Why me, Mom?

A few years ago a friend of mine gave me a poem. I remember thinking little of it at the time. Max was an itty bitty baby and still in the hospital that first year of life, I could not see the importance of these written words. In fact if I hadn’t spent some time today cleaning out all the files on my laptop I would probably have never seen the poem again.

But my very wise friend saw something profound in these words. She was single at the time, had no children and a clear mind. I was an exhausted mother of two who hadn’t seen the light of day outside a hospital room for nearly eight months. Our perspectives were different. But she told me then that she wanted to give this to me because she thought it would be important to have when Max asks us for the first time, “Why me?” Fast forward seven years and we’re just about at that point. I think Max may not have asked us this question yet because he is incredibly clever and he knows why he is different. By this I don’t mean that he understands the physical differences (as he would say that’s a “no-brainer”) between himself and his friends but rather he sees the philosophical differences. He “gets it”, he knows that his journey has changed many lives and he takes it in stride as though he understands his purpose. I know that what I’m writing may sound a bit melodramatic to some but to a parent of a special child we see it, we understand it. As much as parents of chronic kiddos don’t like to see their kids as different, they are. Not because they can’t walk, talk or run like their peers but because they have a far greater purpose -- they teach us how we should walk our walk, run our marathon and talk with kindness and compassion. I know we are better people because of Max and I sense he knows this. Remember he’s the kid with the super-sized ego, all good emanates from him (or so he tells us)!

Without further adieu or dramatics I share the poem that meant nothing to me seven years ago but caused me a Kleenex fest today!

When you want to scream, "Why me?" remember that this "difference" is a gift. God has allowed you the opportunity to be an example to many others.

He has allowed you the chance to see others who are in need, and because you must go a little slower, you can take the time to reach out to them and welcome them to come along.

He has given you the chance to create your own dance and be your own person. You have learned that it is okay to be who you are and that "you" are a very wonderful person to be.

He has given you friends who walk beside you and cheer you on.

He has given you family who will carry you whenever you are in need.

Why you? Who else could teach me to hold tightly to my children, because they are not really mine? They have only been loaned to me until their heavenly Father receives them home.

Who else could teach me to tell others they are loved because tomorrow may not come.Who else could show me that despite my selfishness, selflessness does exist within me? I would quickly and gladly take this suffering from you and make it my own.

You have given, you have taught, you have loved.

Why you? Because God knows your strength, your beauty, your joy. He knows that you can carry this cross, when there are many others who could not. He knows in His heart that you can handle the differences in you. He knows that you could take this blessing and bring others to Him because of it. You are an angel given a delicate package.

So, whenever you say the words, "Why me?" do so with reverence and awe. For God has chosen you - with love.

Thanks Max for not only making me a better Mom but also a better person!

All's well that ends well...hopefully

Max is on his way to school this morning. I’m certain he’s had enough of us because he bolted out of bed this morning and gleefully got ready for school.

He still has a frightful cough but at least he slept last night (codeine will do that to you). In fact, we didn’t hear a peep from him all night which means we finally slept too. Fingers crossed that there will be no phone calls from the school nurse today.

Someone tell me to keep my BIG mouth shut please!

Just when we think Max is feeling better he does something to prove us wrong. Last night was probably his worst night yet. He couldn't sleep (we couldn't sleep) and although he didn't seem to have a fever he was covered head-to-toe in sweat. The poor kid diligently finished all his home work yesterday so he could go to school today. He actually cried this morning because he wanted to go, after much drama he actually admitted that he really wanted to go because the cafeteria was serving his favorite lunch. This child never ceases to amaze me, I had to leave the room so as not to let him see me laugh!

Michele and Max are off to the pediatrician this morning, I wonder if they can put us in the frequent flyer club?

On the mend...sort of

It's been a very, very rough weekend at the Marangella home. As of Friday evening as our luck would have it we had two sick children. In fact, just to show Michele that I can pitch in and haul a kid to the pediatrician I woke up (can you refer to it as waking up if you have not slept?) Saturday morning and took Ellie in. She had a fever, sore throat and a headache….one $20 co-pay later and guess what?? It’s a virus! It seems to me that the Saturday morning pediatrician, who has drawn the short straw for the privilege of seeing every species of disheveled, sleep deprived mother with their equally disheveled, sleep deprived children, is motivated to do absolutely NOTHING! That’s right no meds for Ellie…or even me!

Ellie was much better by Saturday evening just in time for Max to get the one symptom he didn’t have before --- a HIGH fever! A little Tylenol and another sleepless night……

As of this evening everyone seems to be on the mend and feeling better (I write this as I hear my son hacking from down the hallway) or at least well enough to be kicked out the door tomorrow morning to return to school. I’ve instructed Michele to keep an eye on the Caller ID tomorrow and not answer any calls from school nurses, let them tough it out like the rest of us did all weekend!

Max returns to his pediatrician tomorrow afternoon, stay tuned for more news on that front…..
Have a great week all!

This is why I love my life……….

I don’t just get to care for my son I get to spend lots of quality time dealing with home health agencies too. What a glamorous and exciting life I lead!

This evening Max’s breathing was really starting to sound rough so Michele and I decided we needed to have some oxygen in the house “just in case”. Thus began the fun and games. My first call to the agency we use for some of Max’s supplies went very well (NOT!). The conversation went something like this:

Me: Hello, I’m calling for my son Max Marangella. M-a-x-M-a-r-a-n-g-e-l-l-a. Max has RSV and we’d like to get an oxygen tank sent out to our home.

Operator: Is your son an existing client?

Me: Absolutely! We have other equipment from you….

Operator: Ma’am, Ma’am listen to me, we can’t bring out any equipment or supplies to an existing client after hours.

Me: You mean to tell me that because you have been supplying us for the last seven years my son is not entitled to oxygen until 8am Monday morning?

Operator: Yes.

Me: Let me see if I get this, new clients get to breathe; old clients are on their own?

Operator: Yes, we only deliver to patients being discharged from the hospital.

Me: Now there’s an idea, I could have the oxygen only if my son was leaving the one place I’m trying not to go…..the hospital!

Operator: You could try calling tomorrow, maybe someone will be here.

Me: Gee, thanks.

Having finished that call so successfully I decided to try home health agency number two, if for no other reason then to completely depress myself. As much as I love to malign these companies I have to say the young lady who answered the phone from who knows where (as opposed to my friend from the first phone call who was in Mesa and still unwilling to help me) was actually stellar. She took all of Max’s information, was very kind, and even asked how he was feeling (she actually cared how Max was and she’s just the after hours operator!). Long story short I just spoke to the respiratory tech and he’s on his way!

This is why I love my life………..

RSV, oh no!

Max and Michele are just back from the pediatrician and it seems that we are indeed bad parents. Max has RSV, which as many of you parents of chronic kiddos know it is never a good thing for a child with heart and/or lung issues to get RSV (and because we are lucky Max has both!). In fact from the CDC site:

Poor Max!!!

Quick Update

We didn’t get our wish; Max is off to the pediatrician with Michele later today. We probably let it go too long but we really hate having to take him in for steroids so we gave it the “‘old college try” at home with around the clock breathing treatments. Because Max spends enough time in doctors’ offices we do our best to not subject him to even more time among medical professionals. It’s not that Max doesn’t like to go, heck it gives him the chance to charm the nurses a bit, it’s just that there are sick people there (like Max isn’t!) and we don’t like to expose him to any more germs then he already has!

After three nights of no sleep for all of us and the level of discomfort that Max is obviously feeling we know we need to do something before the weekend. Because most Urgent Cares won’t deal with Max (when they ask me for a medical history and medication list and I have to ask for a second sheet of paper to answer all the questions they usually invite me to take my son elsewhere and not return) waiting any longer would mean an ER run down to PCH and I can guarantee you NONE of us want to do that.

Wish us luck…and sleep!

Sick Day

Max stayed home sick from school today. He was up most of the night coughing and talking in his sleep which for Max signals a high fever. In fact he was so agitated that on Michele’s watch Max sat up and screamed at him, “Go away you big bird!” He must have become even more febrile because when I checked on him an hour later he swiped at me so vigoursly I tripped over my own feet getting out of the range of fire. Anyway, I’m attributing this violent behavior to a fever, I hope it doesn’t reflect how Max feels about us…..I’d kind of like to wait for the teenage years before the physical and verbal abuse begins!

Today he stills sounds awful, in fact I told Michele to starting checking for Max’s cigarette stash because at the moment he sounds like he has a two-pack-a-day habit. Hopefully the fever will pass because I don’t think any of us would appreciate a trip to the pediatrician or worse yet pulmonology. I’ve called home to check on him a few times and although I would expect him to be lying around do nothing and feeling miserable I have been assured that this is not the case. During my last call as best I could tell Max was wrestling with the dog on the floor, watching TV, and playing Game boy all at the same time! At this point I had Michele pass the phone to him so I could instruct him to sit still for a while and work on his homework packet. This advice must have been very popular because as I finished talking I heard Max make a loud acoustical sound and then said, “This is Max, I’m not home right now please leave me a message after the beep and I’ll get back to as soon as possible…..BEEP!” Something tells me I shouldn’t hang around the phone waiting for his call………

Happy Wednesday!

We still have a dream....

In light of tomorrow’s holiday and the inaugural events this week I have been giving a lot of thought to dreams. Dreams of hope, renewal, and promise. Dreams of what should be, of what we can accomplish, of what our future holds. This week there will be much talk of these dreams as regards our nation’s politics, economy and infrastructure. Of course these are issues of immeasurable importance to all of us, our children and our nation. But as Max’s mom, the mom of a chronically ill child with serious health issues, I have far more personal issues with dreams.

As the parents of a chronic kiddo we’ve had to teach ourselves how to dream new dreams – different dreams. As parents we all look forward to the arrival of our children with joy. The promise of a new, perfect little life gives us hope, the chance to dream of what our child will do, will become. But sometimes a visit to a doctor’s office can change these dreams in a heartbeat – in our case literally. I can still remember sitting in the parking lot after leaving the neonatal cardiologist’s office having just been told our baby was not “perfect”. In that very moment we started a mourning process – we mourned the little boy that would not be. Our old dream may have been shattered that early Tuesday morning in a parking lot in downtown Phoenix but we soon started down a new road in search of a new dream. We quickly stopped allowing our grief to define the remaining months of my pregnancy, surrounded by several pregnant friends that wasn’t always easy but we forced ourselves to do it. We started to educate ourselves about what Max would face, we sought out other families with kids who had Max’s diagnosis and we interviewed cardiac surgeons and visited Pediatric Intensive Care Units. While my friends were shopping for strollers we were shopping for a cardiothoracic surgeon (a week earlier I’m pretty sure we didn’t even know what they were!) But as we did all of this we gave ourselves and Max the possibility of new dreams. Much as we would not allow our grief to define us, we would not allow Max’s diagnosis to define him as a child or us as parents. So although Max would not be many things there were (and are!) far more things that he would be.

Our new dreams weren’t smaller, less spectacular dreams rather they were merely different dreams. There were several times when Max was extremely sick those first eight months in the hospital and there would be a gaggle of doctors, nurses and techs in his room doing some life saving procedure, crash carts included, and I would plead with God in a loud voice, “God, please, please save my son – I don’t care if he doesn’t grow up to be a doctor or lawyer. I just want him to grow up, even if it means he grows up to rob 7-Elevens, I just want him to grow up!” I remember this not only because each of those doctors, nurses and techs remind me of it every time I run into them in the hospital but because it’s when I came to realize that dreaming what my son would or might be is far less important than dreaming about who my son is. He is a little boy with a great BIG ego, sense of self, and exuberance that can’t be matched. If Max doesn’t define himself or his dreams based on his limitations why should we? Max will never be a professional athlete (personally I think that ship sailed long before we knew Max had health issues, with me as a mother agility and coordination were quixotic dreams at best) but he does have the spirit of one. Max will never be the fastest runner but he will be the most enthusiastic one. We’ve learned it’s not about what Max can’t do – it’s about what he DOES do and how he does it, always with zeal and his trademark smile on his face!

So this week as we hear all the talk about the fulfillment of dreams for our nation, we will continue to dream our new dreams for our son. New dreams, different dreams, but still very good dreams!

From the mouths of babes

In the midst of one of our never-ending conversations today I realized something about my son. I realized that “Chatty Cathy”, while sometimes annoying because he just doesn’t stop to take a breath between questions and rarely has an inside voice, had some great insight on any number of topics. These topics range from the weighty to the mundane to the just plain wacky.

Why do some people hate other people enough to go to war? Can’t their mother just take away their TV, computer and Wii like I do when he and Ellie fight? I swear I’m not making this one up, evidently my son finds me scary enough to think that I should be able to bring peace to the Middle East by threatening all warring factions with the loss of their privileges. Does anyone have Hillary’s phone number? The State Department may need me…..

From war and international strife we moved on to the all important discussion of what’s for dinner, today, tomorrow and the day after that and so on. Food has always been a top priority for Max. I can remember at age three when we finally got Max off tube feeds and he was eating completely orally he would wake up every morning, open his eyes, and immediately ask what we were having for dinner. It was as if he was making up for lost time. So today when he asked me this question and I gave him my usual “I don’t know” Max walked away in disgust muttering to his father that “his wife” was never organized and never knew what she was doing. And while I know many parents would find this comment disrespectful all I could think was, “Boy, does this kid have me pegged or what?”

And finally, as I was putting him to bed tonight Max asked me what kind of monkey I would want to be if I were a monkey….is this the same child who earlier in the day suggested that I held the key to world peace? In less then 24 hours I went from diplomatic genius to primate. By the way it was decided that Max was a chimpanzee, Michele was a gorilla, I was an orangutan and poor Ellie is a baboon!

And on this note I close by saying good night all and have a great week! I need to go check if we have enough bananas for breakfast…….

All good things must come to an end…

Tomorrow we return to reality: alarm clocks, the morning rush, work, school, homework, etc., etc. Life as we’ve known it for the last two weeks is over. There will be no more sleeping until noon, considering clean sweat pants as being “dressed”, lounging on the sofa watching bad TV or reading even worse books, playing Wii 24/7 all while moaning “I’m bored….” Did I just describe the kids or the adults? Who knows, none of us really accomplished much during our break. It seems I always start a break from work with such big plans: clean out the closets and garage, scrub everything that comes into my line of vision, maybe take the kids on a few day trips and park picnics and end them with the incredible disappointment of having done absolutely NONE of these things!

I’m truly not excited about the prospect of returning to the cold, hard reality of everyday life. Max is even less excited, it’s well past 11:00 and I think I’ve finally threatened him within an inch of his life because he hasn’t been out of his room in about 15 minutes. As I scream like a crazy woman at my child I stop to think what my neighbors, who can obviously hear me (unless of course they have been certified as deaf by a medical professional), must be thinking……The only person unfazed by our looming reality is Ellie, she has one more week of break and has no problem gloating to all of us about this fact. Being the ever loving mother I have succeeded in wiping the smug smile right off her face with a very long chore list that would make Attila the Hun look like a nice guy!

Hopefully this week will be uneventful. We’ve all been so sick this last week that I feel pretty confident that we should all be healthy for the time being. So other than a quick doctor’s appointment or two for Max (yearly check ups with his specialists) we should have a quiet week. Or at least I can hope!

Have a great week all!