I Am a Marathoner!

It's official- I'm a Marathoner!!!

A huge thank you to everyone who donated, texted, emailed, and facebooked me.  Your support, both financially and emotionally, was huge, and I am so appreciative.  Truly.

I left Saturday morning, taking the regional rail into Philadelphia and transferring to an Amtrak train into DC.  I love the public transportation in DC, and was easily able to navigate to the Armory for my bib and t-shirt pick up.  Then, it was to the International Guest House, where I stayed for the night.  Amazing place.  Imagine a cross between a cozy B&B and a hostel.  I'd totally stay there again.  The folks were lovely, the room and bath were very clean, and they even put out an early (and I mean) early breakfast for me so that I could eat something before the race.  The only downside was that I was an hour from where I needed to be, but for the price ($40/night, including breakfast, evening tea, and the room), it was a perfect fit for me.  They were so hospitable, and reminded me of family in how excited they were for me to be running (and afterwards).  I didn't stay long, as I was meeting Team Lemon for dinner, just outside of the Pentagon, so I hopped on a bus and metro and made it with time to spare.

I was honored to be asked to address the team with a story about why supporting the Foundation through running and fundraising is important.  I'd hoped to get through it dry-eyed, but just saying the words choked me up.  25+ years ago, a child being diagnosed with neuroblastoma had only a 5% chance of going home and living a relatively normal life; now, upwards of 80% of children are going into remission.  That's huge; it's no guarantee, but every dollar we raise goes towards a cure.  That's amazing for the families impacted. 

Back to IGH and to bed by 8:15pm.  I was up at 3am to get ready and caught a 4:30am bus to the metro.  I shared the ride with a number of runners, and we made it to Pentagon station by 5:30 or so.  It was probably about a half mile walk to the Runners Village, where the Marines had put up several tents to keep the impending rain from Hurricane Sandy off, as well as the UPS trucks that would hold our bags and meet us at the finish.  The USMC also scheduled 2 nondenominational services, and the USN chaplain who did them was amazing.  We even started by singing "This Is the Day (That the Lord Has Made)", which was Robert's favorite song.  (When I told my MIL this, she actually cried. I didnt tell her, but when the Chaplain announced it, I teared up.  It was just a confirmation that I was really supposed to be there).  His sermon was on point and moving; I felt so inspired about the journey ahead, and I'm so glad that I was able to attend.  As the morning closed in on race time, we all walked the half mile or so to the start and got in our corals.

Prior to the race- and don't worry: I'm going to buy the real picture :)

The canon fired and we were off! 

It was an amazing experience.  There were Marines everywhere, cheering us on, giving us water and food, and supporting us.  Volunteers, spectators- it was amazing.  The first 8 miles had some hills, but it was a beautiful route.  I choked up early on as we ran by Arlington National Cemetary, and then later on, when we ran through the flag-lined memorial to fallen soldiers.  There were moments where it hurt, moments where I was tired, and moments where the only thing that kept me going were the prayers in my head and asking Robert to hold my hand.  I prayed a Rosary for my cross country kids (who were racing their final in Philly), and countless other repeats of Hail Mary's, Our Father's, and whatever else I could remember.  I ran solid until mile 20, then did spurts of running with 30 seconds to a minute of walking.  (It was better that then not finish).  I had hoped to do 4:30-5 hours, but my last month or two of training- especially since the kids started school- hasnt been what it should be.  And the wind- man, the wind was merciless!  I thought I'd be blown into the Potomac!  But it didn't rain, and for that, I am so thankful.

You can see me speed across the finish line (clock time 6:11:02, I'm running down the center line and sprinting, black shorts, yellow shirt over blue shirt), 5 hours and 49 minutes after I started.  I did it.  Wait- I DID IT!!!

I might look rough, but damn am I happy!

Coming across the line, a soldier shook my hand and called me his hero.  (I'm sure he said that to all of us), but it struck me.  He- and those like him- are the heros.  I ran a race.  It hit home what the MCM stuff said; the people run to honor the Marines, and the Marines are motivated by the people supporting them. 

I called Peter as soon as I crossed the finish (you can even see my phone in the picture!).  A few moments later, a Marine who looked like he was 12 put the medal around my neck and saluted me.  Me!  He- a true hero- gave me that honor.  Tears, I tell you.  There were tears.

I had initially planned to stay at IGH another evenings and take the train back Monday afternoon, but the weather was getting worse.  By the time I was on the way back to IGH, rain had started.  After I showered, I packed up.  I'm lucky; Peter was able to get me on the 6:20 back to Philadelphia.  Once I got back to the station, I heard that Amtrak decided to stop all trains to the Northeast Corridor after 7pm.  On the train, I made fast friends with other MCM runners and we chatted about chaffing in appropriate spots, hardcore wind, running when you didnt want to anymore, and how nasty some of the recovery drinks (G3 anyone???- YUCK!) are.  I made it safely into 30th Street Station at 8:30, and into the waiting arms of my husband, who braved the wind and rain to come and pick me up, rather than have me wait for a regional line home.  His arms were some of the most welcome, beat only by the smiles and hugs waiting for me by the two sweetest munchkins in the world when I got home.

***

During the prayer service, the Chaplain said that this would be one of the highlights of my life, that it would be an awesome achievment that little else could measure up to.  Truly, it was.  The woman who started that race wasn't the one who finished it. It changes you- it changed me.  How can it not?  Putting your body through that distance for whatever reason you do it- for the Marines (and all servicemen who give themselves for us), for your charity, for those you love, even for yourself- it makes you stronger.  It changes how you view yourself, how you see others, and the world around you.  It makes strangers into friends.

My faith in myself was tested; I was afraid beforehand and there were moments that I thought I was surely crazy.  But I had a smile on my face through the race.  Even when my knees hurt.  Even when my compression socks failed.  Even when I wanted to just fall over from exaustion.  Even then... It was such a moment.

My faith was tested- would I fail?  Would I make it?  Somehow, through the prayers and the love and the support, I was sustained.  Thank God.  Thank you. Thank everything.

It was such a highlight, truly.  I'm looking at the medal, hanging by my window with my medals from the Half and Broad Street, and it is just such an awesome feeling still.  I'm looking at the poster the XC kids made (and which I took with me, giving it one final look before setting off for the race), and my heart bubbles over. 

I'm a marathoner.  Me.  The girl who thought after her 1999 car accident that she'd never run again.  The girl who tipped the scales a few years ago at 251 pounds.  The girl who thought she'd never see the sun again when her world tilted on its axis and stopped spinning in 2008.

Wow.  I'm a marathoner.  I did it.

Thank you.  Thank you so much for the support and prayer.  I couldn't have done it without you.

Safely Through the Storm

We made it through the hurricane with everything (mostly) in tact!  The kids slept through it without concern, and Peter and I only woke up once (to the sounds of sirens going down the street).  We lost one of our apple trees and our peach tree; otherwise, there's no property damage and our power stayed on.  Our neighbors seem to be in good shape as well, other than some downed trees.

I'm working on a MCM recap, but hope that everyone out there in doing okay with the storm!

If I Don't Return

I've always been one of those people who wonder what would happen if everything ended in this moment... If I didn't come back from a run... If Peter didn't come back from work... If something happened to Bobby or Maya... You get the picture.  I try not to dwell on it because, frankly, it would make me crazy (and I don't need to go any farther over that line).  A few weeks ago, I was talking to a friend who was Bobby and Maya's age when she lost her dad.  When she lamented that she didnt remember him, it tugged at my heart.  What if... Just what if... Would they remember me?  Would they know how much I love them?  They would remember me from photographs, but would they remember that I've sang to them every day of their lives?  Would they remember the way we make pancakes together or how I've climbed into those kid climbers to slide down with them?  Would they remember the way my heart beats underneath their heads when they rest on me while they are sick?  How they waved bye-bye to play with our neighbor while I left to coach XC?

And, so, this post is for Bobby and Maya.  On the off chance that I don't come back.  I'll be back, I swear, because I've promised them that Mommy's always come back.  But... In the back of my mind... There's the nagging what if...

***

Dear Bobby and Maya,

You are my suns and my world revolves around you.  I love you more than words will ever be able to express and leaving you, even for a second, requires quite a bit of work!  I cried the first time (and quite a few subsequent times) I left you for a visit with your grandparents.  I cried the entire first day of preschool until you came back into my arms.  My mornings feel empty until you crawl into bed with me and snuggle me.  My afternoons are quiet until you stumble from your nap and rest on me, just to cuddle and laugh together.  I love throwing you up in the air to hear your laughter.  I love to stand with you at the kitchen and cook dinner, all the while explaining all the things we are doing.

Even in our hardest moments, my life is more meanigful and fulfilled because you are with me.

One day, there will come a day where I wont be by your side or a simple phone call or email away.  While I hope that day is far off from now, no matter when it comes, I want you to know this.  My voice was empty- until I sang you lullabies (although I realize those "lullabies" are actually songs... I hope you dont fall asleep at the pub when some drunk busts out with "O Danny Boy"!)  My arms didnt know what a hug felt like until you wrapped yourself around me.  Kisses weren't as sweet until they were delivered from you.  My heart has never been so broken as when you cry and I can't take away the pain that drives you there.  My heart has never been so full as when you tell me your names and the names of your siblings, and explain how you are all brothers and sisters, and we are your mother and father.  Laughter was shrill until it escaped your lips and became a beautiful symphony.  In short, you are my everything. Never doubt that and please, please, never forget it.

Choosing to leave you for races is one of the hardest things I ever do; whether it is practices that are close to home or races that take me across the country, I miss you.  But I believe that it is important for you to see me not just as the mother who loves you more than the air she breathes, but also to see me as you will one day see yourself- a successful adult who has dreams and goals, and works hard to acheive them.  It's not easy, but then, nothing worth its weight is easy. Leaving you guts me; coming home to you makes it worthwhile.

I love you, Bobby and Maya. With all my heart and soul.

Twas the Night Before D.C....

I'll spare you the prose.  :)

I'm packed and ready to go.  Come rain or shine, I'm running the Marine Corps Marathon.  (Want to keep up with me?  Check out the MCM page, where you can Track A Runner (just type in Haytko as the last name- I'm the only one), and get alerts via text, FB, or twitter. You can also You can even watch the MCM on Comcast Sportsnet.  I'm also having live FB posts autogenerated, so that should be interesting!)

We've prepped the kids that I'm leaving tomorrow "to go running" and will be back on Monday.  There have already been tears (and Bobby and Maya arent the only ones crying).  I'm going to miss them.  I hate leaving them.  And yet, I feel like this especially is something I need to do.

The kids I assistant coach cross country for are amazing.  Tuesday night was my last practice; they had a Thursday practice (but Peter and I went to the Whiskey Festival-AMAZING... More on that later) and then they have their finals on Sunday.  I wont be there, which makes me sad, but I'll be running with them (just a few hours away!) which makes me feel like there is a special kinship.  And these kids... They range from Kindergarten to 8th Grade, and they are amazing.  On Tuesday night, I was given some adorable handmade bracelets from the girls, flowers from the boys, and a huge posterboard that says "You Can Do It".  Let me be honest, I was nervous before but now?  Now, I can't let these kids down.  So yep, I guess I'd better find a way to do it!

So now... My jewelry is in my jewelry box (with express orders of who gets what in case I don't make it home... Maya gets my mother's ring... Bobby gets my anniversary band... Peter keeps the alexandrite choker that I wear everyday and my wedding band...  The list goes on...)  Right now, I'm wearing what I'll wear to run in: my mother's wedding ring (I always take this with me on long runs... It's like my mom is there with me, cheering me on); the bracelets from my kids, which I've paired with my bracelet for Robert; and a necklace of Our Lady of Czestochowa.  You might think it's because I'm Catholic, but it's actually not.  Robert found the icon pendant on a playground as a child; when he passed away, Peter placed it with him in the coffin with his rosary and a cross. Before they closed the casket, Peter kept the cross and pendant.  He gave the Our Lady to me, years ago, when I started running again.  Back when I thought I'd never make it a mile (and when that mile was a struggle).  The necklace has come on some pretty long (and some pretty awful at times!) runs.  It's a symbol of Robert with me.  I treasure it.

I cried tonight as I wrote on my Team Lemon shirt; the back reads in loving memory of Robert Dimitri Haytko (1980-1987).  On the front, underneath the running lemon, I wrote "squeeze me", because I can't think of Robert without imagining him in one of his favorite shirts, with that smile that Bobby has.

It's a rough night tonight, full of so many emotions.  In a way, this race is so much for me, but at the same time, it's not.  It's for the long 25 years that it's been since that last Halloween that Robert spent with his family.  It's for the 32 year old man that he would be.  It's for the lasting impact he's had and the one I'm sure he'll continue to have.  It's for the hope that my children- that all children- will never battle the nightmare that he did, and that there will be a cure for the ones who are.  It's for Peter and my in-laws and my children... It is for me, but it's for so much more.

It's why I have to do it.  It's why failure isn't an option.  It's why, regardless of a hurricane, I will still be on that starting line in (gulp) 1 day and 16 hours.

My dad sent me a text this morning when I asked him for luck: "You don't need luck with you have raw talent."  I don't know so much about the raw talent, but I like that he's optimistic.  He's also the one who tells me time and time again that I don't know how to fail.

I guess I should picture him like Yoda: Do or Don't.  There is no try.

And really, in this situation, the only try I have is to try and remember that I'd rather be sore than sorry.

Think of me, peeps... I have a post for tomorrow, but otherwise wont be posting until after the race.  You can check my FB account for real-time updates (or so they tell me!), and I'll try to post by phone that I've survived. :)

And don't forget: there is still time left to donate!  Go to http://www.alexslemonade.org/mypage/79983 or text "Lemonade E79983" to 85944 to make a $10 donation.

Even Without Ruby Slippers...

...I love our Dr. Dorothy.  The woman rocks.  She's one of the two docs at the practice we take the kids to and while I've always liked her, she attained rockstar status this morning.

As I mentioned earlier, we'd talked to her about some testing we'd like done on Bobby.  She agreed to look into it then chat with us.  She talked with Peter, since I had the in person meeting and he wanted to talk to her as well.  Long story short, she felt that the testing wouldn't do much for us and, therefore, didn't feel right ordering it.  If we really wanted it, she recommended a practice that would do it, but in her opinion, she felt that we could just proceed as though the tests were positive and go from there, since testing wasnt a sure fire way to get the info anyway.  Peter thanked her for taking the time to look up every code I'd given her and for the time to have the talk.  I even called afterwards to leave a thank you message for her.  Little did I know...

She called me today.  I saw her on Monday for the kids check-up.  We talked abit about not having the IEP, blah blah blah and she was pretty upset about it, saying she'd follow up personally with the IU.  Hey!  Awesome!  I'm not one to not want an entire team and having his teacher and doctor on board is just adding to our village.

Well... I'd hate to be on her bad side!  She called me this morning and we chatted briefly about the diagnosting tests and some other stuff (which I'll post later about when I have more time), and then asked if I'd heard from the IU.  I was happy to report that yesterday, our case manager was able to observe him in class (again, another post) and that we have an in-person meeting on Monday.  Turns out, our doc has called and left messages every single day since our meeting on Monday. She was about to call this morning and wanted to follow up with me first. Her last call mentioned having an attorney call because she's concerned that they arent in legal compliance (as it relates to having the IEP finalized/out) and today she said that, had we not heard from them, she was going to suggest contacting our local legistlator. 

Like I said: dont piss off the pediatrician.

The practice is awesome.  They are mainstream, but open minded.  When we said that we werent pro the AAP vaccine schedule, they talked with us about our concerns and have never once tried to force us to do something we weren't okay with.  Conversations are respectful and two sided; if we mention something they arent familiar with, they research and get back to us.  Two awesome ladies who love the kids in their care and support the families who trust them.  When the twins were 3 months old and Maya had her choking scare, Dr. Beth (the other doc in the practice) was on the phone the second I rang the emergency number.  Even if our opinions disagree, the conversation is always respectful and they are more than willing to have second opinions outside the practice. 

So yeah, I think even without the ruby slippers, Dr. D is pretty Oz-worthy!

MMDD/BMDD

Or, in real words, the Maya-Mama Dinner Date and the Bobby-Mama Dinner Date.

A few days ago, Maya asked me when she and I could go out for girl time. We're always talking about having one-on-one time with the kids, but other than the one hour a week that she and I hang together while Peter takes Bobby to speech, we haven't really had a big to-do.  So, I asked her if she wanted to get all fancy and go out to dinner.  Her eyes became the size of dinner plates and she nodded. For the last few days, all she's talked about is getting dressed up in a church dress and going out to dinner with Mama.  It's been cute. And a little harrassing as she's begged for a date and time.

So, we set the date and, on Monday, the peanut and I got dressed up pink and headed out to our favorite Italian restaraunt.  And what a success it was!

From the moment we walked in, Maya was 'on'. The oohs and ahhs and, "Oh, she's so pretty" or "Look at her gorgeous hair" just had her grinning from ear to ear.  (That child knows how to win over a crowd... I'm a bit nervous about the teenage years).

The waiters are perfect anyway, but they treated Maya like the princess she believes she is. They fawned over her- bringing her delicate little plates and forks and turning the world on its head for her.  Some freshly grated cheese for the homemade bruschetta?  Sure thing...  A smaller fork to enjoy your meal on a smaller plate? Of course... Is everything to your liking? Yes, oh yes.  After sitting us near the window so Maya could watch the trains (which she LOVED), they brought her thing after thing, constantly checking in with her to see if she was having a nice time (Oh, she was- no doubt). After noshing on fresh (and warm) bread & olive oil, bruschetta, and Greek salad, she tore into her spagetti (they even tossed in some meatballs for her), then finished it all off with flourless chocolate cake with milk.  (And, not to mention, two visits to the potty.)  When all was said and done, she hugged the head waiter (he's my favorite too!) and didnt stop talking about all the fun she had.

Flourless chocolate cake? Don't mind if I do...

Why yes, I am the princess, thankyouverymuch!

Maya and Mommy's first dinner date

It was a great time.  I look forward to many more of these... and to the ones with her brother! 

Tuesday, Peter and I switched it up and he took Maya out and I took Bobby out.  We went to our favorite gourmet pizzaria.  I called ahead and ordered, which was great.  When we got there, we had a perfect table for 2 and they already had his fruit bowl waiting.  He liked checking out the place while we chatted (well, I talked and he listened), then they brought our food.  I love this place because they have awesome pizzas and LOTS of choices.  I had a BBQ chicken with mozzarella on whole wheat and Bobby had a GF crust with meatballs, garlic, and sauce.  They were yummy!  We ate them and had a lot of fun. 

You had me at "fruit bowl"

Are both those pizzas for me? Drop them right here cutie pie!

Mommy or my lemonade?  I'll take the lemonade please...

Afterwards, we went to our local Starbucks, and split a Green Tea soy frappacino (or as the kids call them "coffee milkshakes").  We watched traffic and snuggled.  He has the most adorable smile and several girls kept smiling back at him.  One day, he's going to turn those big brown eyes on a girl not his mom and I'm going to cry!!

Peter's two dinners went well also, but he didnt get any snapshots with his phone.  He took Bobby to the mall on Monday night, where they played on some of the kid toys and hung out in the food court, then he took Maya to another of our favorite places the next town over, where she (once again) got to turn on her charm to the waitstaff.

I'd love to make it a monthly tradition that we one-on-one with the kids.  It's a nice, special time for them...and for us!

The Village

It takes a village to raise a child. -African proverb

Our kids spent the summer dancing with excitement about going to school.  Every single time we passed by the parish school (which is next to our church, so we drive by it a lot), there was the notation that there was the school, followed by a few minutes of chatter surrounding going to school, being big kids, etc.  They were uber excited to open birthday presents and find monogrammed backpacks and groovy lunchboxes, and they read their social stories about going to school so much that I had to reinforce the binders with book tape.  By the time the first day of school rolled around, they were so excited that they beat us to the car.

Even now, they are super excited to talk about going to preschool; they pray for their teachers in their nightly prayers and they are chatty on the way home about their day when I pick them up.  Each night, they ask if they are going to school the next day (since they only go 2 days a week the answer is 'no' 5 out of 7 times, lol).

If only wanting to go was a recipe for happy-go-lucky days.

Bobby wants to go with all his little soul.  He gets super excited to get dressed and put on his backpack.  He is now at the point where he climbs out of the car on his own and takes the aide's hand to walk inside.  But, once inside... that's another story.

The school is wonderful.  Like, really great.  The preschool teacher rocks, and the principal is understanding and encouraging.  They truly want the children to succeed and they view each child as an independent child; they dont seem hung up on trying to have every child fit a mold, and really seem to be working to have each child reach their unique potential. Peter and I have met with them and, each time, have walked away with positive feelings. 

Bobby is struggling with preschool.  It would be so easy to just pull him if he was miserable, but he wants to go.  He tells me that he likes it, and he asks to go back.  And that just makes it all the harder. We are now over a month in, and he still cries during the day, struggles to sit during circle time, doesnt want to engage with more than 2 or 3 peers at a time, and has a hard time following instructions for nonpreferred activities. At this point, he is in the classroom with a 1-on-1 TSS.  Although we are working to have this provided through the IU because it is considered a special need based on his speech issues, at present we are responsible for it.  We've interviewed a few folks, but they haven't been what we are looking for.  I went with him a few times; ultimately, I'm not the right person.  It's like having a crutch and never learning to walk.  He might get through the day if I'm there, but he seemed unwilling to try if I wasn't.  So, mom is out.  Primarily, Peter's mom (who is trained and has worked as a TSS in the past) has been working with him, but after a few times, he now is viewing her more as 'grandma' and less as 'aide-to-help-me-get-squared-away'.  Yesterday, Peter went (he, too, has had classroom time but, like having me there, he is still 'dad' and it is more of a crutch and less of a transition tool). 

Yesterday was a great day for him. He did the early playing and the first circle time without assistance; they didnt ask Peter to join him until gym.  Then, Peter left for snack and didnt come in until centers; he was able to leave during centers and then Bobby did the playground without an aide.  By far, one of the best days for him... But still a lot more help needed than the average 3 year old.

I spoke with a friend of ours who is not only a trained ABA therapist but runs a business matching ABA therapists with kids and she feels Bobby would not only greatly benefit from a TSS trained in ABA, but that the school district should be covering the cost (which could run us, privately, up to $6K a month- yeah... I thought I'd choke on my coffee!) Based on his 2 school district evaluations and the private speech eval we had, she said that she has seen kids like Bobby excel and work through their issues so that they can attend primary school on their own.  But early intervention and therapy is key.

Back in the beginning of September, we met with our county IU. Our case manager was nice enough, seemed to legitimately want to help, but also seemed overwhelmed.  The whole "underpaid/overworked" that we all know is true of those working in/with schools. We signed off on having an IEP created for Bobby and discussed his evaluation.  At the time of that meeting, we'd decided to not have a psych eval done and to not pursue interim therapists until after preschool started.  I dont regret that decision; it gave us time to see Bobby in school and to make sure that, indeed, he had needs that needed to be addressed with more than just an SLP once a week.  After meeting with our friend last week, she advised us to sign off and allow the psych eval, not in as much as Bobby might be labeled as this or that, but because it isnt often offered to families.  While legally not having it done cant hinder the services the country provides him, having it done can speed things along.  Our primary reason had been not wanting to have Bobby associate a possible negative experience with his start of school; since we are beyond that now, having him evaluated doesnt carry that weight for us.  Regardless of whether or not he is labeled, if it will help with services, it's something that needs to be done.  She also suggested, as did our pediatrician, that we fill out the paperwork for Medical Assistance so that services could be more easily covered, with no additional cost to us.  (While we dont qualify for MA normally, having a child designated as 'special needs' makes that child eligible so that the State will help cover the cost of therapists, aides, etc).

To date, we have no IEP.  (Yep, more than a month and a half after our meeting and a month+ into school).  I have followed up and was assured via email I'd have one by Monday, the 15th...  We're still waiting for that meeting to discuss a rewrite of the IEP and getting him a TSS for school...  While we're willing to do everything possible to give our kids the best start (and the best life) possible, these things aren't cheap.  If Bobby has a special need that qualifies for services, then, as his parents, I feel like we are required to get in the pile and make sure he is taken care of.

Something needs to be done.  He clearly needs an aide in class with him.  (Even though yesterday was, by far, an awesome day for him- these teachers ROCK.  He had has best day, and he is getting the hang of it, but it is still a struggle for him). His pediatrician saw it as his 3yo check up, our friend saw it based on his assessment and evaluations, his therapist and teachers see the need.  We, as his parents, see the need.  He has an entire village of people working to help him, and we want to make sure that the village is as big as it needs to be for Bobby.

It still amazes me that we arent the only ones.  When I talk to other parents, it blows my mind just how many have a child (or have a relative with a child) like Bobby, and listening to their stories gives me hope that the earlier the intervention, the better.  I see the similiarities especially with premature babies and with the boys in twinsets/multiples. So many people have shared their stories of severe speech delayes and the behavioral problems that arise as a result of being unable to communicate. While people have come out of the woodwork once we have brought it up, it reminds me (almost) of pregnancy loss: no one talks about it. It's as if simply uttering the words special needs child is enough to make people want to drop their voice and lower their eyes.

I get it.  I do.  In fact, as I filled out the paperwork for MA and had to make the notation of special needs, tears jumped into my eyes.  Hearing the pediatrician tell me, with compassion and honesty, that "Bobby needs help.  You need help with him. We can do this together," made me want to break down in her office. No parent wants their perfect child to struggle.  For some, maybe it puts a chink in the 'perfect'. For me, it just makes perfection hard.  Because, make no mistake, my kids are perfect.  A handful, a struggle at times, brilliant, funny, gorgeous, (did I mention a handful????), but perfect all the same.  My perfect and perfect for me.  But, damn, is this tough.

It's a good thing we have the village... I know I wouldn't be able to do this alone.

783.42

I do a lot of reading these days, not because I have an abundance of free time, but because I feel as though I have no choice. Sometimes, I feel crushed by the weight of everything; other times, I feel freed by the sense that at least I have knowledge.  Knowledge is power; knowledge is something.  And something... I have to do something. If I stay crushed by the self-doubt and fear, then I can't act.  And acting- especially on behalf of one's child- is the greatest of all things in my book.

The kids had their three year old check-up yesterday.  Thankfully, they both are deemed wonderfully healthy, in supply of a good diet, and looking great for 3 year olds.  Seeing where they were at birth, this is such awesome news.  Maya was, as usual, 3 going on 30 in her grown-up demeanor and good behavior.  Bobby.... Well, had I been watching through a one-way window, I probably would have shaken my head and checked "autistic" on my list of behavioral conditions.  He was in rare form; complete and utter meltdown, complete with hair pulling (mine) and biting (me, for the most part).

It wasn't pretty.

Things aren't always rainbows and sunshine at Casa Haytko.

Let me start off by saying that we are really, really lucky.  For the most part, Bobby is a sweet and happy child.  There's a speech delay, no doubt, and a significant one, but behaviorally, things are getting better as he gradually improves with communication.  But it is a slow, gradual change and, on days like today, where his routine is upset, dealing with him alone would be tough but dealing with him and his twin sister is something that makes me want to cry.  Maya realizes that Bobby has some special needs and she is like a second mother, rubbing his head and telling him "It's okay, Bobby" or falling into his arms when he reaches out to her for a hug and letting him hug her like a rag doll.  But it breaks my heart that she is maturing beyond her childhood because she feels the need to be a secondary mommy. And, say what people will about the bond between twins, watching her with him when he is in the throughs of a bad meltdown, is like seeing a mirror into my soul, as she vacilates between trying to physically comfort him and crying because even she cant reach him.

It's awful.

Our pediatrician is great.  She definitely worked with him to get the exam portion done and was calm and cool when he bit her (he bit me 4 times and tried countless other times, so I'm kind of happy that she only got bit once). I ended up having to hold him down on the floor so that she could listen to his heart and lungs.  The weight and height measurements are good guesses at best; all in all, it was a rough hour.  Having a second adult wouldnt have made it easier (unless there was some sort of blood work or the like) and, in a way, this was good thing because it showed the doctor how hard it can be with him.  She 100% supports his speech therapy and is almost as ticked off as I am about our IU experience (there's more to come on that).  She wrote a prescription to submit to our insurance company, in order to try and get the speech covered.  Her diagnosis was "developmental delay as a result of prematurity", with the ICD of 783.42.

In case you aren't a nutball like me and you don't have parts of the ICD committed to memory, that code is for Delayed Milestones.  It's pretty generic and can be used for therapy if your child isnt walking by a certain time or, in our case, isn't talking at age appropriate levels.  But it doesn't come just for fun.  It comes with the emotional impact that your child is delayed.  For us, the exact words were "Severely developmentally delayed".

It's not that this isn't what I expected. In fact, I went in with the knoweldge that I was going to ask her to make that clinical determination so that we could submit it to our insurance as proof of medical need.  But when a doctor looks at you and tells you that, although your child is physically healthy, they are emotionally, developmentally, and socially below age level, you can be as prepared as you want, and it's still a TKO to the mat. Even knowing what I wanted to talk about with her and being prepared didnt stop the sting.  How could it?  As a mother, we want the absolute best for our children; we dont want them to struggle. Knowing that they are fighting demons that you cant even begin to slay on their behalf is not just a beat down, it's emotionally exhausting.

I havent been sleeping well; with the exception of last night when I just fell to the pillow and collapsed, I cant tell you the last time I slept a night without the aid of sleeping pills or simply stayed awake all night until my body finally shuts down (usually around 4:30am, when I should be getting up to run).  There's a constant stream of thought in my head; there's a book in my hand about this or that; they are shoved into my purse, lugged around with the laundry so that I can read a page or two here or there, or tossed at Peter for his scientific take on X, Y, or Z.  My children are ever present in my thoughts and, currently, those thoughts center on making sure each of them has enough one-on-one time to know that they, individually, are special and perfect in the eyes of mom and dad, making sure they have enough time to just play and be 'kids', making sure that preschool is a good fit for them, and trying to balance their lifestyle with activity and nutrition. On top of that is the marathon training that is sliding downhill at such a pace that I am hoping beyond hope to just be able to finish, my own nutrition which is lacking, and trying to finish out the XC season on a high note because I love coaching and spending time with the kids but am struggling to make the time commitment work because, as it is, my time is so thin.

It's amazing to me to hear parents tell me how I have it together when all I think about is how things feel like they are on the cusp of unraveling... How I feel like even going to the bathroom is scheduled (and sometimes behind schedule!)... How I can't imagine facing another day but before I know it, the week is over.  Somehow, the time is there and we make it.  Somehow, we manage to snuggle on the couch and have story time and make a break for the kids to have special time.  Somehow, there are more smiles than tears, and more laughter than meltdowns.  So, we're winning the war.  But the battles?  Sometimes, I feel like I'm getting my ass kicked all over town and back.

Bon Jovi Has the Words

I'm not ashamed  to admit it: I love Bon Jovi.  Always have.  From his big haired 80s days to his short 90s do and even his indoor football love (okay, so not that or the most recent album, which I listened to yesterday and remembered why I didnt love so much...).  Seriously.  I like Bon Jovi.  I had records and tapes in my younger days and I have CDs now, and there's something about his voice and some of his lyrics that just hit me where it hurts.

It's October 15th... So there's a lot of hurting.  Why, you might ask?  It's National Pregnancy and Infant Loss Awareness Day.  While most people are wearing pink and touting Breast Cancer Awareness Month, others of us are holding onto blue and pink ribbons and remembering all of the babies that have died too soon at any age of gestation up through their first year of life.  While our campaign may be one that is whispered, it impacts 25% of parents.  That's huge.  1 in 4 women will lose a child (at least, some suspect those numbers may be higher). For the parents who mourn their children day after day, one day in the mix isn't anything more than a typical day in the life.  But it's a day for advocacy and awareness nonetheless.

For the last few years, Bon Jovi slips into my mind on this day... (I know- you're thinking "Man, that woman has issues..." and truly, I do, but Bon Jovi is the least of them!)  If you've never heard this song, then head over for a listen because just reading the lyrics doesnt do it justice.

It ain't no fun lying down to sleep and there ain't no secrets left for me to keep. I wish the stars up in the sky would all just call in sick and the clouds would take the moon out on some one-way trip...
I drove all night down streets that wouldn't bend but somehow they drove me back here once again: to the place I lost at love, and the place I lost my soul. I wish I'd just burn down this place that we called home. It would all have been so easy if you'd only made me cry and told me how you're leaving me to some organ grinder's lullaby...
It's hard, so hard - it's tearing out my heart. It's hard letting you go...

Now the sky, it shines a different kind of blue and the neighbor's dog don't bark like he used to. Well - me, these days I just miss you - it's the nights that I go insane, and unless you're coming back for me that's one thing I know that won't change...
It's hard, so hard - it's tearing out my heart. It's hard letting you go...

Now some tarot card shark said I'll draw you a heart and we'll find you somebody else new but I've made my last trip to those carnival lips when I bet all that I had on you.  It's hard, so hard - it's tearing out my heart. It's hard letting you go...

(In case you are interested, it's from the "These Days" album, which may be one of my favorites of theirs.  And, as a side, was that really 1995?  Damn... That's almost 20 years ago.  The XC kids are right- I am getting old!)

***
I was talking with a newly bereaved mother the other day and she asked me "When do you stop missing them?"  As I told her "You don't" and heard her tears beging anew, it struck me that, although my heart doesnt break with every thud and while I'm able to breathe in air without my lungs wanting to collapse, the hurt doesnt miraculously heal and the emptiness never goes away.  You learn to exist in the new world you are thrust into... You learn to cope with not having your child or children with you... You learn to deal with the sorrow and find hope and joy in your life and in the gifts that your child/ren was/were and continue to be.  But the missing them never goes away.  It hasnt for me and it hasnt for those I know who have been on this journey a hell of a lot longer than I have.  Just the other day, as I was picking up a dear friend's son from school (he'd missed the bus) and we were discussing his recent birthday (13), that ache of realizing that, had our first baby not been miscarried, I, too, would have an almost 13 year old... That maybe the two of them would have been friends or been in the same classroom...  It was a fleeting thought but still one that made my chest heavy with the ache.

Watching the youngest of my XC team run around the track and having the parents comment that, in a few years, Bobby and Maya will join me, make me wonder if Nicholas and Sophia would be on the team now, with their kindergarten classmates... if Alexander would hang out with the little 4 year old brother who longs to run with us (and will hit to the track for fun, even though he cant compete until next year)... Would they have run like Mama?  Would they be more than happy to hang out on the sidelines, watching the high school football team practice?  Would they long to join the cheerleaders, practicing on the field beside us?  And that familiar ache... It's there, just behind the smile and the nodding that yes, I hope one day Bobby and Maya will be out here practicing with me and with the team...

Another October 15th... Another wave of light... Another hoping that the spirits of those precious little ones will visit while we sleep and continue their lives of peace in the Otherworld.  Another prayer to the Blessed Mother that she will hold them all until I can- until we all can- again...

Another song of praise that I have Bobby and Maya here with me, and that this isnt a day I remember them along with their brothers and sisters...

Another day of loving and remembering and missing...

And never, ever, letting go.

The Book

Every year, we have a Mass said in memory of Nicholas, Sophia, and Alexander on their birthdays.  They've always been at our old parish, but for 2013, we decided to start requesting them at our new parish.  To simplify, on the day the Mass Book opens, you show up at your parish, wait in line, ask for said date, make a donation, and voila! On the date in question, your beloved is remembered in the Mass.  Typically, at the beginning of Mass, the lector or cantor will say "This Mass is being offered in remembrance of XYZ, as requested by ABC", and the intentions of the Mass are said in memory (or in some cases, in honor of), your loved one.

If you aren't Catholic or Orthodox, it may not make a lot of sense, but for us, this is kind of a way to remember and celebrate and honor those whom we love.

As I'm in the line (I got my number at 7am and the book opened at 8:30am), I realize that, at number 18, there's no way I'm going to make my 9am meeting with a consult about therapy for Bobby.  If you arent there when your number is called, you lose your spot.  No joke, this process can take all freaking day.  Our former parish limited you to 5 Masses per year; our new one? 12.  And people team up (again, no joke).  And, by far, I'm about 40 years younger than the youngest person in the room.  As I come in and sit, I overhear talking...

Alot of people are requesting for their children.  They're telling fellow parishioners the stories of their sons and daughters.... It hurts to hear... It's a comfort to know I'm not the only one, and yet...  They've lived for so much longer without their beloved, wanted children.  Some died as babies, some as children, some as adults.... The gentleman across from me overheard my call to my "big sister", who is my Confirmation sponsor and a dear friend, explaining that I couldnt miss this appointment and asking if she could be #18 for an hour.  (And, because she's SO awesome, she drove from the next town over and took my spot for an hour).  When I hung up, he and I chatted.  He was easily 60 years old.  He's getting Masses for his children who have died.  He has been... for the last 20 years.

With a look that says he totally gets it, he says, "I know... It's like you have to do it.  You need to."

There's nothing else I can do.  No other way I can mother them.  I cant plan a 5th birthday party or a 4th birthday party... There will be no celebrations for First Communion or Confirmation or graduation.  No wedding showers.  No weddings or rehearsal dinners or receptions.  No baby showers.  Only this.  Only this yearly Mass, with breakfast to follow and a trip to the Shrine to see their candle.

Yeah, I need to.

Thanks to E, my place wasnt lost, and I was able to request the 8am Mass on Feb 1st and 16th, and Nov 23rd of next year.  And, as I left, relief flooding me, I thought thank God. 

The world wouldnt have ended had those days been taken already, but I dont even want to think about the three new cracks my heart would have had to make room for.

Running for Robert

My apologies if you are on my email list and you are getting this in blog form as well!

 

As many of you know, in 1987, my brother-in-law, Robert, lost a hard fought battle with neuroblastoma. He was 7; Peter was 9. For the last 25 years, there has been a hole in our family where Robert's presence should be. Even though I didn't know him in his short life, as a mother and a sister, it breaks my heart to imagine. Over the last 14 years, I've been blessed to know him through the memories and the love of those who knew him best: his brother and parents, not to mention his aunts, uncles, and cousins, all of whom have their own reflections.

Part of what touches me about him so much is that he and I were born a few weeks apart. As I have grown from a child into a woman, I can look back at the last 32 years and only wonder how the lives of my brother and my parents would have been changed if I had vanished 25 years ago. Especially now, as a parent and a wife, his story touches me even more. (For more of Robert's story, click here.)

Peter and I were lucky enough to attend the 2011 Lemon Ball, a gala hosted by Alex's Lemonade Stand in Philadelphia which serves as a huge fundraiser for ALSF. As part of that celebration, we won the silent auction for a spot on a Team Lemon marathon event. At the end of this month- almost 25 years to the day of Robert's passing- I will be running 26.2 miles at the Marine Corps Marathon, in memory of my special and courageous brother-in-law. One mile for each of those 25 years without him... and a mile for all of those left behind who miss him every day.

While running a marathon isn't everyone's cup of tea, you can still make a huge contribution towards stopping pediatric cancers like neuroblastoma. In 1987, most children who were diagnosed with neuroblastoma died as a result. Today, due to the efforts of groups like Alex's Lemonade Stand, researchers are finding treatments that put this, and other deadly cancers, in remission, and are saving children's lives.

Will you 'run' with me, by opening your wallet and making a $25 donation in Robert's memory? $50? $1? There is no amount too small, and EVERY dollar counts when we are fighting something as large as cancer. You can visit: http://www.alexslemonade.org/mypage/79983 to donate for my running of the Marine Corps Marathon.  You can also donate by text (pretty cool, right?!): simply text "Lemonade E79983" to 85944 to make a $10 donation.  You can also donate by text multiple times if you'd like to make a greater than $10 donation.

Local and want to take physical action? Come out and join Peter, Bobby, Maya, and I as part of our 3rd Annual Robert's Run (our team for the 2012 Lemon Run in Philadelphia). You can visit: http://www.alexslemonade.org/mypage/90078 to donate or to register as part of our team. (Text donations: text "Lemonade E90078" to 85944.)  Runners, Walkers- we want you! Lace up your shoes and come out! It's a great time and we go out for breakfast afterwards.

Whether you are able to financially donate or not, I ask that you say a prayer: pray for all the children and families that are impacted each day by pediatric cancer... pray for our family, who continues to miss Robert and the life we wish we could see unfolding... and please, if you will, pray for me. Pray that, come October 28th, Robert will hold my hand and spur me along those 26 miles through our nation's capital, so that I can cross that finish line the way that, I like to think, he would do if he were here.

 

***

Have you lost a child or loved one? If you'd like me to run the marathon with them in mind as well, shoot me an email.  For a $10 donation (online or by texting "Lemonade E79983" to 85944), I will wear a bracelet that I've personalized with your loved one's name and will mail it to you after.  For example, I will be wearing 4 braclets of one color for my miscarried babies, 3 of another color for Nicholas, Sophia, and Alexander, and a yellow one (cancer awareness) for Robert.  I'm happy to have two arms full of bracelets!

Motto of the Day

Moi an olge agus tiocfaidh sí

(Praise the child and he will flourish)