Living Life In Incomplete Sentences

ANC graph

Today Josh is six days post transplant. Last night he was up sick all night. He did well this morning and then had extreme abdominal cramping this afternoon. His white blood cell count was 24.  Josh and his dad drew a graph this evening of the progression of Josh’s ANC levels. He is pretty close to rock bottom, but the good news is from down there, there is no where to go but up. We hope his blood count rises quickly.

For Josh, there is the expected nausea, vomiting, diarrhea that he knew came with intense chemo therapy, but for him the worst part has been the loss of focus. He literally is trapped in a room and cannot focus on anything for more than five minutes. He gets a lot accomplished in five minute bursts, but he constantly must change positions and switch activities. Josh, who could win medals for watching stupid movies over and over for hours on end, has not sat through a single movie while trapped in a room on the transplant floor of PSL.

Wake-up. Sick. Get Medicine. Color. Pace. Draw Maze for kids. Dot-to-Dot. Sports Center. Write card to kids. Olympics. Nap. Walk. Sit. Eat. Play Yahtzee. Draw. Walk. Play Cribbage. Pace. Maze. Dot-to-Dot. Eat Soup. Walk. Rest.

Despite his inability to focus he has forced himself to walk 2 miles every day and he created this beautiful platypus maze for our middle daughter.

Palatypus maze

Nine days into the hospital stay, it still feels like we are living in an alternative universe. Before SCT (stem cell transplant), I worried about what after school activities I should sign my kids up for, I wasn’t cognizant of this reality. Truth, there are always people suffering and struggling on this planet. Truth you never know anyone’s story. These truths along with many others are burned into me. It still feels more science fiction than reality, an absolute surreal shift, plucked out of our privileged lives and placed on a foreign planet. We are stuck here until Josh’s ANC reaches 500, for at least another week.

Josh is working harder than he has ever worked not to get a promotion or an award, but to get back home. He is fighting for everything that I (we) have always taken for granted. When he gets home, it will mean everything.

This is painful. It sucks. I cry. I smile. I cry again. I smile. I cry. I love him. Love gives us super powers. I discovered this after birthing children, I’m seeing it again, we are super-human, not alien, but loving humans have heroic strength, which means when pushed we all have super powers.

THANKS FOR THE PRAYERS, VIBES, AND LOVE, PLEASE KEEP THEM COMING.

We keep on trucking, hopefully, out of the transplant ward soon.

XO

Justine

 

 

 

Post Stem Cell Transplant Day +3

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On August 2nd, Josh received six bags of new stem cells. The stem cells arrived to his room in this frozen canister and were injected through his central line. The stem cells are mixed with a chemical that smells like creamed corn. The smell is excreted through the breath and the skin. It is pungent and quite awful. We will never eat creamed corn again. The day of the stem cell transplant went smoothly, there can be side effects, but Josh felt sufficiently awful that he was drugged up and knocked out throughout most of the procedure. Josh felt miserable and although it was his new “birthday”it sucked.

On August 3rd, Josh’s neutrophils bumped up to 3,400. On August 4th, his neutrophils were 1,400, they will soon drop to 0. Neutrophils are a type of white blood cell. There are many types of white blood cells, whose purpose is to fight infections in our bodies. I have read that neutrophils are the most important type of white blood cell. A normal healthy person has a white blood cell count between 2,500-6,000.  When the neutrophil count drops below 1,000, it is called neutropenia, which means you are at serious risk of infection. In the next few days Josh’s neutrophils will drop to 0. He will remain in the hospital until his neutrophils rise between 500-1,000. Neutrophils correlate with energy, well-being, and general health. He will be bottoming out soon. It already sucks, but will get worse.

As his neutrophils drop and his symptoms increase it is hard for him to focus on activities for any length of time, which is frustrating for him. He spent three days finishing a maze for our oldest, but was determined to finish it.

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The past three mornings Josh awakes about 4am and vomits for a couple hours, the nurses and doctors try to get his symptoms under control through anti-nausea medication. He then is usually knocked out by the medicine and sleeps a couple of hours. We are hoping the strict regimen of multiple anti-nausea medicines throughout the day will keep his vomiting at bay. He has walked two miles every day since he has been in the hospital, which is pretty remarkable given the abdominal pain, nausea, and vomiting. Also, I haven’t witnessed much vomiting, it feels as if he holds it together while I’m around to not upset me and then vomits immediately after I leave or before I arrive. Bonnie, Jerry, and I rotate shifts. Typically I am there all day until I pick the girls up from camp and then come home have dinner with the kids, put them to bed, and return to the hospital for a couple of hours. Next week I will be there 9-5pm, and I will sleep there over the weekend.

It is hard to keep spirits high when you feel worse than you ever felt and you know the worst is yet to come. But Josh is convinced he will keep walking, keep showering, keep drawing mazes, playing games, and eventually his blood counts will rebound. If he has an ounce of energy he sits in a chair rather than lying in bed.

Josh is the best. He sends home gifts and cards to the kids every day.

Words to describe our past couple of weeks and then I’m going to sleep.

Stranger Things (great Netflix show – Xfiles meets Stand By Me), Yahtzee, step counts, laps through the halls, nurses, a koala maze, FaceTime, dot-to-dot, bananagrams, soup, hospital food, FRIENDS, kindness, hope, heart break, tears, hospital bed cuddles, zombie eye (hemoraged eye from vomiting), rock climbing camp, adventure camp, rock star nanny, visits from friends from across the country, family, best friend who sat in the chair with my girls as they fell asleep, stem cells, sci-fi, crazy, surreal, best friends, fluorescent lights, cream of corn, LOVE, LOVE, LOVE, LOVE, LOVE, LOVE, LOVE, LOVE, LOVE, LOVE, LOVE, LOVE, LOVE, LOVE, LOVE, RESILIENCE.

Our people have cradled us in love and I feel loved by people from across the country and different ages and stages. A strange term, but the image of me cradled literally popped in my head as I drove to the hospital this morning. We are such homebodies, I worried if we had people other than each other and we have people, oodles of them. Who knew two hermits had so many friends. I love you all.

I can’t wait for my family to be under the same roof. It sucks for him because he feels awful, but I feel happy if he is feeling okay and I can curl up next to him in his hospital bed watching the iPad and gossiping about life even if it smells like nasty corn, I’m in a gown, and can’t breathe fresh air. For me home is where Josh is, he is my home and I’m happy when I’m with him, even in solitary confinement. I’m so lucky to have a husband that has the power to make me happy in prison. The kids are my home too, which leaves me split in two. Currently, our home is a bit broken, my heart is a bit broken (all of our hearts are) since we are split in multiple places and the kids and Josh can’t be under the same roof.

The babies and I lit candles tonight and asked that Josh feel better and come home soon. We miss him so much in our physical home, but I will see him first thing in the morning.

THANKS FOR THE LOVE, I AM GRATEFUL. XO

 

 

Stem Cell Update

In life and medicine Josh likes to use analogies. He can find an analogy for anything. Typically sports analogies to describe a patient’s illness or treatment, maybe an analogy to express how corporate medicine needs to change. When he tells me these analogies, I might roll my eyes, I don’t always get them. Many people do and they endear him to patients, sports lovers, and colleagues. But the first night we checked into the hospital, Josh was perplexed,”Babe, I can’t even come up with a good analogy for this, I mean solitary confinement, but that doesn’t even cover it.”

Driving to the hospital, I came up with an analogy. A little dramatic, but not too far off the ball. After two days of chemo and steroids, all I could think of were the torture scenes from the TV show 24, where Jack Bauer (played by Keifer Sutherland) is a C.I.A operative. He is the subject and perpetrator of numerous torture scenes throughout the shows run. In these scenes the tortured individual is locked in a dark room. Josh has a big window with lots of light, but the differences end there. The tortured loses track of day and night, the month, day, it is lost immediately. He is hooked up to machines and tortured until the brink of death and then slowly nursed back to relative health only to be hooked up to the machine again and brought down once more. If he breaks out of his room, then he is confronted with a maze of hallways and sterile artificial light. People approach him in yellow gowns, masks, and blue gloves. It is foreign, time, place, routine and life as you know it disappear.

The above analogy is how I feel watching Josh battle through this process. For the past two days Josh was fed a mix of toxic chemo and steroids via the central line in his chest. The steroids are supposed to counter the awful side effects of chemo. Instead the steroids caused extreme abdominal discomfort, the nurses give him drugs to ameliorate the discomfort and those drugs create more side effects. A constant battle of remedying side effects with drugs that create more side effects.

Josh is brave and fighting through this madness well, however, it is disheartening to know the worst is yet to come. He Facetimes with the kids and they love to see his smiling face. Each day he walked a mile around the hallways. He amazes me daily with his fight, charm, and bravery.

I hesitated sharing the torture analogy because other patients may read this who are about to embark on their own stem cell journey. I don’t want to scare people because Josh will get through it and so will many others. It is amazing what we, humans, are capable of. However, Josh has been continuously frustrated by doctors and nurses who glaze over the side effects of painful procedures. For example, the bone marrow biopsy, “it’s not that bad, you don’t need sedation”, followed by extreme pain as they drill through his hip. The central line placement, “you will just feel mild discomfort” – really a plastic tube is being inserted throughout his chest… Or, we just harvested 40 million stem cells from your body,  but”no biggie, shouldn’t be a problem.” Optimism is great, but if you gloss over side effects, then patients start worrying that something is wrong with them. Why am I in pain, when I should only be feeling mild discomfort? Probably because the doctor who told you there would be mild discomfort has never had a central line placed into their chest. You never entirely know anything until it happens to you.

Josh is an amazing doctor. He is an excellent diagnostician whose patients adore him. He is borderline brilliant with bedside manner, which is hard combination to find. I can only imagine the excellence he will achieve as a physician after having the experience of being a patient in such a traumatic and profound way. He laughed at himself counseling his patients regarding their children prior to having his own children. Laughable, text books cannot prepare you for a colicky baby or the fear of an infant spiking a high fever. The human element is not conveyed in a text book. Similarly you cannot fully understand suffering from a chronic illness until you suffer a chronic illness.

Josh receives his new stem cells tomorrow morning. His new “rebirthday” will be August 2nd, the day before my grandfather Quigg Newton’s birthday. Quigg was a leader, life long learner, loyal, and dedicated to providing a good life for his family. Josh is all those things and so much more. Josh adored Quigg (and I think the feeling was mutual).

Please keep the prayers/energy/jedi force coming that these stem cells bring a future of health and happiness for Josh and our family.

Thank you for all the love and support.

Love,

Justine

P.S.

I’m more of a sharer than Josh, so this blog may be “super fajitas” for him. I like to document this journey because I want friends, family, the world to know – the rockstar warrior superstar that my husband is. I am immensely proud of him.

AL AMYLOIDOSIS SUCKS

BACKGROUND:

For those who do not know, my husband Josh was diagnosed with AL Amyloidosis in April 2016. AL Amyloidosis is a rare blood disease where misfolding plasma cells in the bone marrow produce light chains in the blood called amyloid that attach to organs and cause tissue damage, (by no means an accurate description). There are less than 4,000 new diagnosed cases of Amyloidosis in the United States each year, which makes this an extremely rare disease. Amyloidosis is most closely related to Multiple Myeloma, which is a rare form of leukemia. As such, many treatments for the two diseases are the same. Most people diagnosed with Amyloidosis are in their 60s, but Josh unluckily discovered he had Amyloidosis at 37-years-old.

As a physician, Josh noticed swelling in his ankles tested himself to make sure he didn’t have a blood clot then tested his urine and blood and realized he had nephrotic syndrome. He went to a nephrologist who then ordered a kidney biopsy, which showed Amyloidosis. He then underwent a bone marrow biopsy, which also came back positive for Amyloidosis.

When Josh was diagnosed with Amyloidosis, I didn’t know what it was and immediately googled it. Don’t do this, a google search reports that patients diagnosed with Amyloidosis have 1-2 years to live. SHOCK! WHAT? HOW? WHY? I CAN’T LOSE JOSH! I cried for two weeks straight. I couldn’t wrap my head around losing Josh, I still can’t, and luckily two doctors assured me that I don’t have to. Two doctors assured me that Josh will live a long life with this disease. He will be around to see his children get married and there may be a cure in his lifetime.

“Why did young healthy Josh get Amyloidosis?” I asked Dr. Smith and myself a thousand times. “Is it just like randomly getting struck with cancer without a family history?”

Dr. Smith responded, “One out of three people will get cancer in their lifetime.”I don’t know the exact statistical chance to get Amyloidosis at 37, but pretty much Josh won the rare disease lottery. Although this is all bad news, the good news is with respect to this disease Josh also won the lottery, right now it is only affecting his kidneys (not the heart, liver, muscles, or nerves), which is amazing. He has little kidney damage and he is in amazing shape.

Due to his relative health, Josh opted for the most aggressive form of treatment to achieve long term remission and will be having a stem cell transplant. A stem cell transplant is a bone marrow transplant, except in his case they will be using his own stem cells. July 25th and July 26th doctors collected close to twenty million of Josh’s stem cells, which were then frozen at -130 celsius. He will be admitted to the hospital on July 30th and for two days will be blasted with high dose chemotherapy (melphalan) in order to wipe out his entire blood system. He will rest a day, and then be reinjected with his newly cleansed stem cells. The day of transplant is literally deemed his rebirthday. Every immunity he has acquired in the last 38 years will be completely wiped clean. He literally will be put on an infant baby’s vaccination schedule once his body begins to recover.

Josh will be in the hospital for close to three weeks, until he is deemed safe to reenter the world. He will be able to see me and adult friends and family, but the children are not allowed to visit him because of the risk of infection. He is heartbroken to be separated from the kids. He will be out of work for 2-3 months, which is sad because he just started a new job that he loves. We are focusing on the positive, looking at three months as a blip, like maternity leave, which women take all the time. (FYI, paid medical leave readers is not only for new mothers).

Originally, he was supposed to be admitted to the hospital on July 18th, but because of a lab mishap with Josh’s stem cells the transplant was delayed two weeks. We were upset about the delay and devastated because Josh was put through a brutal collection of stem cells twice, 40 million stem cells were taken within a two week period. The night of his second collection, I thought he might need a blood transfusion, he was sick, fatigued, cold (shut off the air conditioning), but a day of rest and he rebounded. Josh is a champ.

Due to the upsetting delay, we had more day dates than we have had since having children seven years ago. One of Josh’s best friends visited from Pittsburgh and spent the weekend with him. On Monday and Tuesday Josh gave 20 million stem cells, Wednesday we had a relaxing Boulder date and went shopping on Pearl Street, Thursday we played 18 holes of golf, Friday we went for a long hike near Chatauqua, and Saturday Josh checks in the hospital for his first dose of chemo therapy.

Friday night we had a Star Wars pajama party with the kids where they stayed up late, ate Chinese Food, S’mores, ice cream, candy, and watched movies. (Thank you, Sarah for the delicious ice cream). Josh’s last night of fun with the kiddos for a few weeks, he is the best dad.

****

Today we checked into the hospital. It was surreal, driving to the hospital on a sunny day, young families shopping at the farmer’s market and riding their bikes on the bike path while  Josh will be stuck inside the hospital for one month. We checked in thinking we could get a cart and together go back to the car to get his things. Nope, once Josh entered his room, he couldn’t leave the hallway. I took the cart back to the car, called my twin, and cried. I can’t believe Josh will be in this small room for almost a month. I can’t believe he has to fight this shitty disease. I can’t believe small tragedies go on around us every day as the world keeps circling and the sun keeps shining.

Yesterday, I was brainstorming what to write as an update. We hiked miles with our dog, our shoulders burned by the sun, our lungs expanding to get us up the steep hills we have climbed so many times. I felt blessed. We are blessed in love, family, and friendships.

Today as we left our home, my five-year-old sobbing and her two-year-old brother imitating her screams. I felt heartbroken. This is officially the hardest day of my life thus far. Healthy Josh driving our car to the hospital to be blasted with toxic chemo and taken to the brink of death to be brought back to life with his own stem cells. It feels torturous. It feels unfair.

I wish, pray, hope for remission. I’m wishing that Josh can come home soon. I hope he will breeze through chemo and this seemingly endless stay in an artificially lit sterile room. I pray he stays sane. I pray my children feel loved and secure. I pray for a cure. It seems desperate and pitiful, but I pray and hope that everyone that has ever known or cared about me, Josh, his family, or my children, send us prayers. I want to believe in the power of prayer, healing thoughts, and love. Josh is private, but I want to rally all the love I can muster and direct it at him. Family, friends, world, we  need some magic sent in our direction.

The first round of chemo starts at 4pm, until then we will be playing Yahtzee, reading, and walking the halls, imagining ourselves in a claustrophobic train car heading through Europe to eat pasta and drink wine in colorful Positano, Italy.

****

For the next few months, I will keep family and friends updated on the blog. We appreciate all the friends and family who have rallied around us during this tough time – meals, ice cream, wine, texts, phone calls, emails, cards, have all been greatly appreciated. It is always nice to know people are thinking of us, so never second guess texting, calling, or emailing. We love it. Thank you, thank you, thank you…

 

 

 

BYE BYE LYMPH NODE

SolotSummer2016-8835“We can’t shut the door to cancer.”The allergist stated as my two-year-old bounded around the room.

“We got blood tests last year because I was worried about his lymph nodes and the tests were normal.” I responded. “The doctor said it wasn’t cancer.” I brought my baby boy to the allergist, thinking he would be subject to an uncomfortable scratch test and that we may  need to eliminate dairy from his diet, but instead CANCER.

“The fact his blood tests were normal a year ago is great, but we can’t rule out cancer. I’m going to order some blood tests this morning and I think you need to see a Hem-Onc doctor.”

“What is a hem-onc doctor?” I asked.

“A pediatric oncologist.”

***

Fast-forward three months later, blood tests, ultrasounds, chest x-rays, and echoes, the specialists agreed that they should biopsy the lymph node on his neck in order to rule out lymphoma.

On Monday, June 20th, my wild two-year-old boy had surgery. He screamed as I held him down and the anesthesiologist put a gas mask over his face. His thrashing stopped and he drifted off to sleep as tears ran down my cheeks. The five minute biopsy took more than an hour and the ENT doctor removed his entire lymph node. The node was larger than they expected and he decided to remove it if there was any chance of a malignancy. The ENT said it looked like a normal node, but he wouldn’t have the results until Friday.

The morning of June 21, my baby woke up in his crib whimpering in pain. My head spun, I didn’t know a biopsy meant possibly removing the node? The doctor must have seen something in the node to compel him to remove it? Did my baby have cancer? 

I panicked silently as I held my sweet boy and we watched Mater Tales on Netflix a thousand times. I called his pediatrician, his oncologist, and the ENT to see if  the removal of his giant lymph node was standard procedure. I wept while my baby dozed on my chest.”I have a cut on my neck,”my baby cried. “Who did this to me?”he whimpered throughout the day. Finally, that evening the oncologist called and told me that the pathology came back normal and healthy.

Relief swept through me. My baby is HEALTHY!

However, I am intimately aware that the conversation with my son’s Oncologist could have gone the opposite direction. I know that life can change and does change in an instant. There are many families dealing with devastating diagnosis and loss, where the unimaginable becomes their instantaneous reality. My heart and prayers go out to these families.

No one is immune to sickness or loss. We can do all we can to keep our families safe, but there are many things we cannot control, sometimes lightning strikes and our journey changes. It sucks, but we change course.

***

I debated sharing this story.

I am sharing this because my baby is brave and resilient.

I am sharing this because no one knows what strangers are going through.

I am sharing this to remember this moment.

I am sharing this because I am incredibly lucky in love and life, despite the pot holes my family has hit recently.

I am sharing this because anyone can be hit with a pediatric cancer diagnosis, and pediatric cancers are surprisingly underfunded.

***

A big thank you to Julie Harris who captured this photo, which includes my boy’s giant and now missing lymph node.

Also, a big thank you to our pediatric oncologist Dr. Julie Zimbelman, who got all my baby’s tests done quicker than expected and called me with results before they were even sent to her office. If you are in the unfortunate situation of needing a pediatric hem onc doctor in Denver, she is amazing.

 

 

 

 

 

 

 

 

TWO – My Baby Volcano!!!!!

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My baby boy is explosive emotion, wild energy, and ear piercing noise. Joyful belly laughter that elicits immediate smiles and torturous whining and screams that have your sisters clasping their ears and weeping because you just won’t stop crying. During the past two years, we have suffered hearing loss because you are the loudest baby yet, maybe the loudest baby ever.

I thought third babies were supposed to go with the flow, be easy breezy, but you rocked our boat completely. As I said, you are loud, it is impossible to ignore our baby. You erupt in fury if you don’t like something and your moods derail the most carefully prepared plans.

You make your third time mama feel like a first timer.

Daddy calls you our Sour Patch Kid, sour and then irresistibly sweet. You revolt and then ask for snuggles. When your sisters cry, you earnestly ask them, “Are you okay?” As you pat their backs and stroke their faces. Then the next minute you are throwing matchbox cars at their heads with tremendous force, grabbing their hair, and hitting them with all your might.

My three children are like magnets, you can’t keep your hands off one another, but then the electro magnetism switches and you repel each other with equal ferocity. Then minutes later you are inseparable and stuck together again. Your biggest sister dotes on you constantly, carries you around the house, and usually allows you to join in her play. Middle sister loves you one second and clocks you in the head the next. The intensity of the love/hate relationship between you and your middle sister baffles me. Your shared sibling bonds are stronger than I ever expected.

Currently, Disney Cars is your passion and you talk about it constantly, though you don’t have the patience to sit through the movie. You love Lightning McQueen, cars with smiley faces are the best, and you carry them wherever you go and sleep with them in your crib.

Much to your dad’s delight, starting at 18 months (maybe younger), you enjoyed shooting hoops in the basement. You love basketballs, throwing balls, toys, anything. You have a mini golf club and endlessly hit golf balls around the yard. You do this all left handed, which I’m learning may be the athletic coup de grace. We beam at your hand eye coordination and laugh at ourselves for thinking at two that each of our children were child prodigies. We are as amazed by you as we were by our first two babies, watching a baby grow and acquire new skills never gets olds. You are all unique little people.

Although we may think you are a baby genius, you learned to walk later than your sisters and managed to bump your head into the coffee table several times a day for several months straight. You love play doh and especially love to eat it. You laugh as you stuff it in your mouth because you suckered mom and dad into giving you play doh, yet again.

Getting out of the house has become nearly impossible, for example, one day as I filled water bottles for school, you made a beeline through the dog door and ran straight for the dog poop in the yard (for some reason you love touching dog poop). “Icky, mama,” you shouted and picked it up and smeared it all over your t-shirt, which led to tardy slips for your sisters and me carrying a toddler in a diaper into each of their schools. As I signed tardy slips and politely conversed with acquaintances, I wondered why we still smelled like poop, left the school, and realized you smeared me as well. This is how we roll, and it’s not always pretty.

The girls had bunk beds until you started scrambling up the ladder and leaning over the guardrail in the mornings as I brushed their hair before school. “Mama, watch me,” you shouted with glee as you leaned over the side. Then one day, you jumped off. We detached the beds to make our morning routine safer.

You are fast and give me heart palpitations. One night as I cooked dinner, you dashed out the kitchen, jumped through the dog door, sprinted around the yard, and attempted to climb the fence into our front yard. “I want to see G.G.’s car,” you said, a smile stretched across your face.

Speaking of G.G., another favorite is your grandmas. You love your grandmothers. If they are with us, you want them to constantly carry you. You talk about them and their cars constantly (because grandmas and cars may be the best combination ever). On Thanksgiving, everybody went around the table and said what we were thankful for and when we got to you we didn’t think you understood, but you stated clearly, “I’m thankful for my grandmas.” As a first time mother, I would have been insanely jealous if you preferred someone other than me, but this time around I appreciate their extra arms and your special relationship with them.

“How are you today?” Is your constant refrain when you see someone new and then you introduce yourself by your first and last name and say that you live in Colorado. “I’ll see you next Thursday,” you tell your teachers. You speak in full sentences and articulate thoughts way beyond your two-years (again, our baby genius).

When your sister played Kion, the elephant, in her school performance of the Lion King, you sat in the audience, shouting her name when she came on stage and then screaming Hakuna Matata throughout the other scenes. Almost immediately, Nana escorted you out of the auditorium.

You had the stomach flu the night before your 2nd birthday. You threw up and lay in my arms, tearfully asking me to make you better. Your family party was cancelled, the freezer broke, and your ice cream cake melted. A birthday two days post Christmas confused you, “I want Chanukah to come to my party,” you told me. When we gave you presents, you thought it might still be Christmas and handed them out to your sisters. “It’s not Christmas,” we told you, “It’s your birthday!” My Christmas baby will wait another year to have a birthday party, but your sisters want to make the next one a big birthday party (since you missed this one) and teach you what birthdays are all about. Christmas baby, birthdays are your own special day. You deserve a special day.

You are more than a handful. You are a mini volcano of love, precociousness, sunshine, rage, fire, energy, earsplitting headaches, tears of happiness, tears of frustration, a toddler jokester, a mini athlete, social charisma, mommy’s boy, daddy’s boy, your grandparents’ baby, and your sisters’ favorite/least favorite little person. You make us happy hermits who can’t leave the house for fear of the most intense and persistent little tantrums. At times we brave it and leave our house and then realize you are supremely charming and do better in public than home. After a successful experience we attempt to leave again, only to suffer an explosion and swear we will never ever leave the safety of our home. You have made me seriously consider buying a toddler leash.

We love you and thank you for making our lives colorfully chaotic and never dull.

Sorry for the delayed birthday note, as you know, things have been pretty busy.

We love you. Happy 2nd Birthday Baby!

SHE IS FOUR-YEARS-OLD

Photo credit - Julie Harris photography

Photo credit – Julie Harris photography

Your hair is still blonde, framing your round face and dark brown eyes. Your round belly peeks out of shirts that are a little too small. Shirts that you still love and I hate to pack away. Shirts that your sister wore three years ago and are now stained pink from years of afternoon watermelon and popsicles.

You are a fish. In swim lessons, you swim across the pool, flipping to your back to catch a breath and then instantly flip to your stomach to finish the traverse. You reach the other side of the pool and you look for me with a giant smile. You wave. You shine so brightly, my eyes sometimes fill with tears watching you.

Every night around 12am, you walk to my room and climb in bed beside me. Unlike your sister, who I carried back to her room, middle daughter, you experience the luxury of my exhaustion. I pull you in bed and we snuggle. Lately, I’ve pulled you in bed and in my exhausted haze, I’ve thought you were your big sister. You are getting so big. People often ask me if you two are twins.

You are an expert cuddler. You snuggle next to me on the couch or bed, and gently pinch the skin on my arm, my cheeks, and my belly. Sometimes you pinch a little too hard, but mostly you give gentle squeezes. “I like to squeeze your squishy parts,” you murmur. Pure love, you make me almost happy to have extra parts.

You were the easiest of my three babies, you were not a screamer, and slept better than both your siblings. Today if I had to put money on who would be the most likely to sleep past 6:30am, it would be you.

My partner in crime, my little helper, we run errands together, you help me do laundry and clean the counters. A homebody, you are happy to stay home and hang out.

When I pick you up from preschool, you give me the detailed run down of every minute of your morning, including who sat with you, played with you, and what everybody said.

You are so proud of your family. When I pick you up from school, you lead your baby brother over to your friends and demand, “LOOK AT MY BABY,” with the biggest smile on your face. On the rare occasion that your big sister was home from school and came to pick you up, you were on cloud nine. “THIS IS MY BIG SISTER,” you told everyone.

Your sister is your best friend. You share a room, a bunk bed, and toys. Some days you choose to match and wear identical clothes. As your brother gets older, you play with him too. You and the baby are magnets pulled together by an invisible force. To my irritation, you cannot keep your hands off of each other. The minute he finds a toy, you steal it and run from him at lightning speed. You silently pinch him behind my back. You constantly push his buttons (and mine too). You make him scream constantly, but the minute you disappear to another room he searches for you.

“Sister, where are you?” he calls in his 18 month-old garbled speech? “Where did sister go?” he asks putting his hands in the air.

He will be tough because he has you.

You love Star Wars and Scooby Doo. When your baby brother was born, I relaxed a little in terms of appropriate television viewing. As long as your Dad kept you and your sister entertained, I was happy. Your Dad let you watch Star Wars. You and your sister are obsessed. For Christmas, you got a Star Wars lunch box and backpack. Much to my embarrassment, you told everyone in preschool (including your friends parents) that you love Star Wars and watched every single one of them. Initially, you loved “Luke,” (because he is handsome?!?!?) but now you prefer the dark side.

Parents approach me, “Wow, she watched Star Wars?”

“I like the Empire Strikes Back,” you announce unabashedly.

“I didn’t know they were old enough,” they state.

“Nope, they aren’t, it’s completely inappropriate for three-year-olds,” I admit embarrassed. “I have lost all control.”

Although initially you may act shy, once you feel comfortable you give everyone the constant run down of everything that is going on. My parents used to tell me that they called me the “Family Narrator” because I would describe everything that everyone did at all times. You are our family narrator. You are good company. I never feel lonely or bored when I’m with you.

You love playing with boys. This year you were a little boy obsessed, which is weird because how could a three-year-old possibly be boy crazy, but you are. You came home from school and would tell me, “Mom, I like playing with the Bad Boys.” When we dropped your sister off at the kindergarten “Kiss & Go,” you always wanted Mr. Stephen to come to the door and grab your sister. You even sang songs about him, much to your sister’s embarrassment. You will be trouble in middle school and high school.

Although an easy baby, at times you were an impossible three-year-old. You are pure charm and naughtiness. You haven’t napped since you were two, but I enforce quiet time while your brother naps. You stay up in your room while I work on my computer. Quiet time is never quiet. You sneakily steal shampoo from the bathroom and wash the Barbies’ hair on the carpet in your bedroom, you pushed toys and stuffed animals down the HVAC vents in your room, and you colored elaborate pictures on the carpet with markers. You make my blood boil, but charm is your super power. You always magically float back into my good graces.

You may be one of the most charming people I’ve ever met. You make everyone feel special with your smiles and whispered words of love. You dole them freely to all those you love.

On the flip side, you are fierce. If something upsets you, you roar mightily, stomp your feet, throw things in rage, and slam doors repeatedly to make your point.

The other day I met you at camp to rock climb. Before leaving for camp that day, you told me you were too scared to climb. When I got there you climbed one side of the wall. You maybe made it a couple of footholds off the ground. Each time you climbed, you got a little higher. You attempted to climb each side of the wall, and one time you may have gotten half way up. You kept trying and getting a little higher. It was hot, 90 degrees, and the wall was set up on hot pavement. Most of the other kids stopped and sat in the shade, but red faced you kept climbing.

The instructor hooked your harness to another side of the wall. You smiled.

“You know what,” she said. “When you keep trying something even though it’s hard, and you don’t give up, that means, you have a giant heart.” I smiled at the truth of the statement.

You are pure heart.

***

This birthday post comes two weeks late. I’ve debated posting it because I began having mixed feeling about posting details about my kids. Now my oldest values her privacy, so I will not publicly post my birthday letter to her this year. I decided posting this one because:

(1) friends and family appreciate a glimpse of the little personalities emerging in our family,

(2) I adore these kiddos and want to remember every single moment.

(3) This is my public love letter to my little girl, I’ve never received a public letter of adoration, but I bet I would like it, and

(4) I love my family so much, I want to shout it from the roof tops and tell the world just how special they are,

For these reasons and more, I’m writing the memories down.