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Letters to Stella Li

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

딸~

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. 

Mommy. 

Dreams

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.
Mommy.

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 . 
 

Valentine’s Day

Happy Valentine’s Day sweetest of sweet Stella Li. I love you. 

I never much liked Valentine’s Day. I always thought it was just another commercial holiday. Now I feel different about it. Valentine’s Day celebrates Love, in all forms. Love, to me, is you Stella Li. And so I celebrated Valentine’s day yesterday even though you weren’t there to celebrate Love with me. 

Yesterday after work, I decided to go see both you and my grandma. I decided to go see grandma first and on the way planned on buying you both some beautiful flowers. I went to 3 different places searching for flowers but none of them seemed beautiful enough for the both of you. By the time I found some pretty tulips I barely had any time left. Your mausoleum closes at 5pm. So I had to rush to see grandma then I had to really really rush to see you. 

I didn’t think I would make it. I didn’t think I would get there before the doors locked for the night. I chewed off all my fingernails trying to get there on time to give you your Valentine’s Day flowers. I really didn’t think I would be able to visit you. But I made it. I saw your pretty face through the window. I looked into the box that houses the teddy bear urn that holds your ashes. I got to see you for Valentine’s day. For just one minute. Then I had to leave because it was 5:05.

On the drive back home I was so so angry. Angry because I now have to live by a set a rules that I never agreed to. Rules that state when I can and cannot visit you. Angry because you are my daughter and I am your mother and I should be able to see you, be with you any time and all the time. It angers me that I now have to almost schedule you into my day, sometime between 8am and 5pm, when before all I had to do was glance at my side and see you there, clinging to me while you gazed up at me with your sparkling halfmoon eyes and that precious dimple. I was so angry. 

So I went home and I went upstairs and I sat in your room. I breathed deep and I smelled your scent. That mixture of diapers and baby wipes and desitin and a little bit of carnitine, the smell of you. And I remembered. I remembered your love. You brought me and daddy the greatest love. A love that was so pure, so deep, so unending in trust and innocence. You loved us, just as we love you. It is the kind of love that I know God feels for me, for you and for everyone. So I decided that I will remember the love. When I am angry, I will remember the love. I will celebrate our love everyday Stella Li, because that is how powerful and everlasting it is. 

I love you my daughter. I love you Stella Li. I miss you every moment of every day. I love you.

Always and Forever. 

Mommy.

Silence

It is silent in the house. 
But I still hear you. I hear your voice. I hear you move. I hear you cry. I hear you laugh. But the house is silent. 

Your toys are piled neatly in the corner instead of scattered across the floor. I don’t have to watch where I step because I no longer worry about stepping on a Lego. The baby gate is gone and the furniture has been rearranged but the house still carries echos of you. Your tiny figure is still everywhere to me. Each moment captured and imprinted in my mind, what you accomplished in that very spot by the stairs, how you smiled and flashed your dimple at me from the couch, the way you were ever so pleased with yourself when you got what you wanted…..Oh how I miss you.

Each day is vastly different. Some days are so hard and some days are less hard and some days I even smile. Today is a hard day. The silence in the house clashes with the memories of you in my head. 

Today, my sweet Stella, is Cady’s funeral. She was fighter like you. She was a princess just like you. Another sweet child gone to Heaven, just like you. How unfair it seems at times…Thinking of how many more days we must survive till we see you again. 

At times I think I don’t know how I will do it, but I know I have to. In those moments when the sadness crashes over me like wave upon crushing wave, I think of you. I think of how nothing could stop you. My stubborn daughter. There was no “can’t” for you. You would yell and screech, using every ounce of your energy to lift yourself to your feet. Then you would yell and shout till you lifted yourself into the couch. The physical therapy shoes that were so uncomfortable didn’t stop you from standing. The lack of protein in your diet didn’t stop you from climbing on the stairs or the couch. Your low muscle tone did not stop you from climbing to your feet to stick your hand in the fridge. You did it all with your cheeky grin, sticking your tongue out in concentration.

When I looked up Propionic Acidemia for the first time, in bold letters I read the words “failure to thrive”, and I was shaken to my core. But you threw the book at them. You thrived. You showed them they were wrong. You were growing. That statement does not apply to you. Everyday you showed me your strength.  Nothing stopped you until you left us. You fought till the very end. I saw it with my own eyes. I watched you as you lay in your hospital bed. My fighter. My daughter. My hero. 

I will strive to be more like you Stella. I will never give up. I will not let the word “can’t” stop me. I will yell and screech as I climb to my feet. Just like you, I will struggle and sway, and pant and become so sweaty, but I will do it. Just like you.

Stella Li. There was no stopping you. I know there is no stopping you still. I miss you. I miss you. I love you. I love you Stella Li, you are my melody and my mantra. I am so proud of you.

I love you Stella Li. Always and forever. 

Mommy.

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