God Gives Us all the Time We Need

Yesterday, we celebrated Easter, but also my Mom’s first birthday in heaven. When we laid mom to rest last week, our priest said, “God gives us all the time we need on Earth, to grant us eternal life. Whether it’s 6 years or 64 years, it’s enough time.” After I thought about it, he’s right; although difficult to say; he’s right.

Mom had just enough time. When we saw those who came to pay their respects, it was overwhelming, but that was mom – mom talked to everyone, she was nice to everyone and she truly impacted those who were in her life; she impacted them forever.

Although, mom may have had just enough time to be granted eternal life, or just enough time to make a difference in the lives of those who loved her, I can’t help but feel that I lost out. I can’t help but feel that there wasn’t enough time. I can’t help but feel that just a couple more days or weeks would have mattered.

When mom took her last breath, I was numb. My heart was racing and I couldn’t feel anything. It wasn’t real. Not yet at least. Then, I sat there alone with her for a couple minutes. I had trouble saying what I wanted to say, because there was just so much. But as I sat there and looked at her, she was back to being healthy. She was free from the cancer. And I was thankful for that; but I was angry that to be free from the cancer she had to leave us. And for the days that followed, I had more anger, than heartbreak. I was mad that she was gone. I was mad that I couldn’t call her (even though I almost tried). I was mad that God let this happen. And, I was mad that no one could save her.

Then, that anger turned to sadness. And each day I cry a little more than the day before. Each day, it’s a little harder and each day I miss my mom a little bit more.

But somehow, the day of my mom’s funeral – I was strong; just like her. And people around me said, your mom gave you her strength today. I didn’t believe them at first, at first I thought it was just because I find it too difficult to cry in front of people and I am too proud to show my tears; but as I read my mom’s eulogy I remained calm, strong and stable. And, I asked myself, how is that even possible? My answer was the answer a lot of people gave me – it was my mom.

Now, five days after burying my mom, life is hard without her. In the last five days I’ve grieved more, I’ve found it more difficult to be alone. I’ve found it more difficult to sit and do nothing. I have dreams about her every night and wake up crying. I cry during the day. I cry at night before I go to sleep. I cry when the thought of her pops in my mind. And, I cry because I haven’t had a sign from her, besides an owl the night she passed away. I cry because no one can understand what I am going through. I cry because people think they can. I cry just because.

And when people ask me how I am doing, I say fine, just like my mom always did. Because if I really said how I felt, it would be something like this – I feel like my world is crashing and sometimes I feel like I can’t breathe. I’m jealous of people who have their moms and I’m jealous of people who can call their moms. I’m angry at what people say to me. I’m angry that sometimes I’m forgotten about and people only ask me how my dad is doing. I’m angry that people forget that I am 24 years old and motherless. I’m sad that I can’t call my mom. I’m sad that my mom can’t be here. I’m sad that four days after laying her to rest, we had to celebrate our first holiday without her and also her first birthday in heaven.

So as I end this blog entry, I leave you with the poem that Father Domenic Valla read at my mom’s funeral, The Dash by Linda Ellis:

I read of a man who stood to speak
at the funeral of a friend.
He referred to the dates on the tombstone
from the beginning…to the end.

He noted that first came the date of birth
and spoke the following date with tears,
but he said what mattered most of all
was the dash between those years.

For that dash represents all the time
that they spent alive on earth.
And now only those who loved them
know what that little line is worth.

For it matters not, how much we own,
the cars…the house…the cash.
What matters is how we live and love
and how we spend our dash.

So, think about this long and hard.
Are there things you’d like to change?
For you never know how much time is left
that can still be rearranged.

If we could just slow down enough
to consider what’s true and real
and always try to understand
​the way other people feel.

And be less quick to anger
and show appreciation more
and love the people in our lives
like we’ve never loved before.

If we treat each other with respect
and more often wear a smile,
remembering that this special dash
might only last a little while.

​So, when your eulogy is being read,
with your life’s actions to rehash…
would you be proud of the things they say
about how you spent YOUR dash?

Her Angel Wings

She fought until the end. She fought so hard. She held on and had trouble leaving us. She didn’t want to leave us. And, we didn’t want her to leave. She battled. 

Surrounded by friends and family all day on Friday, she laid there taking her final breaths. She held on. She said her goodbyes to everyone. It was the worst part of it all. Watching her breaths slow down and then become more and more shallow throughout the day. She was comfortable. We talked to her. We all told her how much love she has. We told her it was going to be okay. She was going to be okay – she was going to be healthy again with her high heels on and her big hair did; with a glass of pino grigio. She wasn’t going to suffer anymore. 

And then, as I laid on the couch next to her the clock hit 2 AM and her breathing changed even more. I could tell she was protecting me. She didn’t want me in the room. She is my mom, and that’s what mom’s do – they protect. 

Jonathon held her hand and her nurse watched over her and I went up to bed. 25 minutes passed and her nurse told us it was time. We all came down stairs and surrounded by her family, mom took her final breath. 

I can’t believe she is gone. It’s not real yet. It hasn’t hit me yet. She wasn’t supposed to go. There was supposed to be some kind of miracle. She was supposed to be here. 

I never thought it would happen like this. I never thought I would have to talk my mom into letting go. I never thought I would have to hope for her to let go. That’s not supposed to happen. You’re not supposed to have to talk your mom into leaving you. You’re not supposed to be okay with thinking it would be better if she let go.

Because it’s not better. The only “better” thing is that she is free from suffering. Nothing else is better. It’s worse. 

So at 4 AM, we put the house back together. And as we finished moving the last piece of furniture, we heard her. An owl was hooting; we’ve never heard one here at home; the dogs started to bark and run around the house; and the owl continued to hoot. And we laid in bed, and before we closed our eyes, mom told us it was okay, she was okay – the owl hooted. 

Her arrangements have been made and the thought of the reality of it has never been more painful. 

  

She Wrote a Letter

The last time mom was awake was 7 PM last night. She can hear us and shakes her head when we ask her questions like “Are you in pain? Are you comfortable? Can you hear us? Do you know we love you?”

It’s real today. This is really happening. It’s not a bad dream. This is real. And, I’m not ready – and I keep repeating that in my mind. I’m not ready to let her go. I’m not ready to loose her.

She’s not talking. She’s not eating. She’s not drinking. She’s grunting. She shakes her head. She gets restless. She’s on morphine. She’s on Ativan. And she looks comfortable and relaxed.

She’s not even gone and I miss her so much. Today, I said I wanted it to be over. But that’s not true. I don’t want it to be over, because when it’s over she’s not here. Because when it’s over she’s not coming back. Because when it’s over, it’s over. And I don’t know what it feels like to not fight this disease with her. I don’t know what normal feels like. And it will never be normal.

She’s my mom. She’s my best friend. She’s my everything. I call her millions of times. I fight with her when she tells me I’m wrong. I laugh with her when she says something stupid.

The thing is though, we lost her a long time ago. But, it doesn’t feel like that today. It feels new. It feels like this all just happened. It feels real – and I’m not ready for real. We aren’t ready for real.

We planned her arrangements today. At 24 years old, how do you come to terms with picking out a burial site, a casket, a funeral? How do you do it and not feel like it’s wrong?

This is all wrong. This is not how our story was supposed to go. My heart is breaking and my world it’s crashing.

I’ve been stowik, just like my mom. I’ve taken control of all of her care, just like she would have done. And as I hear myself and see myself, I see I’m more like my mom than I ever thought or knew. I hold myself together until I break. And I break when it’s quiet and I think people can’t see me. I cry then. And I’m sure that’s when mom has cried, when no one was watching.

And now we have nurses who are here all the time. They’ve already become our family. We treat them just like our friends and family. Our house has been full of love and life these past couple of days. And as each day gets worse, our friends and family stay longer, take care of us more, spend more time with mom, and keep us sane.

Today is a week, a week since we brought her home. We made it seven days. And each day gets harder for her and us.

She told us she wrote a letter. She wrote a letter and she doesn’t understand why it’s taking so long to get answered. She hasn’t received anything back and she just doesn’t understand why. Why haven’t they answered her letter?

Mom is ready, and if she’s ready, we’ll be ready. But that doesn’t mean we want to be. That doesn’t mean that we all don’t have a little denial in us. That doesn’t mean that we don’t think about the moment it happens and how it’s going to make our knees buckle.

So, mom, I’m so proud of you. I’m so thankful that for all my life we’ve had such a close relationship. I’m so thankful that you became my best friend during my teenage years. I’m so grateful to have learned how to be the best mother from you. I’m so happy you are my mom. I’m so in love with the person you are. You will always be my best friend, my mom, my shadow, my angel and my rock. Just as you have been all my life. I love you more than words can say.

And, we’ll be okay. Dad and I will be okay. It will be different and for a while it will feel like it’s a dream and it’s not real. But you’ll never leave us. You’ll always be here. You’ll always tell me when I’m wrong, and you’ll always give me the strength I need when I am weak.

I love you so much, Mom.

We’re STILL not Ready for This

It’s like leaving a newborn. That’s how people have tried to explain my anxiety of leaving my mom even for a couple minutes. They tell me it’s good for me to take a break.

I’m by her side every day, all day. I help her go to the bathroom, wash up, feed her when she wants to eat, hold her drink when she’s thirsty, put and take off blankets when she’s cold or warm. I manage her medication and set alarms to remind me when she’s due for the next dose. I coherse her into taking a pill she doesn’t want to take and I handle the attitude when she didn’t enjoy taking it. 

I took a leave of absence from work and day in and day out, I spend my time with my mom. I’m tired. I’m tired all the time. My anxiety is at an all time high and I’ve been experiencing panic attacks daily. Sometimes I feel so exhausted that I wonder how I’m going to take care of her. 

But we have support. We have help. And I can’t help but feel guilty for talking about myself and how I’m tired or exhausted; because it’s nothing even close to what she’s going through. 

She can barely keep her eyes open. She’s been nausea lately and has been dry heaving – like her other symptoms weren’t enough; the cancer now wants to add another symptom to the mix. She’s restless and agitated. She’s clammy and cold. She’s swollen and seeping. She doesn’t eat and barely drinks. The cancer is consuming her even more than before. Her condition changes not daily; but hourly. 

And, we’re still not ready for all of this.

They tell us to start thinking about what she wants, what we want after this is over. And I can’t help but feel that talking about that is wishing her away while she’s still here with us. 

She still tells me she loves me. She still gets snappy with me. She still looks at me. 

But, getting everything in order is part of the process. It’s supposed to help us. We’re supposed to make decisions while we are in a good frame of mind – whatever that means. I can’t remember the last time I was in “a good frame of mind.” I feel like a robot and I feel numb. 

I rarely show emotion, but when I do, it pours out of me uncontrollably. 

I want my mom here. I don’t want her to leave us, but some nights I ask God to just take the pain away. Take the cancer away from her. Make her healthy.

And people ask me, how do you handle this? Do you have hope that pulls you through? My answer, I’m not hopeful – I know the outcome and being hopeful is silly. There is no miracle and even if there was, who’s to say this won’t happen to us again. My faith is pretty much nonexistent; and that’s probably why my prayers aren’t answered. I don’t believe in hope, because hope should have brought us a miracle a long time ago. Hope should have allowed mom to be admitted to a trial. Hope should have never let this happen multiple times.

So, instead I deal with this the best I can. I try to take it day by day and not look too far ahead. It’s easier than it sounds, but this is our reality. This is what we are all living. 

As I finish this blog post, my eyes go to her chest. I watch it move up and down. She’s still here, and for that I am thankful.

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.

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.” 

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.

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.

 

The Good and the Bad

They tell us there will be good and bad days. The good ones will be temporary, but embrace them. 

Yesterday was a good day. We talked, laughed and she resembled herself, she resembled who we want to remember her as, and it was the first time in months. She asked questions and was engaged in conversation – we had so much to talk about, so much I wanted her to hear about. It was a great day and I held onto those hours spent with her all night long.

As I got home last night, I cried. I cried because she was herself. I cried because I was angry. I cried because I don’t know what tomorrow would bring. I cried because I was thankful for my moments with her. I love the good days, I loved yesterday. But, it brings me so much pain. Especially today. I’m hurt, we all are. 

Today is a bad day. She is 100% a different person than yesterday. She’s in pain, she doesn’t feel good and she can’t keep her eyes open. She hasn’t said much and here we are; we’re back to the yes’s, no’s, I don’t know’s and mhm’s. She puts on a brave face with visitors and engages in conversation as much as possible. But it takes everything out of her. And, when they leave she sleeps next to us. 

As she lays next to us, I look at her. I still cannot believe we are in this place. We’re asked what to do if something were to happen, do we leave it to God’s hands? We said yes, and a bracelet was put on her. This was the first time it was real. I look at that bracelet now and pray that God grants us some kind of miracle. Or that we wake up from this terrible dream. 

Is this the kind of life I want to live? I don’t want to be like this. I get weaker each day. I get worse and worse. The thoughts she says outloud are the hardest. My dad and I, we try to be brave, we try to hold back the tears, but they fall and we break. 

They gave her a blood transfusion yesterday and today I swear they took it all back. Vial and vial and vial were taken from her. Test after test being done. For nearly two hours all they did was poke and pry. She was uncomfortable. But, my “big brother” (long story and too hard to explain) was there holding her hand and telling her it was almost over. As I hovered over the nurses, telling them how to put the dressings on her tumor. A half hour of taking adhesive off of her and pulling her skin, to finally getting the new foley bag to stick – it was done.

Strong Sue. That’s who she is, that’s what she is. And the cancer isn’t taking that away from her. The cancer, it’s making us all stronger, even though we feel weak. 

The Cancer will Run

Today, I woke up and my gut was telling me something wasn’t right. I was looking at our wedding pictures, watching our wedding video, watching my mom. We did it, we made it – we made it to our wedding date and we celebrated, we laughed, we cried and we smiled so much it hurt. She was there.

We’re at Yale Smilow Cancer Hospital. Watching my mom sleep, while they look for a bed for her. 

Her team of doctors have now become part of our family. They hug us, call us and take care of us beyond what doctors are supposed to do. They love us, but never as much as we love them. 

  
We sat there and cried. You could see tears in their eyes. They said, this is the end. The cancer will take its course. Chemotherapy is no longer possible. We will keep her comfortable. 

We have been admitted to Yale Smilow Cancer Hospital. As she lays next to me, I’m numb. This can’t be happening, not to us, not to her. We will be here now until they tell us if and when they will move us. The options consist of coming home or going to inpatient hospice. Two options we never wanted to hear. Two choices we never wanted to make. 

She’s my mom, she’s a wife, a sister, a mother in law, an aunt, a friend and a fighter. She’s fought this battle with everything. We all have fought this battle. And she’s tired. We all are tired. 

Just as she has always been by our sides, we are by hers. As she fights the final battle. We love you so much mom. So many people love you. You are an inspiration and a gift.

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.

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.

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.