I love you because I love you

I have been waiting for the day when my little girl could write words on paper.  I have been waiting with excitement for the milestone, but more as a relief that if she needs to communicate one day more than the limits that her body may put on her, there is a way.

We have been waiting so long to hear flowing words, because we feared for a long while that she would never speak.  Daily therapy, program after program, hundreds of dollars on books and headphones, careful choices in play dates and verbal situations paid off when her school agreed that she could go ahead and enter the first grade.  The words started to flow in a manner that was painful to let her finish.  I wanted to just finish them for her, because I hated hearing her struggle and I probably would have done so if she wasn't so proud of her new vocabulary as am I.  I'll listen to her stumble for close to an hour and sometimes I'm not even sure what she's talking about, but when we lay in bed together at night before she drifts off we are just a couple of old hens exchanging some laughs.

We also worried that she couldn't understand us when she was young, because of the lack of response.  We were unsure of which way it could go too... she was just a kid with sparkly eyes and a big smile.  So many questions turned into absolute and full surrender by my husband and myself.  Giving up on the why and putting all of our energy in the "let's just do this, baby."

In the news of Sandy Hook, having a first grader and a kindergartner at the same school, I am in absolute absence of feeling.  I packed my kids bags that morning with the feeling that no matter how hard this is on all of us, I am still packing their bag and will bring them back at the end of the day. When I placed the lunch bag in Gianna's school bag, I found this note from last week inside.

It's the exact thing I have always wanted for her.  Words on paper.  Words that can describe how she really feels inside.  What I read was exactly what I needed to hear on this rainy morning.  Sometimes disabilities can be confused with anger and violence and we've worked very hard to make it known that what you might see on the outside, is not always what is happening on the inside.  When she was small, she wasn't always a ray of sunshine, because she felt trapped and confused.  The anxiety must have been so overwhelming that rigid routines and certain behaviors made her comfortable and at ease, so we battled it with love and support.  We made it well known that she was fighting a battle, so that others could give her a chance and not live in fear and shame of a child with a need.

The girl we know now is happy to miss a soccer season or a piano lesson or karate or whatever it is fills the time slots of many of her peers, because she knows she has to "exercise her brain" to get to where she needs to be.  She spends extra hours working on speech, writing and reading because she loves to see how hard work can pay off.   I can't wait to see what life has to offer someone who works this hard out of pure desire and after last week's tragedy, I hope that God has it in her cards to give that chance to all of us.

The news of Sandy Hook hurt so badly because I'm in the middle of 6 and knowing how hard it was to get here... and to have it all thrown away would be beyond words.  One of the students died in the arms of his aide - the people who tirelessly give extra support to kids without making them stand out.  On paper, that's us.  I can't even imagine that sort of pain... we can only hope for comfort and peace.  Gianna's words on paper are the words of so many children her age.  They love us because they love us and may those children rest forever in innocence.

It Once Was Lost, But Now It's Found

I was thrown for quite a loop ... brought back to 2007 with a single sentence.  Pure joy and a giant smile fell over my face when I heard that something had been found.

We received a lot of things back then.  Flowers, cards, small tokens.  There was one gift that came to our door that we have treasured.  It was a garden stone, engraved with a saying and a small plaque with Sofia and Vincent's name and their "remembery" date.  It was placed gently, walked by daily and for a family who has yet to bury the ashes of their children, used as a special place to visit and put flowers or tokens from their sisters.

When we moved over two years ago, somehow the plaque did not make it with the stone.  When I saw it in our new garden, I welled up seeing an empty rectangle with some remnants of where their names once lived.  It's the little things that hurt.  When I was filmed for Daily Bloom's "Milm" video, the camera pans out to a shot of the stone, missing their names.  I'm sure I'm the only one who noticed besides my husband and I didn't even know they had filmed it, but no matter what that piece contained... I fixated on it.


So this weekend, our dear friends from our old neighborhood told us that last week, the new owners of our last home had come across the plaque in the yard and had dropped it off with them.  I'm not sure if it was hard or joyful for our friends to tell us about it, but I felt a wave of happiness hearing it.  My girlfriend said that she was looking at it all week and it was making her feel sad.  It's now back in it's rightful place, next to the rock people that the kids' created to represent how we look and I feel like I'm back too.  We are very grateful.

People always say how strong we are as a family and as individuals.  Sure, we have been asked to do some extraordinary things and each of our family members carries their own cross for it.  Then something as little as the memory stone makes me realize that we're easily knocked over. There is also the big "something" that we have yet to bury our children's ashes or spread them somewhere that tells me that I'm not strong enough to let them out of my home. I guess I still have too much on my plate, but whatever it is... the good thing is I'm trying NOT to be knocked over.  I guess we just do the things we need to do to protect ourselves and We Stand and we stand strong... so maybe that's just what everyone else sees.

Thank you for an act of kindness.

The Mystery Flavor

What's your stand-by Dum Dum flavor? Does the evil temptress watermelon excite your taste buds? Or perhaps you're the type to stand on a table dancing while enjoying the spoils of the blue tongued devil, blueberry.  Maybe you are knitting in your rocking chair lost in a cream soda day dream or rocking the status quo cherry style.

But for the total freak - it's always the same.  The mystery flavor.  The thrill of unwrapping a sweet surprise only to be occasionally disappointed by the dud of all flavors, coconut.  Living in the spur of the moment ready to take on whatever life hands you... or at least what Spangler Candy Comapnay has been handing out since 1924.

You Know Who You Are!

Whatever it is, the mystery flavor continues to be a favorite in line at the bank for my children.  Normally a Dum-Dum would not incite such madness, but when you eat better than Dr. Oz and you're under the age of 6, opportunities like this are seldom wasted.  As a parent, it's enjoyable enough just to watch the delight of squealing little girls digging thru a germ filled basket of personality choices.

Now that I've just given Spangler my bank treat endorsement, let me tell you how to lose your appetite for them just as quickly.  Watch tears stream down the face of your child when you decide that their behavior does not get to the reap the benefits of deliciousness and for reasons that are out of their control.  Horrible mother? Let's find out!

Discipling a child who is learning to control their impulses is a difficult task for any parent and child team.  It's a different task when you are dealing with special needs, but both are difficult in the same way.  Deciding that you are going to teach a life lesson when you'd much rather take the easy way out is just as hard on Mom or Dad.

We've come a LONG way from ear covering and thrashing and I'd like to think that we are a more sophisticated and fine tuned as in years past.  We see the signs of sensory overload, we cope, we replace, we reward.  But we also discipline. And when it comes to learning how to control impulses or at least recognize and replace them, it's important that they learn self discipline.

People often wonder what I'm talking about when I tell them that I have a child with sensory disorder.  "She seems so well behaved."
"I've never seen her act out."
and on and on and on...

Well guess what? That luxury comes with consistent parenting, constant role playing, hard lessons, and acceptance that their behavior is in THEIR control, not ours.  It's not by chance that my kid walked across the parking lot without flailing their arms, knocking into cars or body moving spastically.  It's a discussion when we get out of the vehicle, it's coaching the behavior and handing over the action instead of driving it and the simple success of it all is beyond rewarding for everyone.

Give kids the tools they need to succeed, show them how to use them and you have given them a gift for life.  I'm certainly not saying that at time I don't want to scream "STOP MAKING ME INSANE," because well, no one's perfect and sometimes they push me over my breaking point.  I'm saying that it's hard to get a child ready to be in the world without you, but the early bird does get the worm.  Or the Dum-Dum in this case...

So back to the Dum-Dum... that day we didn't make it across the parking lot.  We couldn't pull it together while filling out a deposit slip.  All was lost standing in a crowded line waiting for an open teller.  And we certainly didn't make it to the candy basket.  But I did sneak one and slip it into my purse before we left.  It breaks me in half to not give her the things that she wants considering the things that she continues to go thru medically and emotionally, but I'm not serving her any justice by covering life with sugar.  She has a feeding tube under her shirt, glasses for her preemie eyes on, standing 2 inches shorter than her little sister and crying in line at the bank and I'm sure as anything that she WILL remember this one.  It's going to be my job to make sure the memory ends on a positive note when it's time.

I still have that Dum-Dum in my purse.  I'm saving it for a time when she least expects it and is able to control her sensory or with a little help from Mom, deal with it.  The mystery is in the action when we are not around.. She's a few weeks away from walking into a Kindergarten classroom and I want her to be prepared for success and know that Mom is not always going to be there to catch her, but I'll be in the back of her head rooting her on to get back up when she does fall.

Adelina I love you baby... We can do this.

Alex

The girls have been reading about "Alex the Lemonade Girl" for years now.  A mutual (and great) friend of Alex's family sent us the book as a baby gift and it's given us years of pleasure. As our kids get older, the more they understand how incredible Alex is and why our family raises money for the very same hospital and our NICU.  They talk about her like they know her.

I say how incredible she "is" because I haven't the heart to tell them that Alex is in "Kevin" (aka Heaven) and has been there since before they were even born.  She gives them so much hope and she gives Adelina a place of understanding about being sick sometimes or not feeling right inside.  She gives Lucia joy when I read that she had a head full of curls too and was her age when she started her lemonade stand.  Gianna is in the midst of growing her hair to give to Alex before she goes in to first grade in September.  It makes them feel proud to be a part of something bigger than they are and that an amazing little girl named Alex is a kid just like them.

Alex's story was on CBS a couple weekends back and her Mom said that "her legacy was hope." I'm not sure when we will talk about Alex living in "Kevin," because it's just starting to sink in what that actually means for them already knowing a brother, a sister, a great grandmother and a cat who live there.  For now, she's doing just fine in their minds selling lemonade and being a superhero.  She's teaching them that their efforts are contagious and that kids have big voices.

Thank you Alex.  You're doing more than raising money for cancer research, you're giving kids, sick and healthy, an inspiring role model and that allows you to live forever.  Kevin can wait.

Brave Door

That's my view of a door from sitting on the floor. My daughter is behind it.

People are passing me over in the halls and I can't look at them, so I'm just sitting and waiting.  Actually sitting and writing in the notes section of my phone.

She didn't even flinch when they called her name to come back, because she knows where she is and why she's here.  Imagine your own 5 year old walking alone with a nurse dressed in a giant lead suit, goggles and hair net with their hand extended to hold with a brave "ok" leaving their lips when asked him/her to go in without you.  These kids are tough.  I'm the one sitting on the floor weak in the knees.

Maybe they're so strong because they know only of today and what is simple.  They don't worry about long term health problems, learning delays, life expectancy and all the other crud that fills our heads. Whatever it is, only a child can possess it.

She wants to be a ballerina.  The funny part is, because of her health and prematurity, she's the perfect size for a ballerina.  Although it would make a even better story since she has been booted out of two ballet schools for sensory disorder.  She's older now and quite ready.  I'm taking her to see a show on Friday and can't wait to see how excited she will be after knowing she starts in the fall (again).

I dream of her dancing on stage and know that I'd be sobbing in my seat knowing what she went through to get there.  I dream of sobbing at anything she can accomplish, regardless if it's on stage or just getting better. When am I not going to have to sit in a waiting room or pace a hall while one of my kids is on the other side of a door? I guess that's a selfish question considering they're getting the short end of the stick.  I'm going to stop mentally complaining now and sit here dreaming of the little girl behind the door in full swam lake attire, arms extended gracefully while on her perfectly wrapped ballet toes until it opens.

Ten minutes.  Twenty minutes.  Twenty six minutes.

She came out.  I'm writing this at home now.  She bounced like a ball out of the room with a hair net bobbling back and forth while she talks at the loudest possible level over the doctor explaining what was going on. Halfway down the hall she stops bouncing.

She turned around from running ahead and dropped her shoulders and started to panic and sob.  I knelt down to comfort her and whispered in her ear over and over until she was ready to let me pick her up five minutes later.  I held her on my shoulder as she finished off her last tear in my neck.  No five year old should know post traumatic stress.  She's old enough to understand that this is not going away, but not old enough to have that level of emotion put upon her.  It's just not fair.  Her body was shaking as she mourned the loss of her freedom from tubes and wires, her fear of the unknown and knowing that at times she is going to be alone. She deserved that cry.  I just wish she didn't have to.

I guess I didn't give her enough credit earlier when I was sitting on the floor at the foot of the door. She is tough, but fully capable of thoughts and emotions beyond her years.  She can't yet spell her last name, but can recognize the word "courage" because I've read her the book a dear friend sent over every night for a week now.  As I tucked her in, we read and this time she understood truly how brave we have to be and she knew that Mommy was brave too on the other side of the door.

It's for the Kids

We are almost there.  Our 5th golf outing & reception.  I HAVE ZERO recollection of the first one.  I think I was there.  I think I even golfed in it.  I have no idea how hubby and I plan or pull it off every year.  Our own wedding required much less time and effort.

All in all, it's been six years since we've said goodbye to Vincent & Sofia.  With the battles we've faced with our other two, I can only imagine how we would have handled two other sick children.  It still doesn't make us wish they weren't here, but they have given us so much joy in their absence by allowing us to touch so many other families through the Foundation.  Just this week I was able to reach out to a new NICU family and share our story to give them some insight and familiarity with the world of preemie. I always send out my emails by closing my eyes before I hit send, because I never know how the recipients are going to react.  Fortune has it that we have yet to meet a family that we haven't kept a close eye on. Right now we are praying for baby Isaac.

Writing the programs for the event is always my job.  It's so hard for me to write, because the people reading it are right there in front of me.  I can't hide behind my blog, which most of the time is my protection from having to say things that I feel out loud.  It's on it's 3rd revision, my last tear and hopefully not my last smile.

Vince is in charge of the shakedown or "putting *sses in the seats." Something I can't do by nature.  He spends half of his work day on the phone with golfers and donors and all night catching back up on office work this time of year.  We always go in to the event saying "this is the last year" and then we end up adding more things to the charity for the next.  He's pretty much Matt Damon in this entourage clip:

I know that when the event kicks off, it will feel as strange as it does every year to see my kids' names printed on golf bags and materials.  It will feel just as strange listening to my husband wish the golfers off knowing he has the same feelings hidden under his smile.  It's hard, but it's harder not doing it.  In the sea of old and new faces, it's amazing to see the support that people give.  It blows our minds actually.

So thank you to my son and daughter for giving us the courage to do these things for other families and thank you to our sponsors and golfers for allowing it to happen.  We already started putting together a children's 1/2 mile race and 1 mile relay for the fall, so I guess this won't be our last year.  It's the people that give for their own reasons that makes it easy and gives us hope.  Thank you all.

Cheers to bigger and better things!

I Love You Man

For anyone who has ever had a child go back for surgery, you know the "giggle juice." You get an eery insight of what a few beers might look like on them in college.  Luckily, we have an "I love you man" experience every time.

But even though my husband and I are sharing our own giggles to ease the tension, we know that it's not funny at all.  It's terribly sad and overwhelming to see your child's eyes fade in and out as they pet your cheek saying things like, "(mumble, mumble) you're the best mom ever mommy."  There's no room for tears and no room for laughs.  It's just quiet.

We've been living in and out of hospitals with two of our four children for six years now.  We know where to park, where to eat, where the good DVDs are hidden, how to score a Tinker Bell pillow case and how to sleep upright.  What we don't know and probably never will is how to deal with the stress we feel and the stress they feel, because stress wears many hats.

My hats:
Excessive cleaning
Excessive exercise
Excessive laziness
Inability to gain weight
Inability to stop eating
Staying awake for days
Needing 10 hours sleep

Their hats:
Excessive anger
Excessive sensitivity
Inability to sit still
Inability to stop talking
Ability to ignore everyone
Ability to seek all attention
Hatred of all things loud
Love of screaming

It's taken me a few years to recognize my stressers and theirs to the point where I can see them coming around the corner.  But it doesn't stop it from coming. There are so many ways that we can play over in our heads the decisions we make for them and the consequences those decisions give birth to.  What I do know is that we are headed in the right direction, but we just didn't quite expect the road trip to last this long.  Obviously, I would have packed sandwiches.  But even as I write it, I know 6 years would seem like a flash of light if they were gone. 

The school year is almost over and I feel like I'm embarking on a new phase in our family with two children in elementary school.  Not just any two children, the two that fought so hard to get there. The two that now in close proximity on a daily basis to "typically developing" children worry and excite us.  Things that are normally exciting to families are glorious to us because we weren't positive that we were going to ever make it here. 

The weekend before yesterday's surgery, we asked Adelina what she wanted to do. I was figuring on something ridiculous like "Watch TV" or "Eat colored cereal." She wanted to "bungee" jump at the carnival.  It was Mother's Day Weekend... I spent most of it worrying and cleaning and making mental check lists.  I couldn't think of a better thing for all of us.

When we got there, the guys were on a short break.  He took one look at her and a young boy with Downs staring (or panting like dogs, don't judge) at the trampolines and opened the lines for them.  A line started to form behind them and no one seemed to complain that these kids were taking up a 15 minute turn each.  I was speechless watching her float thru the air.  She wasn't laughing.  She wasn't nervous.  She was calm and happy.  The sun was starting to set and the light was beaming thru the leaves on the tree behind her as she jumped over and over, looking up to the sky each time with a still face.  When she was finished, all she said was, "that was fun." Enough for us.  Enough for all of us.  I don't know what life has in store for them, but as long as that's what they can say about it, then I'm indeed happy.

My Cupith Overflowith

My cupith overflowith with advice from others that I know I should ignore.

My cupith overflowith with ways to battle frustrated preschooler behavior.

My cupith overflowith with waiting for the phone to ring.

My cupith overflowith with wondering when the other shoe is going to drop.

So me going to dump out cup.

Ahhhh me feel better.

- Anonymous... oh wait. That's me.

Awesome Syndrome

So after almost a month of waiting and testing out the feeding tube, we have normal biopsies and a diagnosis.  Dumping Syndrome it is.  Dumping Syndrome.  Really? What bugs me most is the name.  Dumping.  It's flat out disgusting.

I've renamed it to Awesome Syndrome.

Little wonder woman will be readmitted soon for a G-J tube that will unfortunately be another family member for quite some time.  But as I said to my dear friend this morning, "whatever.  She's here." Her reply, "Exhale. End Scene."

While we waited for results and my resilient and amazing child put up with beeping machines, tubes, tape and some crazy lady lurking over her at night while she sleeps, I figured something out about myself.

I am human.

It is a lot of responsibility to take care of a sick preschooler.  It's a ton of responsibility to manage a kindergartner with sensory disorder and speech and language impairment.  It's hard to keep up with a typically developing three year old who needs attention too.  It's painful to send a 1 year old to Grandma's house while I tend to the pneumonia I've given myself from lack of sleep and insane amounts of stress.  But it all happens at the same time and the time seems to fly.

I am human.

I woke up screaming from nightmares the night before the remembery of my son and daughters' passing.  Five years later and still screaming from the nightmares.  PTSD anyone?

I am human.

We know that we have to take care of ourselves to best take care of others, but it's hard to go get your nails painted or have that cup of coffee with a friend when it takes a mountain of people to replace you while you do it.  I smile a lot and keep busy because I have to.  I learned that I can replace the guilt of getting out of the house with giving up other things.. like laundry and cleaning ;)  I've finally asked for help from people who reach out and found that these things are better than getting my nails painted.  It gives me stress free time with my kids, which we are all entitled to.

I am human.

I'm not super mom.  I have super kids and I owe them my time and really am in it for the long haul. I also feel that I owe it to the rest of the families out there like mine to be public about my insanity because that's something I'm really good at. Making others aware that we are out there and that we are not ashamed of what we have been dealt.  Showing people that kids with disabilities can overcome major obstacles when given the right tools to succeed.  We have a lot on our plate over here, so pass the pancakes, put on some lipstick and know that yes, much responsibility lands on the laps of many mothers.  It's learning from our mistakes, accepting our weaknesses and moving on in a positive light that matters.

The Last Supper

Here we go again. Smelly Mom in yesterday's clothes, because I was hoping that we were NOTgoing to have a sleepover at the hospital. Didn't want to jinx it or just too tired to pack my own things, I'll never know.

How do I keep a smiling face when my kid is gagging on a ph probe? How do you give the perfect goodbye as they wheel your child off for the second time in less than 48 hours? What do you tell your kid when they are telling you they are hungry and can't eat? What kind of cake do you make for a 5 year old's birthday when they eat out of a tube? Do you make a cake for your 6 year old who happens to share the same birthday? How do you split time between a sick child and healthy ones? When will we catch a break?

Here is the list of possible answers:

You get what you get and you don't get upset.

When life gives you lemons, make lemonaide.

Things could be worse.

Be happy for what you have.

God gives you what you can handle.

What doesn't break us, makes us stronger.

Last night I ordered dinner for what I wasn't aware was a 'last supper' for my soon to be 5 year old, Adelina J Bean Calvanese.  She wanted pancakes, but dietary restrictions weren't corrected in time, so we were stuck with PBJ and soup.  The same meal she ate for lunch.  I woke up to order said lovely pancakes at 6:30 this morning and the news was broken via the lady on the other end that "nothing was to be taken in by mouth."  Dam, now I really missed those pancakes.  I see why kids love them, but I know the only reason this one does: her big sister likes them.

Sisters are wonderful to have, so I'm learning.  The only time she smiled yesterday was seeing two of the three chubby cheeked siblings' faces on the computer.  They spent the entire time making silly faces and funny noises and when they disconnected, Adelina's smile did as well.

So at 2:30 today, a feeding tube will be placed into her lower intestine to try to help correct something called "dumping syndrome" and to anticipate any biopsies that come back abnormal. Dam you PBJ - you should have been pancakes.  We were like apostles having no idea we were sharing our last meal together.

We get by on the support of our family and friends.  The people who drop everything and anything to help us when we need it and the ones who give us hope through their kind words.  It's been my lifeline and my rescue boat for what seems to be forever.  There isn't a second that we don't look at her and think about how far she's come and how much we miss her brother and sister, but the only face we let her see is the one with full attention and love.  My oldest child who is "afflicted" with a communication disorder has taught me much about communicating through feelings and not words.  I use it daily. 

So today, I'm going to stop asking silly questions.  Here's a list of better answers to the above questions:

This is life.  It's real and sometimes real hard. 

 Spending your time worrying doesn't help anyone ,so spend it loving and encouring. 

Move forward strategically.

When it gets ugly, put on some lipstick.

Prioritize.

Donate Online!

The Sofia & Vincent Calvanese Memorial Foundation - Fundly.com (takes you to their site)

We are now set up on Fundly.com to accept donations and sponsorships.  Thank you to everyone for the support in years past and this - our 5th year! - funding Abington Memorial's NICU and CHOP's NeoNatal Follow Up Program.  Click on the above link and feel free to send any additional information to me directly at jennifercalvanese@yahoo.com

We hope to keep growing in the near future... we have many projects in our pipeline that we can't wait to share with you all!

Thanks!

Vince and Jen Calvanese & Family

Oh Bald Barbie, why are you making me lose sleep!!!

Do you remember those "preemie" cabbage patch dolls from our younger years????? 


It was cool to have a preemie. The March of Dimes had partnered to make the doll and have some of the proceeds for research. Well all these years later, I'm the mother of 2 preemies and 2 angel preemies and I see one in an "antique shop" in Maryland while shopping with my mother in law.  I had to duck out of site for a moment, because I immediately felt 100% sick to my stomach. 


There she was, all packaged up like the fad toy that she was in her prime. Never touched, perfectly the same. That's how I feel about my own kids who are not with me anymore and my stomach turned sour.  My mind had changed on the little doll that once I thought was cute.   


Did we think about those dolls differently - did it make an impact??? Was this an opportunity to raise awareness?  Were the parents using it as an awareness tool? Not that I know.


So how the hell is Barbie - the nemesis of reality - supposed to help young girls? She's a woman! She's not even a child that they can relate to! You want to teach your kids about cancer?? Read them Alex and the Amazing Lemonade Stand. Proceeds GO to research. If this thing comes to fruition, I hope that Bald Barbie won't cause some mother to cry in an antique shop some 30 years later.  I hope she is a reminder of how we changed young girls' minds about awareness.  I hope.  Mattel has yet to comment and I hope it's because they are taking the same amount of time to think about the impact.  


I sent the picture of Patch to my fellow preemie friend and have since deleted it.  So here you go - this is a preemie.  I'm not one to be overly sensitive or outspoken on much... but Bald Barbie, you're causing me to lose sleep.  Ergggggggg 

Actual Preemie

It's not a silly thing.  It's not just a doll.  It took an experience to realize that.