A Hoot We Needed

I haven’t updated in a while and it’s because so much has changed in the last couple of weeks.

I resigned from my position at work to achieve my dream of becoming a nurse; to fulfill a promise I made to my mom in the last few days of her life. Although taking care of her was the hardest thing I ever had to do, 13124513_10156928387720077_1334661829735087786_nmentally and physically, it was the most rewarding thing in my life. It taught me patience, acceptance, empathy, sympathy and it made me a stronger person inside and out. I started nursing school and it’s difficult – but it’s supposed to be, especially when your mom passed away just shy of two months ago. But my focus on my dream is stronger than ever, reminding myself each day that I want to help patients and their families during the hard times in their lives; just as others did for us.

We celebrated the first Mother’s Day without my mom, and it was the most difficult day of my life, second to saying goodbye to her. The days that followed brought emotions that I didn’t know existed, the day itself gave me lasting exhaustion. I was tired, irritable, sad, angry and experienced feelings I can’t even begin to put into words. 13124733_10156928387605077_2966671819641217940_n

Mother’s Day is supposed to be about spending time with the woman who gave you everything, who taught you all you needed to know and more, who wiped your tears when you cried, hugged you when you were wrong and loved you no matter what. Except this Mother’s Day, it wasn’t that. She was not there to wipe my tear soaked eyes, she wasn’t there to have a glass or two of Pino Grigio with me, she wasn’t there to laugh with me or open up presents that I put so much thought into. She wasn’t there to go to a vineyard with. She wasn’t there physically and that was the hardest part.

People can tell me continuously until they are blue in the face that she is always with us, but that doesn’t change the fact that she isn’t tangible. She isn’t in front of my telling me, “Ashley, stop being a baby.” She may be with us, but physically she is not and that is something I just can’t fathom.

On Mother’s Day we tried to make the best of the day, remembering my mom in the best ways possible. We started off at church and prayed to God that she would give us some kind of sign that day. We followed it with a trip to the cemetery. It was raining and the rain fell down my face, just as my tears did. We placed an angel and flowers at her grave – two things we would never get her. First, because she hated flowers. Second, because she preferred her nails getting done more than a knickknack.

13124967_10156928387425077_2427183647542871906_nWe stood there in the pouring rain and I begged her that this was a dream that we still didn’t wake up from. I stood there until I could not stand there anymore. Visiting your mom at her grave is something you shouldn’t have to do. It’s not something I should have to do. I never expected this day to come this early and I always thought she’d be around forever, making it to her mid 90s, because that is the personality she had. I never thought that I would bury my mom so early in my life.

We continued with our day and had lunch with my husband’s family. At first, I wasn’t going to attend because 1) I was too emotional 2) because it felt as if I was replacing my mom with something else and finally 3) I was worried I would break down and cry because I couldn’t have lunch with my mom.

We came home from brunch and planted a tree in memory of my mom. My in-laws bought us this tree to help keep the memory of my mom alive. We dug out a garden and planted a Flowering Dogwood. Again, she doesn’t like flowers, but seriously, the tree is beautiful. We also decorated the garden with an owl stepping stone in honor of the first sign we ever received from her and another stepping stone in her memory – “If love alone could have spared you, you would have lived forever…”

13173383_10156931296630077_6397340587477032017_o

And as the days pass, it gets harder, not easier. My praying that it is a bad dream is frequent and all I can think of is how this happened. How did this happen to the women that was so strong, so resilient? We’re approaching two months without my mom and it feels like time is going so slow. Each day drags on and its one more day without her.

Between the stress, our busy schedules, and my mom not being here it seems some days it’s unmanageable. So as I struggle for answers, for support from her and for a sign – she pulls through just in time – just before I break.

Yesterday morning, I went outside and saw that our garbage was torn a part. The garbage can didn’t look messed up, and only the top bag was torn. I called my husband and told him I thought a raccoon got into it for a midnight snack. Well, to my surprise, last night my husband was outside with the dogs when he saw what in fact was eating our garbage. It was a big, beautiful white owl. (If this is the first time you have read my blog, the first sign the night my mom passed away was an owl hooting outside of our window – and days that followed we saw more owls and heard them hoot.)

When my husband texted me this, I was in class and tears instantly filled my eyes. She was listening to me. She knew I needed a sign – she knew we all needed her, three days before the two month mark without her.

This one moment, taught me overnight to keep the faith, to keep believing and to know when times are tough, she still will come through, she still will take care of us.

Strong Sue – Sue Strong

We’re home. We’re trying to enjoy as many minutes as possible with her. She’s tired. She’s exhausted. She’s ready to stop suffering, but she’s not ready to leave her family and friends.

12809554_10156660569880077_7606205465474345305_n

Making memories – laughs, tears and a lot of hand holding with family and friends. We celebrated her first night home, her first night in a long time – home. [Marianne, Alan, Jonathon, Whitney, Christi, Stephen, Dana, Sue, Me (Ashley), Allen and Dave.]

I said this was going to be the hardest thing we’ve ever had to go through, or do; but what I didn’t realize was how scary this would be. I didn’t realize that my eyes would constantly go to her chest, making sure it was moving up and down, and she was breathing. Or, when she labors her breath and her chest doesn’t move for a few seconds, my heart begins to pound outside of my chest. This is our reality.

Yesterday was a bad day. She didn’t eat or drink anything and it took more than a couple of people to move her. She was uncomfortable and she had difficulty breathing. There was not much we could do to make her comfortable. She was scared to close her eyes because she was scared it was the time. She said, “I’m ready. I want to let go.” And when I asked her when, when are you ready; she responded, “Tonight. I can’t do this anymore.” IMG_0087.JPG

She made it through the night and she’s still with us. Our friends, I mean family, were here all day and night. Some slept here and we watched her. Some came around midnight just to say hi and give her a kiss.

And, we watched her relax and go to sleep. But, she only slept on and off – scared to go into a deep sleep.

This morning, we woke up, and moved her into a chair. She drank and ate more than yesterday. She’s tired. And, it’s okay to go to sleep. Her breathing is a little better, she’s relaxed. We’re here, next to her, and this is where we will stay – all day, every day.

Father Dom, from our church, St. Thomas the Apostle, in Oxford, Conn. is coming today. He’s coming to help give her some peace, help give us all some comfort. And we will pray. We will pray that when she’s really ready, she will let go, and she’ll be comfortable – and it will be easy.

I am so proud of her. She has fought this battle for too many years. A lot of people would have given up a long time ago. She’s never cried, she’s never gotten mad, she’s never said enough is enough. This is why she is my hero, and why so many people admire her. Her strength and will to live is beyond anything any of us can understand.

So as I sit here next to her and write this blog, I can speak for her and say she is grateful and thankful for every well wish wished, every prayer said, every piece of love shared. During this time, the hardest time in our lives, we are humbled by the support we have from our friends and family.

Home.

She made her decision. 

No more hospitals, no more doctor visits, no more infusion centers, no more rehab centers. No more picking and prying.

She’s coming home. We’re all coming home – to the home I grew up in. The home our family made countless memories in. And as my husband and I moved our bed, clothes, dogs and as the hospice company delivered the bed, wheelchair, walker, and oxygen – it was real. This is real. 

  

We will take care of her in her final weeks. We will make more memories in the house that holds our secrets, dreams and hopes. It’s going to be hard, really hard – the hardest thing we’ve ever had to do; but it’s her decision and she is in control this time. 

So, just like we have been – we will cry, laugh, get mad and love with everything we have.

And when I think about it – I’m mad, I’m angry, I’m frustrated, I’m overwhelmed. A miracle doesn’t exist. Instead, this cancer exists and it’s taking something away from all of us. I’m struggling to find my faith, I’m struggling to understand why and how this has happened to our family.

And the worst part is as I think about what’s to come – my future kids will never meet the woman who I call my hero. My mom won’t be there to tell me I’m swaddling wrong. My mom won’t be there to babysit and spoil our children. 

I know, life isn’t fair. Life isn’t perfect. But it should be. Bad things shouldn’t happen to good people. And there should be a cure for this disease. 

While I watch my mom process this, this new reality, she’s hurting. She doesn’t want to let go. She doesn’t want to miss what’s to come. She doesn’t want to die. She’s not ready. And we’re not ready. 

So, today we sit in silence waiting to be told when she can come home. We’re ready for her to come home, but we’re not ready for what’s to come.

This is changing me. This is changing all of us. And I’m scared. I’m scared I’m not going to take care of her the right way. I’m scared of being without her. 

I love you, Mom and I am so proud of your strength and perseverance. You’ve been through more than anyone can imagine. You will always be my best friend. 

It’s time to come home. 

The Conversation No One Wants to Have

There comes a time when reality sets in and you have to be honest with yourself and the people you love. You have to tell them the hard truth. The truth that no one wants to hear, the truth that no one even wants to speak.

There is no cure. There are no other options.

We’ve heard it all over and over again, but today, it was different. It was like hearing and living it for the first time. It was the first time my mom really knew what was going on. It was the first time we were all crippled by the outcome.

dayton-0510.JPG

At first we fought. We fought hard about what reality was and what my mom was thinking was possible. I fought with her for the first time in a while. I didn’t mean to. And it hurts me that with our limited time, we got mad at each other. That’s not supposed to happen. But my mom dying when I am 24 years old isn’t supposed to happen either. Not to me, not to my mom and not to my family. This was never in our life book. This was never a chapter.

So, we fought. I fought with her because I love her so much and because I care about her so much. I am her advocate, but sometimes her worst nightmare. I tell her what she doesn’t want to hear, I make decisions she doesn’t want to make and I tell the doctors things she doesn’t want me to tell them. But, it’s all for one thing, it’s for her to have the best care.

The doctor came in today. He reinforced that chemotherapy was no longer safe, it is not an option. The chemotherapy is not working and her body isn’t tolerating it. “I’m not ready to die. I’m not ready to leave my family.” Those words she said, gave me a feeling of a knife stabbing me. I tried to stay strong, for her and for my dad. But, I can no longer be the rock everyone thinks I am. I can no longer sit there and be strong for everyone else, while my world is crashing down. It’s crashing and there is no way to stop it. My worst nightmare is coming true.

We sat there. Whitney (the best big sister, maid of honor, best friend) sat there and helped bring comfort in a time of distress. She sat there, next to me, rubbing my back. She was there for the hardest conversation. And for that I am eternally grateful.

My mom asked what’s next? And, the answer to the question – she gets to decide – to come home or go to inpatient hospice. It’s her choice. She controls this. And no matter what she decides my dad and I will be there by her side; spending the most time with her as possible, as we go through the worst thing possible.

We have a couple weeks to a month or a little more at most. I knew this, but when it was said it felt like a dream, a bad dream. It couldn’t possibly be true. How can this happen to the woman who I look up to, who I call mom, who I run to for everything?

She doesn’t want to die. She doesn’t want to leave us. She’s not ready for this. I can’t even imagine what it feels like for her. She’s being told she’s dying and she doesn’t want to. She wants to live. She wants to be with us.

So, we’re here. We’re at this place in time and it sucks. It’s a living hell. It’s never going to be the same. It’s not going to be okay. Because, I’m 24 years old and I still have so much I need my mom for. I still have so much to share with her. And, because my parent’s just celebrated 25 years of marriage and my dad needs her. We need her.

Life isn’t fair.

 

Triple Negative Breast Cancer Awareness Day

Today, March 3, is Triple Negative Breast Cancer Day. It was started by the Triple Negative Breast Cancer Foundation to raise awareness for this aggressive type of breast cancer. About 15-20% of breast cancers are triple negative, meaning tumors do not respond to a receptor-based treatment plan and have more of a chance to recur than other subtypes.

dayton-0516.JPG

Every breast cancer my mom has had throughout her life has been triple negative. We have beat it and survived it. But, this time, this has been a challenge we were not ready for. This diagnosis has changed our life – how we live, how we think, and how we act.

As I’m writing this, I have tears rolling down my face – this being the first time in a while that I’ve cried it all out. Today was a difficult day and it seems like each day is becoming more of a challenge for all of us. Transporting her to doctors appointments at Yale – Smilow Cancer Hospital has become more and more difficult. My patience, strength and hope are being tested in ways that I didn’t know were possible. But, we are still all holding on – holding on for that good day, that moment her personality comes out from hiding behind the cancer, that miracle we’ve been so desperately hoping for.

She has become weaker each day, when we believe she should be getting stronger. Physical and Occupational therapy is done every day – but she can’t lift herself up, she can’t walk, she can’t dress herself. She has always been an independent woman, and I can’t imagine what this feels like for her. She has no control over anything any more – not when she eats; when she gets up to go to the bathroom; when her next doctors appointment is; when she will get ready for bed. And she doesn’t have any damn control over her cancer.

We used to call her a control freak. (I know, that’s harsh, but I swear she enjoyed it.) She used to keep the house in tip-top shape, cook dinner every night, do laundry and iron our clothes each night – all while working full time. She kept track of all of our doctors appointments, medications and needs. I see her in myself a lot of the time. She instilled in me the values of keeping a clean house, being a good cook and being organized. I’m sure my husband refers to me now as the control freak.

dayton-0420.JPG

As a lymphedema specialist examined her arm today, and wrapped it, I thought how much more of the poking, prying, and examining can she take? How much more can all of us take? As I looked at her swollen arm, my heart broke. It broke because as if the cancer wasn’t enough, she has a swollen arm that can barely move and a drainage bag for her tumors that she now carries as her purse. But when you ask her how she is doing, she says fine. Whether she is lying or exaggerating – it shows her strength. She’s strong and that’s why she is the person I look up most to. She carries herself with grace, even though this whole cancer thing sucks.

On our way back to the rehab facility, I turned, looked at her and started to cry. I said, “Mom, what is going on? What are you feeling? Please talk to us.” She didn’t say anything for a few minutes. But then she did and what she said broke me even more. Now, I’m not going to tell you exactly what she said, because I don’t want anyone to get the assumption that she is giving up, but this battle is taking everything out of her.

And, I am scared of loosing my mom. I’m scared of what that feels like. I’m terrified of her not being here for me to call to ask questions, like how long to cook the chicken; or calling her a millions of times a day just to tell her what happened each minute play-by-play. I’m scared of loosing the woman who has made our family so perfect.

So today, and every day that you can, remind yourself of the need to find a cure. Remind yourself that you’re not alone if you’re dealing with this and it is okay to be scared.

And most importantly, remind yourself to live each day to the best that you can.

 

 

 

 

Live. Laugh. Love.

When I was 18 years old I got a tattoo on my ribs saying “Live. Laugh. Love”. It is a sentiment that I believe will guide me through life. It will help to remind me to live in the moment and live for the reasons that truly matter.

But at 18 years old it meant something totally different. It meant to enjoy life by hanging with my friends, to laugh at jokes and to love a cute boy. Shallow, it may have been, but I was young and naive. Life wasn’t real. It wasn’t hard.

As I grew up and matured, and life got hard, I realized my tattoo was something that meant a lot more. It was there to guide me. To keep me on the right track. And when it all clicked, it helped me.

So, what does Live. Laugh. Love. mean? Now, as my family and I are going through the hardest trial of our lives, that $100 dollar tattoo has a voice in my head. It keeps me grounded and it keeps me pushing forward.

Live.

10644821_10154634288360077_5360275468686165459_n

To me living is about having no regrets. Making sure I spend as much time with my mom as possible. Making sure I keep making memories with her. Every day is different, there are good days and bad days, but each day is a blessing.

When the doctors said, time is limited and to be ready for the next step whenever that may be – I didn’t believe them at first. To me, I was still 13 years old giving my parents a run for their money as my teen years started. To me, I was 16 and still laid with my mom in bed at night watching our favorite shows. To me, I was 18, in college and wanting to come home. To me, I was 20, waiting for one more year to be able to enjoy a glass of wine with my mom. (I know I talk A LOT about wine, but how could you not?) To me, I was still a baby who needed her mom to rock her, tell her it would be okay and to kiss her before she fell asleep.

12063394_10156174812760077_4511922669924497089_n.jpgBut, here I am, 24 years old, the roles have reversed and I am taking care of my mom. I am spending every day talking with her, because we never truly know when our time is up. I look at my mom’s diagnosis as a blessing in disguise – a puzzling disguise. Many people have no idea when their loved one’s time is up. But, we, we get to make the most out of every day. I have spent more time by my mom’s side than ever before. I have learned more about her each day – I have learned more about her strength, pride, dignity and love. And most importantly I have watched my parents fall more in love. My dad doesn’t leave my mom’s side and he takes care of her as much as he can. He goes home to eat, sleep and does it all over again.

So, we’re living to the best of our ability. Some days are harder than others, but we have each other. And when I go home at night, I thank God for the day.

Laugh.

We laugh, a lot. We laugh about the changes we’re experiencing.

11223308_10155593826685077_4444846249177362675_n.jpgWe laugh about my dad learning how to do things on his own – except for dressing himself and knowing what size he is. He’s still not very good at that. We laugh about the food my mom is served at the rehab facility. Is it dog or cat food? We laugh about the “friends” she’s making – some may be nuts, but it keeps it interesting. We laugh about the crazy things that happen. But the best part is we laugh together.

In my last post, I talked about my mom’s infectious personality. She has always been outgoing and the loudest in the room. I always envied her ability to walk into a room and command attention. She could talk to a wall and laugh with a rock. She could make light out of a serious situation. She would crack a joke in the middle of an argument and I no longer could be mad at her. She would blow her nose and everybody would turn, look and just laugh. Because really, you HAVE never heard anything like it. I promise.

But I think that’s what has kept me strong 75% of the time is the ability to laugh. When I look at her I see the person who has taught me to laugh at my mistakes, the person who has showed me that life is too short to be anything less than happy, and the person who has told me over and over again to stop being so god damn up tight.

So as we go through these changes, we turn to laughter as a drug to cure our hurt, sadness and fear.

Love.

Love is strong. The love I have for my mom is indescribable. The love I have for my family could never be explained. So love is one of our drugs of choice.

When our worst nightmare became a reality two months ago, all I could say was that I wasn’t ready. My mom is supposed to be there for everything. I call her a gazillion times a day, asking her every question under the sun. I just love her so much. Our phone calls used to be lengthy and we would talk, now they’re short and there isn’t really anything said, but one thing you can hear is the love we have for each other. Things may be different, but our love has only grown.12742494_10156563961110077_5734276570640593030_n.jpg

About a month ago, we were sitting in her hospital room at Yale – Smilow Cancer Center and my dad and I were sobbing. My mom sat there composed and starred at the wall. We were begging her not to leave us any time soon. We were begging God to not let any of this happen. And I stopped crying for a minute. In that moment I realized, as hard as it is for us, it’s even harder for her. The one thing that could bring us through this was love.

I am the luckiest daughter in the world because my parents have inspired me every day. Growing up, I love you’s were said as many times a day as possible. Love was something that flooded through our house. And today, love is something that sweeps my mom’s rehab room. And every day when we talk and when I see her, I say I love you.