12 years without you...

Dear Alyssa, 

It seems like yesterday that I woke up next to you and you didn't respond to me. The words floating in my head "mommy I love you so much"...I picked you up and moved you into my arms and couldn't feel you breathing but you were so warm. I felt for a pulse and there was nothing...I yelled for your daddy...I held you close to me to see if I was missing something obvious, you were so warm. I still didn't notice anything no heartbeat, no breathing, no response....it seemed like time stood still. Nothing moved, it seemed like there was no movement...did time stand still...I remember your dad calling 911 and then handing me the phone and they were telling me how to perform CPR on you and told me the Ambulance was on the way. They showed up after what seemed like forever and grabbed ahold of me telling me they had you...telling me they would take care of you...telling me I had to let go...those moments seemed to just stop they moved you from in front of me and took you from your room...took you from me. I got up and walked to the ambulance and got into the front seat they told me not to turn around and we went to the hospital it seemed like it took forever. No noises came from the machines in the back of the ambulance they took you from the ambulance into the hospital and away from me again...I stood there waiting for them to take me to you again and I stood in the room with you while they worked to bring you back to me but you had gained your angel wings...that was when I heard the words that would stop the world from spinning "there is nothing more we can do she is gone" I just remember falling back into a chair or onto the floor or into your dad. In that moment all I wanted was you. I wanted to hold you, to tell you I loved you, to not let you go...I walked over to the table where your little body laid and picked you up and climbed in the bed and held you...I wanted to join you to not be breathing anymore...or I wanted you back. I was always prepared to go first. It was supposed to be me...it wasn't supposed to be you. I sat there for I don't know how long then they asked about us moving to a more private room and they wanted to take you from me again. I couldn't let that happen I had to keep you close I carried you to another room and sat on the bed with you talking to you, telling you how much I love you and wanted you to come back to me. I sang you your song several times. I didn't want to let you go. I wanted to be with you no matter where you were. I'm your mom I am supposed to protect you and somewhere along the lines I must have failed.  I was stuck, I was lost, who was I now....I sat there for I don't know how long with you and then your dad told me we needed to go that I needed to let go. He took you from me and laid you on the bed. I kissed your forehead one more time and ran my fingers over your beautiful face...trying to remember every feature of your sweet face...trying to remember the smiles on your face and the giggles that would just make their way from your toes all the way to your little face and light up every part of the world when they escaped from your mouth. I wanted to remember the "I love yous" that you gave out with out any problem and the hugs that could make any horrible moment amazing. I wanted to remember all the little things and all the big things. Most of all though I wanted you to get up off of that bed, run to me, wrap your arms around me and tell me how much you love me. I wanted that more than anything in the world and I knew that was never going to happen I knew I was never going to hear those words from your sweet lips ever again. That was when my feet started moving away from you but my heart was tugged from my chest and left in the room with you. I didn't want to move forward but knew how upset you would be with me. We got to the car I was holding your shirt in my hands and climbed in the front seat of the car and looked over my shoulder to see your empty car seat realizing that seat would always be empty from now on. We drove home and were greeted by your babies who were looking for you and knew they would be forever looking for you. After that it was a blur of people and not knowing what way was up. We were surrounded by people who loved us but I felt completely alone. I didn't know what to do so I started seeing a therapist who prescribed a whole bunch of drugs making me hide behind something else which meant I still wasn't myself and still felt completely alone. It was one of the worst times in my life. Prior to that day I wouldn't change any memories that I have with you. Those memories some days are the only thing that get me through the days. I know had I been able to bring you back that day I would not have stopped fighting for you and I also know that you wouldn't have wanted to live on machines either but I also know that I wanted you to come back to me...I still want that. I miss you so much every day and there is always something that happens in a day that makes me think of you and want to share something with you. I miss you more than you will ever know... although now that you are watching over me you probably do know. I love you more than all the stars in the heavens seen and unseen times infinity.

Love always, 

Mommy 

Eleven Mother's Days...

I was supposed to post this for Mother's Day but did not because it was such a rough day! I love you Alyssa!💜

Dear Alyssa,

So this makes Mother’s Day number 11 that I don’t get to spend with you. The last time I was able to hold you in my arms was 3896 days ago some days it feels like a lifetime other days it feels like just yesterday. When someone asks me the question how many children do you have I always answer one. When they ask if you live with me my answer is always yes and the answer will always be yes. When they ask me how old you are I answer that you would have been 18 but you are forever 7. Then they of course say oh I am so sorry what happened…then the answer comes that your life was stolen by cancer but now she is a beautiful purple butterfly. Then the comment comes that always comes wow you are so strong or some variation of that but then my response comes back I am not the strong one Alyssa was. She fought for her life and lived her life the way that everyone should. She lived as though today was all she had. She was amazing, she had a light that she spread to everyone she met. Then of course you have some that make a comment along the lines of well at least you didn’t have to go through the teen years. That is when of course the comment comes to my mind that I never say is which one of your children would you not want to go through moments of their life with. The honest truth is that I would trade anything and everything to have watched you grow up. To be able to go to your graduation in 4 days. I would love to be able to watch you leave for your prom dressed in a beautiful dress that we picked out together and have been able to do your hair for you. I also wish that I cold have just done the normal mundane daily things that go on in life. The conversations about boys, the conversations about how school is going, how someone at school said something that irritated you or even just talking about the things on TV. I would love to have some normal things with you just knowing that you are here and that I could eventually wrap my arms around you.  

This time of year affects me the ads that are on TV talking about how you shouldn’t forget to show mom how much you love her. The touching commercials about how the mother and daughter have a reunion or the commercials where the kids are drawing pictures for their moms to go along with the jewelry that dad bought for her. I don’t get that, I don’t have anyone that I want to share the day with and most people do not consider me a mom because I don’t have a child here to mother. I am though…I carried you for nine months…I gave birth to you…I held you in my arms…I fought for you…watched you grow…watched you learn…I watched you fight for your life…I made decisions that no parent should ever have to make for their child…I was there with you when you came into this world and I was there when you left it…I was the one who loved you from the moment I found out that you were going to be coming into this world and still love you today…I sat in your hospital room wishing that I could take away all of your pain…I learned how to do your dialysis so that you didn’t have to have someone else do it…I have hidden my tears so that you knew that you had my strength when you were weak…I have laughed through tears…and laughed until I cried…I have lost sleep…I have snuggled into a small bed with you so that you felt safe…I have yelled and screamed at people…I have held you while you cried…soothed your fears…and shown you that you have the spirit inside of you…I listened as you told me of your adventures during surgery…I have sat and worried and waited for news of you during surgery…I have done everything that a mom is supposed to do. So what about that says that I am not a mom?

It isn’t that I want to wipe out Mother’s day. I love the meaning behind the day, I love the reason for the day but I hate that my reason for being a mom isn’t here in person to celebrate the day with me. 

I love you more than all the stars in the heavens seen and unseen times infinity.

Love always,

 Mommy

18th Birthday

Dear Alyssa,

On this day 18 years ago I was able to hold you in my arms for the very first time...Look into those beautiful hazel eyes of yours...Kiss your forehead and run my fingers through your beautiful red hair. On this day 18 years ago I was in the presence of an angel as I am today but I am not given the opportunity to look into your eyes, kiss your forehead or run my fingers through your beautiful red hair...I can, however, tell you that you are the most beautiful presence in my life, you are my reason for getting out of bed in the morning, you are the reason the sun rises and sets in my universe and I am going to love you so much you never feel unloved or unwanted. I am going to love you until the last star in the furthest solar system burns out. In the last 18 years these feelings have only grown... Happy Birthday to the brightest star in the sky...The most beautiful butterfly on earth...And the most adored, loved and beautiful angel in the Heavens! I wish I could spend this day with you but sadly we are too far apart...All my love to you my sweet purple butterfly angel!! I love you more than all the stars in the Heavens seen and unseen times infinity. Happy 18th sweet Alyssa Bailey Miller!!!🎂💐🌸🌹🌴🎈🎉

Love always,

Mommy

10 years

Dear Alyssa,

I cannot believe it has been 10 years since that horrible morning. I start thinking about it and know it was the most horrible morning of my life, but I also know that it was the last morning that I held your little hand, kissed your little face, held you in my arms. I know that I will never do that again. I know that I will never feel your breath against my cheek or your butterfly kisses. I know that I will never hear you say, "Mommy, I love you." That morning began a part of my life that I never thought that I would ever have to endure, but I am now in the midst of trying to figure out who I am and what I am supposed to do. That morning changed so much for me. How do you know ho to be a mommy to your baby when she isn't even here anymore? How do you go on living when all you want to do is curl up and die? How do you continue to live on when your child's life has been cut short by cancer? This is the prison that I have been sentenced to. This is the burden that I must bear. I have to go on with the thought inside my head as every holiday passes it has been blah, blah, blah years since I lost you, and it is so many more than I was able to share with you or that you were able to celebrate. My birthday was just a few days ago...do you realize it was 33 more than you were able to celebrate? It makes me sad that you will be forever 7. Why do I feel like I am being punished? Like I am the worst mommy ever?

I can't say that I am not blessed because I have a view on life that most people do not have until they are much older than me. I have been given a gift. The gift of time and knowledge. I have been given the gift of knowing that the next moment or day is not promised, and that I need to make the most of the moments that I have. I have been blessed with knowing you and being the only one to hold such special memories close to my heart. I am also blessed because I was chosen to be your mommy. I cannot think of a better job or responsibility. I was given 7 years, 7 months, 28 days, 4 hours and 7 minutes with you. We made the most of those years, months, days, hours and minutes. Some days it is hard to remember that you are gone. Some days I sit and wonder what would it be like to talk to you and hear you talk back. I know I must seem like a crazy person because every time I see one of your butterflies flitting around I say, "Hi, and I love you Peanut." For some reason, it makes me feel better. Like you are still here with me and some days it makes me feel very alone. I guess that is just the feeling that is supposed to come when you lose a child. 

The other thing that always pops into my head with your anniversary is the day I first held you in my arms. I will never forget that moment looking down at your beautiful little pink face and head full of red hair. You were so peaceful laying there in my arms. You looked like an angel. I had the same feeling that I had on the day that I lost you that I never wanted to let you go. I wanted to hold you and love you for every moment of my life. I wanted to give you the world. I wanted to be your world. I wanted nothing to come between your dreams and you. I wanted to protect you from any kind of hurt. I knew though that I would eventually have to let you go and experience the world, but at the same time I knew that was going to be the hardest thing that I would ever have to do. On the day that you were born everything was right with the world. I had this beautiful little blessing that I had nurtured, loved and carried for nine months. When I finally got to meet you and hold you in my arms I knew I would watch you become a woman some day and see you holding your baby in your arms. Then when the day came that I had to let you go I did not want to. I wanted to hold you until my arms could not anymore and even then I wanted to push myself to hold you because I knew that when I finally let you go I would never hold you again. I wanted to kiss you and remember the way you felt. I wanted to memorize the features of your face and the feeling of your skin. I wanted to hear your sassy little voice tell me that you had run out of kisses and hugs until the kiss and hug fairy came. I wanted to see you shake your finger at me and tell me "you know Mommy. I was only joking." You know though in those hours that I sat there and held you all I kept thinking was how you still looked like an angel to me. How I never wanted to let you go. I still wanted to hold you and love you for every moment of my life. I still wanted to give you the world. I still wanted to be your world. I still wanted to give you all of your dreams and protect you from hurt. I knew that the moment I laid you down and kissed you on the forehead one last time, it would be the last time in my life that I would be able to touch you. I knew that it was the last time I would be the world to anyone and it would be the last time I would be needed completely and totally by anyone. That day taught me something. It taught me that no matter who comes and goes in your life the one precious gift that you are given is the love of a child. It is the purest kind of love, there are not conditions, there are no moments of distrust. A child loves you unconditionally because they know no other way. That beautiful little soul that you brought into this world is pure. You are my one unconditional love my little peanut.

So on this day that marks 10 years of being an angel. I hope that you know I am jealous of those that have joined you. I hope you know that I am blessed with the memories of you. I hope that you know how much I love you. Who knew that the love of a mother can stretch across time and space into the spiritual world? I hope you know that I think of you daily. I hope that you know I see your little reminders. And I hope you know that I still look at the sunset each day the same way. 

Happy Angel Birthday Alyssa! Fly high my little butterfly!!!

I love you more than all the stars in the heavens seen and unseen times infinity! 

Love always,
Mommy

 

My 40th

Dear Alyssa,

Made our butterfly cake today! Wish I could have made it with you!

My mind keeps flashing back to 10 years ago the last birthday that I got to spend with you. It is one of the best birthdays I think that I have ever had. Most people want big elaborated celebrations for their milestone birthdays but all I really wanted that day I got. I was blessed with a day to spend with you. We made my birthday cake together. You and I sat and talked about nothing in particular but it was so special to me. I loved our little birthday traditions. The baking of the birthday cake and of course icing it. Putting something special on top because a birthday cake just has to have something special on it. Then we would do our girly stuff as you called it. Painting fingers and toes talking about the things that were going on in your life and the things that were important to you…I know those things would have changed by now and probably would have included boys. I loved our talks and I miss them dearly but treasure the ones that we did have. Then of course when we were done with our girly stuff we would make a trip to the beach because every birthday needs to be celebrated with your feet in the sand and salt water. We would stop on our way home and pick up balloons that we would write on to your friends who had gotten their angel wings already and needed to be remembered and celebrated. Then we would go home and get there before your daddy. We would make dinner together and sit and eat together. Then of course no birthday is complete without cake and ice cream the ice cream being optional. Once we were done and you were ready for bed I got my birthday snuggle. I laid in your bed with you just holding on to you and never wanting to let you go. Knowing that we were another year older and hoping that I would have so many more of those moments with you. Little did I know that after that one I would never have another birthday snuggle. Of course along with those birthday snuggles came the “I love you so much mommy…I love you more shortie…no mommy I love you more…no Alyssa I love you more than all the stars in the heavens seen and unseen times infinity…no mommy I love you more than all the grains of sand on the beaches and in the oceans times infinity” That is where it would end and I would give you a kiss on your little forehead and you would fall asleep. I would fall asleep with you and that day I did. I loved the feeling of being close to you.  After all that we had been through that year it was so peaceful to just lay there no monitors beeping, no nursing staff coming in and checking your vitals at all hours of the night, no lights on outside the door to your room aside from a nightlight down the hall, no noise or commotion…just you and I laying there in your bed, me feeling your little heart beat up against my chest running my hand over your little head and through your hair. I held you as tight as I could without hurting you and I never wanted to let you go. There is some sense of peace found in holding your baby that is indescribable. Those moments with you will be forever etched in my mind, that feeling of your head on my chest and the feeling of your hair as I ran my fingers through it. The feeling of spending my birthday with the most special person in my world. My wish that year was to have you home, to be able to do our usual traditions, to spend time with my shortie. My wish this year is to have those moments once again the difference between this year and that year is that I know it it not possible for my wish to come true. No matter how hard I push or try that wish will never come true. I know you would tell me mommy you aren’t supposed to tell your wish because it will never come true. Well my little peanut that wish I know will not come true until we are reunited and I know my job here is not finished so it will be quite a long time before that wish is granted. I do look forward to that day though…but the only thing I wish for on that day is that I can just hold you and never let you go. 

The only thing I have left to say to you my little peanut is this…thank you for every moment I got to spend with you, for every hug, kiss and I love you mommy, thank you for making me realize what an awesome responsibility it is to be a mommy and what an honor it is as well. Thank you for choosing me…and thank you for showing me the world through your eyes…thank you for being mine…thank you for always giving me a sign you are with me. My life is complete because you were mine. My life is complete because I have the most special little girl in my life. 

I love you Alyssa more than all the stars in the heavens seen and unseen times infinity and I always will. 

Love always,

Mommy

So this is what 40 looks like! :P

Second Week Senior Year...

Dear Alyssa,

It is hard to believe that my little peanut would be in her second week of her senior year...we would be doing senior pictures, picking your class ring, figuring out what you would be doing for college next year, finding a senior prom dress and shoes, getting your cap and gown, preparing for your huge luau after your graduation, finding that first boyfriend who would be the love of your life I am sure, learning so many new things...I can't believe you would have a senior and instead of doing all these fun things with you I am just dreaming about who and what you would be. What awesome personality you would have? Would you be involved in every portion of high school life? Would you be popular or the shy kid? Would you still enjoy spending time with your old mom or would you only spend time with me just as little as possible? I keep envisioning you as a 17-year-old...your long red hair...your beautiful smile and laugh...probably as tall as me maybe a little shorter...your kind and loving heart...your involvement with all your sisters and brothers in the fight standing next to you. I stand by and watch all the keiki that you grew up with seeing them and the things they do. I wonder if you would be dancing hula like a pro now. It makes me smile thinking about what you would be like but it also makes me sad for the things you never got to experience and for the things I never got to watch you experience as your mom. There are so many things I wish for but on the other side, I am very thankful for the things I got to experience with you that most parents take for granted. You make me so proud to be your mommy. I am so in awe of all the things that you endured in such a short amount and at such a young age. I know you aren't in pain anymoreand you are able to be around everyone that you love but I honestly miss being a mommy to you and watching you grow up and become a beautiful woman. Thank you for being my baby!!!

I love you more than all the stars in the heavens seen and unseen times infinity.

Love always,

Mommy

Finding a new normal...

Dear Alyssa,

So I have been asked this a lot...how do you do it? How do you go on? I had never really had an answer or really thought about how I should answer, but lately, it has been on my mind a lot...why don't I have an answer to that question...is there an answer to that question...and do I really want to know the answer. I keep thinking that maybe knowing the answer to that question might break the control that I think I have on my life or make me fall into some strange pit that I will have to pull myself out of. The more I think about the question though the more I think I have come up with an answer that may explain it to others in a way that they don't have to step into my shoes in order to understand. My situation is unique because no one expects the horrors of childhood cancer or the things that your family will have to endure if your child passes away. But thinking of how most people look at life (I think) everyone has to find a new normal more than you would think, starting at birth you find a new normal starting with things like learning to talk, to walk, to sit up, to eat all by yourself...then as you get older you have to find a new normal when you start school and have to leave your parents for the first time, you have to find a new normal when you get your drivers license, go off to college, move into your first apartment, get your first job, go off to the military,  get married, have babies...each time you reach a milestone in your life be it small or large, good or bad, forced or planned you have to find a new normal. With every new normal comes a new set of things you have to learn and experience. Although a road with childhood cancer is not an easy one there was a new normal that came with it as well...learning the many names of chemotherapies, learning about radiation and how it works, learning the different types of childhood cancer because inevitably you are going to meet all kinds of wonderful people who are in this new normal with you, you learn how to tell a child of the horrors that they have to endure in order to be "healthy" again and away from this monster and teach them that this new normal is going to change how life is lived. This new normal teaches you humility, it teaches you thankfulness, it teaches you love, it teaches you not to take a moment for granted, it teaches you to cherish every little detail. It teaches you to find what you know and hold onto it, this new normal forges new bonds and strengthens old bonds or it sometimes even severs them...this new normal becomes your new way of life...learning that there is not enough funding for our children to get them all healthy again...this new normal is cruel...it takes you from a loving "normal" family to a family struggling to survive...this new normal brings about fear, it brings hope, it brings a family together or it can break a family apart...it takes everything you thought you knew and pushes it right out the door. Learning to deal with this new normal is not easy..learning to put faith, hope, trust, the life of your child in the hands of others is a part of this new normal and definitely not an easy part of the new normal. Then for some of us that journey continues and the new normal includes the after-effects of the chemotherapy and radiation that their child had to endure. For others the path is worse...the new normal that is faced is losing your child...finding another new normal where all of the things that you have learned in any previous normals are no longer relevant...in this new normal you have to reinvent yourself...find out who you are again...find out who your partner is...find out how to honor your baby that was taken from you...in this new normal you have to endure bad days and good days...in this new normal there are no easy answers, there is no path to follow you have to forge this new normal with no guide and learn to find peace in your new normal...finding this new normal takes a long time it is something that can't be measured in moments, hours, years, even a lifetime...because in this new normal the little life that you brought into the world is no longer here for you to see them become an adult...it is not something that is normal or wanted but it is thrust upon you and either you find your new normal or your new normal runs you over like a steamroller....

Remember the next time that you talk to a family that has lost a child don't tell them their child is in a better place...don't tell them well that was years ago aren't you over that yet?...Don't try to give them advice...let them talk to you and you talk to them about their child they truly want to know that you remember their child that they made an impact on your life...

A grieving parent will always be a grieving parent one who is living with the loss of their child coping each day to live on and make a difference, to find their new normal...

I love you more than all the stars in the heavens seen and unseen times infinity Alyssa!! 

Love always,

Mommy