Alone

[lauradeanna]

My brother is (was) almost exactly ten years younger then me.10 years and 11 days. My mother went into labor months early and my father rushed her to the hospital while we were at church. I was 10 and had no idea where my parents were. They left without saying anything. I gathered my siblings and sat them down and took care of them for the meeting. One of my mother's friends came up to us after church and told us that we were supposed to come with her. My grandparents picked us up from her house and there started roughly a year of never knowing where we would be staying or who we would be with. 

They life flighted my mother to a bigger hospital and tried to stop the labor. Months later when my brother was born he was taken immediately into his first surgery. We were constantly told by doctors that he was going to die. That he wouldn't make it past a couple months. Not past one. Not past two. Even if he's made it this far he won't make it past five. He came home for brief stints at a time where adults in town were too afraid to watch him. Starting at 10 and 11 I ended up watching an infant with extensive medical needs and my siblings who were three and five years younger then me respectively. 

I held his feeding tube to his stomach when the balloon keeping it inside burst and taped it to his stomach while frantically calling my mom (if it came out he'd have to go back and have another surgery to put it back in). I held him down while we had to burn granulation tissue away from his feeding tube site with acid sticks. I followed him around with his feeding pole so he could crawl and move. I held him when he screamed silently because hed had so many tubes shoved down his throat it had damaged his vocal chords. 

There were days I'd come home from school and my parents would just be gone and I'd care for my siblings just to get a phone call that he'd gone into congestive heart failure again. Still we kept beating the odds. I lay in his bed at night and held him when he asked me to. I read stories to him until we both fell asleep. I watched my other siblings where he took a bite of an apple at two and woke up in the middle of the night bleeding with hives all over his body and they had to rush him to the ER. 

I was there when he found out his allergy had switched from flour to corn and he could no longer eat popcorn and at five he broke down sobbing in my mom's arms because he really liked popcorn. I took him everywhere and even though we had to be immensely careful with him. I took him on hikes. Anywhere. I'd end up carrying him most of the way but never batted an eye at that. I was there when the stenosis in his heart made it so he couldn't walk up the stairs anymore without stopping to take a break. I was there when we'd carry him because he just couldn't catch his breath anymore. I was there for the first open heart surgery. Then the second. Then the third and then the fourth. 

When I graduated and was living away fro home. He called me almost every night just so I could stand at the window of my dorm and tell him what I could see and he'd tell me what he could see on the ranch. He'd come and visit me to play soccer and eat at the canon center and play for hours. When I got married he sobbed and clung to me because for some reason he thought I was never coming back and I laid in his bed and held him and cried and explained that I was coming back. I watched him scream and run after the truck as we pulled away. 

 

He'd come and stay with us. We'd okay games. Walk the dog. Watch TV and stay up stupid late. We did science experiments and would go swimming. He was put on multiple blood thinners and had a pace maker installed. Some things changed but we still did most everything that we wanted. He couldnt jump on trampolines or do contact sports at all but we got into golf and fortnite instead. I was there when he was inconsolable at the hospital and my mother would call and put him on the phone with me to try and calm him down. When he was having bloody noses non stop and they couldn't figure out the correct dosage for his two blood thinners I helped him clean up blood spatter when he sneezed and we laughed at the horror movie he'd turned my bathroom into. I talked to him while he cried because he was scared or in pain. 

He was at my house when he got a phone call from epic games to be invited to a tournament with some other professional gamers. I did homework with him because he couldn't manage to work with any of the other family members. We did nearly two semesters of school work in 9 days and had the absolute best time doing it. He played with my dogs and with my daughter. 

This summer we went camping and had a blast.  We were designing his room and we're going to revamp it for his birthday. His own personal gaming paradise. I have always known that I would live longer then him barring something crazy. However that didn't prepare me at all. We drove to the ranch on the fifth of August. Totally random decision.  We talked and laughed. Played games. My sister carted him around like he was tiny again despite him being 17. We had just kept beating the odds. Again and again. At his fifteen year old open heart surgery they had to replace his mechanical valve. The surgeon was very optimistic until he got in there. Hours and hours later he shoved in the biggest valve he could possibly fit to try and give him more time becuase he honestly didn't think he was going to pull out of this surgery much less another one. 

The valve he out in was too big. It pinched off a part of his heart and out my brother in a near constant state of heart attack. He didn't walk out of this surgery like the others. No bouncing back. He was constantly in pain. It took three months for them to finally listen to my mother who kept telling them something was wrong. Too little too late it had killed fifteen percent of his heart muscle. They went in and corrected the problem using a stint. Damage was done. For two years we dealt with bloody noses and bleeding incessantly. Chest pain. ER trips every couple weeks sometimes once or twice a week. 

Despite this Gabe was always the happiest person I've ever met. Optimistic to a fault. Friendly. Hyper. Always getting the absolute most out of life. The doctors kept saying he didn't qualify for a heart transplant yet. They always said yet. It was on the horizon but we weren't there yet. Even though it was their mistake that put us in the position we were in. 

Thursday the sixth we played fortnite again. We played almost nightly. He was fine. Talking and laughing. He wasn't telling us that he was having chest pain again. He ended up having a catastrophic heart attack at 7:30am on the seventh.  My father looked in on him at 8 or so but it looked like he was asleep so my dad shut his door and left to work in the fields. My mother found him at 9:30. She lost it completely. She did cpr trying to do anything to get my brother back. Life flight came in. They tried. It was too late. 

The doctors had my parents go to the morgue and interrigate his pacemaker. It showed two arrythmias during the night and a catastrophic heart attack that morning. The fifteen percent heart muscle that aS already dead sealed his fate. Even if they had out a difribulator in with he pace maker and had life flight sitting in our drive way they don't think he even would have had a chance . They say he went in his sleep and just drifted off. I spent five weeks at my parents house caring for my mother my grandmother three toddlers two teenagers and my father who had knee surgery two weeks after the funeral as well as the family ranch. 

All of my mother's friends have contacted me to see what they can do. How they should act or talk to my mother. What my family needs. I ended up finding someone to come bail our hay after two weeks of struggling with the machinery that kept breaking and then hauling roughly 600 bales of hay by hand. I worked from 4 am to 11 pm most nights. Teaching early mornings then promptly doing cattle and chickens and pigs until toddlers were up then it was back to my parents house to care for them and my father who couldn't walk or dress or get up by himself. My mother left to go and take care of my cousins and their new baby for roughly a week and I was alone to take care of everyone. I couldn't leave until I was sure my mother could care for everyone. I helped the teens do their homework. I made dinners and baked cookies with them.  I played games with them and helped them to laugh while listening to my parents cry themselves to sleep. 

 I'm home now and I think it's worse. Now that there's no one to "care" for other then my singular two year old I am so alone. I knew that one day he would leave me but I feel so broken. I have other siblings but none that I can talk to. None that I have much of a relationship at all with. My sister left four days after the funeral and moved to another state. My brother is getting married and is completely wrapped up in that. The teenagers are struggling. My parents still cry themselves to sleep at night. The person I would text and talk to during the day is gone. My video game buddy is gone. There's no more homework helping. Nothing. I am so alone and it hurts so bad. My chest feels like it's caved in. Everyone is so focused and worried about my mother that even my grandmother has come to me and asked me to take care of my dad. 

I'm angry. I'm devastated. I'm exhausted. There's so many things that I'm feeling and I don't know how to deal with them or what to do with them. I feel crushed. My chest aches and my throat feels like it's got nails in it. I function because I have to. I can't manage to do most of the things that I love or used to love. It hurts so bad to look at his pictures I've been avoiding them. I don't know what to do anymore. I just want to be done. 

[twink]

Oh my God, I can't believe no one has written to you. That was an incredible sharing of so much love and care, you were his mother for all intents and purposes. You just lost your own child, I am so sorry for your loss.

I totally understand the anger and pain, the exhaustion. You are an incredible power house but even power houses need to shut down and recharge their batteries. Did you end up bucking hay bales in the middle of all of this???  I don't think but 1% of anyone out there even knows what in the heck that means, how much physical energy that takes. Besides your understandable anguish that stands out, what strikes me most is where in the heck is YOUR relief? YOU sound like you were his mom, you were, and people need to be thinking how to help you out too. That schedule and responsibility list is too much for anyone. Start delegating, if people don't like it - tough. You need to stake out some space for yourself to grieve in else you're going to blow at that rate! Teenagers can do chores, if they don't know how, time to learn. And they can do more than their 'share' for now. You need to look out for yourself first and foremost, because once you're on your knees, NO ONE is getting any help. Your parent's friends can volunteer to help them out with whatever they need, rides, cooking, let them step up and you step the heck out for a while. Seriously. I understand you're a giving person but dang woman, take time now with as few responsibilities as you can.

I just lost my oldest sister to cancer (never smoked a day in her life) and it was a very stressful time with lots of 12 hour one way driving trips to care for her, hospital runs, helping her dye her hair, feeding her, loving her. It takes a toll, the worst of course being the heart and loss. I would do everything again and more in a heartbeat including trading places with her. Horrible doctors in the ICU, the usual stories, but the worst is not being able to reconcile with her absence. She was like my mother and we lived together from a very young age, then decades right next door later where we shared breakfast and talked all the time throughout the day, shared everything. All I can tell you is that there are good days and bad days. There are even horrible days. I have not found any magic to fill the hole in my heart or her presence. For me, no, it does not 'get better', it just changes.

She passed in September of this year and I was with her until she took her last breath here on earth. I slept in her room, was at her side constantly. Our mother went into the ICU a few weeks before that and I was like sorry, I can't leave my sister's side, I was cooking her food and feeding her. Choices. Mom bounced back of course like she always does. I won't go into my story too much but I too have anger, am exhausted, heartbroken, and some days (like today) I pace the house like a caged lion. My thoughts ping around looking for her, that comfort and friend, not there, gone, and I too feel very very lonely, completely alone and as if life is never going to be the same or 'better' again. It WON'T ever be the same, I know that. But I do know that the best I can aspire for is to live out what I have left of life in ways of enjoyment that my sister would of course love to join in on. Live in thankfulness and enjoy what I have and can have for her sake, because it all got taken away too soon for her and in a very cruel way... but I can enjoy it FOR her and take some comfort in that. Look at beauty along with her eyes, the love is always constant, it doesn't die, and I know she is fine and well, would want me to move on as best possible and ENJOY what there is to enjoy here on earth.

I work from home which is hard because she was right next door - and now she isn't. I catch myself thinking Oh I have to tell her this, tell her that, then realize she's not here anymore...Our bonds and love have been hardwired into us from so long ago. You with with beloved and I with mine. We can't just rip that out and pretend all is going to be just fine and dandy, or, after a certain amount of grieving we'll just bounce right back. Doesn't work that way and I hate it when people say "it will take time'. Well no. The truth is the truth. My sister got a shitty end and she's not coming back and there's nothing going to take the place of her. 'Time' is not going to 'heal' this wound. But what will heal it is me realizing that I can be more cognizant of what I'm putting off in my OWN life and reaching towards MY goals i.e. everything SHE was working towards or regretted NOT doing/working towards, I can make sure I live out what God's given me and bring my sister along with me as I watch a beautiful sunrise, the stars overhead, take joy in ways for HER memory. I know she is with me, I know she is at peace, I know she is free of suffering now. I can relate to your allergies story because my sister was the same way. Food after food were cut out, a completely restrictive diet even down to supplements, even completely pure and organic type things she couldn't take, even if they would help 'normal' people. She had bitter cut after bitter cut and couldn't live like a normal person for a lot of reasons I won't go into here. 

All I can tell you is pray, keep busy IF that feels right, pray some more, talk to him, give yourself time and space to do nothing, listen to the wind, listen to the birds, delight in small things if you can. Ask for help and assistance, even if that means someone coming over with a plate of hot food you didn't need to prepare. If the teenagers can cook, they can cook for themselves and or for you. Make as much stop for you as possible. People around you need to stop taking your energy for granted and understand YOU'RE HURTING. I listen to music when it gets bad, as long as it doesn't interfere with work. I only resumed working a few weeks ago, and it's minimal. I wasn't working at all or much when I cared for my sister towards the end. I lost over 20 lbs from not eating, I didn't want to eat, so I didn't. But a few people in my life got concerned and starting bringing me food, so I slowly started to eat one meal a day. We are left here on earth, and we miss them. We know there is no one like them in this world, they were God's gift to us and us to them. You made his life so much better in so many ways, so be happy for that, as am sure he is thankful for all the love and care you gave him. You did what any good and loving person would do.

But back to the loneliness. I get it. No one to talk to. My mom is not a talker, not a real good relationship there anyway. My other sister has her own problems. To face this alone with no significant friend or husband = tough. I just wake up and talk to her matter of fact and go about my day, look at her photo at night sometimes and pray for her and her peace again. Some days I wake up already crying, some days I think am tough and all is well knock on wood and then BAM, am crying. Anything can set me off, I never know. I just know that I need to look at my remaining days here on earth and change up what isn't suiting me, my goals, my desires, direction in life. If people are not cutting it, I have cut them out of my life. Same for everything and everyone. I'm going for what I need right now. No excuses needed. My sister fought hard up until the end, I held space for her in this godawful medical system and made them back the eff off, created a space for her to pass with dignity and all she needed to say, said. I know she would want me to live what I have left of my life in the fullest, and I'm going to try and do that. Have taken some steps towards that. But the loneliness....I just put some music on and get to work, focus on the project at hand and pretty soon it passes and am feeling good, and I know that my sister is not truly 'dead', just in another form, that she's still with me in spirit, and that is where I feel my honoring her in memories, happy memories, and even while doing things we used to do together - now alone - brings more peace within. It's a bit bittersweet of course, but I do feel her love with me and that is the bond no one can ever break, even through death. To love is to know joy, so I try to focus on the joyful and bring her along with me everywhere I now go...Wishing you the best there, do what your head and heart tell you you need to do. If it says rest, rest, withdraw, withdraw, trust your own self to guide you through this. There is no one pattern for 'how to get over the loss of a loved one'. None. I ended up writing too much, but I pray you are able to get some rest and sort things out. You haven't lost ALL of him, just the material part of him, it's that bond of love that remains unbroken. I know I'll see my sister on the other side, and that gives me comfort. I haven't truly lost her...I feel her presence, dream of her sometimes, smell sweet flowers, I know she is 'ok' and doesn't want me ruining my own life pining away for her, but gosh I miss her...I just try and find what she taught me in life, and now what she has taught me in death - and it's A LOT!! Take heart my friend!!! 

[lauradeanna]

On 11/10/2020 at 7:43 PM, twink said:

Twink, thank you, its nice to talk to someone. I'm very sorry that you lost your sister.  That is so hard.  You sound like a very strong individual.  Keep looking for the happy things, keep remembering the good things, I'm not always good at it so thank you for the reminder.  Being an advocate in the medical system for someone who is hurt or struggling is very hard so you should be proud for helping to make that space safe for her.  Yes I did go out and buck hay.  Thankfully I did end up getting some help to do it.  It's still hard.  I still feel alone.  I'm struggling with anxiety and feeling down.  There have been good days too though.  I focus a lot on my daughter.  Trying to do things with her.  Thanksgiving was hard, holidays are hard, I am afraid of Christmas, and family gatherings.  I am the oldest, which means caring for the younger ones and I don't have a good poker face honestly.  I think what you said about time is pretty poignant though.  Not putting off life because of what has happened.  I realized yesterday that I haven't done anything lately.  I haven't drawn, written music, worked on language skills, or really much of anything in four months now.  I'm not entirely certain how to start but I think being aware of that might be just the beginning to trying at least.  I also appreciate not sugar coating things.  A shitty end is a shitty end no matter how you try and cover it up.  Thank you for the being honest.  Thank you for not trying to sugar coat things or make them seem simple.  I'm not sure how it gets better.  My husband likes to say, "it'll get better"  "it just takes time".  I haven't seen that.  I'm not sure if "getting better" is something that will happen.  I think it will change maybe.  I don't know if it will get easier.  I don't know if I'm afraid of it getting easier either.  Sometimes I am.  I did finally stick up for myself a little.  It took a couple weeks but when I had a phone call from one of my parents friends asking me to call and handle something for them.  I made a quick call to each of them.  Informed them that they needed to get on the same page then informed the friend that I would not be meddling anymore.  The friend wasn't very thrilled with me however, I felt pretty good for once.  Not having to handle it.  

Cancer is hard.  It is painful for all involved.  It can strip your dignity and for those suffering on the sidelines can make you feel very raw.  I know that watching my brother hooked to monitors, chest tubes, every time that they cracked his chest open was so hard.  I thankfully had my parents advocating for him at the hospital.  That is such a hard thing to do and I know that your sister will have appreciated every second that she got.  Theres a lot of love there and a lot of hurt when you have to watch someone you love all the way to the end. Especially when you know that you can't win.  It's like staring down the barrel of gun because you always know in the end what the outcome is going to be.  I don't have a lot of faith to give you or share.  I'd love to try and uplift you with thoughts of God but at this point I can't.  I can tell you that coming from the viewpoint of an older sister that she would be immensely proud of you.  I too, struggle with feeling restless, or pacing the house feeling like I'm caged.  I have recently discovered that doing something physical helps a lot.  A run, push ups, squats, something that forces my muscles to work and work hard.  You worked very hard for your sister.  It's a struggle but you too need to remember to rest.  Do things that make you happy.  Do things that bring your joy.  I feel privileged to get to hear your story and to get to know your sister even remotely through you.