It was just six days ago that I lost her but it feels like an eternity. Moments go by and I forget that it has happened. I think that she is just out with someone. It all happened so quickly but the hours felt like an eternity. Tuesday night I got her up out of bed and put her in a warm bath with me. I knew the water would feel good to her and cleaning her would help her sleep. As she laid on top of me we tried to talk about things but when she would speak, the words didn’t make much sense and she was having trouble getting words out. I think that for the first time it made her nervous. She could hear herself and she knew it wasn’t right. Stuart helped her out of the bath and she was too weak to use the restroom or have her teeth brushed. We were supporting her completely. She curled up in bed and tried to watch “cats and dogs” with daddy but she was so exhausted. I was still giving her oral meds and pills every couple of hours so we were controlling pain, vomiting and anxiety pretty well. I remember giving her meds at 4 am that she took but when I woke at 6am, she could no longer take the meds. Stuart and I knew that morning that we had turned another corner and I started pushing all meds through her port from then on. When hospice arrived that morning, they confirmed that we had hours. Just the day before we were given a couple of days up to a week, and like that – we lost time. We began to allow people to stop in for a few minutes each and give her kisses and goodbyes. Each one was harder and harder. I just sat there and held her hand as the hours progressed. Her heartbeat was still going strong but her breathing had changed. The time between breaths was getting longer and longer as the day continued. I was able to curl up with her at moments through the day and we would nap together. It felt normal as I curled around her body and allowed myself to relax. We just laid together all day. Each time I had to get out of bed to get her iv meds together, I was scared. I knew that every moment was crucial. I remember falling asleep from midnight to 1:30 in the morning. As soon as I woke, I started to cry because I was so pissed with myself for missing that 90 minutes. She looked so different in just 90 minutes. Family took shifts with me as I tried to stay awake as best I could. Stuart caught a cat nap while my mom and I laid on each side of her. My brother sat in the chair next to us as we talked about anything to keep us awake. I would talk but watch her stomach rise. My conversation would come to a halt at times because I was waiting for a breath. I kept putting my hand over her heart to feel the pounding of it to keep me sane. By this time, her eyes were no longer closing. It made it hard to sit in front of her because they were no longer her eyes. I knew that she was gone but her body was trying to live. It was ripping my heart out that my daughter’s once beautiful face had become so painful to look at. I was able to sleep from 6-7:30 in the morning while stuart and my sister kept watch. I knew when I woke and looked at her that it was it was time to close off our bedroom to family and have Stuart and I lay next to her. Her body temperature was dropping and her color was changing. I kept rubbing her hands, thinking that if my hands rubbed them enough, they would turn pink again… But they never did. I wish I could of sat behind her and just held her but I couldn’t. I had to sit facing her. I wanted her to know that I wasn’t afraid. I was going to experience every minute of this moment with her no matter how hard it was. I think Stuart thought she would go a couple of hours. But I knew by looking at her that it was time. Her breaths became scary.. Each one made me think it was her last. I could see the end of her line resting on the skin above her heart so I just watched it move so slightly up and down to assure me a part of her was still here. Stuart told me that I’m putting too much pressure on myself by not looking away. But I couldn’t. Her face changed. I don’t know how to describe it but it did. I knew that the next breath would be her last.. And it was. I sat there in silence.. Just holding her hand. I pushed away the end of her port and placed my hand on her chest. There was nothing. 9:50am. So many times in her life my hand was feeling her heartbeat and it wasn’t there. I just said, “Stuart.”. And we both knew it was over. I kissed her sweet face, her sweet hands and tears of pain were falling from our eyes.. Feeling like knives cutting our faces. We locked our door and knew that we owed Isabella the privacy she deserved as we got her together. I took off her port, her patches and her bandaids, freeing her from it all. Stuart carried her to the bathroom and laid her against him in the bathtub as I washed her body. We laid her down and dressed her in her favorite silk pony pjs and carried her back to our bed. We spread out her favorite blanket and put her head on her silky pillow as we wrapped her up nice and warm. I kept trying to close her eyes because I felt like it would scare Grant but they still wouldn’t close. Her color was changing quickly so I had to put some pink on her lips and cheeks just so grant wouldn’t notice her coloring. We brushed her hair and folded her hands on her chest. We let our family come in one by one and see her as we sat back, knowing we had truly done all at we could do. My mom picked up grant from camp and brought him home. We took him in to see her and he sat on my lap next to her and cried. He had lots of questions like how we knew she was dead, if she was just going to stay in our bed with us now that she wasn’t alive. So many innocent questions. Questions you never want to give the answers to. Sophia came in and crawled right up in bed with her. “Bye Belle” she said as she gave her a kiss and a hug and then off she went. The funeral home came quickly which was best. Of course the A/C unit on the second floor of our house went out over the last 24 hours of Isabella’s life so by this time in the process, our bedroom was 78 degrees and climbing. Someone told me that they were here to get her and I just kept thinking, please don’t be creepy looking. Please don’t have bad teeth or some cheap suit on with a stain on it. Why was I thinking this? Stuart carried her downstairs and I swore I wouldn’t watch as they took her. But there I was, following behind in my pajamas watching every move. They placed her on a gurney and I kissed her head and told her I loved her. I had to turn away as they put her blanket over her face. I saw the bag underneath and I knew they were going to zip it over her. I had to turn away. When I looked back, she was in the back of a minivan driving away and I wanted to scream. I knew the cremation would be in 24 hours and I couldn’t handle knowing that she was going to be somewhere without me next to her in a building with strangers. But what could I do? Or that in 24 hours it will be like her body never existed. I wish I could tell you what happened the rest of the day but I can’t. And I’m sure you are all wondering why I am sharing such intimate details. It is because I am still blown away that it happened. You know children die from cancer. But to see it is unlike anything you have ever imagined. All the notes of “thinking of you, praying for you..” or my least favorite, “RIP Isabella”.. they all seemed like things I would have said to someone but they feel so weird to hear because the don’t feel equal to the situation If everyone had to witness what Stuart and I witnessed, there would be a cure for cancer. Instead of those comments, it feels better to hear, “I ran around my house screaming and punching walls today..”, or “I thought of Isabella and gave blood today or decided to volunteer”, or “I hit up my wealthy great uncle and he gave a million dollars to neuroblastoma research.”. Those feel more appropriate after what I saw. Because however you picture a child’s life ending can’t compare to what it is really like. I’m haunted by the images of her in my mind. I can’t walk in my bedroom, in my bathroom, I can’t close my eyes without seeing her eyes. I know in time the good memories will replace these but I don’t know when that will start. How can we live in a society that allows this to happen? People are living lives and not looking behind this curtain because if they saw what I saw, they would do everything they could to prevent it from happening. People say God needed another angel. If God can make giraffes and waffles and walmarts, then why doesn’t he just MAKE another angel? Don’t take mine. I know I’m in these stages of grief.. Denial, anger, frustration, sadness. I experience a new stage every hour. We had to bolt out of town for a couple of days because I’m literally tripping over her everywhere I go. Her flip flops, her placemats, her toothbrush, her book bag.. It’s punching me in the face at every turn. I need to clear a daily path when I get home so that I can at least function.
So now here we are as a family of four in a hotel. The kids love the attention and excitement of a trip. But Stuart and I are so quiet. We are with them but not with them. To be honest, the kids are exhausting. We have been crippled by a sick child for so long that we didn’t go all day long with the kids. With healthy kids, who now have your full attention, it is non-stop. Talking, wrestling, cuddling, jumping.. It’s so different for us because one parents was always devoted to keeping things quiet for Isabella. Now that we are playing man on man defense, we are dying. While it’s great, we miss our quiet times because that is what we had for 5 years. Stuart and I crash in bed at night like we have just been with 10 kids instead of 2. It will take some getting used to. Grant tells every stranger that he has a sister that just went to heaven so we have that uncomfortable look at the pool from another parent, or a stranger just making polite conversation and asking how many kids you have or what i do for a living. It all comes back to her . Stuart and I are trying to be sensitive to one other, but at times we are like sandpaper rubbing against each other. When one of us is present in the moment, the other is with her and vise versa. We are feeling so out of place and empty. The blue skies and commotion are allowing me to not see her eyes for a minute so the trip is serving a purpose. But at night I am scared. Scared of that first dream when she visits me or I relive the moment. It only took 2 nights until I had that first dream and have had one ever since. I wake up exhausted because I’m fighting for her all night in my dreams. I don’t know when this feeling will pass or if it ever will. I’m floating along in space doing things, but in my mind I’m still rubbing her little hand, trying to bring the color back.. But the color is not coming back.
Her service is in 2 days. I have been in the front seat for almost five years now and now I want to ride in the back. I can’t make decisions or barely give an opinion. Stuart is amazing, handling every detail of the service as all my friends around me tend to things that need tending to. My closet is a graveyard of pink dresses.. Nothing seems appropriate but I’m figuring it out. Even as I type this I get the chills thinking of Saturday at 2:00 when it all starts. I’m so afraid to see everyone and have everyone see me. I have to hold it together but I’m not sure if I can. I am so broken and I feel like half of me is missing. I still just picture her a couple of months ago at the Make a Wish ball in her gorgeous fancy pink dress with a flower wreath over her head, dancing and singing and carrying her new puppy Lucy and giving hugs and kisses to everyone. How is she gone? How did this happen….
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The Isabella Santos Foundation is a 501c3 that has donated over 1 million dollars towards its fight on pediatric cancer. Your donation is tax deductible and helps to fund Neuroblastoma Research and local charities that support families facing childhood cancer.