Saturday, April 28, 2012

Golden Slumbers

Once there was a way to get back homeward
Once there was a way to get back home
Sleep pretty darling do not cry 
And I will sing a lullaby 

Golden slumbers fill your eyes 
Smiles awake you when you rise 
Sleep pretty darling do not cry 
And I will sing a lullaby 

It must have been that discussion with the UPS driver that made me think about it. After all it was just another Saturday morning.  I was up earlier than the rest of the clan so I could enjoy the quiet house and for some reason decided to start early yard work.  Don't get me wrong, I was more than happy to get outside because it was spring.  There is something about the combination of cool spring air, morning sun creeping through the trees, and fresh cut grass that has always helped cleared my head.  The worries of the week are left behind as the weekend world comes alive.  It was just like so many suburban Saturday mornings with one exception, the UPS delivery.

Every other Thursday we receive a call from the pharmacy to confirm that our shipment will be on the way and every other Saturday the same UPS driver delivers two boxes better than any Christmas present I could receive.  For almost a year, he's driven up our street, stopped his truck, carried the two white boxes up our driveway, and requested a signature.  There has never been a question, just the joyful hello you would expect from any UPS driver.    

Maybe it was because I was alone outside the house so the kids couldn't hear or maybe he just figured it's been months I've been meaning to ask so today's the day. Either way, when he walked up to me put down boxes and handed me the document to sign he asked.  "If you don't mind me asking, what do you guys get every other Saturday morning? Each week, my truck is empty and you are my only delivery."  So I explained.  I explained our girls have a rare, genetic muscle disease called Pompe and that these boxes hold their medicine.  

He looked at me with a sad face and said, "So is this going to make them better, like will this make them recover?"  I told him it would make them better, that this was a lifelong treatment they would be on for all their lives, and that it was OK.  He awkwardly apologized, not knowing what to say.  I then explained to him how much we looked forward to hearing the roar of his truck on Saturday mornings.  To us it means independence and a better quality of life for our girls.  This seemed to lift his spirits because he smiled, shook my hand, and jogged off to his truck.

In May 2012 we will mark one year since that wonderful day when the girls first met their nurse, first watched their medicine mixed at our kitchen table, first had the IV set where they ate their dinner, and first sunk into their own sofa as the medicine seeped through their veins.   When we received the green light to have the infusions at home, we were nervous, excited, tense, thrilled, busy, and ... did I mention nervous?  Now, it is a day we look forward to.  By the end of two weeks the girls are a bit more tired, a bit slower, a bit achy, and ready to get their meds.  To make it even better, we love our home IV nurse Adam.

As you can imagine, the thought of having someone come into your house every two weeks and sit for hours with your children was a bit unsettling.  Would they be reliable, would they be respectable, would they be able to manage any crisis, and most important to me - would they have a sense of humor?  Now I recognize having a sense of humor is quite low on the totem pole behind capability here, but to survive in our house, it's a must.  Fortunately for us, Adam is awesome.  His medical skill and knowledge are top notch, he relates well to the girls, and has a great sense of humor.  

Having Adam at the house is like having a good friend pop by every other week.  When he arrives it is all business.  He gets that medicine mixed, gets those IV's going, connects the IV pumps, and ensures the girls meds are flowing well.  Then, things calm down a bit.  At all times he is like a bear watching his cubs to make sure they are doing well, quietly checking IV lines, taking blood pressure, and the like.  In between we all talk.  We talk about food, we talk about medicine, we talk about politics, we talk about the kids' events, we talk about how cool it must be to be Carter, and then we talk about food again.  Adam is quiet the food connoisseur and Donna and him love to talk about this recipe, that recipe, etc., etc.  By this time I usually step back into my office, close the door, and catch up on work.

One of the benefits of what I do is that I am able to work from home often.  This comes in handy on treatment days in case the girls need to be picked from school or I have to let Adam in to get set-up before they arrive home.  One downside can be getting things done in a loud house.     At first this concerned me with the treatments at home, but over time I've noticed that after the rush of the set-up, our house turns into a gentle, quiet place.  Quite often the girls move to the sofas to do homework or read as they get their meds.  The portable IV pump enables them to move around the house with ease, but Adam likes them to be together so he can monitor them easier, keeping an eye out before anything becomes an emergency.  I'll turn on some background music or a fan and work away without problem.

The other day I came out of the office and the house was silent.  Adam was reading the paper, Donna was at the grocery store, Maddie was reading, and Emma was nowhere to be seen.  I asked Adam how things were going and he said, "Great!"  I then asked where Emma could be and was directed to the front room.  There I found her, under a blanket, fast asleep with her IV pump at her side.  In the old days, we would drive home from CHOP with two kinds of kids.  The first kind had the giggles as their body was filled with a strange release of sugar, which made them laugh uncontrollably.  The second kind were exhausted, fast asleep from a long day as their medicine quietly did its magic.  For Emma, today was the latter.  She lay fast asleep with golden slumbers filling her eyes.

It's been a long time since I have been a junior in high school and don't recall if I worked as hard as she does.  Every class she takes seems to be honors this or advanced that and every week there are discussions about SATs and colleges.  Some of the time they come from her to us, but most of the time they come from others. The usual questions range from, "Where do you want to go to college?" to "What do you want to be?" to "What do you want to do?" and "Are your grades, SATs, ACTs, etc., good enough?".  I appreciate all of this, but also recognize it's a lot of stress on a 17 year old who also has to deal with being a bit more tired than some others and worries at times what the future with Pompe may bring.  

When I saw her peacefully sleeping I couldn't help but sit and smile.  For those few moments the best part of having home treatments was realized.  Despite all the struggles or worries she may face, she is able to curl up on her own sofa, with her own pillow, and be swept away to slumber with the confidence of knowing that smiles from her parents, her siblings, and her awesome nurse Adam awake you when she rises.

So as I got up and tip toed back to my office, I left a small kiss on her forehead, and thought how fortunate we truly are.  We have wonderful kids, a great support team in our area, and a wonderful nurse that every two weeks fills our house with laughter and brings comfort and hope to our family.  With that, I smiled and hummed...

Sleep pretty darling do not cry 
And I will sing a lullaby

Happy Spring,

Credit to, The Beatles "Golden Slumbers"

*If you have never taken the time to listen to side two of Abbey Road, I recommend you do.  A sunny, spring morning is the perfect time.  Leave the mower in the garage.  A hot cup of coffee is a better plan.  Enjoy!