I decided to take a trip down my Parisian memory lane for this post, as it is one month to the day that I will be back in my beloved city. And in one month and three days, my beloved daughter Jordan will join me in said beloved city. I promised her that I would take her to Paris for her 21st birthday, and since I had decided to go in January to take some French classes and visit with some local and visiting friends, I decided to take her along for an early birthday present. (I still cannot believe that my baby will be 21 in 2013. How in the #$%^ did that happen?!)
This will be her second time in my favorite place on the planet. We took all 3 of our children in 2006, my third time in my fair city. It was quite the adventure, traveling with teenagers aged 14, 15 and 17.
It meant trying to rouse the 17 year old by 3 PM, without much luck.
It also meant visiting such Parisian landmarks as Les Invalides (so much armor and weaponry, so little time),
and of course the oggy catacombs, which to this claustrophobic scardy cat were way beyond creepy.
It also involved fun if way too cold trips to the crowded Eiffel tower and spiritual meanders through L’Orangerie and Notre Dame (which Jordan was especially thrilled to see)
and many wonderful meals
and a ride on the Vendettes de Pont Neuf
and a fabulous New Year’s eve feast that we cooked in our apartment which lasted for 4 hours, at least – so many laughs – and so much champagne topped off by a twinkling tower view. And a guided tour of Montmarte courtesy of Loic, who took us zig zagging up and down the butte at breakneck speed.
Jordan really wants to re-visit Notre Dame, and climb the bell tower, and she really really wants to take a guided tour of the Opera Garnier, as she became a Phantom of the Opera uber fan in the years since our first trip and therefore she is super excited to see the infamous chandelier. And she wants to see Montmarte and Sacre Coeur, as she missed the tour last time – she missed two days of that trip, actually.
OK, an aside: I will explain why Jordan missed some precious Paris time, as briefly as I can, because if I were to really get into the details I could write a book, which I may someday…
Jordan missed two full days of Paris because she was in bed with “sore legs”, a result of her metabolic condition. More aside: Jordan has a rare genetic metabolic disorder called: Long Chain Acyl-CoA Dehydrogenase Deficiency, VLCAD Deficiency for short. It is what’s called a fatty acid oxidation defect. Her body is deficient in an enzyme called VLCAD, which is one of a series of enzymes that breaks down fatty acids. As a former aerobics instructor it helped me to think about exercise – when you exercise real hard, or when you fast, you first burn up all the glucose in your body. Then your body says uh oh we need fuel, so your body starts to break down fats, turning them to glucose for energy. This is where Jordan has a problem – her body can’t convert the fatty acids properly, so they build up in her system causing all kinds of trouble, and at the same she doesn’t get the energy she needs, so her body starts breaking down muscle, and the fatty acids build up in her liver and heart. Over the years we’ve learned some interesting things, like, did you know that shivering causes your body to rev up your metabolism to the point where you burn lots of fatty acids? That’s what happened to Jordan in Paris (it’s a complicated chemical story but the end result was severe REALLY painful leg muscles that landed her in bed unable to move for two days.)
I discovered that Jordan had this condition when she was 17 months old. She got a routine stomach flu and ended up in intensive care after having a hypoglycemic seizure and almost dying in my arms. Really, scarily close. At that time there were no tests to predict disorders like these – Jordan was just lucky to have lived, and super lucky to have ended up in a hospital where there was an intern who had worked with one the fabulous doctors who discovered the gene, our most wonderful savoir/Dr Kelley of Johns Hopkins. The intern probably saved Jordan’s life, as she would have been sent home undiagnosed and would more than likely have died from the next episode. According to Dr. Kelley, Jordan was the 30th medically recognized case at the time of her diagnosis, of course there were others before that went undiagnosed, most of whom died and were misdiagnosed with SIDS. About 1 in 40,000 people carry the defective gene, both parents have to carry it, and if they do, there is a 1 in 4 chance that their child will have the disorder- you can do the math to see how rare it is.
Anyway, thankfully, thanks to me and others who fought for expanded newborn testing, parents now are informed at birth and can take steps to avoid crises like what happened to Jordan, because managing her disorder is not all that hard and pretty much involves avoiding fasting and other “triggers”, like, as I mentioned, standing in the freezing cold for hours, or getting really super excited combined with not eating enough calories. She also has to limit her fats, and can’t over exercise or go on a diet.
Unfortunately for Jordan, because she was diagnosed after having a severe crisis, she suffered some consequences from the seizure and has struggled her entire life with some mild damage to the area of the brain that handles “executive function”. Her IQ is slightly above average and I think that her emotional/empathy IQ is off the charts – she just can’t do an algebra problem to save her life, standardized tests are out, and she sometimes gets a bit sidetracked. And it meant that she suffered mightily in middle school thanks to some nasty bully girls who, I’m sure, will get their karmic payback someday.
All that to say that Jordan has handled all that has been thrown at her with such grace, and good humor – she has such a positive outlook on life – well, anyone who knows her knows that I could go on and on, because she is a such a sweet girl. She is truly my hero. I am SO proud of her and beyond thrilled that I am in a position to do this for her, to be able to share my favorite place with her again, just the two of us. From living with her in the hospital for months at a time, to moving to Boston and back again, to dealing with uncooperative school systems to the divorce and then a new blended family life, we have been through so much together, most of it just the two of us. And now, long johns and mittens and warm sweaters and hats are ready to be packed, I am ready to be with just her in Paris.
On y va ma chère fille ! Je t’aime