Another Backseat Conversation

Last night as Max and I were driving home he started a conversation on the concept of “luck”, Max concluded that he was not lucky at all because he has a heart defect. After a few moments and more thought he decided that it wasn’t true, he wasn’t unlucky because “even if my heart’s not right I have doctors who love me enough to fix it and save my life”. Talk about taking your breath away….how can an eight year old be so insightful into matters such as these?

Of course it’s probably only fair to mention that Max finished this conversation only to move on to “Mom, what’s for dinner?” So from the profound to the practical, Max was able to decide on his fate and to let me know unequivocally that he was not interested in leftovers for dinner at all!

What a night!

As of late I haven’t been sleeping…at all! So last night I forced myself to go to bed around midnight, I must have drifted off because the next thing I knew it was 12:15 and Max was running around the kitchen with one of his epic nosebleeds, argh!

Here we go. We all know the drill: one of us holds his nose while the other goes to get dressed, we then switch places until we’re all dressed, except for Max who is wearing a pair of PJs that look like he works in a butcher shop. We fiddle with everything we have in our bag of tricks: holding his nose until it turns blue, using a clothespin looking device to hold it shut, and finally we pack it with the same stuff boxers use sometime in the 3rd round of the championship fight. We know when all of this is failing because Max starts to spit up copious amounts of blood and, not to gross you all out, it starts to come out his eyes. The first time this happened we were in the ICU at Hopkins and I completely LOST IT! That was until I realized it’s all the same plumbing system, if you close off one pipe another will spring a leak, so now none of it freaks me out. It is what it is, and unfortunately “it” is ours.

As we came to realize that we were failing miserably at getting the bleeding to stop, we start to get everything together for a midnight run to PCH (thankfully we were already dressed). By this time Max is hysterical, not due to the blood but he just doesn’t want to go. He was absolutely inconsolable which is difficult to watch but when he came to realize that he wouldn’t be able to play football tonight he really lost it. Of course crying makes it all worse so now we are trying to hold his nose, hold his spit up bucket, pack bags, take the dog out, wake Ellie with the news and most importantly calm Max down. Certainly any spectator of this scene would not have believed the unbridled chaos that was our kitchen.

We decided to try packing it one last time, this was attempt number three and evidently three really is the magic number, it seemed to work! So we all proceed to the sofa and stare at Max’s nose, waiting to see if Mt Vesuvius would blow again, it was sort of a cute scene, Max with his clothespin on his nose lying up against his dad, heading bobbing from sleep but refusing to give into it. Finally around 5 am we all went to bed….for 45 minutes when it was time for Ellie to get up for school! Max, of course, was already playing baseball on his PSP looking a bit like Rocky after he lost the fight to Apollo Creed but otherwise happy.

I swear this kid will kill me yet!

Pleasant Surprise

If I was keeping score I'd say we (Max really) won today's IEP round 2 to 0. That's right the school gets a BIG FAT zero for their efforts this morning.

Now I know no one likes a sore winner but here's how things played out.

• As we walk into the room I am greeted by a woman who introduces herself as a Speech Pathologist. Really? Speech therapy for Max? What are you going to teach him...how to shut up? She told us she felt Max qualified for an "evaluation" due to some lisping of "s" and "z". Seriously has this woman ever been to an extended family dinner at our house? The whole family is spitting and slurring their "s" and "z" sounds (this is before the wine even comes out). We agree he can be evaluated but we do not agree that he should be pulled out of class for Speech. She actually agreed with us! One point for us, zero for them. Heck it was almost as if the Therapist kicked the ball into our goal for us. She actually admitted that Max didn't really need the services being proposed!
• Now it was the resource teacher's turn. She went on and on about the progress Max has and is making, that she just couldn't be more pleased with him, etc., etc. At this point I can't help but think she too is planning on kicking the ball into our goal for us. And guess what? She did! She proposed that the kid who is reading on a 14 year old level should "graduate" out of resource reading and be returned to the classroom with his peers. At this point I decided I wouldn't fight for the "gifted" program as was suggested by the docs who evaluated Max last fall but at least he's out of that horrible room! Without a peep out of me (hard to believe, huh?) we earned another point. Point two for us, nada for them.

The rest of the meeting was really rather boring. Medical issues, concerns, etc. It's amazing how I was convinced today would be an ambush but instead my son once again proved me wrong, after all it was his hard work and desire to prove his naysayers wrong that got him this glowing report. I wish you could have seen him run out of school today shouting and giggling that he had "graduated" from "that stupid phonics class". His smile was so broad and his delight so real that in that moment I realized it truly is all about him, getting him the support he needs and being sure he has all the tools necessary for his success within reach. It is not about me and my desire to prove to the world that this child of mine is the most wonderful being God ever created (I'm his mother I've earned that right), it's not even about my need to fight the system (although I admit this trait is really pre-Max), rather it is about him, his happiness, and his self-earned success.

You go Max! You go!

Nothing too Exciting

Max is getting very nervous about the fact that his secretary has not been updating “his page” quite as quickly as he likes. Fact is I have very little of an exciting nature to share. The kids are in full swing of school and all the activities that this entails. Ellie is gone from 7am to 6pm everyday between school and swim team practice. Max on the other hand gets home at 4 but only has time for a quick snack before therapy of one sort or another begins. Then of course there’s always dinner to get ready and the ubiquitous homework to get done. I swear that no one told me Max started college this year; he actually has more homework than Ellie does for her honors classes. How does that happen? Before the school year started a friend told me that 3rd grade is always hardest on the kids and I guess she’s right once again (yes Ann, I’m talking about you). After full days like these I would expect the kids to fall into bed exhausted but instead just Mom does (something tells me the wine helps with this)!

Max started catechism again this week. He was quite surprised by this because he was convinced he “took care of everything last year” (direct quote). Last year, as some of you may remember, Max received the Sacrament of Confession which he used to his fullest advantage by confessing his parent’s sins not his….I can’t wait to see what he does this year as he prepares for the Sacraments of Holy Communion and Confirmation. I’ve learned to not hold my breath with this kid!

On the topic of religion I ask that everyone pray for me this week, we have Max’s IEP on Wednesday morning and I’m hoping I don’t kill anyone….wait, it might be better if you pray for the school officials. Stay tuned for more news on this front!

Have a super week all!

On the Lighter Side

What follows is part of the conversation overheard from the back seat as we drove home from yesterday’s ball game.

Max: El, how old is Joe Torre?

Ellie: I don’t know, he’s probably ancient……like Mommy’s age or something.

Max: But he’s not dead yet!

Of course what followed were gales of laughter between my children and a big smile from Michele.

Have a happy week all!

Sometimes This is So Hard Part II

Although I thought my last post covered most of the realities of Max's school day, last night I was hit in the face with a little more reality. As usual Max came home from school with his report for the day, how he did, what he did, etc. Most of it was typical stuff but as I got to the very bottom of the page there was a short note that read, "Max was sent to the RC today" followed by a frowny face. Not knowing what the "RC" was I didn't know what to think but the frowny face indicated to me it wasn't positive whatever it was. When I asked Max about what happened he immediately became agitated and told me he couldn't remember, the more I pressed the harder he cried. At this point I didn't know whether to scold him or comfort him because I really didn't have a clear picture of what had happened.

When I took him to the sofa and talked to him eye to eye I could see the tears well up and run down his face, it was really heartbreaking. But still I didn't know what happened. As Max talked, as best he could through his tears, I came to understand that the "RC" was where you were sent in the office for being bad. OK, great Max had misbehaved and clearly someone would throw this in my face at some point....or so I thought. As Max continued I came to understand that during recess the rest of the boys were playing football and they wouldn't let him play because he wasn't as strong or fast as they were. In fact, he said he was tired of never being picked to be on a team. He told me that all he wanted to do was play the game with the other boys so he tackled the kid who had the ball. That's when all Hell broke loose, Max got in trouble for tackling the little boy although he said they were playing "tackle". Hence Max's trip to the "RC".

By this point I was comforting Max with my own tears streaming down my face. How do you possibly confront this situation in a manner that is both positive but also realistic? Do I explain to Max that today's events are only a taste of things to come or do I tell him it's OK and those boys just don't realize they're being mean? On one hand I don't want to crush Max's self-esteem by telling him that he is "different" but on the other hand I would prefer this news come from me, someone who loves him to pieces just the way he is, not someone who doesn't care one way or another. I really do hate this because either way I will question if I handled the situation correctly. I can't let Max get away with bad behavior and bad choices just because he is frustrated even if what is frustrating him is some other idiot's actions.

So as best I can tell I have to make a trip to the school on Monday morning and straigthen this whole mess out. Believe me there are days I just wish I could keep Max home and protect from the lunacy of the "real world" but logically I know that's not realistic or fair to him....sometimes this is all so hard……

When Others Don’t See What You See

We are about five weeks into the school year and it’s becoming more and more apparent to me that many of the people Max comes into contact with throughout his day just don’t see in him what we see in him. We see a child who has had to scratch out a place for himself from day one. His survival, his success was never a given but rather a daily fight that Max in many aspects fought by himself every day. We could be there with him but he was the one who physically did it all, survived the surgeries, the countless tests and most importantly the doctors! There were (and are) ultimately only two people who decided Max’s future – him and God.

Because Max was not physically strong he developed other skills – he spoke his first words at 9 months yet he didn’t sit up on his own until his first birthday. He could put sentences together at 15 months yet he didn’t walk until he was 21 months old. Max has been different by necessity from the beginning, not just medically but also emotionally and I really think others sometimes have problems with these “differences”. They find it problematic that he needs to understand the why and how of things and so asks a gazillion questions. They prefer the child who takes in what you tell them and then spits it back out at you. Period. End of sentence. The child who delves deeper causes a bottleneck in the “flow” of the classroom.

Because of this I know that when we go into school in a few weeks all hell will probably break loose during Max’s IEP (Individualized Education Plan). Have I ever mentioned I detest IEPs? Without a doubt the IEP process is one of the worst aspects of parenting a child who is different in any way. Why is it that society is so wrapped up in the “norm” and anything short of that causes them problems? When we go to these meetings I usually bring a picture of Max in his early days just hours post open heart surgery, my goal is not to “gross out” the teachers, psychologist, aides, etc. but rather to drive home to them that no matter what they think Max has made more progress that the entirety of his classmates put together and then some. I want them to know that when they doubt Max and his abilities they are nothing short of dead wrong. This child is different -- he is not stupid, he is not incapable. Yes, he is strong willed and very determined but he has had to be and it is not automatically a negative to have a strong personality (he is my son after all).

During the IEP I will have to fight like crazy to make sure that Max gets only the services he needs not the ones that are easiest for the school. He doesn’t need to be pulled out three times a day to be taught down to, he reads at a middle school level why in God’s name are you pulling him out for resource reading? Oh, right it’s easier for the teacher to have one less student in the classroom. I am certain many of them find me to be “one of those mothers” who just doesn’t get that their kid isn’t perfect, as if the 35+ surgeries didn’t already teach me that, but I am not. I am not the “hysterical mother” I am merely realistic that Max is what he is, for good or for bad. Why can’t they just see the good as well as their perceived bad? Sometimes this is all so hard…….

Fourteen Candles

Ellie's big day was great. She spent some time with her oldest friend who moved away two years ago and of course she had the birthday dinner and cake of her choosing. Who could ask for anything more?

Have a great week all!

Happy Birthday Ellie!

I'm sitting here trying to remember the night my first child was born. In typical Marangella fashion it was a dramatic emergency c-section and although I remember very little of all the chaos in the delivery room I still have a very clear memory of a nurse whisking by me with the most beautiful pink baby with great big black eyes and a perfectly round head. I should mention she was "whisking" straight to the NICU where Ellie spent her first two weeks of life. We never, ever do anything the easy way and at the time with Michele stranded in Italy and me relying on my mother to drive me to the hospital everyday (that's a whole other story, I should mention that my mother does NOT drive on freeways and we were in California, got the picture?) to see my baby I thought it was the end of the world. Two weeks in a NICU seemed like an eternity, in reality it was my "practice drive" for things to come with Max.....

As all moms know there are few life events that rival the birth of your first child, no matter how they arrive.

Ellie, we might not say it often enough or loud enough but you are loved as only a first child is loved. We wish you a very happy and healthy birthday....and please stop growing up you're making me feel old!

Photo and video editing at www.OneTrueMedia.com

Thanks Christie!

Today I realized that I don't take pictures of my children anymore, I just rely on Christie to do it! In the end it works out really well (or at least it does for me) for many reasons: Christie takes a much better picture than I do, she actually remembers to take the camera with her on outings and above all else she's not as lazy as I am!

These pictures are from last weekend when Christie took the kids to Makutu's Island, a D-backs game and a concert all in one day! They were thrilled with all the activity and well let's just say I was thrilled to not be the one doing it......

We've finally caged Max in, it didn't last......

Just hanging out.....

What a great picture!

Max and Co.

There's nothing like seats in the "All You Can Eat" section. Max was in Heaven!

I see you!

Just a little blurry, Max may have taken after his mother when it comes to his photo taking skills.

Max at a ball game, playing a ball game on his PSP, don't ask.....

My Turn

We’re just home from the hospital but this time Max WAS NOT the patient! It all started Saturday evening, while we were sitting on the couch watching a movie I had a quick onset of severe chest pain and numbness, mostly in my arms. Because I felt no better on Sunday morning I ACTUALLY said it was time for the ER (which immediately scared Michele because I always refuse to go to the doctor no matter how crappy I feel). Long story short after spending most of the day in the ER I was admitted for observation and Michele finally went home to the kids who had been alone most of the day.

On Monday morning I was set to bust out when the attending doc made it clear to me that he was NOT cutting me loose. When I saw that assuring him I was feeling fine wasn’t working I turned on the water works and pleaded to be discharged. He wasn’t budging. After hours of test after test after test and no sleep whatsoever Max showed up after school for a visit. He was quick to pass on some of his veteran tips for hospital survival:

1. Although he knew being in the hospital was boring if you ask for a coloring book and watch Sponge Bob it wasn’t too bad.
2. Never order the chicken nuggets, they’re soggy.
3. Avoid the hospital school and doing your homework at all cost.
4. NEVER let them put the IV in your hand (too late for this piece of advice).
5. Don’t cry if it hurts.
6. If you’re good during blood tests you’ll get a prize from the treasure box.
7. And most importantly, leaving the hospital is the best part of all!

Thank God I had Max to guide me through, it was really quite sweet….up until the point when they delivered my dinner which he dually sat on the bed to eat while watching Sponge Bob. Perhaps he was just demonstrating how well his tips work?

Fortunately everything seems to be fine, it was suggested I stay as calm as possible and cut out all sources of stress. I’m still laughing my you know what off at this prescription but at least I’m home so they can’t consider moving me to the Psych floor for hysteria!