You take your 2 year old daughter to the Pediatrician and she basically tells you what a pathetically sad sack you are! Ok so she didn’t say “wow you really are pathetic” but she said “usually I tell my patients to think it can’t get worse, it can only get better when you’ve hit rock bottom, but apparently you’ve hit rock bottom and are still getting kicked around so I am not going to say that”. <sigh>
So today’s post is the last year of my life in review and then at the bottom of my post I am telling you all why I have decided to let it all go:
August of last year my mom has surgery to fix an injury she received at work, she’d been trying to fix non-surgically for several years. They couldn’t decide if it was her back, her hip, or both, but they knew they had to do something. So they went in and said she’d demolished her hip. They repaired it, and she was back at work in a few weeks, but still suffering some pain,later we would find out she went back too soon.
September of last year we got a call telling us my great grandfather would not live through the weekend. We rushed to Page, AZ to say our goodbyes, the kids and I went mostly to drive my mom who was still recovering from her surgery. He lived until October…
October of last year Joe’s best friend died of a heart attack teaching a class in Bogota, Colombia, he was 39 years old and had just had a birthday, he left behind an 8 year old son and 2 year old daughter. The same day my great grandpa died.
I think it was that same month we found out my great aunt had terminal liver cancer, she was diagnosed after returning home from Page, she wasn’t feeling well the whole time she was in Page but she ignored it thinking it was nerves, the flu, whatever, etc… She opted against chemo and there is a post a page or two back about her death.
December of last year my mother-in-law had to have a back fusion we knew was coming but were hoping to be able to put off for a time. After her release from the hospital she was coming to my mom’s house, but my mom’s hip/back continued to get worse and worse, and they decided something was very wrong, so they scheduled her for a surgery to find out why her hip wasn’t healing, unfortunately it was scheduled a few days after my mother-in-law’s surgery. So… they went in and found she’d destroyed the hip repair. The doctor said he couldn’t fix it, he did his best but it was so bad she may be permanently disabled. She went back to work too fast, but she was very careful and still it tore the entire repair apart. So for the next few weeks I was running two households, trying to be at my mom’s to care for both my mom and MIL. My grandma and grandpa came to help but my grandpa was feeling very poor and frankly hates Wyoming and hates to visit, but he was in failing health and couldn’t be left alone. So I ended up with a 3-4 day reprieve while they were here, and all of this happened the week before Christmas.
After returning home my grandpa continued to feel really horrible, in early January he collapsed and my grandma called the ambulance, his gallbladder was horrible and had to come out. It turns out his gallbladder had been really poor for some time which we knew, but his liver enzymes were insanely out of whack and he’d been a heavy drinker his entire life so they thought he had liver disease and they couldn’t operate on anything or he’d die. When they went in to take his gallbladder which had become very emergent they found his liver to actually be in excellent shape as well as every other internal organ. It turns out for over a year his gallbladder had been causing all of his health problems and if they’d taken it out originally… but of course you just can’t know these things. After his gallbladder surgery he developed pneumonia and had to be put on a ventilator. I again drove my crippled mother to the side of a relative who was probably dying. The next 10 days were absolute torture. I can’t even talk about it now, but I think there’s another post in here somewhere about it. He lingered with MRSA pneumonia for 10 days, his gallbladder was so bad he had stones in his intestines and colon, they basically had to re-section his bowel. He was lucky to have been alive at all, let alone to make it out of surgery. But by the 10th day it looked like he would pull through, he never woke up but his pneumonia was clearing, his lungs were clear, he wasn’t struggling to breathe when the ventilator’s oxygen was shut off, we had hope. For 10 days we were given hope, and then the next day les hope, and the next day more hope. By the 11th day they told us he was dying, they don’t know why, specialists were consulted but no one could figure out why he was dying. He wouldn’t wake up, he had lost reflex reactions, and he was starting to go in to multiple organ failure. We think he had a stroke but we didn’t opt for another CAT scan because at that point it didn’t matter what was the cause, he was just simply dying. So we took him off of the ventilator and pulled all life support. What they don’t tell you is when a person dies while their system’s organs shut down one by one, they don’t go immediately. If they’re not fully brain dead they don’t just pull the vent and they die. They die slowly while each organ shuts down. It’s horrible. You feel like you are personally killing them by pulling them off of the life support. On the 3rd day after we pulled the support and went to comfort measures only, we were told it could be another week or more so my mom and I decided to come home. My great aunts had flown in and were there with my grandma and we really just needed to hug the kids and be home if even for a few days. When we were 30 minutes from home we got the call he’d died. We were home a day and turned around and went back with the rest of our family in tow.
After that there was somewhat of a lull followed buy actual good news! My uncle (my mom’s brother) and his wife were expecting a baby. My aunt has Addison’s disease, for a long time they wouldn’t allow her to even consider getting pregnant. But they’d stabalized her symptoms and were managing so allowed her to go off of birth control. She’s 35 and my uncle is 42 so they weren’t really trying for a baby, they figured their time had passed. My uncle has 3 grown kids from his first marriage and they were content to live without a baby, even though my aunt had longed for a baby for years. From the jump she was high risk, she is on high doses of prednisone to control her disease, but for all intents and purposes she should be able to deliver a healthy baby. At her 16 week ultrasound however, they found a defect in the baby. She had a hole in her heart. The doctor basically said “she will not make it to term, I’m sorry”. But my aunt and uncle refused to give up hope, the baby was growing and moving. They decided to place it in God’s hands. The baby continued to grow, and seemed healthy although the doctor believed very strongly the hole in the heart was not her only defect. My aunt opted against an amnio, she said whatever will be, will be. She wouldn’t abort, so why kill themselves agonizing over the potential disabilities their daughter would face?
That brings us to September of this year. Labor day weekend my 14 year old God-Daughter (Terra’s daughter) fell very ill. She’d been feeling tired and faint and had actually passed out once, over a couple of weeks but other times she seemed just fine. Friday of that week she was very ill, and jaundiced, very weak, and felt she would faint. So Terra took her to their local doctor. Upon examination and after a ton of lab work, they discovered she had a red blood cell count of 5. Normal is 15-20. She was dangerously low on blood. They sent her to Rapid City Regional Hospital’s pediatric ICU to see a specialist and be treated, she was looking at a blood transfusion or two. I left here at I think 12 AM and arrived in Rapid City at 2 AM. Terra and I sat up all night watching her and waiting for some news. She has auto-immune hemolytic anemia. Her body is killing her red blood cells, it feels they are all carrying a diseased anti-body and when the cells hit the spleen they are destroyed. What we didn’t know was what caused it. AIHA itself is the disease, but there are many reasons someone has AIHA. They couldn’t transfuse her because any transfused blood introduced to her blood under a microscope was immediately destroyed by her white blood cells. They put her on extremely high doses of prednisone which can destroy some of the anti-bodies and keep her body from destroying so many cells. By Monday she was fairly stable and it was decided she could go home but needed to see a specialist to figure out why this was happening.
Monday, Terra got the call from the specialist’s office in Minneapolis and they had to be there to see the specialist on Wednesday (I think this is the time frame). I decided to drive them, for a few reasons. 1. She’s my God-daughter 2. Terra’s good car was broken down and they were running on a car that wouldn’t make the trip but was a stop-gap until they found a new car 3. Terra has a lawyer’s mind and when it comes to law she is the BOMB. I on the other hand live with a registered nurse who’s been doing this for 20 years and I have picked up a lot of medical jargon along the way. I also read a lot, and worked in admitting at the hospital, and even considered going to nursing school. So I have the medical mind of the two of us. So we left Tuesday and made the drive to Minneapolis.
They did not find a sub cause for the AIHA, 80% of the time they don’t. I won’t get in to all of that, but it’s all on Terra’s blog at the above link. Heaven is being treated with large doses of steroids and is doing very well for the most part.
While in Minneapolis on Thursday Joe called to tell me he’d lost his job. Friday the police called me to tell me my house was burning down. Terra drove all night Friday night to get me home. I was a wreck, before we could leave I had to be treated for “shock” and “panic disorder” thus the drugs that keep my nightmares and random breakdowns to a minimum.
So you know how that’s been going I won’t go in to all of that at all. My grandma was home for a day after sitting by my dying aunt’s bedside and caring for her for months, and she came here to help me. She is my rock, ALWAYS. She holds me while I cry, she lets me lash out at everyone and everything and helps me heal. She is by far my best friend and had she not come I don’t know what I would have done. My mom is permanently disabled from her above mentioned surgeries. She can not work, and she can barely grocery shop. She just can’t hold us all up anymore. But my grandma somehow finds the strength and the will to carry us all, to fix us all, to hold our hands and either get us through or watch us go.
She was going to go home on Sunday, she felt I was stable enough and we were doing well enough and she hasn’t been home fo rmore than about 2 weeks since before my grandpa died, she was home sick and on top of everything else ended up catching the sinus infection/crud everyone was passing around here. Then she changed her mind and was going to leave on Tuesday. On Tuesday at 3 AM she decided to stay until this weekend, to make sure we were in our house and settled and that I was stable. (Honestly I haven’t been all that stable in 3 weeks), I have good days and bad. While my grandma was here my aunt and uncle had seen a pediatric cardiologist and another pediatric specialist. The baby did have a hole between her ventricals but it was not life threatening. It was actually something they wouldn’t even consider fixing until she was 6 months old. She might be small, and she might be weak but she wasn’t really in danger of dying for any reason they could find. The best news we could possibly get!! She would have to start her life on Prednisone because she would have had enough in utero she’d have to be weaned off, she would be small for that reason, probably premature, and probably weak, but she did not have any life threatening disabilities, nor any visible signs of down’s syndrome, brain malformities, etc…
My mom and grandma went baby shopping!
Wednesday morning my uncle called, they were at a routine check up, they couldn’t find a heartbeat, the baby was kicking but no heartbeat. They decided to do an ultrasound. She kicked once and died. She was due the first week of November, we don’t know what happened after the news we’d gotten just last week, but she didn’t make it. So my grandma went home Wednesday to be with my aunt and uncle. At 7 months pregnant she had to deliver the baby, she was of a viable age and had to be delivered. My aunt had to go through labor and delivery to deliver a baby they knew was already gone. She was delivered at 2:30 this morning and she was perfect. No down’s syndrome, no physical, visible deformities. She was even of good weight, but for some reason she just didn’t make it.
So as you can see, it just never seems to stop for us. It just keeps on coming and my biggest fear is one day my grandma will have had to hold us up too much, will have seen too much death, will have had more heartache than she can possibly stand. But at this time she’s doing OK and just helping my aunt and uncle deal with their loss while worrying about us from 700 miles away. Oh, and by the way, today is her birthday. So grandma if you read this, Happy Birthday to you!!
This is why the pediatrician didn’t feel comfortable telling me things can only get better because we’ve hit bottom. I can’t blame her, but I have to say, for some reason I am done worrying about what’s coming next. I am done with the negative, I am done with feeling sorry for myself, for my family, for all of us. I can’t live like this anymore, so as of today I am only looking forward and I am only expecting positive. I just can’t bring myself to wonder what’s next, because in my heart I believe we’ve been kicked around enough and we are done. So from today on things WILL get better, I am mandating it, I am ordering it, I am screaming it. No more, we are done. Nothing else bad WILL happen to us, to my family. I WILL NOT allow it. I think we’ve been an easy target long enough and I am telling you un-equivacolly we are done. I have made my peace with God, the universe, karma, whatever the Hell you want to call it, and we are done. So whatever force has been so determined to keep us down is now powerless, I swear it, because I have decided to put my foot down and say, absolutely NO MORE!! It’s probably fully arrogant of me to think I have that power, but I am telling you, today I feel as if I do, and that’s all that matters.