakfast area as we allow the boys to eat poptarts, donuts, cereal and cinnamon rolls.  But the morning time is limited so we prefer quick breakfasts.  The nice thing is most of the items we eat in the morning, the children can get themselves.  So, this saves time.

Lunch is made the night before.This is a hard routine for us to get in to.  But we have tried to be consistent with making sure backpacks are filled and lunches are packed the night before.  (Bennett has a bottle of enzymes and a small pouch of apple sauce that stays at school on the teacher's desk.  This prevents us from forgetting them in the morning.  The teacher administers the medication at snack and lunch.)

Treatment must start 30-45 minutes before time to walk out of the door.
Brian is a rock star at this one.  Each morning, while I am still getting ready for the day, Brian sits with Bennett to watch morning TV while he does his breathing treatments and percussion therapy.  We try to make sure Bennett has begun his therapy at least 30 minutes before we walk out of the door so that we provide plenty of time for crying, whining and an overall need to coax him in to treatments.  Fortunately, he's usually compliant.  

Shoes go on during treatment time.
Oliver enjoys getting to watch TV with Bennett in the morning.  During the last 5 minutes, we put shoes on.  Once treatments are done, we're ready to walk out of the door.

Ultimately, treatments come before school, even if that means we're late.
Since both boys are in preschool, we can prioritize treatments over school.  So, we know that should treatments take longer than expected, we will be late to school.  But, our goal, as a family, is to use these preschool years to "practice" juggling CF treatments and

Daily medications are given at night, if possible. 
Whatever we can not do in the morning, we don't.  Morning time is limited and we'd prefer to use any extra time to sleep.  So, daily medications are given at night.

We do the same thing. every. day.
This is the thing I feel like I have learned about the importance of caring for a Cystic Fibrosis child, if I don't do the same thing every day, I forget.  We have many times forgotten to do treatments on a Saturday as we'll tend to want to sleep in and get out of our schedule.  So, I feel like the best way to care for my CF child is to do the same thing, every day.  Routine is vital.

Homework is done immediately after school and on the day it comes home.
Oliver has a weekly assignment that comes home on Monday and is to be returned on Wednesday.  To prevent things from piling up, we tackle it right after school on Monday and send back the next day.  This prevents the last minute "oh my gosh, homework!" morning freak-out.  (Don't even ask me about my opinion about homework in Pre-K - that's a whole nother blog post! :))

Bedtime is 8PM.
To help the boys feel good and energized at school - and to help us have good mornings - Brian and I are very consistent with the boys' bedtime.  We insist they are in bed by 8PM.  Sometimes, depending on how long they've had a nap at school the night before, it might take another hour for them to fall asleep.  But even on the weekends, we are consistent with the 8PM bedtime.  Their being in good moods in the morning is just too important for us!  (Plus, we treasure the 2-3 hours we have after they are in bed!)

10 September 2012

Cystic Fibrosis and Dying

On the way home from the store today, as I was telling the little boys of our evening plans, Bennett began protesting his evening vest treatment.

Sitting in the car at a stop light, Bennett began begging, "no mass and best" (translation: "no mask and vest").
Oliver quickly piped up, "But, Bennett, you have to do your vest.  Or you will die."

I stopped breathing for a just a second.  I was surprised by Oliver's candid response.
I looked at the boys in my rear view mirror to see how they would react to what Oliver just said.

Would Bennett begin to cry at the sound of this news?  Does he even know what "dying" really is? Would Oliver seem bothered by what he just said?  Would he ask me to reassure him this was true?

Neither child did anything.
They each accepted this information without issue.

I decided to offer a caveat, hoping to cushion the blow.
I said, "Well, he isn't going to die.  But he might get sick." which Oliver added, "Yeah, Bennett, you might get sick.  But then, if you get sick, you could die."

I couldn't help but nod.  It is the truth.

Doing twice-daily breathing and vest treatments are a matter of life and death for Bennett.  There isn't much benefit to hiding this information.  If it comes down to it, I will say this to him myself one day...just like I said to Bennett today when he refused to hold my hand while walking through the store parking lot: "You must hold my hand so you don't get run over.  I love you too much to not let you hold my hand."

The conversation about vest treatments and dying ended as soon as the light turned green.  The boys went right back to playing in their carseats.   But, as I pushed the gas pedal, my thoughts on the topic of death continued.

I often feel torn as a mother of a child with Cystic Fibrosis on whether or not to share the heartbreaking life expectancy number with those around me as I know it will surely get back to my child far earlier than I would ever want.  Do I talk about death?  Do I pretend it's not on my mind all the time?

A recent conversation came to mind.  A few weeks ago, at a monthly gathering of parents at our church called "Emerging Parents," the topic of discussion was how to deal with death when raising our children.

I didn't think much of it at first.  We talked about how children experience death and where they are cognitively at this point in our parenting.  We talked about how many children's first encounter with death comes from the loss of a pet or of a grandparent.

But, sometime during our discussion, it hit me: my children (Oliver and Bennett) are likely going to confront the issue of death and dying much sooner than their peers.

Today's brief conversation in the car is a reminder of that.  Another reminder is a day this summer when a sweet little 1st grade friend of ours said to me (while also in the presence of Bennett), "I'm really sad that Bennett is going to die on his 37th birthday."  I smiled because I knew his little first grade heart was so good.  He was communicating to me how sad he felt that Bennett's life is likely to be cut short due to CF.  But I also felt so sad inside.  It was the first time anyone had ever said anything about Bennett dying early, right in front of Bennett.  I knew it was only a matter of time.  I just hadn't expected it so soon.

As nearly two dozen parents sat nestled in a quiet room of our church discussing raising children with a godly view of death, I began to hear some insights on the topic that I reminded myself to store away for a day when I might need them.

Today, on the ride home from the store, I mentally pulled out some of these insights to remember.  I thought I would list them here for a day when the topic reemerges once again someday:

One of the ways I can help my children with the topic of death is to teach them: they do not belong to me.  One of my friends made the point that he tries to teach his children that God loves them more than even he (their father) does.  So, he encourages his children not to be scared of death but to realize death is a home-coming of sorts.  They will go back to God, from where they came.  My friend said he tries to acknowledge with his children that death is difficult and very sad because we leave the ones we love but that in every way he can, he tries to help them see that God loves them, cares for them and, when they die, they will go be with Him. 

"For none of us lives to himself alone and none of us dies to himself alone.  If we live, we live to the Lord; and if we die, we die to the Lord.  So, whether we live or die, we belong to the Lord." Romans 14:7-8

* Another way I can help my children with the topic of death is to remember: they do not need to know everything now and they will indicate when they need to know more.  This may be the biggest blessing of need only small bits of information at a time.  I don't have to have all the answers right now.  Like the topic of sex, kids need only age-appropriate information on the topic of death to the extent of what they can handle.

When Bennett was first born, Brian and I went to meet with a Child Life Specialist at Scott and While Children's Hospital.  We were given the chance to ask as many questions as we wanted about our newborn son's fatal condition and how to approach the issue with our other son, who was 2 at the time.

I'll never forget when Brian, breaking into tears, asked, "What am I going to say to my son when he asks me if he's going to die?"
Without missing a beat, the Child Life Specialist, "You won't have to worry about that.  Your other son will ask you about it first."

She was so right and I am so glad she warned us this would be the case.  This has helped us see that death and Cystic Fibrosis are not just topics for Bennett but topics for our entire family to address, little by little.

Our approach to the topic of death with our boys has been to allow them to guide the conversation as they are ready.  We want to neither minimize the significance of death nor over dramatize it.  We believe, for us, the best way to balance between the two is to let the conversation of death be child-lead.

* A last way I can help my children with the topic of death is to remind them: death is not the end.  One of the beliefs we share with our boys is that, as Christians, we do not believe death is final.  Jesus is the reason death no longer has the final word on our lives.  Death may be a separation but it is merely temporary.  Our life exists beyond our present life here on earth.

One of the songs I really enjoy listening to right now is Matt Maher's "Christ is Risen."  I love the whole song but here are my favorite lines:

"O death, where is your sting?
O hell, where is your victory?
O church, come stand in the light.
The glory of God has defeated the night."

I have more than once wondered why I like those particular lines of Matt Maher's song so much.  Today, as I was driving back from the store with the boys in tow, pondering the topic of death and how we may have to confront the topic earlier than any mother would want to do, I realized just why that part of the song feels particularly important to me.  These words speak close to my heart - they remind me that while, at this point, my child's life expectancy is significantly less than his peers, I can hold on to what I know is true: Christ is risen - death does not have the final word on my son's life.

I would not say that I have come to grips with the seriousness of my son's disease.  There is no point where I have found myself "used to" the idea of a life expectancy of 37.  But, I believe that I am always working to find peace, while knowing it is a reality.

Thanks to Oliver's encouragement, Bennett did finish his vest and mask treatment tonight.  Just like he does every morning and every night before bed.  I love him too much not to let him do his treatments.