Sucking the marrow out of life: Campbells look for ways to enjoy every minute of Maddie's life

Emily (left) and Maddie Campbell, shown here on a recent swimming adventure, plan to make the very most of Maddie's life. As symptoms increase and her abilities decrease, Maddie's lifespan likely won't be as long as her fellow teenage friends.

William Shakespeare's "Romeo and Juliet" is starting to make a little more sense, but from the parent’s perspective.

I get that kids want to make their own decisions, and that parents just don’t understand, but there may be just a smidge of wisdom coming from the parental side. After all, Romeo and Juliet did make a hot mess of things.

Like the elder Capulets wanted to protect Juliet, I want to protect Madelena from herself -- the poor judgement of her peers and her short-sighted vision of life.

One of the issues at hand here is that Madelena knows that she can’t count on having a really long life. Teenagers like her live in the present, not taking into account the bigger picture. They don’t worry that much about their future. The problem is that we don’t know how much of a future Madelena actually has.

Her disease, MLD, is rearing its ugly head again, and we’ve seen measurable declines in every area. There is always a chance that she will plateau and remain stable, but all signs point to the opposite.

Our daughter, Tori, only passed away six months ago, but it is too fresh to not influence how we feel about Maddie’s remaining time on earth.

Madelena wants to be a freewheeling 16-year-old. She wants to date, to talk on the phone, to chat with friends, and to have parties. The frontal lobes of all teens her age are not fully operational, and lead to some questionable decisions, but Maddie has the results of her diseases’ demyelination as an additional hurdle. Her brain just isn’t right.

When she isn’t trying to assert her independence as a 16-year-old, she is like a little child. She needs assistance with many things. At home she accepts the help, but in school, she balks at her lack of independence. She has an aide who escorts her around the school and accompanies her in class.

She wants, more than anything, to be a normal kid. That ship sailed a long time ago. There will only be "our new normal," never the kind of normal that her friends enjoy and for which she will always wish.

We do try to accommodate her desires to be a regular kid. We’ve mainstreamed her in a lot of her classes, though she operates on a lower level than the classes require. We try to let her enjoy the experiences of having friends over and talking on the phone.

Experience shows that she is sometimes just too naive to handle herself among her higher-functioning peers. She can easily get herself into trouble, and not even realize it. I will say this, though, in a group setting her lack of inhibition and party attitude can make for some hilarious moments.

I’ve even heard Madelena tell her friends “Don’t worry about me, I’ve had a good life, I’m not afraid of dying.”

She told me last night that she’d like to be with Tori again. She sometimes has wondered aloud what her purpose here on earth is, because she feels like she has already done some really hard things, and wonders what else she needs to learn.

Madelena has faced death, and she stared him down, she is not afraid. Also, she tells me, in heaven there won’t be people following her around all the time and trying to protect her. “It gets a little old,” she says.

Her matter-of-fact attitude is a blessing. I don’t know how I would face my impending death, but she is handling it with grace and aplomb.

We have no idea to what level she will decline, or how long it will take for her to succumb, but hopefully her good attitude will remain, and she will be able to experience everything that she hopes to in this life.

I can’t handle the thought of having regrets, so I am taking her on an extended mommy-daughter date to a women’s retreat in Maui next month. I’m trying to pack in a life’s worth of experiences while we can. While she can walk and talk, we are on the lookout for adventure, we are going to extract everything from this mortal life. We are going to suck the marrow out of it.

“I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived. I did not wish to live what was not life, living is so dear; nor did I wish to practise resignation, unless it was quite necessary. I wanted to live deep and suck out all the marrow of life, to live so sturdily and Spartan-like as to put to rout all that was not life, to cut a broad swath and shave close, to drive life into a corner, and reduce it to its lowest terms.”

― Henry David Thoreau, "Walden: Or, Life in the Woods"