Dad The Almighty Awesomeness

My husband always asks where all the posts are about him. He usually continues on a tirade themed in self promotion, topped with phrases like, "who is the one providing all of this wonderfulness?" Even during the delivery of my oldest daughter, he exclaims, "What would you guys be doing without me here?" while he was (in his words) "holding a wing."

It usually gets a response something like this:
"Most people assume it's you writing posts, talking with mothers, sewing quilts and writing thank you letters.  I should actually be quite embarrassed taking credit."

Because... well... that's the kind of relationship we have ;)  Then I usually hear about how he's the rainmaker around here and on and on until we are sick of each other's rantings.

But it's true. We tend to forget about Dad sometimes, because most of us are the ones in the daily trenches, taking a beating from the kids and at the same time, getting all of the rewards.  I talk with a lot of families and we've all been through it at some time or another... feeling like you are the one carrying all of the load.  And for many NICU and special needs and medical needs families... those bags are dam heavy.

For families in those situations... most of the time the primary caregiver knows the medical routine, the doses, the appointment times and date, the IEP details, the therapist's name from three years ago that we had for 2 weeks, and the names of all the doctors at every hospital.  Most of the time they are the ones who can "speak" the language of the child without an interpreter and rarely become frustrated about it.  Primaries take a lot on, but get a lot back in return too.

That giant smile at school at pick up when I'm spotted by my kid belongs to me, but
I'm the one whose fault it is when they can't focus in the morning to get ready to leave.
I get the first hug of the day and, most of the time, the last, but
Soothing nightmares, changing sheets at 3am and midnight bathroom trips are my glorious job.
Painting little fingers and toes for special occasions is a memory in the making, but
Cutting 80 kid nails (more if you count the cat) per week is also in my job description.
Seeing a "100%" marked across a math test makes my heart melt,
but I'm the one who spent daily hours preparing supplemental work so that we don't fall behind.
I'm the one who understands every thought even though only a few words were spoken,
but I'm the one who has to remind her that we need to start over because I want to hear all of the wonderful things she has to share.

You get it... I get it... most days anyway.  But where is Dad?

Even in the NICU... the doctor visits... the 100 therapists we've had... the IEP meetings... parent teacher meetings??? and on and on... WHERE IS DAD?????

Hopefully he's sacrificing on his end too.  I gave up my job, because I had to.  But I was lucky to have the opportunity to do so without serious consequences. He's working.  What would we do without insurance? What would we do without a lot of things that are provided for us? We'd have a lot MORE to worry about, that's what.

Dad doesn't get all the smiles and all the memories.  Dad doesn't know which schedule goes with what kid and what their favorite daily color is.  He gets to step in and out and enjoy the little things and the big things better than Mom, but only if he wants to and most of the time they slip in to that role perfectly.  By taking those moments and realizing how small their window is, hopefully they use to wisely.  No one gets to throw a child into the air like Dad... No one gets to say, "hand me the ratchet" quite like Dad.  No one makes a breakfast sandwich quite like Dad (sometimes Mom gets one of those too).  Most importantly, no one gets to introduce a daughter or a son to what kind of guy they should be looking for in life or what kind of man they may want to emulate quite like Dad can.  The big picture paints Dads as our giant family umbrellas.  And a lot of the time, it's raining.

It doesn't always matter who "Dad" is either... Dad's the person who has decided to give up a lot of small moments and big ones, for the better of their family.  They are in the shadows, not out of choice, but because they know we need them there.  "Dads" are brave, teaching by example and very, very much a part of our daily lives than we give them credit for.

So ... to our "Dad".... thank you.  I see you - we all see you.  When you're asked to step up to the plate, you always deliver.  And to answer your question from 2006, 

"Yes! What would we be doing without you here???" 

Nina and Lina... Judith and Jen

In 2007, a nurse slipped me a piece of paper with a phone number and email address on it.  It belonged to my neighbor, Judith.  Neither of us were allowed to leave our rooms nor the monitors.  I wondered what she looked like, how big her belly was and even what her room looked like.  I wondered if she was in pajamas or hospital gown.  Whatever made the time pass faster really.  We "spoke" on email and most days on hospital phones, but we had never officially met face to face.

On a Sunday morning, my husband and I heard a scream from a woman in the hallway of the bed rest unit.  I knew it had to be Judith from the sound of her voice.  There was a rush of chaos, followed by complete silence for a long time. Hippa kept anyone from talking to me.  It was a blow to me personally.

Over those weeks, we shared a lot of things.  We were both pregnant with triplets, both of our mother's names were "Rosemary" and we both grew up Italian.  We baked pizzelles, we watched the same shows, had a tendency to cuss, and we shared the same worry and waiting that we knew was coming.  The doctors thought it was going to be me that went first and that every day was a blessing for me right down to the hour.   Somehow I had heard that her babies were alive and in the NICU and it gave me hope, because she delivered at the cusp of vitality at 24 weeks gestation and I was then just a few days ahead of her now in my pregnancy.

After my own children were born and I was able to walk through the NICU to visit, I saw a girl with long dark brown hair walking towards me.  I knew it had to be her.  She must have had the same feeling, because she walked right up and introduced herself.  And then she introduced her daughters.  I watched them as they held their babies a few days later, while I was left still unable to hold the one daughter that I had left with me.  I remember taking their picture as my heart sunk into my shoes.  Judith holding one and her husband holding another.  Those feelings quickly passed as I was equally happy that they weren't in my shoes.  I wouldn't wish that on anyone.

Over the past 6 years we shared the most beautiful and the most excruciating experiences together.  Things didn't exactly turn out in our favors... in fact, we kept getting kicked even when we were down.  And then kicked some more.  We cherish the gift of friendship and we've moved past the reasons we originally met.  We continue to learn that we share so many other things in common and that we are still so close, yet so far away from those days on bed rest. We have truly found a friend in one another.

 

Former roomies, Nina and Adelina (Age 6)

Happy Birthday Nina, Angel Livia, Angel Georgia... Adelina, Angel Sofia & Angel Vincent.  And to my oldest daughter, Gianna, who spent her 1st birthday with me the day after the babies were born eating cake out of a foil container, wearing khakis and a white onsie (aka a baby wife beater) with not a single picture of you taken that day... Happy birthday sweetheart.

People always tell Judith and I that we are only given what we can handle.  Maybe it's true... maybe not.  But having someone to handle the bad times with you is quite the lucky draw.  I'm sure either of us would drop each other like a bad habit to have those children running around our homes, but we are in this together.

We've ALL come a long way Baby! Thank you Judith and Nina... and Jason and Tessa.

Adelina & Nina about 5 months old at their first play date

Nina, Adelina (age 1) trying to hold Lucia

Gianna, Lucia, Adelina & Nina (Age 2)

PJ Play Date Adelina & Nina (Age 3)

Adelina & Nina in the March of Dimes Walk (Age 4)

Gianna, Nina, Lucia & Adelina (Age 5)

Second Opinions

This past 12 months, almost to the day, has been a year of kicks to the ribs for me.  A house full of four young children is hard enough, but the added medical and developmental issues has once again given me bigger eyes and better ears as a mother.

Our last appointment for GI has taught us that no matter how well we think we are doing, we are still an experiment.  Being "one of a kind" is a tricky subject.  A friend posted something a while ago  about being a fruit loop in a world full of cheerios.  It's true and refreshing, but it's at the same time true and menacing.

A bridge that I've crossed long ago is no longer feeling bad about anything when I'm trying to help my kids.  We sometimes need opinions and second and third opinions to let something tough to swallow, sit in our stomachs.  For parents with questions, keep looking until you find what you are looking for.  And if you find it, always be open to something new.  If you don't find it, look for peace. Stop worrying about what people will think of your search, whose feelings may be hurt as a therapist or doctor and certainly don't beat yourself up along the way.

I've learned that when I'm not satisfied and have exhausted my search, I try my own ways for change and progress.  Tell you what - mother usually knows best.  We just booked two second opinion appointments and there is no guilt felt at all even doing it within the same practice.  More importantly, there is also no false hope that someone else will tell me everyone else is wrong and that they have the solution for me.

I search because it makes me more aware, more prepared and better equipped to make decisions.  I talk to countless families every week and most of us are in the same boat, just riding a different wave.  So here we go guys - sink or swim.  What's it going to be?

No paddle? Use a leg.
No energy? find a support person. 
No clue what you're doing? Welcome to the club.
But that's just my opinion ;)

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.