back to basics

“Back to Basics”

Thanksgiving 2020

Dear Eli,

Happy first Thanksgiving!  We will be celebrating at home apart from our families, but I hope that you will be able to feel the festive spirit in the air with the flurry in the kitchen and the levity of a day free of other commitments.  Originally, we had planned to have a small group at Nai-Nai and Yeh-Yeh’s in NJ, but state limitations on indoor social gatherings caused us to split up into even smaller groups.  Then, to add to the fun, you and your cousin both caught colds, and with travel restrictions for PA imposed, all signs pointed to us canceling our plans altogether.

Sophia must have overheard me (the girl does not miss a thing, I swear) talking to your father about how different Thanksgiving would be this year, because she has been echoing some of what I have said in conversation.  When Poppy was talking last weekend about Christmas coming soon, she exclaimed adamantly, “Don’t forget about Thanksgiving!  We get to play with our people.  We get to be together.”  Not wanting to burst her bubble, I wasn’t ready to tell her then that that actually would not be the case this year.  Even tonight at bedtime when she expressed that “for Thanksgiving, we get to eat with our whole family,” it was hard to find the words to explain that we were not gathering together “because of the germs.”  How does one explain a pandemic to a 5-year-old who was quarantined all spring and most of the summer while I underwent treatments?  Who lost her best friend in the world, her kitty “sister” Bianca, in the midst of all of that?  How do we avoid disappointing her when she has already been through so much – watching me lose my hair, comforting me on those nights before chemo when I would cry at the dinner table, being patient with me as I struggled to keep up with her nonstop energy, knowing which side of my body she could hug without hurting me?  It is so much.  A mom with cancer, a pandemic, and then came you.

You were born on March 18th.  The very next day, the governor of Pennsylvania signed the executive “stay at home” order.  We call you our quarantine baby, because since you were born, we have diligently limited contact with anyone outside of our household because you were so new.  You look into our eyes and can use context clues to recognize when we are smiling, because anyone around you has always worn a mask.  Truly, what a year to come into this world!  Who would have thought that we would not be able to hug and kiss one another, or that gathering around a shared table would logistically be so difficult?  I never imagined that I would be having conversations with your grandparents or aunts through our kitchen window, or that porch drop-offs would become a thing to do to get out of the house to take a ride.  And I never would have believed that my family members would have to wait over 5 long months to hold you for the first time.

Yet, you are simply oblivious to it all and are content as long as you are fed.  You watch your sister with pure adoration, like she is the most amazing person you know (which is true, and I hope is true for years to come).  To our surprise, you just started crawling and are enjoying the freedom to explore.  I watch you sitting up and muse about how big you are getting but at the same time how small you still look in Daddy’s arms.  I cherish that you continue to be a snuggle bug and prefer to nap on top of us, even if that means we cannot get to other things.  Those things can wait.  Yes, those things really can wait.

If there could be one lesson learned this year, it is that we do not need much of what we think we need.  It takes a diagnosis to shift one’s whole perspective.  It takes the loss of human contact to remember how precious it is.  It takes the threat of health to realize how important it becomes to keep your family safe.  It takes the birth of a child during “these unprecedented times” to resolve to be more present than ever before.  And it takes reassuring a 5-year-old that the world she once knew before the germs can still be trusted and forgiving, in time.  It takes patience.  It takes faith.  It takes a little grace.

Eli, we hear others discuss next year and how much they want things to feel “normal” again.  But I cannot forget this year, the year that has become a meme, the year that has been blamed and shamed and shrugged off like an anomaly.  Instead, it is the year that you found your way to us through what seemed like insurmountable odds, our double rainbow who literally stuck with me through my hardest days (a surgery! and chemo! while pregnant! – I will never stop marveling at that), our sweet, sweet miracle.  We have clung to you as you have become our beacon of hope, our shining light – it’s in your bright smile, your gentle touch, it is in the way that you need us.  Thank you, baby, for being a happy boy, for reminding us of the most basic things – love of family, joy for each new day, wonder for the little things, and hope for a better tomorrow.

Happy Thanksgiving, Anthony Elijah, the first of many more.

Love,

Mommy

quarantine life

It’s been a crazy 6+ months. I say this because our little family has gone through quite a lot. And aside from our daughter witnessing my breast cancer journey firsthand, and gaining a brother pretty much at the same time, I’ve noticed that the pandemic has affected her in other ways as well:

• She flips out every time we ask her to wash her hands... again.
• We no longer hug/kiss our relatives as greetings or goodbyes.
• She’s immediately defensive when I start questioning her playground habits: “But we wiped everything down and I used hand sanitizer!” 
• Although she has no issues wearing her mask, she constantly questions why others aren't.
• She’s learned to live in the car, so if she needs the restroom then it means in the trunk, in the travel potty.
• She asks, “Remember when we went to that restaurant/park/festival/museum/concert?” like it  was a lifetime ago.
• When she wants to do something but we can’t, her response is, “I just wish this whole germ thing was over.”

And the baby? Well, he knows when you’re smiling even while wearing a mask, because that’s all he’s known his entire life.

Sometimes, I think it can be easy to forget what our little ones are going through because of all the change we’re dealing with ourselves. Children are resilient, yes; but almost everything they knew only a few short months ago was turned upside down. Add to that the pressure of navigating school in a whole new way... and it’s no wonder some days are harder than others.

Maybe we should give them a little time and space. Maybe we should be gentler, and steadfast, and honest. Maybe we should pray for our children’s educators, like my sister, and so many others, who are giving it their all despite this different and unrecognizable world we’re living in. And maybe we could show each other some grace.

my new normal

I haven’t posted pictures of myself lately, because well, I haven’t felt like myself.  Besides dealing with the unfortunate side effects of treatments, my hair has thinned out significantly, I don’t wear a stitch of makeup, and I’m generally in PJs or some form of lounge wear (covered in spit up) all day.  When Sophia is home, I try to give her the attention she needs, but she is high energy these days -- and on the bad days, I can’t hide how going up and down the stairs feels like a feat.

But bedtime I like, because after we finish books, Sophia always pleads, "Lay with me," and on the nights that I do, we talk.  I usually ask about her day with Poppy, and she tells me about what she learned and did and ate.  Sometimes she'll bring up memories from one of the many trips we've taken in the past, and other times she'll voice her current fears and worries.

I wasn't expecting the conversation she sprung on me tonight.

"Mommy, I love you just the way you are."

"Thanks baby."

"I don't want you to die.  Are you going to die?"

"Well... I will die someday.  But I hope to live for a long time to be with you."

"Yes, because you need to take care of me."

I don't know why, but hearing those words from her hit me harder than when my oncologist basically told me the same thing at my first visit; that I had a find a way to focus on myself and my health now to be there for my kids in the future.  Maybe it's because at not quite 5 years old, I realize that my daughter has very real fears of me dying -- that perhaps seeing me struggle physically has affected her in ways that I have not been able to shield her from.

Still, I hope that she sees the other side of me, too.  The side that is trying my best to hold it together to keep some semblance of the routine she's used to; the side that pushes through with a resolve and a strength I didn't know I possessed.  If there's one thing that being diagnosed with cancer shows you, it's a reminder that we have one life to live and not to take it for granted, ever.

I know that with time she will probably notice these things, and if not now, then when she is older.  And yes, I hope that I will eventually feel like myself again.  Well, not exactly.  What I do hope is that I will feel like a better me soon.

a different kind of mother's day

Dear Sophia and Eli,

Mother's Day 2020

This Mother's Day is like no other.  Not only because we are in the midst of a pandemic, but because I have been fighting physically -- in a good way -- to ensure I can be there for you in the future.  It has, quite literally, been the fight of my life, and some days I am wracked with guilt that I can't be the mommy to you that I want to be.  There are days that my body is aching pretty much everywhere, and my fingers are so numb that I'm struggling to wash bottles and braid hair, and my knees feel like they are going to buckle -- and on those days I'm terrified of holding you, Eli, and can see the understanding dawn in your eyes, Soph, when I'm drained of energy and can't play with you on the floor (because I can't make it comfortably on to the floor, and if I do, there's no chance of me getting back up).  It hurts, and not just physically.  I so wish things could be different, and that there weren't days that either of you would see and feel me crying, or pulling back and being sensitive about how much hair I've lost, but I tell myself to keep moving because of you.

Sophia, this is our fifth Mother's Day together, and since the day you made me a mom you've kept me on my toes -- driven me, challenged me, given me a lesson or three.  You've taught me about compassion and kindness and grace.  You've grown into a loving, bright, and beautiful little lady and made me so proud of how you take care of our family and share and use "big" words and hold your own in a room full of boys.  I love how you still call me "momma," and climb into bed with me at 3 AM and reach for my hand, that you ask me to lay with you to chat about the day, and how you run back to me with open arms in the mornings for a "huggie."  I love that you always think of Lily and Lucas, and pick flowers for their graves and for me, too, every day.  I love that you comfort me when I'm down and tell me things are going to be okay, that you ask which side of my body hurts so you'll avoid it, that you are incredibly patient and understanding when I'm slower than normal.  Thank you for giving me a pass when I need it and showing me love.  Don't ever change, sweetheart.

Eli, on this first Mother's Day with you we've already been through so much, haven't we?  You are my strong boy, going through chemo with me, helping me overcome fear and finding a way to persevere.  Each day, I look at your perfect face and fingers and toes and thank God that we made it through.  From day one, you have been the sweetest little man.  I love your creaky noises and that you like to gnaw on my face, or that you can find that spot on my chest to snuggle in for a warm nap.  I love when you look at me and smile, or stick your tongue out after I do, or pretend that you're not interested in eating but in the next second you're insatiable.  I love how similar you look to your sister but how different you are as babies.  I love that despite what I'm going through, you've given me another perspective on motherhood, another chance to enjoy this round of firsts again.  I'm thankful for this time we have together in our tiny bubble when the world was changing around us.

Remember this Mother's Day.  Remember it because it was different, and hard, and pivotal.  Remember it because it forced us to change, and pause, and see it from another angle.  And remember that this Mother's Day, and every Mother's Day, I am blessed beyond words to be your momma, and will always fight to be there for you as long as I am able.

Love,
Mommy

chemo #6

Chemo #6 today and my second on Taxol.  After getting through the first round of Taxol and knowing what to expect, I felt a bit more prepared for this treatment.  (Not prepared for what actually happened, but we'll get to that...)

Posing with the #6 sign from my daughter.

These little notes always mean so much!

I normally get bloodwork a few days before treatment, but due to everything going on with COVID-19, I wanted to minimize visits outside of the house of any kind, even to the lab, if possible.  So I called my oncologist's office last week to ask if the bloodwork could be drawn at my office visit prior to treatment and was given the okay as long as I could arrive earlier.

A note about doctor's offices... They are constantly making updates due to the pandemic to keep all of us safe.  I have visits every 2 weeks, and at my last visit there was a physical barrier to direct patients to stand back at registration but this time there was a glass shield enclosing all the registrars and the waiting room was reconfigured for social distancing.  I think about how incredibly busy my oncologist's office was at my first visit when everyone had someone with them and how different it is only a few short months later.

Despite my earlier arrival, my blood wasn't drawn until the end of my visit, so by the time I made it to treatment, the lab hadn't released the results yet.  That meant my nurse had to wait for the green light from my oncologist before my infusion could start.  I already had my cap on and port accessed but we had to wait.

Once treatment started, things progressed pretty quickly.  Like the first time, the Benadryl nearly knocked me out... but I couldn't quite let myself drift off to sleep.  Have you ever felt like you were crawling out of your skin?  That's how it felt about a half hour in.  I stretched my legs and just couldn't get comfortable, like my body was telling me something.  I figured maybe it was time to eat so took out my packed lunch.  After a few bites, I had to stop because it felt like my stomach was burning.  My face felt hot and my eyes started to water.  I actually took a picture of myself to see if I looked flushed and my eyes appeared red.  It was hard to decipher if I was more short of breath under my mask, but I knew something wasn't right.  So I told my nurse I felt weird, and couldn't quite explain it, but she stopped my infusion right away and I saw her dashing around the corner while my eyes were getting heavy...

When I felt alert again, it was like suddenly there were 4-5 people in front of me, all doing different things and talking to me.  Through the fog of my brain I still remember being impressed by the coordination.  I was flushed out and given more Benadryl and Pepcid, and my vitals were monitored.  My heart rate was high but otherwise everything else appeared okay.  It seems I had a mild reaction to the Taxol.  My oncologist was contacted, and once I returned to baseline we had to wait another 30 minutes before restarting.  I think back to this moment now, and how it could have been much scarier but the nurses helped me through.  I'm so grateful for the team of nurses that had assured me they were trained for dealing with instances such as this, and that I actually saw it in action and know that to be the truth.

The rest of treatment was uneventful except that the added time due to all the delays had me wearing the cold cap for close to 7 hours.  That definitely left a mark...

A really long day with the cold cap on. And the mask too...

And by the time I left the infusion center, it had already cleared out for the day.

I saw at least 4 other patients come and go in the time I was there.

After all of that, tired is an understatement.  What a day.

second-time mommy

Dear Eli,

When Sophia was about a year old, your Daddy asked me for my thoughts on when we'd have another baby.  To his surprise and dismay, it spurred on a rush of tears from me and I had trouble verbalizing why.  It wasn't that I didn't want to give your sister a sibling, because I absolutely wanted to; we had always talked about wanting more kids.  It was that I loved every second of motherhood and couldn't imagine losing out on experiencing all of those firsts with her and only her.  I didn't want to miss out on any more time while it was just the three of us.  I guess the simplest way to explain what I was feeling is that... I was unsure how I could possibly learn to share my heart.

Today you are three weeks old, which means we've arrived at your original due date.  I remember when we had scheduled my induction, time seemed to suddenly speed up -- the weeks were flying by and there didn't seem to be enough weekends to get your nursery reorganized and all your little clothes washed and folded away, and the car seat in or the pack and play set up.  And while I had wished for more time then, now that you've been with us I couldn't imagine it any other way.

Today at 3 weeks old!

Even a bit early, you came in to this world at 7 lbs, 0.35 oz, and 20.25 inches long.  We wonder how much bigger you would be today!  You had a full head of thick, dark hair, the feel of it much like your dad's now.  (My OB was trying to describe it while I was pushing you out and encouraged me to 'reach down there and touch his head,' so I actually did and freaked myself out a bit).  The resemblance to your big sister as a baby was uncanny.  There are numerous similarities, but slight differences too.  You have long fingers and "Jana finger toes," which one day you'll understand once you meet your aunt.

Your sister vs. you... twinning!

"Hi, I'm new here. Are you my Mommy?"

Aunt Jana finger toes

You were born during an extremely interesting time.  We are in the midst of a pandemic, where the safest thing for us to do is to socially distance ourselves to stay healthy.  Timing-wise, we had planned to be home-bound anyway, but the most difficult part is that our families are still unable to meet you.  Fortunately for technology, you made your debut via FaceTime and Zoom to extended family on your Yeh-Yeh's birthday, and even through our kitchen window with your daddy's parents, but we're hoping that one day soon that your grandparents and great-Nan and aunts and uncles and many others that love you will be able to see and feel you in person.

Zoom with extended family

Happy 69th birthday, Yeh-Yeh! (on 3/31/20)

Your sister, though, who is around... She is absolutely in awe of you.  The hospital wasn't allowing visitors, so to our disappointment we had to wait until after discharge to introduce her to you and she was crazy excited to catch her first glimpse of your face.  Every day she diligently washes her hands (singing "Happy Birthday" twice) as soon as she comes home so that she can hold you, and some days she refuses to let you go.  We've included you in her bedtime routine so that she can feed you or have you at her side during storytime.  Last night, she stayed up until 9:30 because she was waiting for me to read to her, so I convinced her to join me in the nursery where I fed you and read to her as she flipped the pages for me.  Learning to multitask!

Singing "Rock-A-Bye Baby" (and other songs she makes up)

Right now you are napping (sort of) in between meals, so I thought I'd use this precious little time I have to tell you about yourself and these first few weeks.  You are by no means a quiet baby, which is why I said you were "sort of" napping.  Most times you are making some kind of noise -- a creak (to which Sophia has affectionately nicknamed you "the creaky door"), a grunt, a gurgle, a sneeze, a cough, a short cry -- so I check in on you and your eyes are closed or fluttering.  When I burp you, you're humming along, so with each pat there's an alternate sound and it makes me laugh.  You're active in your sleep too.  Sometimes you've wiggled almost perpendicular from where I had laid you down, your legs up in the air and your tiny fists at your side.  You seem to be able to nearly roll to one side already.  Like your sister, you manage to always kick off a sock or flail away a mitten or wiggle off your hat.  We seem to always flop your ears back whenever we put your hats on, and have determined that the shape of your ears are a mixture of both your dad's and mine.  Diaper changes usually involve a small foot right into your own mess and subsequent crying, which at times can escalate until it appears that your lips and cheeks are vibrating, while I try to minimize the poo splattering and potential fountain of pee on other things.  (Yes, I've been reduced to using those words).

"When my mom thinks everything is cute... including my hiccups."

Yet in your quiet moments, you are the sweetest boy.  You can lie down awake and look at the world around you, sometimes with your noisy commentary.  Your hiccups come on as frequently as they did while you were in my belly, and somehow even those are adorable.  I love how you fit perfectly in that small space on my shoulder, cuddled up in a ball with me rubbing your back.  That was one of my favorite memories with Sophia, and time had passed too quickly before she had grown too big for that spot.  But for now, I don't even mind that it's right where my port is, because I know to cherish this moment that I can snuggle with you there.  Sometimes when I touch your cheek, you do this smirky thing in your sleep.  Other times you open your eyes and look at me, and I tell you I'm your momma.  The first time you did that, it was almost as if you recognized me and were asking, "Are you my mommy, the one who was talking to me all that time?  The one telling me to stay with you, through it all?"  Yes, it was me, and I'm so glad you did.  Yesterday I told you I loved you and you smiled in response, and when I repeated it and you smiled again, my heart melted.  I love every baby smell, and sneak whiffs of your hair, whether freshly washed or matted under your cap, and don't even mind your milk breath when we're doing tummy time, or even more still when I know you need a diaper change.

Nighttime is your party time.  Your sister would hardly nap during the day but you're the opposite.  Usually around 10-11 pm, you're wide awake and ready for a feast.  And boy, can you eat!  We were able to obtain generously donated breastmilk from a couple of friends, and you are mowing through it.  Whenever you're really hungry and becoming impatient, your mouth flaps open like a baby bird and you start sucking on your hands, so we do this funny bit where I'm trying to get the nipple in your mouth before you snap it shut again while prying your hands away.  Today you actually grabbed on to the bottle and could essentially feed yourself.  Do you even need me anymore?

"Hey ladies!"

"I'm so hungry I will feed on my hands. Tasty."

"I got this."

I'm enjoying this time with you.  With Soph, I was constantly vacillating somewhere between joy and terror... the goal was to keep her alive, of course, and I obviously didn't want to fail at that.  This second time around, I'm a bit more confident since I've decided I kind of know what I'm doing.  Beyond that and my treatments, fighting through the fatigue (of having a newborn or chemo, who knows which), late night/early morning feedings, napping when you nap or prepping for your next feeding... the blur and humdrum routine of it, the peace and simple joys of motherhood again, of you needing me for a little while longer... I'm happy, I'm content, and I'm savoring it all.

And I realize now, after all those years since that night when I thought I couldn't share my heart -- I was wrong and silly to believe that.  My heart is wide open again, and you, my sweet, darling, amazing, miracle son, have a huge place in it.

Love,
Mommy

the final countdown

It's a very odd time to be this pregnant during a pandemic.  On the one hand, I'm trying to stay grounded... I work for a health system after all, and have always practiced hand hygiene and been a germaphobe with our four-year-old.  On the other, I'm being induced in 5 days (yes, 5!) and restarting chemo 5 days after that (yes, 5).  So feeling a bit vulnerable?  Definitely.

But if there's anything I've learned over the years, and especially over the last few months, fear will get you nowhere.  I could have been paralyzed by it -- when I first found the lump in my breast, when I had the biopsy, when I was given a cancer diagnosis, when I underwent surgery.  I could have been overcome with it -- when I started treatments, when my hair started falling out, when I knew I had to be strong for my baby.  I could have let it slow me down, but instead, I let it drive me as it normally does -- to do the same things I've always done, to continue moving, to keep our little girl happy and unaware and maintain a semblance of a routine.

So tonight we did what we'd normally do and braved the store for some last-minute items before baby.  I'll have to admit, it was the weirdest Target run ever (and at the same time a bit fascinating, when you're trying to figure out why certain items are being stockpiled more than others).

I legitimately needed baby wipes. This is what was left.

Just being there and seeing those empty shelves felt a bit like panic, and I didn't want to be there longer than I needed to.  But I'm happy to report there was plenty of ice cream for this momma and Paw Patrol sneakers in the right size (score!) for a delighted soon-to-be big sister, so at least we managed to pick up some of the items we actually intended to get.  I'm convinced it's those little things that will keep us sane...

Last MFM visit at 36w2d! (and last MFM visit ever).
The final countdown begins!