Friday, August 28, 2015

All good things come to an end...on to the next good thing


See?  She does cry

Well, it's been a while since I last posted.  I won't even try to offer an apology for this.  We have been too busy having lots of adventures and living up the last few months of my maternity leave (aka summer).  But, all good things come to an end.  On Monday, I head back to work. Today is my last day of maternity leave and now, at 4:15 PM, it is just the weekend.  I can't believe how quick 10 and a half months went, even with a horrendous winter stuck inside with a brand new baby.  It was such a wonderful 10 months.  I loved being home.  I am so grateful I was able to be home with her for so long.  I am sad to see it end, but I do look forward to getting back to what I love.  The past few weeks have been filled with anxiety for me, but as it has gotten closer, I am starting to feel excitement and the back to school itch.  I am ready and I am confident this is the right decision, even if it feels so very bittersweet now.   

There are things I will miss most: 
- Relaxed mornings without an alarm.  I've only had to set an alarm a handful of times.  Mostly, I've relied on my body or Hope to wake me up.  This doesn't mean I've been sleeping in, quite the contrary!  Usually I'm up before 7.  I like to get my run in before Hope wakes up, and since it takes me at least 30 min to get out of the house, that means I'm often up by 6.  The light of summer has made this easy and it is getting harder and harder as the sun rises later and later.  But I will miss the easy pace of our mornings, where we didn't have to be anywhere if we didn't feel like it. 
- Being with Hope all of the time and having her smile continuously brightening my day. 
- Not grading papers on nights and weekends. I love my job and I love my students, but hate that my work comes home with me on weekends
- The flexibility of not working.  Things are about to get a lot more scheduled. 

There are things I look forward to:
- Hope getting to hang out with the same kids every day, and watching her begin to build relationships outside of our family, with kids and adults
- getting back to me and having some of my own time, where I am doing what I love
- seeing my coworkers every day
- seeing my students and being present in their lives again
- having something to get dressed up for every day

Things I fear:
- the laundry / housework - how am I going to get it all done?
- not having the time to exercise
- not having the time to grocery shop / cook healthy meals
- finding time for everything
- not having enough alone time with Hope.  I've been spoiled and had Hope to myself a lot.  Between infertility and Hope's heart defect, after every thing we went through, I really need that alone time.  I'm not very good at sharing her, not because I don't want to but because it is physically and emotionally hard for me to hand her over to someone else.  I know I can't hold her forever, and I don't know if there will be another one to hold, so I cherish all the baby snuggles I can get.  I think I take a picture every time she falls asleep on me (which is not very often).  She has been a little extra snuggly the last week or so.  It is as if she knows.  Today, she fell asleep while we were out at lunch with a bunch of other moms.  

Sleeping at lunch on the last day of maternity

Anyway, enough about me.  Like I said, there were a lot of adventures this month.  I am going to run this entry as a photo journal.  I've taken a lot of photos over the last three months and it is the easiest way to remember what happened.  I apologize in advance for the sheer number of photos!

Hope has grown, both physically and as a little person.  I spent some time this week organizing her clothes and had to put a few things away.  While I was doing this, I ran across her newborn clothes and I was completely blown away by how small she was.  In particular, I found the little PJs she wore on Thanksgiving, 2 days after she came home.  She was close to her smallest at this point, and she swam in these PJs.  She has more than doubled her size.  Her little personality is really beginning to shine.  She manages to light up any room she enters.  It delights me to see the smiles she inspires in friends, family, and perfect strangers no matter where she goes.  She makes friends with everyone and if this continues, she is going to be quite outgoing!   At least once a day someone asks me if she is always that happy.  The answer is yes.  She is always happy, always smiling, always happy to do whatever it is we're doing.  I hope she stays this delightful.  She is a blessing and a joy to be around.

Since I last blogged, Hope has been improving her sitting skills.  Here she is sitting in a grocery cart for the first time back in May.  This may be one of her favorite activities.  The first time she did it, she looked around in wonder and smiled at everyone.  Now she puts on a show.  She will stare people down until they look at her, at which point she has already begun waving like crazy.  When they smile at her, she claps.  It's hilarious and embarrassing at the same time.   She also gets excited by all the food around her.


In mid-May, we went on our first solo mom-daughter road trip to NJ.  We hadn't taken Hope on a long road trip since Christmas.  Obviously, there is a big difference between a 2.5 month old and a 7 month old!  One less adult also makes a big difference.  But I planned well and it all went down smoothly.  We left right after her breakfast and right before nap time.  She fell asleep pretty quickly and woke up after about 2 hours, just in time for us to stop at Georgie's diner in West Haven CT.  It was a beautiful day, so we sat on the patio.  This place is very kid friendly and offers an extensive gluten free menu.  They also were very friendly to Sanders and allowed him to join us on the patio.  They even brought him a bowl of water.  I felt like I was on vacation.  After we ate, went to the bathroom and changed Hope's diaper, we got back on the road.  She did great and slept most of the rest of the way.  Unfortunately, we hit a little traffic in NYC and the last half hour was pretty rough.  We were all tired of being in the car and Hope was hungry. 

Sanders enjoying the patio at Georgie's
We had fun with Grammy and Granddaddy (the names my parents have chosen to be called, at least until Hope decides otherwise) showing Hope all of our favorite Ocean City places and introducing her to the neighbors.  It was a little cold for the beach, but we went for a couple of walks anyway and posed in the sand.

Hope enjoying her first lunch at our favorite place, Kessel's Korner, in Ocean City

First time enjoying the beach in Ocean City

First trip to the boardwalk

Bonding with my cousin Ashley

Hope and her granddaddy
Hope loves eating.  When I last wrote, she had just started to try solid foods.  Now, she is totally into them and turning into quite the little gourmand.  We give her everything we are eating.  I rarely prepare special meals.  We like to offer lots of different flavors, including spices, so that she develops a broad palate.  Today she tried wasabi.  She made a little bit of a funny face, but was relatively unfazed.  One of her favorite early foods was broccoli.  Currently, I'd say bananas, chicken, and cheese are at the top of her list.  Oh, and ice cream.  If she sees it, she goes nuts.  She comes from a long line of ice cream lovers, so this isn't surprising.  I don't really think it is good for her to have a lot of ice cream this young, so we try to not to eat ice cream around her.  She now has two teeth, with a few more on the way, and she is getting good at using them.  She usually eats very eagerly when food is offered and makes the cutest little yum yum noises.

Broccoli!


Enjoying Mommy's cone


Enjoying a taste of Mommy's birthday donut at Brown's on the boardwalk


Feeding herself mashed potatoes
7 Months Old!!
Look who is 7 months!
Right around when she turned 7 months, we took her on her first hike.  She did pretty good in the carrier I had, and fell asleep on the way back down.  Sanders was really happy to get out and do something fun.  Here we all are on Mt Watatic, a mountain in North Central MA.



Daddy's girl
Family selfie (minus Sanders)
Speaking of Sanders, he still isn't completely sold on Hope.  I think he'd like us to return her, but with the addition of solid foods, I think she is growing on him.  I find him sitting near her more often and he never misses a meal.  Today he spent most of the day lying by her side while she happily played next to him.  She even hugged him a few times.  Hope just adores him and as much as he wishes she would disappear, he is really good with her.  He lets her poke him, bang on him, pull his ears, stick her fingers in his eyes, nose, mouth, etc.  He's very patient.  She seems to love all animals.  She goes nuts at the shore when we bring her near Gabby, and she gets excited when she sees Pablo.  Her most recent trick is to bounce (she isn't crawling, so this is how she moves) over to Pablo's cage and stick her fingers inside.  When we're out walking, she grunts at all the dogs we see.

A girl and her dog



Checking out Pablo
From the time we brought her home, we have been excited to show her the world.  This summer we've really had the opportunity to do that.  We try to do one fun activity every weekend.  Sometimes we sail, sometimes we fly, sometimes we hike. In early June, we took a day trip up to Cape Ann to have some lunch.  She has been on both sets of grandparents boats and is a regular passenger on her daddy's plane.  She was less than impressed with the boats.  I don't think the restrictive life jacket was her favorite thing in the world.  The plane is fine.  She usually falls asleep.  We've only had one flight where she didn't do well, so I pulled her out of her car seat and all was well until she got squirmy and I had to put her back in, which did not make her very happy.

Sailing


Not so sure of granddaddy's boat
Exploring Cape Ann.  Early summer lunch in Gloucester
Relaxing in the plane in the backseat with Hope
Yes, mommy, I'm awake back here 

Airplane baby

Riding the carousel at Wonderland.  Hope was unimpressed

She had lots of fun on the beach this summer and even has the tan to prove it.  From the time I got pregnant with her, we prayed that her skin would be more like mine and she wouldn't be too fair. Chris joked all last summer about me sitting in the sun and how I was going to make the baby come out tan.  Seems like we got our wish.  We've been outside most of the summer and she's been wearing SPF 50, but still managed to get quite the tan.  It's really cute.  Maybe she'll be a future OCBP lifeguard?

Future guard
Mommy and Hope's first real trip to the beach

8 Months!!
Playing in the sand to celebrate 8 months!
Sleeping naked on the beach
Playing in the water

Sitting in the chair like a pro
In July, she got to know most of my extended family on my Dad's side.  My 3 cousins come up for a week every summer with their kids.  This year, it was 8 kids 13 and under.  It has been so fun to watch them all grow and now they will watch Hope grow.  The kids had a blast entertaining Hope.  She thought they were just great.  This year we got to all celebrate the fourth together

Happy 4th of July!



Beach baby


Holding court

Cousin Sara and Hope




Can you see her personality in this picture?

The whole gang


 In addition to my cousins, July brought another set of really special visitors.  My Spanish sister, Bea, was here with her husband, Alvaro, and their baby.  She lived with my family 20 years ago.  This was her first trip back to the USA, though we have seen her many times in Spain, including at their wedding.  Her whole family is very special to us.  Her 3 brothers also spent time with our family, either living with us or living in the same town and spending time with us.  Her daughter, Julia, is just a few months older than Hope, so it was fun to see them together. This is just another example of how the exchange student program makes the world a smaller place.   

Sisters / Cousins



Hopefully there will be more pictures like this as they grow

Enjoying their first of many coffees together



Matching dresses

Bea had the magic touch

Pretty blond baby
9 Months!!

As she has gotten older and become more independent, she has different ideas on what she'd like to do with her monthly sign.  At 9 months, she really just wanted to wave it around and eat it.  I tried to take it so that I could get a picture where you could actually see the sign.  Instead I got this.   She definitely has opinions these days!



The beginning of this month, we took a trip up to Bar Harbor to visit some family friends.  It was a picture perfect day and I have to say one of the most beautiful places we have ever landed.  We left late morning and were there in time for a late lunch.  We walked around town and saw some of Acadia National Park.  It was a big enough taste that we'd like to go back and spend more time there.  Chris had never been.  I was there 6 years ago to run the Mount Desert Island Marathon.  Hope enjoyed the day, and as always, charmed everyone with her sunny disposition.  

Coming in for a landing

Ready for lunch

Mmmmm.....Lobster bisque

Is that for me?
Yep, she's got another cone

Look what Dad caught
Pretty baby on top of Cadillac Mountain

With our family friends Sam and Maxine


Mommy and Hope in Bar Harbor


10 Months old!!




On August 17th, Hope turned 10 months old.  As each stage goes by, I keep thinking it is my favorite stage.  Then I get to the next one.  This is truly my favorite stage.  She's constantly waving hi and bye at people, and clapping her hands.  She does both of these things on command.  She bounces up and down to get places.  She talks...a lot.  Some words we think we have identified:  "mama", "dada", "daw" (dog), "Hi", "Bye."  She is playful.  She is easy going.  She eats well and sleeps well.  We are really lucky, but I guess in a way, we paid up front.  Hope can do so much and she may be the coolest little person I have ever met.  I am in awe of her and keep wondering what I did to deserve to be her mom.  She is captivating, joyful, smart, and just really awesome.  But I'm not biased or anything....

She's always had quite the personality.  The nurses in the hospital used to laugh at her famous stink eye.  The feeding team got it the most frequently.  The stink eye is still alive and well.  Last week I went to have blood drawn to check on her thyroid levels, which we are continuously monitoring because her thyroid had shut down when she was so sick.  She was not happy about it.  She complained the whole way out of the lab and into her carseat.  As I sat at a red light, this is what I saw in the rearview mirror.  Lol.   One pissed off baby.




We spend a lot of time around my running club.  It's what I do when I'm not being Hope's mom and more often than not, she joins me on my runs.  Just last week I bought these for her to wear to my running club's August race.  She wore them proudly.  I can't wait until she is running on her own and can run alongside me.




Two weeks ago, we took our last summer trip to Ocean City.  I got to do one last swim in the Ocean and witness this beautiful sunrise:


Chris' parents joined us down there, so Hope got to have all her grandparents in the same place.  It was a nice trip. We will go back one more time in September.





We have spent this past week getting ready to go back to work and transitioning Hope to daycare. She will be going to the daycare at Malden High School, and will be in the building with me.  We went for two half days this week.  The first day, I went with her and observed.  I was impressed and happy with what I saw.   The second day, she went by herself and I went up to my classroom to get some stuff done.  Hope did great both days and seemed happy.  It definitely wore her out, and there will be some schedule / feeding adjustments to make, but overall, she's going to be just fine.  It was clear that she will be loved and cared for while she is there and that is what matters most.

Here are a couple more pictures from this month:

lunch with her future girlfriend Saoirse
Starting her young
I have no idea how she got under here, but apparently, this is where you play the xylophone
Petting Sanders

The only thing I didn't really touch on is her health.  Funny how that used to be a focus for me, but given how well she is doing, sometimes I forget how sick she was. We've only had two doctor appointments since my last blog and one was just her 9 month well visit.  The other was with the endocrinologist.  At both appointments, her doctors were pleased.  She has moved up to the 4th percentile for weight.  She wasn't even on the chart when we came home, so this is huge and the pediatrician was practically doing a happy dance after she got weighed.  She's hitting all her milestones, but she is still a little behind on gross motor, which really isn't surprising.  This basically means she's not crawling yet and if she were a normal baby, we may not even really be concerned yet.  The endocrinologist and I discussed potentially getting her off the thyroid meds by her first birthday, which would make me really happy.  It's a real hassle to have to crush up a pill every day and give it to her, but we'll keep doing it if she needs it.  What's really amazing is that that is all she is on.  We have not seen her cardiologist since May, when he sent us home and told us not to come back for 6 months, that she was too healthy.  We have a slew of appointments in the next few months, which has added a lot to my anxiety of going back to work.  It is really hard to schedule appointments around work.   Some of the appointments we have coming up should be pretty interesting.  First, we have endocrinology, where they may tell us we can stop the meds.  Then we have genetics in Oct.  Back in May, we had a micro array (blood test) done to check her genetic make-up.  Specifically, we were looking for 22q11 deletion, also known as DiGeorge syndrome.  Its a deletion on the 22 chromosome that is as common, if not more common, than Downs syndrome, but is not always as easy to identify.  Some babies you can look at and know, others you can't.  There are people that live their whole lives and don't know they have DiGeorge.  It is commonly associated with Hope's particular heart defect, so she is high risk.  The general opinion is that she doesn't have it, and if she does, it is mild.  The biggest concern for Hope with 22q would be learning delays.  The other interesting appointment we have is with the  Cardiac Neurodevelopmental Program to see how she is progressing.  And then at the end of November, we go back to her cardiologist,  So all is well.

This was definitely a long blog.  Thanks for reading.  It has been a really amazing 10 and a half months and a great summer.  I hope to have some time to update the blog again after my first week at work :)    



Tuesday, June 30, 2015

Spring in the Prouty Garden

Once again, it's been a while since my last post and once again, I'm writing from the place that seems to inspire me to write the most - the Prouty Garden at BCH.  Hope and I came down after our Tuesday mom's group for an appointment with her endocrinologist.  Since the appointment was at 1:15 and it wasn't worth going home, we got to spend some time in the garden having lunch.  



I don't know if I've mentioned that an endocrinologist was part of our team before.  After Hope's surgery, her system pretty much crashed, including her thyroid.  She was diagnosed with hypothyroidism and put on medicine, and today, that's the only medicine she's on.  All along, they told us she would likely outgrow it, a condition called "sick thyroid".  Basically, she was so sick her thyroid shut down.  It's amazing, because sometimes I forget just how sick she was.  She was REALLY sick.  Anyway, today was a check up.  Like all appointments these days, it went incredibly well.  For the first time since leaving the hospital, we have a timeline.  
Things look so good, that we're talking about potentially weaning off the meds entirely by the time she is one, which scary enough, is not that far away.  In addition, Hope was weighed.  She weighed in at 14.6lbs, a whopping 5th percentile.  I have no illusions of Hope ever being a chubby, roly poly baby, but each time she takes a step up on the chart, we all breathe a little bit easier.  We're doing things right, and she's growing bigger and stronger every day.  




Friday, May 8, 2015

Mother's Day - in honor of my infertility sisters and fellow heart moms


Today is Mother's Day.  I'm mostly excited, but it holds a lot of emotion for me so I wanted to write this post in honor of all mothers, but especially in honor of those women who are mothers at heart, dreaming of the little miracle that will someday call them mom, dreaming of the day that Mother's Day will not be so painful.  I also write this in honor of the moms who are spending it in the hospital, fighting their best battle for their little warriors.  I want these moms to know that they are not alone, and that we celebrate them too.


While I agree that moms should be honored, and I celebrate my own mom and my husband's mom, as well as the generation of moms that came before them, my grandmothers, I really wish it was just a day to honor all women.  Why can't it just be Women's Day?  There are so many women out there who are not moms that are pretty extraordinary.  And how about those who have tried to become a mom but try as they might, they can't get pregnant?  Or what about the moms who have lost their babies and are now childless? This day is heartbreaking for these groups of women. 


Mother's Day is a day that is particularly hard for infertiles, those who have experienced miscarriage, and others without kids, especially for those who want kids.  It is a reminder of everything they want but don't, or can't, have.  I know because I've been there.  This is the reason our daughter is named Hope.  In the weeks leading up to Mother's Day, all everyone talks about is Mother's Day.  There are ads on tv, people ask about your plans, you can't even go into a store without having it brought to your attention.  Year after year, especially while I was fighting the infertility battle, I wanted to crawl into a hole and only emerge when it was over.  It was a constant, painful reminder of what I wanted and could not have.  It filled me with sadness and with each mention of Mother's Day, my heart is with these women.  Today I will honor the childless, whether it is those in the throes of IVF, those simply trying to conceive, those who have not yet met the someday father of their future children.

My heart goes out to my fellow heart moms, or other moms of sick kids, especially those who are not as lucky as I have been.  These are the moms who will be spending their Mother's Day in the hospital in vigil by their child's bedside, or worse, grieving the child they have lost.  I think of the mom of little baby Lawson who died last week.  Two weeks ago, she was probably looking forward to this weekend.  Lawson's surgery was supposed to be routine and he probably would have been home by now without the complications that eventually cost him his life.  I can only imagine how she must be feeling this weekend.  Or the mom of a baby named Evanna, who is fighting hard as I write.  There are so many more stories like this.  I pray that these ladies, and other moms of sick kids and angels in heaven can find 
peace.   

This morning, I will head over to Davis Square for the Mary O'Brien Memorial Run, M.O.M's run, a popular run with my running club.  I look forward to running it for the first time as a mom.  Then we will go to Chris' parents.  Next weekend I celebrate it with my family in Ocean City.  I will spend my first Mother's Day doing what I have often done on Mother's Day, but this year I will be joining in on the celebration rather than as just looking on.  And as I do so, in my heart I will celebrate the women whose shoes I have walked in on previous Mother's days and pray that one day they will be joining in as well.  Take a moment to tell a childless women how much she means to you.  Trust me, she needs it today.  In my heart, I will also celebrate grieving and fighting moms, and I will dream of a world where there is no more childhood illness, no more loss.  If you can, take a moment and celebrate these moms with me as well.  They are so tough and brave, and no one wants to be in their shoes.  

Happy Mother's (Women's) day!


Thursday, May 7, 2015

1 in 100



We are the lucky ones.  Not only are we the parents to the most beautiful, perfect baby girl, but she's going to be ok.  There were times where this was an uncertainty for me, and while there will be more procedures, for the moment all is well.  Without the surgery her life would have been short and the surgery was not without risks. There was a 1 in 100 chance it wouldn't be, according to the stats for the surgery she needed, though in Hope's case it was probably a higher chance given her size at the time of surgery.  Not every child who is born into the heart world is that lucky, and having seen other heart families lose their warriors recently, I'm really feeling that reality these days, and feeling really grateful for how lucky we are.  I'm writing this from a favorite spot, the Prouty Garden, a sanctuary at my favorite hospital, Boston Children's.  

This is not my first post from this place.  Remember this?


My first post from here was when Hope was only a week old.  A similarly beautiful day, but a crisp fall afternoon, and the threat of winter in the air.  A sense of doom - we had not only just learned that instead of bringing our beautiful baby home, she would have surgery right away, but also that she may have a bowel infection, likely a complication from her heart, and that she would not be allowed to eat until it cleared, which also meant not until post-surgery.  Little did we know, it would be almost 2 weeks until she was able to eat again.  I sat in this garden, winter looming -  the fountain shut down, the shadows long, not many people around me and cried - tears of fear, tears of sorrow.  It is a healing place and a peaceful place.  Sitting here writing that blog post and crying those tears was cathartic.   

Today is a different day.  It is beautiful like that day, but the fountain is on, the garden is full of people, full of happiness and joy for what is to come, there is the promise of summer.  There are no tears as Hope peacefully sleeps in my lap, lulled to sleep by the fountain.  Today we got good news.  We came in for a lung scan.  At her cardio check-up in April, the echo suggested one of her pulmonary arteries was small, so we needed the lung scan to check and see how her lungs are functioning.  We had this same test shortly before discharge.  At the time her left lung was functioning at 43% and her right at 57%.  It is normal for the left to be lower and that was considered the low side of normal, but normal nonetheless.  Well, today we were at 46 / 54 - perfect!  Her cardio made a big fuss as he ushered us back to a staff computer and introduced us to other staff - said she was too healthy to be here.  I love this aspect of children's - rather than being taken to a sterile exam room and made to feel like the medical novice I am, he takes us to a staff computer room and I feel like a peer, an equal, like I am collaborating with her doctors and nurses for what is best for her.  I've always felt that way here - included.  I am overjoyed at the results.
Today with this amazing news, I am trying to soak up the sun and enjoy this place while it is here because who knows how much longer it will be here.  There are plans to expand and build on it, which is devastating for the entire hospital community, patients and staff alike - it truly is an oasis in a place that can be quite scary.  It is the place where sun first hit Hope's face at 10 days old and today, the place where she first enjoyed the feeling of sitting in the grass and napping in the sun.  I try to tell myself that they will help more children, but I can't get over our own personally loss and the loss of such a healing, peaceful place for so many others.  I spent hours sitting there today watching kids play and feel the sun on their face, relishing in it.  I watched employees eating their lunch and enjoying getting out of the confines of the hospital.  I watched a mom and a nurse wheel a little girl out, hooked up to many tubes, wires, and IVs, obviously a heart patient, as she was sporting a beautiful zipper scar. They sat her by the tulips and took a ton of pictures.  She was bigger than Hope, but still a baby.  I wondered what her story was and loved seeing the nurse works with the mom to make sure this baby got to enjoy some time outside.  I saw cancer patients, kids on IVs, kids with feeding tubes.  No matter what their circumstances, all of them were smiling.






In addition to this amazing news, Hope  continues to do amazingly well.  She is such a happy, easy baby. She sleeps well, mostly, and is enjoying learning about the world around her.  She loves her mommy and her daddy and really loves her big brother Sanders, which I assure you is not mutual, though Sanders is warming to her now that she is learning to eat solid food.  She has tried many things and so far seems to enjoy it all, just as she seems to enjoy life, but seems to enjoy peanut butter the most.  We were given the ok at her last appointment to feed her anything we wanted except for cows milk and honey.  Peanut butter is high in good fats and calories, so it was highly recommended to us.  She also likes yogurt, bananas, avocado, baby turkey and chicken, sweet potatoes.  


Other firsts:
She ran her first road race without the infant carrier. 


She flew in her daddy's plane for the first time.  She slept through it.  




She had her first swim lesson, which she didn't hate:


She is also sitting.  Still a little wobbly, but she's almost there!  She still doesn't love her tummy and while she can roll, she's not a huge fan of it and prefers not to.  She is still a little behind in gross motor, but off the charts socially.  She loves people.  And dogs.  Yesterday I took her to the dog park.  She likes to laugh when the dogs bark.  She also laughs when she is thrown in the air.  She is a joy to be around.

I can't get over how lucky we are.  

1 in 100 that we would even have this beautiful baby

1 in 100 that she would have a congenital heart defect, which while I wouldn't wish it on anyone, it makes her the special, brave little girl that she is.

1 in 10000 to have her specific condition.

1% on the growth chart for weight.  

We are so lucky to have our little 1%er and I am feeling that blessing more and more with each day.

Friday, April 24, 2015

Running for Hope



Two weeks ago today I took part in the 119th running of the Boston Marathon.  This event is symbolic for so many reasons, both to my city and to me.  Even before 2013, the Boston Marathon was a big deal here in the Boston area.  It symbolizes the end of a long winter and welcomes spring.  People are off of work for Patriots Day, a New England holiday marking the anniversary of the battles of Lexington and Concord and of course, Paul Revere's legendary ride.  The Red Sox are home and the game starts at 11AM to coincide with the runners coming through Kenmore square.  Starting the Friday before, there is an energy in the city that is indescribable. 
As a runner, it's like Christmas.  It's the closest thing we have to a convention and it's amazing to see people arriving from all over the world, donning their brightly colored marathon jackets.  It's fun to reminisce about previous Bostons while looking at the different color jackets that symbolize the years.  For local runners, it's easy to get excited, whether we are running or not.  Boston runners are especially proud of this event, the worlds oldest and most prestigious marathon.  Every runner here has had to earn their way, whether it is through grueling training to get that BQ (Boston Qualifier), by raising $5000 or more for charity, or by putting in volunteer time to be issued an invitational number by a running club.  Almost everyone who arrives in Boston to run is excited because it truly is a privilege.
When I learned I was pregnant last March, Boston was one of the first things to come to mind.  I did the math - I knew I'd have at least 5 months to train, even if she was late.  I had worked incredibly hard to earn my number, running a 7 min PR at Philly in 2013, for a 3:33 marathon, something I'm incredibly proud of and had never thought I'd be capable of.  I couldn't pass it up.  So at 8 months pregnant, I registered for the 2015 Boston marathon.  It kept me running throughout my pregnancy and was motivation to start up again shortly after she was born.
What does Boston mean to me?  As a runner, it is everything to me.  I became a runner because of Boston.  Shortly after I moved to Boston, I watched the marathon on TV.  I was so inspired and amazed by the humanity of the sport that I signed up for a half shortly after, at the urging of some friends.  I ran my first half with my friend Jess in 2003 and before I knew it, I was signed up for my first marathon - Hyannis 2004.  It took me 4 years and 13 marathons to qualify, but it was always a goal.  When I finally did, it was by the skin of my teeth, but it was glorious.  I had only seconds to spare.  I hoped to do it again, but it took another 5 years.  
Running is my way of coping when life gets hard. I had to give it up for a while when undergoing ivf treatment and I was miserable.  The combination of the hormones and not exercising caused me to gain 30lbs.  When I was done with IVF, I vowed to never give up running again, as long as I was able.  Many people have remarked on how quickly I returned to running after having a baby, but it truly keeps me sane.  It is my therapy.  I ran up until 3 days before Hope was born.  When she was in the hospital, running was often the only time I got outside.  I often ran home in the afternoon and drove back to the hospital so Chris had a car to drive home in.  It truly was my escape.  On a glorious fall day in early November as my daughter was having her chest closed, I went for a run.  Why?  Because I couldn't think of anything else to do and knew it was the best way to occupy my time.   So in some respect, I owe my sanity to the Boston marathon.  
But it is so much more than that.  It also means friendship.  The community I have found through running is strong and supportive.  It is my village.
And this year, as you all know, it was more meaningful than ever.  I ran for Hope.  Hope for those fighting childhood illness, hope for those fighting infertility, for my Hope.  I have never been more proud to run a marathon.
It was an amazing week.  My running club started the week leading up to the marathon with a memorial to the bombing victims the Monday before the marathon.  Tuesday we ran our final track workout, the Lou Ristaino workout.  Wednesday, a friend had a sign making party, Thursday was our pre-marathon pasta party and the Sean Collier memorial run, and then it was marathon weekend!  

On Friday, Hope and I took the T in to the city to meet my friend Kate and go to the expo.  

First ride on the T!

Kate was an excellent expo companion.  She and I earned our first BQs together at Philly in 2008 and have been through a lot together since.  She wasn't running this year, but had the perfect energy to match my excitement.  We had a great lunch with a couple glasses of wine then on to the expo.  I credit her for all the pictures:

Picking up my number 


Posing with Gordon, one of our many SRR volunteers


On Saturday, it was back into the city for the Children's celebration brunch.  We heard so many inspiring stories and I felt so good about running on the Miles for Miracles team.  We came back into city later that night for dinner with my parents.  We took a few pictures by the finish line.


At the finish

Cute baby in a garden

Sunday we had dinner at my friend Crissy's. She was also running and had invited a few others over.  It was a small, low-key pasta dinner.  It was perfect.  Her kids entertained Hope, the food was good, and the company was even better.  After dinner, we went home and I started to get ready as it was going to be an early wake-up.  It was much more work having to get myself ready as well as get Hope's things ready too.

My singlet, all ready to go 

Marathon Monday was not the day I had ordered.  I wanted a picture perfect sunny /50s day.  Instead we got a cold, raw, rainy 40s.  These were the worst conditions I'd ever raced in.  Only fitting, given what we trained through.  I was way more nervous than I expected, mostly because of the weather.  Had it been a nicer day, the only emotion I would have felt would have been excitement.  But weather is not something you can change, so I tried to make the best of it.  Running for Children's, I was lucky enough to have an indoor place to wait, even if it meant being on the bus by 5:30AM for a race that didn't begin until 10:50.  It was quite a luxury, especially since it was right at the start line.  They had food out for us as well as anything else we might need.  They also had about 10 portapotties just for us, as well as two real bathrooms.  This was amazing!  Anyone who has spent any time around road races knows that not having a bathroom line to stand in is an incredible thing, and even more amazing to have real bathrooms. I watched each wave start from the front porch of the lodge, which was also pretty cool!
When we first got out there, I took a little walk around the Hopkinton common to soak up the energy.  I saw all the news people doing their pre-race coverage.  There was a ton of security, so I wasn't able to do much because I was afraid I wouldn't get back to the lodge.

One of the businesses on the main drag in Hopkinton

Our refuge

The Start line with BAA headquarters in the background 

Hopkinton common

View of Wave 1 from the porch of the lodge

By the time I was escorted out to my corral by the directors of the Miles for Miracles team, I was really nervous.  I got in my corral and started looking for my friend Karen, who I had planned to meet up with.  I saw my friend Carrie-Anne, but resisted the urge to start with her as I knew she was far better trained and had a much more aggressive goal than I did.  I really just wanted to enjoy the day.  I never found Karen.  With 5 or so minutes left, it began to rain.  The gun went off, and we were off!  It was raining pretty good by then and rained for the next 14 or 15 miles, I'm not sure how far.   It was cold.  But I was still determined to soak up the day.  

In the first 5 miles, many runners applauded me for running for Children's.  They grabbed my shoulder, patted me on the back, thanked me for running, shared their stories of what Children's meant to them, asked me about Hope, etc.  It made me so proud of what I was doing.  I loved hearing each of their stories and was touched as they reached out to me.   I didn't really expect this and I was really touched that people took the time to reach out. 

By mile 8, I was cold, wet and needed a pit stop, so I pulled over to a portapotty, something I almost never do when I run marathons.  But I really just needed to hit the reset button.  It was good to get out of the rain.  When I came out, I ran into a friend from SRR, Julia.  She and I ran together for a while, but I was feeling pretty rough, and while I was so happy to see her, I didn't have much energy to chat.  She pulled over in Wellesley to use the bathroom, we met up again after the scream tunnel, but then I couldn't keep up with her anymore and I let her go.  Eventually, when I got into Newton around mile 15, I started to feel good again and I eventually passed her, but it was not the last time I'd see her.  

There were many times between miles 5 and 14 where I wondered if I'd actually finish.  I was so cold, I wondered if I'd end up in a med tent with hypothermia.  Early on, I had duct tape on my shoes and had written "for Hope" on them. When I looked down at them, it helped me rally and continue.  I had to pull the duct tape of at mile 4 because it was too wet.  From that point on, each time I thought of stopping, I thought about how much Hope had endured early in her life, and how much all the children at Children's endure and it gave me strength to continue.  I thought about our time there and I thought about all the kids  and families that were currently hospitalized and how they needed me to be strong.

Spectator support was thin, but strong.  At one point in the first few miles, I saw a kid holding a sign "the rain won't stop you, so it won't stop us". In Natick, around 8.5, my brother in law was cheering with some of his buddies - he was the first of the people I knew that were out there.  I ran over and slapped him and his buddies five.  At this point, I was just so happy to see someone I knew.  I was really struggling, so it was quite a lift.  Next up were the Wellesley College girls. I slapped every one of them five and my face hurt from smiling so much.  Then I ran by the big Children's Hospital Cheer Zone, the first of three.  I felt like a rock star because I knew the people cheering me on in these cheer zones were acutely aware of the difference our team was making with the funds raised.  

Running by the Children's cheer zone

Next up, around mile 14, were our friends, Andy and Shannon, who were out in the rain with their 4 year old, Caroline - it was so great to see them, I was so impressed they were out in the rain, especially since Shannon was 9 months pregnant and delivered a beautiful baby girl a few days later.   I think this was a turning point.  I was more than half way and shortly after I saw them, the rain let up, I think.  It really is hard for me to pinpoint exactly when the rain stopped - I just realized at some point in Newton that it was no longer raining.  Anyway, I knew there were only 3 more miles to the turn into the Newton hills and 4 more until my family, who was waiting for me at 30k.  When I finally made that turn on Commonwealth Ave, I could not stop smiling.  I was so happy.  My friend Crissy passed me, but neither of us had any idea until she looked at her pictures (she's the one in red):


I charged up the hills and was pretty excited about seeing my family.  Chris had a dry shirt and dry shoes for me.  For the first time ever, I had decided on a wardrobe change mid run.  When I got to 30k, I pulled over, ducked under the rope, and started pulling clothes off.  Kate was there and helped undress / dress me. Another friend, Laurie, appeared like a magical unicorn with a pair of red stretchy gloves, presented them to me, and asked if I wanted them - I was like, really?  Are you serious?  And the next thing I knew they were on my hands and had replaced my soaking wet gloves.  After that, I ran over and gave the baby a kiss, and I was off again, but not without slapping hands with all of my SRR teammates spectating at 30k.  

30k

Having the club there is a huge lift - it gives us something to look forward to. We have an "elite water stop" where club members can leave their gear so that it is handed to them as they come by.  This is where I watch the marathon if I am not running.  It's a lot of fun.  This year, it was the reset button I desperately needed.  I left there feeling refreshed and ready for 8 more miles.  It saved my day.  I heard my name one more time as I started to climb Heartbreak - Brendan, another SRR, was standing there and it was a nice surprise!  Also, I spotted Julia once again on this last hill.  It was the last time I'd see her until we were both finished and back at the SRR hotel room.  As I charged up heartbreak hill, the last major climb of the Boston Marathon, I realized I felt great.  For several miles after leaving 30k, I reveled in the fact that I was sort of dry and it was no longer raining!  Heartbreak was one of the places where I contemplated my dryness.  My hands were warm!  It was amazing.  Before I knew it, I had crested heartbreak and had barely noticed.  I began my descent back into the city, and this is where it got really fun.  I slapped all the BC kids five.  This is always a fun part of the race - BC has been partying all morning, so they are pretty fun.  
Around BC my friend Melissa, with whom I ran 6 miles of my qualifying race, passed me.  She looked great and I was so happy I got to see her.  She went on to run 3:32 and change, a BQ and a PR.  After seeing her, the rest of the race is a blur.  I smiled non-stop for all 6 miles.  I slapped people five.  I ran through another Children's cheer zone around 24.5.   I was passing people like crazy.  I was so excited to be feeling so great. I just wanted to soak it in.  As I made the turn from Comm ave "right on Hereford, left on Boylston" I was filled with emotion.  The crowds were roaring.  I ran the whole length of Boylston trying to get people to cheer for me.  The crowds erupted.  It was so much fun, and I was laughing nd crying at the same time.   
I had been five years since I ran this famous stretch down Boyslton.  So much had happened in my life and in this city.  I was so moved to be back here.  I thought of all I had overcome - infertility, pregnancy, Hope's heart surgery, and then of all the city had overcome.  I was filled with pride.  I crossed the finish line, arms stretched wide open and reveled in the glory of it.  I felt like I was glowing for the rest of the day.  There is only one Boston and I had just finished it, and finished in a strong 4:00:57.  This was neither a best or a worst for me time wise, but was certainly my strongest finish and I had never enjoyed Boston more.  I was sad to see it end.  

My friend Kimi took this photo as I crossed the finish on her TV

All finished!

I had fun celebrating my achievement the rest of the week.  My parents and I went into the city the next day to buy a jacket (I've never bought one from previous Bostons!) and to get my medal engraved.  On Wednesday, my friend Melissa and I went to the Sam Adams brewery to get our free pint glasses.  Hope really had fun on the tour...lol.  I think I wore my jacket every day for the last two weeks..lol.  I still feel like I am on cloud nine.  Even though the weather was terrible, I had a great day.  My performance goal was always to have fun, and I'm so glad I met my goal.   I also met and exceeded my fundraising goal - I've raised over $5000 for Children's and donations are still coming in.  Once again - thanks to everyone who donated!  Thank you letters will be coming soon. I hope that every time I run Boston in the future I have as much fun as I had this year.  I finished the race knowing I had met the biggest goal of all - I had run for Hope.  

The day after glow

At the Sam Adams Brewey getting our free pint glasses

Celebrating