We’re all still here….

Everyone is present and accounted for….I started to feel guilty about making a break for it. Not so much because I thought better of abandoning my offspring, I know they can fend for themselves, I just didn’t have the heart to leave the dog defenseless and at the mercy of the kids (who it should be noted begged for the cute puppy but will not feed him, give him water or walk him without a civil insurrection). So here I am on day eleven and I must say we truly do have a sort of system going, it’s grueling but so far we’re all in one piece and at this point that’s the only measure of success I’m willing to go with – I feel it’s best to set the bar low.

During the last week and a half I’ve learned a few things, nuggets of knowledge if you will, that I thought worth sharing:

1. Kids can get tired of fast food.
2. One person cannot do the work of two people even if one of those people is the husband whose productivity you have until now held in question.
3. My children have no idea how to empty a dishwasher, fold laundry or take out trash. Evidently this is an over 40 skill set.
4. The only thing worse than two squabbling siblings is two siblings united against their mother.
5. Messing with Max is dangerous business. When angry at being pushed to do something as mundane as putting his shoes on for school he will either tell me that he wishes I was the one that went away (ouch) or, my personal favorite, “You’re not my Mom!”…..right, because I look stupid enough to have stuck around for the last seven years without a biological link!
6. Thirteen year old girls really do have attitude, especially at 5:30am.
7. And my all time favorite…..wine is indeed good for your health…your mental health that is.

Well, it's past my bed time and since my to-do list for today still has a few items left on it I'd better get moving before it's time to start tomorrow's to-do list. Enjoy the rest of your weekend!

Day Six and Counting

Day six and everyone is still alive and accounted for. On the medical front Max has been behaving himself, other than a few of his standard nosebleeds last week he has been kind enough to go easy on me. So although he has been behaving as far as his medical status goes I cannot speak so highly of either child's general behavior. Michele promised me that the kids would sense the need to be cooperative, non combative with one another, and otherwise helpful during his absence. Plain and simple my husband lied to me, he knows these kids better than me and he lied to me. When I mentioned this to him yesterday he told me that "I just need to lay down the law" (this suggestion won him a hand gesture). I thought to myself this is probably the same advice they give the prison warden right before the prisoners revolt and set the place on fire.....

So although our headcount as of this evening is three (four if you count the dog) I am seriously considering digging a tunnel under the backyard wall and making a break for it. Maybe Max can write tomorrow's blog update, I plan on being halfway to Mexico...Adios amigos!

A Day in the Life of a Single Mom

I feel the need to say first and foremost that I have found a whole new respect for single parents…it takes courage to allow yourself to be outnumbered by little people! Michele has been gone just over 48 hours and I’m not so sure how I’m doing. On the upside both kids are still alive, have arrived at school on time each day, have been driven to all their activities, appointments, etc., and have been fed at least once a day. On the downside I cannot guarantee that I will be able to keep this up until the 27th. Please don’t tell Michele this but I have also found a whole new respect for what he does for the kids – I am truly exhausted keeping his schedule! I actually fell asleep in the car waiting for Max to get out of school this afternoon. Considering how exhausted and disheveled I was it was a wonder that no one called the cops to get the homeless lady out of the school parking lot!

All of the craziness of the last few days reminded me of something I had written recently for a friend who’s working on a project. She asked some of us, all mothers of chronically ill kids, to write up what our typical day is like. Now when I wrote this it reflected what both Michele and I do each day to keep our not so finely tuned machine running….today I realized I’m playing both roles. Yikes! Take a peek but be sure to insert my name everywhere you see Michele’s, then send me over a bottle of wine…..


Max’s Marathon

5:30am – Our alarm clock rings. If we have actually gotten any sleep Michele and I wake up and try to get ready for the day. This includes numerous cups of strong espresso, we are strong believers that caffeine is our friend. My first shift starts.

6:30am – Max wakes and the race begins!

6:30 – 8am – Breakfast. Because Max needs 5,000+ calories a day meal times are usually long and grueling. Breakfast usually includes three eggs, 16 oz of milk with protein powder, 2 chocolate puddings, a banana and waffles. Max has to eat such a large quantity at breakfast because we can’t calculate what, if anything, he gets at school so we really have to be sure to “fuel him up”. We generally refer to Max’s diet as the Michael Phelps diet for 7 year olds!

7am – We dose out and Max takes six medicines and supplements, some for his heart some for his poor absorption of what he’s eating. Whenever Max has respiratory issues we need to add breathing treatments to this routine.

7:15am – I try to get out the door to work and bring Max’s sister to school (yes, we actually have another child who needs our attention – sometimes she gets it, sometimes she doesn’t J). My second shift starts.

8:40am – Michele and Max furiously leave for school praying they get there in time! Max has been up for more than two hours and still it’s a mad dash, how do some kids get ready for school in 15 minutes? Oh right, they don’t have to take multiple meds, eat like a longshoreman and have extra bathroom time.

9:00am – Once Michele gets home from dropping Max at school he starts his to do list: picks up the kitchen, does laundry, makes beds, etc. At work I start my to do list: order meds, handle DME requests and start fighting with insurance companies. Thank God I work in an environment that gives me time to do this! At home Michele has to hurry because he has to get back to school to give Max more meds (Max can even overwhelm the school nurse!) and make sure he eats SOMETHING for lunch.

11:15am – Michele’s back in the car and off to school. He assists Max with his meds, lunch and bathrooming if necessary. In the warm months (this is Arizona after all) he might have to stay with him during lunch recess because it’s too warm for a kid with a heart defect to be running around on the playground.

12:30pm – Back home Michele does more laundry and whatever else I’ve left him on his to do list. More often than not he’ll spend some time on the computer researching new meds, procedures or treatments that might benefit Max. Parenting a chronically ill child means you’re a nurse, doctor, medical researcher, advocate, etc., etc……….oh, yeah and just plain old Mom or Dad too!

2:15pm – Michele leaves to start the “bus route”. First he picks up Ellie at school which is 20 minutes from home and then returns home to pick up Max from school. This takes a total of about an hour and a half.

4:00pm – Michele fixes Max a “snack”. This snack usually involves cooking and is actually a full meal by most standards and Max has to get it down before he starts therapy (PT, OT) every afternoon at 5pm.

5:00 – 6:00pm – Therapy

6:00pm – I get home from work. My third shift starts.

6:00 – 7:00pm – One of us tries to get supper ready while the other helps Max (and maybe his sister) with homework. Because Max has a lot of issues with fine motor skills writing longer assignments frustrates him (and US!).

Hopefully no later than 7:30pm – We’re eating dinner (in my case usually gulping because there’s still so much to get done before Max’s bedtime at 8:30).

8:15pm – Send Max to get P.J.s on while we dose 7+ meds and supplements, hopefully he doesn’t need a breathing treatment!

8:30pm – Give Max his last “feeding” of the day, ice cream with a caloric supplement. Michele and I say that some days we feel like all we do is feed Max; it’s like a never ending meal! I read Max’s library books with him so he’ll be ready for his reading comprehension tests (this usually involves me dozing off waking only to hear Max complaining that I’m not listening).

Hopefully no later than 9:00 – 9:15pm – Get Max to bed. Once again we’ve missed the 8:30 mark, if the school ever knew that Max stays up until after 9:00 I’m sure they’d crucify us but I’d like to see them get all this done and be on schedule!

9:15pm – Clean kitchen, argue with Max to get back to bed, go through mail, argue with Max to go back to bed…..

10:00pm – Maybe, just maybe sit down for a few minutes and breathe or not…..

Throughout the night – check on Max, get up with him whenever he doesn’t feel well or needs help.

Just committing this schedule to paper exhausts me, I’ve always known “A Day in the Life of Max and Co.” was overwhelming but this is just scary. No wonder I’m such a zombie!

Of course this schedule doesn’t include any of our extracurricular activities: doctor’s appointments, ER trips, visiting our friendly neighborhood laboratory for blood work, visits from DDD or any other state agency that wants to be certain we haven’t sold Max to the gypsies while still collecting the hundreds of dollars of assistance they give us……….NOT!

Max Earns His Wings

This weekend we had another wonderful opportunity, Max got to experience flying a plane! Now I must admit I allowed (read chickened out) Michele and Ellie to accompany Max on his maiden voyage. From what I understand it was a very good thing that barf bags were handed-out at take-off, it seems Max likes to make extremely sharp turns in opposite directions in quick succession. In fact, Michele took some video of the big event and Ellie looks as white as a sheet and quite queasy for the duration of the 30 minute journey. Upon landing Max earned his wings and has not taken them off yet, this includes pajamas!

Enjoy the photos of the big event!

Parenting is like Jell-O…..

Sometimes you have to be firm and sometimes you just have to accept that things will be shaky! Sometimes it’s clear and other times it’s not so clear.

I know most of you now think I’ve lost my mind (and I have but that’s got nothing to do with this) comparing parenting which is a serious business to a wiggly desert! But I recently realized that most of my life is completely wrapped up in issues that involve the parenting of a chronically ill child. I never have the luxury of stopping to think about mundane parenting tasks like disciplining, scheduling play dates, spending quality time with each child (What is quality time? If someone wouldn’t mind sending me a definition it would be greatly appreciated. Something tells me waiting in line at the ER doesn’t count….) and the list goes on….

So today I thought I’d ponder these things a bit, mostly because I have a teenager and sometimes I think parenting a teenager is even more challenging than parenting a child with medical needs! Don’t get me wrong Ellie is a great kid but she’s a teenager and a girl -- this is a lethal combination at best. As the mother of a teenager I see myself turning into my mother (gasp!) and my daughter turning into me – I remember the same conversations I have with Ellie being played out in another kitchen, in another time, but with the same door slamming and shouts of “But all my friends…” and responses of “If all your friends jumped off the Brooklyn Bridge…” (Oh please tell me I didn’t just say that!). So parenting is like Jell-O because although I have turned into a firm disciplinarian (read dictator) I’ve also learned that sometimes I need to pick my battles. I’m sure this makes me as wobbly as Jell-O in Ellie’s eyes, my inconsistencies boggle her mind: Why do I let her do this but not that? Why is it sometimes yes and other times no? You see Ellie is really pretty smart, she sees the shakiness of my Jell-O, I mean parenting. Parenting is a far greater challenge than any of us probably ever imagined, although there’s plenty of on the job training you’re never really prepared for the next stunt your kids pull!

Maybe I wasn’t cut out for motherhood, maybe I should have stuck with puppies……

What a difference ten years make!

Today marks my 10th anniversary at work, last week marked 10 years since Michele, Ellie, and I moved to Phoenix from Italy. It seems like yesterday. Ellie wasn’t even four years old yet, she was so cute going off to her first day of “American school” as she called it with a lunch box full of pasta and meatballs (we later learned from Ellie’s teacher that other kids had been offering her money for her lunch, evidently they were sick of their peanut butter and jelly!). Back then it was just the three of us with no plans whatsoever of staying in Phoenix long term. In fact we kept our home in Italy fully furnished and waiting for our return.

Michele spent half his time here and the other half back home, leaving us girls to fend for ourselves. During the summers I was alone (I can still hear the peace and quiet if I really concentrate) as Michele and Ellie past their days in Italy. It seemed we truly were living our lives between two continents, but in an instant everything changed. When Max was born we never really thought about the future, we were hunkered down in the trenches fighting for Max’s survival. Sometimes getting through an hour, a day, or a week was as long term as we could get. We learned very early on that it was useless to plan because Max was clearly running the show (not much has changed) and everything depended on how he was doing. His good days were our good days and his bad ones were our nightmares. Today Max defines his own sense of stable and we’ve slipped into what is our version of normalcy. The days come and go and many are uneventful, thank God. Yet after seven years of this we have come to realize that our future is now and it is here in Arizona.

This realization is somewhat tinged with sadness. It means we will not be going “home”, this is our home. Sometimes I think we have held on to the idea of Italy because it represents a period of time when our lives were less stressful, less complicated. We also held on to Italy because returning to Italy would signal that Max was healthy, whole, cured – however we want to put it. We told ourselves that once Max was stable we would go back. As time goes on and we realize that Max’s stable is a different stable we know that here is the best place for him to be and so we stay. Recently we have decided that this reality begged some concrete actions on our part. In the next week or two Michele will return to Italy to sell our house and pack up our belongings. Although none of us have stepped foot in that house since 2003 and Max has never stepped foot in it we all feel a bit like we’re selling the family home. When Michele signs those papers we will be losing our first home together, Ellie will be losing her childhood home, and Max will be losing the chance to know a place that has symbolized so much for us. While it’s bittersweet to loose something from your past it’s important to remember that you can’t have a future without letting go of your past.

What a difference ten years and a little boy can make!