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Why She Did it…

Day 25 QuoteDay 25
Why she did it…

Yesterday, I told my Mom I’m going to take a break from writing. I want you to write a blog on what the experience has been like from your point of view. Do what I do, have a glass of wine, sit on the back patio for 20 minutes, and write like you are talking to someone. What followed was not a traditional blog.

She wanted to do it, but it was hard for her. When I say that she put 6 hours into it, I’m not lying. She wrote, she revised, she had me read it and she cried. “It’s terrible. It in no way says what I want it to say. It’s just too hard to put into words.” I think she did a pretty great job of telling you her side of the story. But in case she missed a few things, here is what I saw from my point of view.

She was amazing. We received the worst news of our life and she didn’t flinch. She took a leave of absence from work and moved her life into our home. She did all the unglamorous tasks. She changed diapers, she did dishes, she gave baths, she made dinner, she did laundry, and she stepped in when I had to step out. She also lived with Stuart and I during the most stressful time of our life. That task in itself was worthy of a medal.

She put her life on hold. She didn’t get paid. She CANCELED her own wedding, due to a relapse of Isabella’s.

She traveled with me to New York. She kept my mind busy while I had to wait for scan results. She raised Grant. She raised Sophia. She raised me.

She disciplined Isabella, which was a hard thing to do. She kept her in line and knew when to be her Grandma and when to be her Mom. She kept me in line and knew when to be my Mom and when to be my friend. No matter what Stuart and I were going through, she had my back. She would yell at him when I couldn’t and try to fix us when we were unfixable.

When Isabella would relapse, she would be my first call. She would talk me off a ledge and help me make arrangements. I would go to bed that night and wake up to a doorbell ring. There she would be standing on my front porch. She would drive through the night 12 hours to be there. I would break down when I saw her because she always knew what to do without asking.

She was as close as you could be without being right there. Which is a hard thing to explain. She wasn’t making the decisions but she was implementing them. She was giving medicine and catching vomit in buckets. She was rubbing backs and changing bandages, but she was never in the spotlight. She never wanted to be. She would just tell me over and over how we were making the right decisions and that we were strong and how proud she was of me but honestly she was right there along side us.

She took the lead on dangerous radiation treatments when Isabella relapsed in the brain. I was pregnant with Sophia and it was too dangerous for me to be around that amount of toxic radiation. So she stepped in and slept behind a lead wall, allowing her own body to be radiated so that mine wasn’t affected.

She was Isabella’s second Mom and Isabella knew that Grandma would take care of her. Isabella adored her and often times would want to be with her over me because they just had this connection. It wasn’t just Isabella either. She raised Grant. And if you see them together today, it’s a bond that is unlike anything you have ever seen. The love he has for her is close to that of a Mother and it should be. She was his Mom.

She was all I had when I felt like I had nothing. I could tell her anything – no matter how bad it was. Some days I was ready for Isabella to die and she is the only one I could say that to. She would hold me up when I was ready to fall and held my hand through everything. She is the only person that I allow to give me honest feedback in my life because she is the only person in my life that knows the true me. You also never realize how much you want your Mom to crawl in bed with you when you are sobbing until she does it. She never said anything. She just got in bed and let me cry on her.

And in the last week of Isabella’s life, it was painful for me to watch Isabella shut her out. No one was allowed to be with her except Stuart and I in the end. My mom had been there from the first day to that moment and Isabella put up a wall with her. My mom was forced to lay with her only when she was asleep. But she took every single minute she could. She once again took on the most unglamorous tasks like cooking corn casserole when Isabella craved it, only to watch her not eat it. “It’s okay,” she would say to me. “I’ll do anything she wants.” We even made her drive to get Grant the morning Isabella died. We should be shot for what we put her through.

I regret all the horrible things we made her do during those years. But if you ask her, it was the best gift we could have given her. It’s hard to put into words what people like her do for your life. Sometimes you are just given someone in your life that is a true blessing and you can’t imagine your life without them. I seem to shut out everyone in my life these days. But my Mom is the one person that will never see my wall. She is the person I strive to be in my life and what I get from her is the definition of a Mother’s love. I will never fully understand how she was able to give so much to us, or why she did it. But as I grow as a Mom, I start to see that I would do the exact same thing she did because the love you feel for your kids makes you do things you never thought were possible.

My Mom is the best person I have in my life. I love her for what she did for me, for Isabella and my family. She is the true definition of a Mother. I can only hope to be half the woman she is one day.

-Isabella’s mommy

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Why I Go Red…

Day 23 QuoteDay 23
Why I go red…

Every single time we had to tell her, I dreaded it. I found that whenever we received the news of a relapse, it was the first place my mind went. We would walk through the plan of new chemo drugs she would start and when. I would try to pay attention as best I could but I was always waiting for a break in the conversation when they would say, “Do you have any questions?”

Will she lose her hair?

Inevitably, she would always end up losing it. It was the worst part of it for her in the end. I remember when her hair started to fall out initially…she was only 2 ½ years old. We took clippers to it in the bathroom and she seemed kind of excited about the change. The lack of hair transformed her to another child. Now she was a sick child and now everywhere we went, people would stop and stare at her. Shaving her head was never a good experience for her after that.

The first time was the easiest, but each time after that was hard. We would try to sit and talk with her about what is going on but I knew that she too was waiting for that break in the conversation so she could ask us.

Will I lose my hair?

When we had longer periods of remission it would grow back. She could occasionally get a little bow in it or rock a headband without people looking twice at her. I found it funny when people would tell me they loved my little girl’s pixie haircut. Little did they know that the pixie haircut took about a year to get. One February it finally reached a length she had been waiting for; Grandma could curl it. It looked ridiculous really, but she was over the moon about having anything that could be styled like a princess. Of course, just a month later the cancer returned all through her body and she would lose it again.

When we were told of that relapse it was her birthday. We had just had a big swimming party for her and she was finally living a normal life. A call in the car from her New York oncologist that asked me point blank, “Is she still able to walk?” I was stunned by this question because just yesterday she was swimming like a fish in the pool. But when someone asks you that question, you know the news coming after it isn’t good. It wasn’t good at all. The cancer was all through her body once again. Just another time that Isabella was probably living a life with intense pain but continued to live with it instead of complaining.

It was after that relapse that we decided; if she is going to lose her hair, she can do whatever she wants with it until the last hair falls out.

“I want to have red hair like Ariel.” So that’s just what we did.

For some reason it always made the news of her hair falling out easier to hear for her. I could tell she was upset, but after the news set in she remembered our deal. Off we would go to the salon and transform her once again. She would sit in the chair beaming from ear to ear. I feel like everyone around was breaking down about the sadness of it all, but not Isabella. It was hard for me to be sad for her in these moments because she was so happy.

I think most people now think of her with her red hair. For the last three years of her life she was either bald, working a 5 o’clock shadow or Ronald McDonald red. Most of the pictures we have of her when she was at her happiest is with red hair. It’s how I picture her in my mind too.

So each September for the race, I come in and go red in her honor. I sit in the chair and squirm a little because it makes me go outside my comfort zone a bit, but in the end it’s just a silly thing I do because I know she would love it. Sometimes we would go red together and walk out of the salon hand in hand like twins. Now it’s just me – going red alone…but I know somewhere she is loving it because she knows I’m doing it for her.

-Isabella’s mommy

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Why Grant Saves Us…

Day 22 QuoteDay 22
Why Grant saves us…

For years they were frick and frack. They were only 18 months apart so once they could both walk and talk, they were best friends. He grew up knowing her with cancer and knowing that he had to be careful with her. He knew to watch for her line and when Mommy said to give us a minute because we had to change a bandage, he would wait to be held. I can’t tell you how many times we would take him up to the hospital with us to visit her and he would just crawl up in bed with her and watch a movie. She loved to take him down to the snack closet so he could pick out individual fun cereals or a pack or Oreos with milk.

All those times that people made such a fuss over her or all the gifts she received, he never said a word. He was always getting so much attention from my Mom while we were busy with life and death decisions. He patiently waited his turn and knew when I was ready to love on him. He would bring his blanket and crawl up on my lap and suck his thumb. I loved the time I got with him because it was real and genuine and many times it saved me from my own internal struggles that day.

As he got older he began to take care of her too. When she would be laying on the couch, she could ask him to get her a drink, get her blankie, or put a movie in for her…whatever she needed. He never said no to her. So many times he helped me push her in her stroller when she was unable to walk. By the time he was 3 or 4, he was stronger and had her by quite a few pounds so he slowly became the big brother in her life. He could push her in a swing, help her up the stairs and always walked behind her if he was not holding her hand.

He took care of her for so many years. Then one day he stopped.

I would ask him, “Buddy, why don’t you take care of Isabella anymore?” He shot me straight, “She doesn’t need me anymore Mommy. Sophia needs me now.” I can’t help but wonder if he knew at that point that his love was needed for another sister. I’m sure near the end of Isabella’s life, Sophia became a little forgotten and Grant knew that. He was always picking up the lowest hanging fruit in our family.

The last couple weeks of her life, he stayed back a little. He would come in and check on her, asking her quietly if she needed anything. Very few people were allowed in the room near the end. She cut off so many by that time, but Grant was on a short list. He was able to crawl in bed with her and rub her back. By that time, it was nothing more than just bones but he never even flinched. He just ran his hands over the shell that she was and sat quietly with her. I took a picture of that night because it was so mature and loving and amazing. It was such an act of selfless love that he was giving her and a complete comfort she had with him.

He was at a summer camp the morning she died. My mom went and picked him up and brought him in to say goodbye. For the life of me, I can’t imagine what that moment was like for him or how he will be affected by that day forever. He rarely grieves her but when he does it’s the most heartbreaking thing you will ever see. It comes out of nowhere and swallows him whole. I think he has thought about her every single day since she has been gone. I can tell by the Taylor Swift music he listens to at night. She’s an actual real person in his memory and he knows that she died, but he still has trouble understanding it. In my mind this makes his grief harder than all of ours at times.

Today, Grant is the best big brother and son you could ask for. He has this sense about who is the low hanging fruit in our family and he gravitates to helping that person. He puts on songs for me when I lay with him at night and gives me nose kisses on the day that I need it most. For Stuart, he is his friend. He can talk to him about anything and their relationship is so open. He is AMAZING to Sophia and has become her protector. He is her world and I’m excited to know that their relationship is going to become something people will envy in the future. He has even stepped in as the caregiver for our cat, Jake; he was Isabella’s but now sleeps with Grant every night. Yet another tragedy of her death that Grant has picked up.

I know it’s hard to see good from a death. But if you are looking for it, you should look at Grant. He is the most confident, strong, loving and empathic child you will ever meet. Grant is going to do amazing things in his life and I know the majority of them will occur because he lost her. Maybe that is the gift she left for him? She allowed him to take care of her and he let her into his heart. She will always be there inside him in a way that we will never understand. He wants to protect her legacy and he knows all the good we are doing. He is proud to be a Santos and proud to be her brother. Eventually I know he will become the spokesperson for this whole thing, maybe we should let him. Who knows what he will accomplish, but I’m positive it will be more than I could have ever accomplished alone.

-Isabella’s mommy

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Why I Still Trip Over Her…

Day 21 QuoteDay 21
Why I still trip over her…

We’ve done a good job of keeping Isabella’s thing in certain places. I know that if I need to feel her, I can go into her room and everything is just as she left it. After she died I had my Mom do a sweep of the house to get everything of hers in bins. I just couldn’t come home and see her book bag in the closet and her shoes at the bottom of the steps. What a horrible job that was to give my Mom now that I think about it. Even hospice came in and swept her existence away. Every single medication that I had to administer, vanished into thin air before she was even out of the driveway.

I have even gotten used to seeing Sophia in her clothing. She has worn it so much over the last three years that they are starting to turn from Isabella’s clothes, into Sophia’s clothes. Every once in awhile she will get me when she puts on her red boots or wears a swimsuit at the beach that fits her perfectly. Isabella’s junk was always on full display at the beach because she never had fat on her booty to keep it tight around her privates. Sophia’s bubble butt holds things in place and she looks like a gap model in the suits that hung on Isabella like she was a skeleton.

But there are still those times when something happens and it gets you. I can be making my bed and have my toes hit something from underneath. I look down and I see her pink Ugg slippers just sitting casually beside the bed as if she just walked in and took them off before crawling into bed with us. We splurged on those slippers because we did lots of walking in the hospital in PJs. $100 for kids slippers seemed silly but we didn’t’ blink an eye at the time.

Then I will grab a notebook to write something quickly and I open it up to find her handwriting. It’s never some heartfelt note to me that tells me how much she loves me from the grave. Instead it’s a note she is writing to one of her friends or a sign that she is making to hang on her door that says, “No Boys Allowed.” I lose my train of thought on what was so important to write because I get lost in a memory of watching her try to write, as neatly as possible, to all the people she loved when she sat in a hospital bed. “Make sure to give this note to Miss Chrissy for me Mommy!” she would say. I hate to think of how many of those notes I threw away because they just said things like “I love you Miss Chrissy” on them or something so simple.

Then it will be silly things, like looking for batteries and coming across paper tape. Only families with cancer will understand paper tape. When she would get her line accessed, the staff would always want to put this massive clear 4×4 bandage around it to keep it safe. While I appreciate the safety measures, getting that thing off skin is a bitch. Her poor chest was so raw over the years from these bandages that getting it off of her was a long painful process that involved lots of screaming and another procedure she would hate me for. In the end, we would tell the staff to use paper tape that was very soft and maybe not as safe for her line but we swore we would be careful, especially in those times when we were just wearing a line for a blood transfusion or a quick chemo. It would pull gently off her skin and we would high-five on how we outsmarted them all again as we walked out of the clinic without tears. All I needed was batteries one day, and that roll of paper tape slapped me in the face.

The longer it has been since she has passed away, the fewer times we trip over her without expecting it. In the beginning it happened often. But as time passes, we trip over her less and less. The times we do trip over her can drop me to my knees. It literally knocks the wind out of you and you find yourself drowning in a wave of emotions out of nowhere. Red boots, slippers, notebooks and paper tape. These are all things that I trip over that make my heart break all over again.

-Isabella’s mommy

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Slippers

 

Why I Should Be A Hospice Nurse…

Day 20 QuoteDay 20
Why I should be a hospice nurse…

There are a lot of things I’m horrible at. I can’t keep my closet clean for the life of me. I’m not a good cook. I can’t grow a single thing in my yard…I could go on for hours on all the things I can’t do. Do you know what I can do? I can help people die with dignity.

I did it with Isabella and I was good at it. I refused to let hospice in after a certain point because I was in control. I knew what drugs to give and I knew by looking at her what she needed. I knew to keep things quiet and dark and how to touch her in a way that didn’t bother her. I think I did all this because she was my daughter and I had to do it. It was the last gift I could give her to make the process of dying as painless and fearless as it could be. It would be how I wanted to die so that is what I would do for her.

Once it was over, I put my hospice days behind me and made sure to tell my parents, “Look, not to toot my own horn here but when it’s your time, put someone else in charge of paperwork. You want me next to your bed.” It’s not really the thing I set out to be good at in my life, but here it was. I assumed my hospice days were over, until they weren’t.

I got Bailey when I was 22. I had graduated college and had a cat. I walked into PetSmart to get food for the cat and walked out with a dog. He wasn’t a great dog initially. Actually he was horrible, but I married the Dog Whisperer and Stuart turned Bailey into a dog that was possibly the best dog on the planet. He was never on a leash and he never left our yard. He would just sit in the driveway and watch people go by. People swore we had some electric fence but it was just that he was that good.

He was my shadow during pregnancies and he was the one that got up with me for midnight feedings. I would rock the kids as I fed them with him at my feet. The kids could take anything from his mouth or ride him like a horse. He greeted us each time we came home from the hospital as if we had been gone for years and was always so excited to just be with us. He loved us to pieces and we loved him.

After Isabella died it seemed he got older over night. He never came upstairs anymore and made our living room his resting ground. The hair around his face turned grey and his back legs became an issue. Occasionally he would collapse or have a seizure but the doctors would tell us that other than painful hips, he was healthy as a horse. We began having to help him get up and it became hard to watch as he tried to go down the stairs to use the bathroom. He would whine in pain at night as if telling us he was ready to go.

I was so afraid that something was going to happen when Stuart was traveling and I wasn’t sure if I could handle it by myself. Some nights I found myself just curling up next to him on the floor and speaking softly to him about how good he was. I knew the time was coming but I just couldn’t get myself to make the hard decision.
I finally made the call and settled it. I was going to let this dog that has been alongside us for everything die with dignity. I wasn’t taking him into the vet and putting him on a cold table. He was going to die in the house that raised him and I would be with him every step of the way. I settled on a date and started to get my mind right with this.

I brought him ice cream all week and took him on walks behind the house so he could think about chasing the squirrels. His mind wanted to chase them, but his body had other plans. That morning I made him warm cookies and sat with him on the floor as he ate them. I curled up beside him just as I did with Isabella and just kept whispering how sorry I was. He was just thrilled to have me on the floor with him and just panted and licked my hand until it was raw.

When the vet arrived, the first thing he did was call him by the wrong name. It took everything in my body to not show him to the door and tell him to improve his bedside manor. Stuart took over the paperwork and the vet walked us through the process. I laid Bailey’s bed on the floor at the bottom of the stairs and called him over. It felt like I was leading him to his death and he knew it. But he came to me as he always did. He refused to lie on the bed and just stood in front of me. The vet gave him a shot to relax him. Slowly but surely he began to relax. Instead of choosing to lie down, he pressed his weight against me as if to lean on me for support. I finally had to help him get comfortable and shift his weight off me.

Once he let his body settle, I just took his head in my hands and cried. I pet him and rubbed his ears softly as I whispered to him how much I loved him. By this point his head was completely weightless in my hands and I was laying on the floor in front of him looking into his eyes. His breathing finally slowed down and he fell asleep so soundly in front of me. I carefully let go of his sweet face and curled up beside him one last time. I knew that he was okay because of my comfort and I know that he felt safe with me next to him.

I sobbed like a baby wrapped around him.

The vet returned with what looked like an enormous white gift box. I looked at Stuart and he just said, “Why don’t you go outside.” I knew they were going to put him in this disrespectful box and I couldn’t watch it. “Erin, we all end up in a box at some point,” Stuart told me. I got up from him and left the house. I couldn’t watch them take another thing I loved out of my house. I didn’t want another memory of that.

Our house seems to be becoming emptier these days. There is no new baby in the house to replace her and no new puppy running around that replaces him. Instead his ashes sit in our living room just as he did all these years. I tell myself that if there is a heaven, she is riding on his back and laughing. He is right at her feet just as he was mine, protecting her. Two people to whom I have given the best gift ever in the end: safety, love and a death with dignity. How is this the thing I am best at in my life?

-Isabella’s mommy

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