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Momo Fali's: Invisible

Sunday, February 13, 2011


Since my son was born in May, 2002, I have had a lot of bad days.  Watching him get taken to surgery nine times, seeing catheters shoved into places that boys shouldn't have catheters shoved, watching him get stuck for IV's so many times that I've lost track and seeing him almost die twice will tend to make every day feel like a Monday.  A Monday when you realize that you're all out of coffee and you don't have any clean underwear.

There have been so many struggles that parents of a typical child can't even imagine.  And before someone comes along and tells me how fortunate I am that my son can walk and talk, I will say that I know we are lucky.  I have spent enough time around children in the hospital to know that things could be horrifically worse.

But, there have been struggles.  It took 13 months before tube-feeding wasn't an ever-looming threat and it was 18 months before he took his first step.  That was after weekly physical and occupational therapy appointments and more genetics tests than even the geneticists knew existed.

He is almost nine and he vomited while eating just yesterday.  He can't button his own pants.  We found out last week that he needs hearing aides.

As a parent, you fight through these situations.  You modify his surroundings, you buy him velcro shoes, you cut his bites into little pieces.  You, quite simply, adapt.

But, there are certain challenges where there is no fix.

My son is not only medically different from his peers, but also physically, emotionally, behaviorally and socially.  He is tiny, quirky and the most unique individual I have ever known.  Most adults "get him" and appreciate him for who he is.  Most kids, don't.

For the past six weeks, my son has been enrolled in a basketball clinic at his school.  This was more of a social exercise than an athletic one, as my almost nine year old weighs only 43 pounds.  He did, however, just move up from a 5T to a 6 Slim, so he has that going for him.  He'll be out of that negative 3rd percentile before we know it!

Over the last month, my boy learned to dribble and bounce-pass and he learned to play one heck of a man-to-man defense.  He had fun.  They ate pizza after today's scrimmage.  He tried his best.

He has no idea that I sat in the stands and cried this afternoon, because I watched every kid on the court look right through him when it came time to pass a teammate the ball.  My husband knew I was crying, as he sat stoically, but I told him that it was making me sad to watch and he replied, "I know.  It's awful."  If he was a woman, he would have totally needed a tissue too.

I can't fault the boys.  They're young and they wanted to win.  They were smart enough to know that my son couldn't make a basket.  Boys don't have the compassion that girls do.  No offense, fellas, but I'm going to have to generalize this time.  If my son was on the other side of the ball as a typical child, then he would have probably done the same thing.

But, he wasn't on the other side of the ball and he is not a typical child.  I watched him holding his hands in the air, waiting for a pass, for over an hour.  He got a chance to dribble twice, when one of the parent volunteers TOLD the boys to pass it to him.  He loved those few, fleeting seconds.  I could see the pride in his face.

As a parent, you want your child to shine, not be ignored.  You want the world to see what you see; that inside the quirky kid is a funny, smart, gentle soul.  Okay, okay...he's ornery too, but everyone does see that.

It is so hard to have a child like mine, but it is also very special.  It is a joy to see him succeed and to go places I never thought possible.  To me, he is a gigantic force in the universe.

But, to the boys on the basketball court, he is but a speck.

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What a hard day.

I think I saw you in Kroger and now wish I would have stopped to give you a hug.

Tomorrow, shower that boy with love!
Big hugs, mama.

Oh, I don't think so. In terms of a game that's over the next minute, maybe, but in terms of what they're learning in life from him, that's forever and for the good. Just wait till they're adults and it starts to come out.

I listened to someone in church today describe his brain damaged sister, someone who was always notably different, and who recently died after her brain shunt got infected.

A classmate from kindergarten 20 years earlier surprised him when she told the family about an angry kid in that class whom nobody liked, whom the classmate was piling it on with "I don't like you!" etc etc like the others.

And Katie had stepped in and said, "Stop! She's my friend!" and hugged the mean angry kid nobody liked.

That classmate who'd been stopped never forgot it and told the brother that from that day she tried to be more like Katie. To be nice to even the meanies.

Even the kids who had to be told by their parents to let your kid have the ball: they're being given an opportunity to learn that it's not all about them, and to look out for others' emotions, to be more empathetic. And they let him have that ball!
I've been sitting here trying to think of something to say and coming up short.

I can't pretend to know what all of this is like for you. My boy Asher has been through so much, but nothing like all that your boy has been through and will continue to go through. Being Mom is really hard.

Peace to you, lady.
Ditto what Allison so wisely said - your sweet boy is teaching in his every move, maybe not immediately, but the lesson is being implanted.

Still...not fair. Hugs to you, big-hearted, Momo.
I wonder if you can talk to the coach, or whoever is running the clinic. Unless this is a serious game in a league, the coach should be making sure that everyone gets a chance. It is the only way for everyone to get better. I think you are right... if the aim of the game is to win, the weaker player will be overlooked. But if the coach can make everyone understand that part of the process is to get each boy to improve, even typically selfish boys can get behind that. And boys do appreciate when someone tries hard, even if the result is not always a success.
Hats off to you and your husband for letting the young man on he court. I am terrified at the thought of our son, with full metal ADHD, on a court with any other children, but I'll have to cope and get over it.
If you saw happiness on your son's face with the ball, that is awesome and relish in that.
Besides, we all know what becomes of those guys that don't learn to play as a team and pass the ball. D-bag city, baby.
I'm so sorry. I can't imagine how it hurts you, but I understand that kind of hurt. These other kids may not understand now, but hopefully your son will help teach them to be understanding of differences, whether they are visible or not.

He's an awesome kid, and I have no doubt he'll inspire other kids around him as he gets older. The important thing is for you to focus on him, not the other kids. He's going to shine in his own way, just like any child.

(It's not just boys, either. Girls can be ultra cruel, too. I'm just happy that Cordy is so far oblivious that many kids don't want to play with her and call her names. Playgrounds are so hard for ME to endure.)

Hugs to you. Being a mom can make you cry a lot.
You've got some smart readers, Momo! I love what they all had to say. :)

Being a parent can be so incredibly difficult sometimes. Wanting to be there to fix everything and knowing that sometimes you simply can't. But the confidence that he has from having parents who are his staunchest supporters let your boy go out there and do his very best. He's a keeper, that one. And so are you.

the tears in my eyes and my heart.

I love you.

I love him.


just. damn.
Lots of love, Momo! XOXOX
Thanks for sharing. As a man, I hope those boys, and everyone else that interacts with your son, see the blessing that I am sure he is to you and your family.
this is the worst of times.

the best are yet to come.
there's nothing worse than watching your child going through stuff you can't fix. nothing. but what a blessing indeed that you are his mom!
This breaks my heart. I teach special ed kindergarteners, so although I don't know what it's like to be a parent of a special needs child, I do carry the pain as well. I just took a pic of one of my babies in the after school program playing with normal kids and sent it to my co-teacher with tears at how well they included him. You should check around to see if any local churches have Upward basketball and soccer. It's much less competitive and everyone gets a turn. Also, what about a special ed team? Around here, they have Challenger Little League- my autisitc brother LOVED this growing up! ((hugs))
I have sat in the stands feeling just like you did after great success for my daughter in OT and PT, she has made so many great strides.. yet gets that same kind of overlooked. Its pride and sadness mixed with want to jump up and defend.

I'm sorry the hits seem to keep coming with your son regarding medical issues. My oldest has 4 different diagnoses, but aspergers is the only one I really talk about.

Oh my heart hurts for you. Im sorry today was so hard. I am glad to know more of your journey. Im glad you are posting about it. You are a wonderful mom and so brave for sharing your heart about today. I'll be thinking about you.
My heart goes out to you. Tomorrow is a new day.
I understand every word you are saying and have cried the exact same tears.

I recently wrote that my son deserves to have his big life valued not matter what his mental health issues and physical challenges are and I mean that in every way possible. I want that for your son too.
My eyes welled up reading your post...I don't know what it's like to live a day in your shoes but I can imagine and my heart aches...I have no solutions but only hope and pray that others will see the special person in your son the way you do and the world will be a kinder place to not only your son but to everyone.
Crying for you, baby doll.

Love you.
Obviously I can't imagine from personal experience what this feels like to you, but my heart hurts about it and I just want to hug you. xoxoxoxoxo
You realize that I literally have tears rolling down my face because that *is* my son. I coached t-ball this past year because it was impossible for him to do it without me ON the field physically helping him. We're done after last year though. I just couldn't do it to him or to me anymore. Granted, I'm "lucky" that he's socially oblivious enough to not catch much of it, but ... it still hurts. And will. *hugs* to you - and I know how well what you're going through.
I wish I could do more than this, but... HUGS HUGS HUGS...

he's an angel here on earth, and YOU get to be his mama. it's a huge calling, but no one could do it better than you. and no mother loves her kiddo more, I'm sure of it.

Hail Momo, full of grace. Our Lord is with thee. Blessed art thou among women, and blessed is the fruit of thy womb, Adam.

(yeah, I'm totally not Catholic, but I bet I probably need to go to confession after that... but I don't care. you're a SAINT!)
:( I totally understand how you and why you felt like this but you're right in that this is boys being competitve and nothing personal. My oldest son has played basketball the last two years and while he's techincally special needs, he is for the most part a typical boy. He is just young compared to some of the boys that play and hasn't played since birth like many of them have (he was born w/a bat in his hands) the boys never passed to him by choice either. For a bit I took this personally for another reason whcih I won't articulate because I don't want any backlash from other commentors. But the truth was they knew his abilities compared to the rest of the team and they wanted nothing but to win. The last game the coach repeatedly called plays for him and the other boys who hadn't scored all season. He finally got a basket and is so so proud of himself. He succeeds at a LOT but that was something he really had to work for and it was amazing to see that pride.
I hope that in the future both of you will get that chance too. If they are grouped by age, I'd ask in the future if you can keep him back based on his size. This might help. And I say dn't be afraid to talk to volunteers and let them know how much he enjoys it. Sometimes I've seen coaches who assume kids who aren't great are there becuase they are forced to be and they don't care if they play...I've seen this be the case too. So don't be afraid to point out when he isn't get his fair chance. Not that I think you aren't already a great advocate for him. But I know sometimes we can talk ourselves out of having these types of talks.
Hope this week brings a wonderful high point to help wash away this low
(((((MOMO)))))) I dont know what to say. I see what you want for him, I think he sees it too. He teaches us all, let him know he teaches 27 year olds with 8 year old boys to look for ways to be more kind and compassionate. Thanks for letting us look in. I love you girl. I miss you more than you know.
Sadie wears similar shoes.

I still cry.

We just moved into 18 mo. clothes... she's 4 years old.

MAny more similarities... but this isn't about Sadie.

I want you to know we care. Sending lots of love!
This kind of glimpse into life -- your life -- is what is so powerful about your writing. An evocative glimpse we can all immediately relate to, even if we don't have a child like yours. Thank you for writing this and sharing it. It's heartbreaking and beautiful.

From all of the stories you've told about your son, he strikes me as an incredibly strong and resilient kid. He'll teach all those other kids and thing or two, for sure.
Our love and prayers go out to you and your son. You are loved. By him, by all the beautiful words I read that your people wrote and I just read, and by the Lord. Your boy is here for a very special reason. Maybe his reason was for me, a complete stranger, to read your words, their words and KNOW. Be strong, stay strong. and PLEASE know that we will think of you both and pray for you also. Being a mom IS hard. So very hard. Please know and remember you have good thoughts and support in Alaska.
I so wish that we could take the hurts from our kids...

But without the hurts, I guess I wouldn't have become the strong woman I feel I am today. And I wouldn't trade away those life experiences for anything, no matter how much they hurt me as a child. I hope that all of our kids feel the same way about their own childhoods.
Amazing post. You're not alone- so many of us are sitting right where you're sitting. Thanks for articulating that pain so beautifully.
Mo! I had a weird feeling about you this afternoon sometime. I wondered what you were up to, which isn't unusual, then immediately felt like something may be wrong. :(

Who knows? He could end up the next Muggsy Bogues. And at least the kids are seeing a whole lot of HEART in him. He was getting out there and TRYING, not pretending to be Bowser, stomping around while the other kids play their hearts out (*ahem*). It won't take the other kids long to see the difference.

My heart hurts with you, Mo. GBH.
Parenting is harder than I could have ever imagined and I am no where close to wearing your shoes or walking your walk. But I can sympathize remotely with that helplessness, with the crying on the sidelines because you just want your kid to fit in while loving that he's not just like every other kid - he's different but better also. It's such a miserable struggle but thank god he's got you as a mom. Because you are there cutting his bites smaller, buying the velcro shoes and adapting. Not everyone stands up to the challenge - even as a parent. I've had the pleasure of meeting you and knowing you and I can tell you that while I know you struggle, your son - your family - is very lucky... to have you. xo
I know it's not their fault, but I still kind of want to kick those boys in their little shins.
Have you ever met Tulpen? I think you two would like each other.
He is entirely visible, and more awesome than they know. The smart ones will get it (they are out there, I promise) and they are the ones he will need in his life.

Speaking as another invisible-on-the-surface child, the one great benefit is a filter like no other. You learn very quickly who is worth your time and trouble and it saves a lot of time and energy in the short and long run.

Plus he has you, and his family. From that base he can move whatever his personal mountains are, I swear. This is not to say that some days won't suck, but he will always know that he is loved, and that is so crucial. No matter what I've had to contend with, that is what has given me the courage to face whatever has come. I'm holding both of you close in heart tonight.
That has got to be so hard for a mama and a papa. Hugs.
Oh honey, I have NO IDEA what to say at a time like this. So, I am just going to send you some hugs.
I sit here in front of my computer wishing I could hug you and your family. I have a daughter who spent most of her elementary years being invisible. It's hard to watch, especially when they begin to understand what is happening. In the end it may make our children stronger, but in the now it just plain hurts.

What astounds me the most is that our kids (those with "special" needs) keep trying. They don't quit. My daughter finds more forgiveness in her heart than any 100 other people, including myself, I could name. And she is the one who taught me my greatest lesson:

One day I asked her why she kept trying to participate with classmates who continually ignored her. Her answer; "mom, they just don't know better, cause their mommies and daddies haven't told them how to be nice." The untter truth in those words shocked me. When I see a child being excluded I immediately tell my children to try to include him/her. I tell my children to treat others how they want to be treated. I tell them to reach out because you can never have too many friends. Unfortunately, I don't always see other parents doing the same.

Step up, parents. Help your child learn about compassion and inclusion. And watch your child bloom with friendship and love.

Blessings to you and your family!

I had to let you know I feel for you and wanted to tell you we've been through this too. My son is neurotypical, but he is small for his age also, 8 1/2 years and only 47 lbs. He can wear the 7 slims! He played basketball last season for the first time and he too was passed over for the kids who had the natural athletic ability. It hurts watching that. The coaches were great and tried to make sure everyone got a chance to play and try to score. But when the kids were passing on their own, they almost never passed to him. I just wanted to let you know that you are not alone.
I don't know what to say, I want to be witty and smart, but it sounds trite...I've written it five times and erased it each one...just know that how you say, what you say, makes us think about what we say and what we do...that's pretty impressive.

Gynormous hugs from UP.


he will shine. maybe basketball isn't his thing, but he will shine.
I'm so glad you had him do the camp despite the challenges. Hugs to you Momma.

He IS shining just by being there!

Love you!
There's so much in this post I feel like I'd need to read it ten times. I might. He is a gigantic force in the universe.
I may have long ago surpassed an age to be legally considered a grown up, but no one would ever call me an adult.

I love your son and all of his ornery, quirky self.

He can play on my team any day.
Oh, Momo. All I have are my tears, a hug, a whole lot of love for your family, and admiration for you.
I totally get this. My son was a teenager before he had any real friends. He started skate boarding and the other kids he skated with were awesome. They accepted that he wasn't the greatest, but he tried. It was a wonderful boost to his morale and self-confidence. He still only has a couple of real good friends, but he's not last man out any longer.

Your son will find his niche, hopefully sooner than my son did, and he will find some great friends who like him no matter what.
If those kids were smart, they'd learn to use that "speck" to their advantage--"invisibility" could quickly become "stealth" and who else but he could dribble UNDER his opponents?

I know it must have been hard to see him overlooked...but you said he had fun, right? Maybe that's enough for now--until the other boys learn what an asset he can be!
Just. Hugs.
Big hugs, lady.

You are the best Momma that your son could have ever been given.
I am so sorry Momo. I for one, think your son is one of the most incredible little boys I have ever "met" (aka heard of). He is so so so special.
You are a great mother and that was a beautiful post.
What Sashalyn said above? Seconded.

Beautiful, beautiful post.
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