Letters to Stella Li

Mommy is Back

Sweet sweet Stella Li~

Mommy is back. I’m sorry it took so long for me to write to you again. Mommy had to mentally prepare for all the procedures and needles and tests and the months that were to come. But now it’s all over, what Daddy and I have been preparing for and working towards is here..

Your sister, Alexandra “Lexi” Li, made her arrival on February 1, 2019. I know siblings look alike, but I like to think you kissed her before she got here because she has a hint of you. You have the same crazy hair. Her expressions and when she sleeps bring me back to those early newborn days with you.

I wish you were here, Stella. As happy as I am and as in love as I am with Lexi, a part of my heart aches painfully because you should be here too. I sometimes think it’s the baby blues that cause the tears to come because I miss you so, but then I remember the tears never left, they still come and go as they please. I miss you. You should be here.

You should be jealous of the attention stolen away by your baby sister. You should be a happy 4 year old trying to help me change your sister’s diaper. You should be throwing tantrums to gain my attention. You should be wanting to hold and hug Lexi. We should be taking new family pictures. You should be here. Gosh it hurts that you aren’t.

I remind myself that Lexi is here because of you. That she is healthy because you were not. That she is that much more loved because we know just how precious our children are.

I remember to hold her longer because I know these moments are fleeting and could be gone in an instant. I remember to take as many pictures as I can because pictures and videos are all that’s left one day. I remember to laugh at the poop explosions and to simply wipe away spit ups when before a throwup meant a visit to the hospital. I’ve learned how crazy quickly a baby will cry because she knows hunger. I’ve been able to enjoy the closeness that comes with breastfeeding without worrying about a controlled diet. I’ve been able to hold my baby without the sinking worry in my stomach that she would suddenly get sick in a matter of hours.

And all this is possible because of you. I am grateful, but it makes me sad that you sacrificed so much and didn’t even know it. Your diagnosis stole away so many opportunities for you and it makes me so angry and sad the unfairness of it all.

Lexi is so cute. She likes to be held. She likes to pout. Grandma and Grandpa are so doting. They are so in love. She brings us so much joy that we thought was lost forever. We are so happy to have her. She makes us smile even through sleepless nights.

We miss you Stella. We love you Stella. Wish you were here so so much.



Good morning my Stella Li~

It’s been a while since Mommy has been able to write. Being busy and tired are the main reasons why I’ve been away, but I try to write on the days I know I can hole up inside. The days I write to you are hard because those are the days I allow myself to really miss you. The days I take off the mask and let down my guard because no one can see me. They are the days were the hurt in my heart lingers and lingers instead of the random sharp gut punches that I feel each and every day. I wish I could write to you more. This is my diary of my life with you, because even though you aren’t here in my arms and with me in this house, you are in my life.

I was never very good at math. I always hoped you would be naturally gifted with math because I struggled a lot. So with my lackluster math skills, I started counting: 1..2..3..4..5..6..7..8..9………..

This week makes 9 months since I last called out your name and you opened your eyes and turned your head to look at me. This week makes 9 months since I last held you in my arms.  9 months without hearing you in the early hours of the morning yelling for me, 9 months without your hugs and your dazzling smile, 9 months since we sang our sing-a-long songs and danced to the music. 9 months. Stella, you have been gone for 9 months now….

1..2..3..4..5..6..7..8..9…..I count out the months because it feels like yesterday. The pain is as real as yesterday. The doctors, the sinking of my heart as realization sits in, and then the pain. I can close my eyes and it comes back to me. 9 months and still not a detail erased.

Oh what a long road this will be…this road I am forced to travel without you Stella. Because if 9 months still feels like yesterday, how heavy will this burden become in a year? In 5 years? In 10? Each new week brings an onslaught of “triggers”. Things that send me spiraling back to a specific memory, a still shot of you just being you. I’ve learned to deal with it, but it doesn’t hurt any less. I just miss you. I miss you I miss you I miss you my Stella.

But I smile more than I cry when I see you pictures and videos now. I remember the good times more than I remember that last month in the hospital with you. I even laugh when I remember something silly you have done. The longing for you does not go away and I feel it every day, but even now, you bring me joy. My daughter, my star, my Stella Li.

I love you. I miss you. I will work hard to make you proud because you always made me proud. I am proud of you my fighter. I love you my daughter. I miss you my Stella.

Always and Forever


8 months

8 months is both such a short time and such a long time. 

In the first 8 months of your life, you went through more needle pricks, more hospital visits (including one over New year’s when we thought we might lose you) therapies, and scans than most people do in a lifetime. It was so scary. The future unknown. Each time you had your blood taken, I prayed for good results, that I was still taking care of you and doing a good job. 

The last 10 months you were here with me, was different than the first part of your life. You thrived. Your personality broke through. That sassy, stubborn, side-eye giving, “squawk at people who touched the bow in your hair” Stella that I know and love emerged. I saw that you were a fighter. You gave me hope for the future. 

Recently, I have become tired again. The anniversary my grandmother’s death was a bit over a week ago, and missing her is so so bittersweet. I miss her and my heart aches, but I’m glad that there is someone I know and love and trust to take care of you in heaven till I get to see you again. 

Life is just moving at it’s own fast pace and still I feel like I’m struggling to keep up. My schedule isn’t particularly busy, but I feel overwhelmed at times. I see those around me as they continue to move forward in their lives. Heartache happens, hearts are mended and new heartaches arise. That, I think, is inevitable in life. We forget the hard times and look forward to the good. I wish it were that easy for me. 

I used to think it was the best thing to have a really good memory. I knew it would help in lots of things. Especially when winning an argument with your daddy. But I know my excellent memory is a double edged sword.  I can think of a moment we had together and the picture comes to my head. What you were wearing, how you tilted your hands and fingers in such a girly way, how your “Pebbles” ponytail would flip around when you shook your head to the music or to tell me “No”, the way your eyes would turn into the shape of a half Moon when you laughed, the dimple on your cheek and the tongue you constantly stuck out in concentration. I remember it so very clearly. 

But with this awesome memory comes the still shots of the worst day of my life. When those memories come, as they always do, it is all I can do to maintain composure as my heart physically aches. It hurts. 

I miss you Stella Li. Mommy misses you. Daddy misses you. We all miss you Stella. I can’t wait to smell your feet again. I love you my baby girl. 

Always and forever. 


6 months 

Dearest daughter of mine~

Stella Li~ I miss you so. 

Time is a tricky thing. It passes so quickly. 6 months have passed since you left my arms. What equals to a third of your life passed by so so quickly, even though each and every day seemed long, agonizing, and exhausting because you aren’t here. 6 months. Half a year. A third of the life you lived. Gone in what seems like the blink of an eye. But I know it wasn’t a blink. I felt every painful second of your absence. 

I’ve kept myself busy, but I am slow. The world whirls by each day and I struggle to keep up, but somehow I manage. Life goes on, I guess. Summer is here and flowers and leaves are colorfully decorating the world. It’s hot. I would be worrying about if you had had enough to drink, if you were too hot, and what to dress you in. You had so many clothes to choose from.

I finally cleaned your room. It had been sitting with clothes flung everywhere since the day we got the call for your liver and hurriedly drove you to the hospital. It still smells like you in there Stella. I sit in your room sometimes when I miss you, and just breathe in your scent. It is finally clean now, but still missing you.

I have tried to hold off on writing your letters Stella, because I speak to you everyday. I know you hear me when my mind screams “I love you”, “I miss you”, and “come back”. I also hold off 
on writing because the days I write to you, I am exhausted. It drains me. The next morning my eyes are always swollen from the tears that fall. It is hard. 

But I will write when I find the strength. It is hard to look back on the letters I wrote you, not only the letters I wrote you after you left, but also the letters I wrote you while you were here and I expected to give to you on your 18th birthday. These letters are a documentation, a timeline of your life, and where I was at that point in mine. They are heartbreaking to read. I know I wrote these letters, but reading them again, months and years down the line, despite how sad it is, I know the common theme of all of these is my love for you. It never changes. It never falters. My love for you my daughter is strong. It will never fail. 

So I will keep writing, even when it hurts to remember and even when it scares me that I will forget. Because I know for the rest of my life there is an absolute truth. That truth is my love for you and the knowledge that I will see you again soon. In the blink of an eye Stella, in the blink of an eye. 

I love you my sweet Stella Li. Always and forever.

Happy Birthday Stella!!

2 Years Old
My darling Stella Li~

Today is a special day. Today is your birthday. 
You are officially 2 years old today. Your life on Earth ended 1 day shy of 19 months old, but you are officially 2 years old to me.
What a roller coaster these months have been. My soul has traveled to the deepest darkest parts of misery while still being joyous knowing that I was given the honor and privilege of being your momma. I miss you.
When you were born 2 years ago today, you opened my eyes to a new world and you opened the doors to my heart so I was able to know the feeling of undying, unwavering love. I promised as I kissed your wrinkled hands, still clenched out of habit from being cramped inside my belly, that I would always be by your side. I promised to always take care of you, to love you, to cherish you and to be your friend. Then you got sick.
You were transported via ambulance at just over a day old to Cincinnati Children’s Hospital. It was so very scary, but even then I knew in my soul you were a fighter. As I walked down the halls of the NICU, through security and into the washroom to wash our hands I knew in my heart you were strong. 
I hated that washroom. We stood by a row of sinks, washing our hands has cleanly as possible to prevent any viruses or illnesses from coming into the NICU. As we walk through the door, a beautiful mural is painted on the wall. Across the mural was a quote: “There Is No Footprint Too Small That It Cannot Leave An Imprint On This World.”
I hated seeing that quote over and over again. I hated seeing it written across the wall hundreds of times as I scrubbed my hands raw and clean in anticipation of touching you, holding you. I wanted your footprints to be huge. I wanted your footprints to span the globe, to dance a journey, to reach everyone possible. I didn’t want it to stay small. I wanted you to grow and be strong, I wanted to watch your feet as they became too big for  your shoes. I wanted to be that mom who was proudly annoyed to have to go buy new shoes again. I wanted to watch you grow to be a tween, wanted to watch you go through your awkward phase and I wanted to see you find yourself and to be comfortable in your skin. I wanted to watch you grow into womanhood, to see you fall in love, to hold your hand through your struggles. I wanted nothing more to see you live a long and healthy life. I didn’t want your feet to be little.
I know that quote was written to provide some comfort to parents during their scary stay in the NICU, but at the time it gave me more fear than comfort. 
But my little Sassy Stella Li, your footprints are enormous and many. You made a change in this world. You touched people. You changed me. The quote from the NICU was right. Your feet left an imprint in many hearts. That imprint will never go away.
I love you Stella Li. I am so proud of you. You fought till the end. You loved till the end. My daughter you are and forever will be special not only to me but to so many. 
All the dreams I had for you may not come to fruition in my earthly life, but I know in heaven you are leaving your footprints everywhere. When the day comes that I see you again, I know you will take me to those footprints in heaven and show me what I missed and I will kiss your precious little feet, the feet I loved so much.
Happy Birthday Stella! I will celebrate this joyous day! See you soon my daughter. I love you so so much. I miss you. Always and forever. You have made me the proudest mommy that there could ever be.

Wish You Were Here


The weather is glorious today. Just warm enough that we can wear summer clothes, but not so hot and humid that it’s uncomfortable just like Ohio summers tend to be. It would be the perfect day to take you to the park again. I searched high and low looking for a  baby swingset for you and I never found it. So instead we rode on the slide. You loved it, but I can’t help but feel you would have loved the swings more. You always loved being upside down, leaning back and letting us catch you before you fell. The swing would have been your favorite thing.

Daddy wants to go on a walk. I don’t. I’m too tired. I also know the only place within walking distance is the park we took you to for that magnificent half hour of fun on the slides. Those videos are among my most prizes possessions. You were always at home, at therapy, or at the hospital. Very rarely did you get to go anywhere else. I saw the excitement in your face that day we stepped out. I saw the wonder in your eyes as you saw the colorful trees and the bright playground. You were so so happy. I was so so happy. Despite your diagnosis, despite knowing the transplant to come, despite being fearful day after day that you would leave me, I was so so happy. You made me happy. Stella, I wish you were here. I wonder when I will be able to say I am truly happy again. There are moments when I feel excited, when I feel glad and when I feel hope. But truthfully being able to say I’m happy, it eludes me. I don’t know when I’ll be able to say that again. In time, maybe I will. Maybe I won’t. But I know I can be happy even when I’m not 100% happy, because in reality, who really is on this earth?
But I know you are happy in Heaven. I know everyday is glorious and everyday is perfect to ride on swings and slides. I know you are smiling. I know you are running. I know Who holds your hand until I can.
I miss you my daughter, with every part of my being. I’m one day closer baby girl. I’ll see you soon. I love you so much​ Stella Li. Always and forever. 

Keeping Busy

Sweet Stella Li~
How is it up there? I hope it is as beautiful as you.
Mommy has been trying to keep busy. Keeping busy keeps me from being too sad, but the downside of keeping busy means I am so, so, so tired. I feel like I can’t catch up, even when I know I have a lot of downtime. I sleep a lot, but I still wake up sore and exhausted.  I’ve had the same sniffle of a cold for nearly 3 weeks now. 
But I can’t stop. If I sit still and rest, do nothing with my hands, and just lay down, the hurt comes again. The memories come again. It doesn’t matter whether they are from our most happy times together or if they are from those last days when you fought so hard and went through so much. It hurts. I just hurt. 
And so I move. I have become a multitasker. Because sitting and watching a show is not enough to keep the pain at bay. I’ve been knitting a lot. It can be stressful having such a long to-do list, but I need the distraction right now. 
Mommy has a big weekend coming up. Tina Eemo’s baby shower is this weekend, so your Eemos will all be together again. It will be bittersweet because I remember last year around this time, I left you with daddy for the first time for a weekend. It was the only time you and I were ever apart for more than a couple hours. I missed you every second then, and I’ll miss you every second this time too. The only difference is this time I won’t be able to video call you or have daddy send me some pictures so I can see you sweet face. 
But I will celebrate because a new life is coming.  New baby! One of the things I am most grateful for during this difficult time is that I still love babies. I always have. I always will. I worried initially that when I saw my friends having babies or getting pregnant that it would be difficult for me, but in actuality, they help me. It lets me dream again. When you left this world, my dreams were crushed into ashes so fine that I didn’t think I would be able to piece them together again. I felt my dreams slip through my fingers like sand and my dreams for your life, Our life, was boxed up in your teddy bear urn along with your ashes. 
But with each new life that my friends bring into this world, I find myself dreaming again. Dreams for my friend’s children, for their families, for “get togethers” and reunions. I’ve begun to dream again for myself and for our family Stella. For a sibling for you, for a future for our family that you will be proud of, a family that will carry on your legacy and make rare diseases a topic of discussion and research. Dreams of a future. 

Mommy is beyond excited for Tina Eemo’s baby to arrive. Your cousin. All this love I have pent up in my heart for you Stella Li, I will pour into this baby. It’s a lot of love and it regenerates so fast and it’s unending. My heart started making all this love for you, but Love is meant to be shared. Until I see you again, I will share this love, Your Love. So I will have fun this weekend Stella. I will celebrate. I know you will be celebrating with me because you are always, always in my heart. 
I miss you my daughter. My precious Stella Li. I’ll keep trying to be a mommy you would be proud of. I love you so much. 
Always and forever. 



I woke up at 6am today. I always do, but what woke me this time was my dream. In my dream, Daddy and I were driving, and I looked back and saw your empty car seat. The car seat that you only got to use for a month or so….Even in my dream I could feel the emptiness and sadness. I looked forward and the road ahead of us was long and dark and I could see nothing except what the headlights from the car would show. I knew it was a dream. I thought to myself “So even in my dreams I feel this loss. I know my Stella is gone, even in my dreams. What a long road my life will be without my Stella.” 

I woke up feeling incredibly sad.   I woke up and the tears came as I sat up in our dark and quiet house. This house that was so bright with your laughter, so alive because of your smile is now so still, so quiet. For an hour I sat on your couch cushions, just thinking about you. I went through it all in my head again, from the begining to the bitter, bitter end. My head hurt so much that it even took away for a little the pain in my heart. So I decided to lay down and try to sleep some more.
And then there you were. In my dreams. There you were. I don’t remember how you got into my arms but you were there. You shifted and made yourself comfortable, positioning yourself in my arms just like always. I held onto you for dear life. I looked upon your sweet beautiful face. My sweet daughter, oh how I have missed looking at you. You laughed and turned and pointed at different things but I didn’t look at any of it. I was too busy just holding you, feeling your body against mine again, and staring at your innocent beauty, and trying to soak in every part of you, every detail because I knew that soon I would wake again and my arms would be empty, just like your room, just like this house, just like my heart.
When I woke up from this most perfect dream, I sat up again and I ached like never before. I miss you Stella Li, my melody. I love you Stella Li, my daughter. 
Thank you for letting me dream of you. It was bittersweet perfection. I wished it had never ended, but I know I must go on. Each day I live, I live as fully as I can so that you will be proud. Each day I wake in the morning is one day closer to seeing your sweet face again. On that day when we finally reunite, I will look at everything you show me Stella, because I know when I see you again and say “Hi” to your sweet little face and kiss your hands and feet and hug you with all my strength, I will never have to say goodbye again. 
Until I see you again my Love. My sweet Stella Li. I love you. I love you. I love you. I miss you. I miss you. I miss you. I love you. 
Always and Forever.

3 Months

3 months today. 

The struggle is real. 

I miss you. I love you.

Most parents count the passing days by the milestones their children achieve: first steps, first solo potty, first day of school, first dance, first car, graduation, college, college graduation, marriage, kids….
Bereaved parents don’t have that luxury. We count how long it has been since our world went to pieces: a day, a week, a month, 3 months…
I can’t imagine how it will be next month..Or how I will cope when your birthday in April comes..But today I feel the weight of it all. I look in the mirror and feel like I have aged so much these past months. Losing you has taken so much of me. I feel like a shell, a shadow of my former self. 
I just miss you so damn much. I’m tired of holding back the tears. I’m tired of feeling the pain spread from my heart to every part of my body. I’m tired of the now familiar feeling in my throat before the tears and the wails come. I’m tired of “faking it till I make it”, I’m just tired. But maybe, hopefully, today is just a bad day. Maybe it’s worse because I know that today marks 3 months since you left my side.
So I’ll suffer through it. I’ll look through blurry eyes at your beautiful image caught and saved forever in time, again and again. Forever perfect. Forever young. Forever a day shy of 19 months old. Forever loved. Forever my sweet daughter. 
I hope tomorrow is a better day.
I love you. I miss you. Always and forever . 

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