What was she thinking when she died?
My sister was incredible. My sister was incredibly insecure. My sister was driven. My sister was terrified to driven over 30mph. My sister wanted to be a size 2. My sister died a size 22.
Sometimes I’ll be agonizing over a certain aspect of life-usually something having to do with her kids-and I’ll suddenly realize that, despite my tendency to paint my sister as the picture of perfection, she wasn’t perfect. In my position, she would have likely made many of the same mistakes I make now. She would have been unsure of herself. She would be filled with doubt. I can’t beat myself up and expect more from me than she would.
And, in the end, she’s not here. We all just have to do the best we can.
We are moving to a larger house, with bedrooms for everyone. The paperwork is done, and in 2 weeks, we begin the arduous process of moving.
I don’t know what my sister’s widower will think. I don’t know for sure that our finances aren’t going to tank because of this move. Given our interaction in regard to my daughter, his daughter, and his relationship with his ex, I’m not sure L and I will have a peaceful coexistence for the next year.
His ex once said, “He’ll support my daughter and I in the manner to which we’ve become accustomed until I tell him to stop.” Rather, I heard she had said that. In the 3 years we’ve lived together, I have oft encouraged L to cut ties with her in every way possible. I know it’s harder than it sounds. But it is so far past time to make it happen.
But that, my friends, is another post entirely.
For now, please know that we have found a lovely home, with room for everyone, and the saga continues. We are working toward helping my niece and nephew learn how to be independent. It will not be a fast process.
I miss her so much.
And, as usual, I can’t help but think to myself…I hope I’m doing this right.
At the writing of my last post, July 2011, I could not have imagined the ways in which my life would change forever in the following 6 months.
Life with L has continued to change and grow, and I am still blissfully happy with him. He is my best friend. He is the love of my life. He went out and bought me a very expensive diamond ring, and I said, “yes.” We’ll wait until I’m finished with school, but I am so very certain that he is my partner for life. The kids have mellowed significantly toward him, which is wonderful. We’ve all settled into a peaceful existence, moving forward and being respectful and genuinely caring toward one another. All of us.
In mid October of 2011, my sister wasn’t feeling well. She had just earned her master’s degree in special education. This was no small feat, considering 2 of her 4 children have some form of Autism, and she was a single mother trying to put herself through school. Three months after she earned her degree, she finally found a job. She was ecstatic. Two weeks into her new job, her coworker brought it to her attention that my sister’s eyes were yellow.
There was much testing. There were MRI’s and biopsies. There was no cancer, thank GOD. There was, however, significant scarring on her liver of an unknown origin. There was much theorizing about what caused it, but the urgency to talk about getting her on the transplant list, in case her liver couldn’t correct the problem, became the top priority. Somewhere around November 14th, Tammy was approved to go on the transplant list. She was too sick to be eligible to receive a partial from one of us. She needed a liver immediately. The cause was deemed to be zithromyocin toxicity. An antibiotic she had taken for a sinus infection had caused a rare side effect and damaged her liver. I began to feel fear. Tammy, my best friend since birth, was really sick. Really sick.
Liver failure is a devastating illness. My incredibly intelligent, articulate sister could only moan and squeeze my hand. She could no longer make it to the bathroom. Her mind was overtaken by encephalopathy, and she could not piece together coherent sentences. They were doing their best to keep the toxins from building up in her blood, and it was initially successful. November 11, she was talking again. I asked her if she was scared. She said, “A little bit…”
The following Tuesday, November 15, I went to see her after a busy weekend, when she had lots of visitors. She was worse. So much worse. Around lunch time, she was moaning and writhing, and I looked into her eyes, hoping to see some semblance of my sister. I was terrified. My mother and I watched the nurses try to make her more comfortable, to no avail.
She turned her head, and something black came out of her mouth. We grabbed the nurses, shook them and asked what in God’s name is that coming out of her mouth. Within seconds, they realized her blood pressure was droping and they called a code. Her heart stopped. We were whisked into the hallway to make way for the 30 something medical professionals who rushed in to tend to her. My mother, the hardened deputy, started to panic and talk about how we were losing her. I held her hand and choked back panic of my own, telling her how amazing this hospital was and we shouldn’t react because we didn’t know what was happening yet. The cold metal bar in that hospital hallway was the only thing keeping me upright. After what seemed like forever, they had her heartbeat back and she was transferred to the ICU. They were frantically trying to keep her blood pressure up by giving her blood products, and had a few ideas on how to stabilize her, but she had to be removed from the transplant list.The gave her blood products all night, keeping her alive. They balanced her blood chemistry and tried everything they could think of to resolve her crisis.
On November 16, 2011, the doctors told us she was bleeding from every orifice, and they could do no more for her. Her husband couldn’t face the sight of his wife in the ICU, so my mother and I went in to be there for her final moments. My mom and I each held her hand, brushed her hair and let her know we were there. We promised her we would take care of everything, and it was OK for her to go.
And she did.
My beautiful, musical, artistic, intelligent and in all other ways amazing sister died. She left behind a 20 year old son, an 18 year old daughter with Asperger’s, a 16 year old son with Autism, and her baby boy, 9 years old.
Since her death, our lives have been forever changed.
After much discussion, the care of her children with developmental disabilities has now fallen to me. Her daughter lives with us, but we are running out of room, and are looking for a larger place. Her now 18 year old son with Autism will hopefully be coming to us this summer. Tammy’s husband has a strong bond with the youngest, and, while he is not completely against letting me have him, would prefer the little guy stay with him.
My mother, my father, and I are working together to help decide how best to care Tammy’s children. The irony that I am having to learn as I go to care for the children of the sister I have lost, who had a master’s degree in special education is not lost on me. My mother and I didn’t have much of a relationship before Tammy’s death. We are now very close.
During my sister’s memorial, L had a chance to meet my entire extended family. And friends, he shone like the diamond he is. He stood by my side, offering help, getting ice, running people around, and holding me when I lost my shit. He is the first man my mother has ever approved, and she has done so overwhelmingly.
Life is so strange.
There is so much to do. It’s overwhelming. I feel very lost sometimes. But I will do this.
I can hear my sister asking me, “Are you scared?” A little, Tam. A little…
It seems to me I spend a great deal of time trying to ease my children in the idea of responsibility and strength as their own advocates. It also seems to me that the stronger my efforts, the more resistance I meet.
My son? He’s still convinced that every time something happens, it’s someone else’s fault. I get that this is how we think in our 20’s. I try to remind him to take responsibility for his part and release the rest, but I’m usually unsuccessful.
The youngest is a typical 14 year old. She wants to buy everything and go wherever she wants without anyone telling her no, but she does tend to accept when I put limits on her. Getting her to work around the house is like pulling teeth, unless she wants something. I suppose I get that.
The 17 year old is at a crossroads, and we’re butting heads constantly.
Her expectation is that I support her completely, including her car insurance, until she’s 18 next month. I’m not financially capable of doing this. I scrape by, but not without a lot of help from my guy. Usually I maneuver what I can to pay what’s due and sigh heavily when I don’t have what’s left to pay, knowing that at some point, I will have more money and be able to make up for everything I haven’t paid. L makes three times what I do, but is still paying half his salary to his ex. I completely disagree with this, but it’s not my place to say. Still, he ends up supporting more of the household financial obligations than I can. It’s just the way it is right now, and he doesn’t complain. My beanie (the 17 yr old) told me this morning that, since my ex and I agreed he would just send me a check and *I* would pay the phone and insurance, she and her sister have been discussing what I’ve been doing with that money. You see, I canceled her car insurance, after warning her for 7 months that if she didn’t get a job to pay for it, I couldn’t continue the payments. She felt this was unfair, and then suggested that the child support was not being used to support the children, but rather given to my “sweetheart.”
It doesn’t matter how hard I try to explain the finances to them. It doesn’t matter how they feel about L, me, or my efforts to better myself. It doesn’t matter to them that, for the first time in my life, I am never late on my bills. To them, I am being unfair.
I bought my first car myself at age 19, when I already had 2 children. Nobody helped me. If I couldn’t afford insurance, I didn’t drive. I find it absolutely ridiculous that someone would think otherwise.
On one hand, I can completely understand the frustration of having to do “chores” such as dishes and vacuuming. But to honestly believe one shouldn’t HAVE to do them seems selfish and naive. I have to wonder what on earth is happening to the kids these days that they believe it is our job as parents to buy them everything they require until they decide they want to try to do it themselves. And I honestly have to wonder if their view of the world is my fault. I thought I did better than that.
Am I now battling against what I had previously instilled in them? Or are they watching their friends, who drive cars bought by parents and insurance paid for without them having to work, and wondering why THEIR mom doesn’t do that?
I have to believe that there is only so much I can do at this point, and hold my ground. I don’t have time to wallow in the sadness that I’ve somehow failed as a parent.
I have shit to do.
I’m beginning to feel like I need to say something about the standard view of Fibromyalgia and Chronic Fatigue by patients who suffer from it. As a patient of Fibromyalgia, I can tell you that my view has changed substantially over the course of my illness, but these days I am beginning to see a pattern that some might consider controversial.
You see, most people with these conditions, myself included, tend to avoid physical activity and use medications to combat pain and fatigue. We have long supported the research community’s findings that these illnesses are the result of a chemical imbalance in the brain, not because we are sedentary. While I am still certain that there are significant changes in our brain chemistry, I am becoming convinced that a sedentary lifestyle does more harm than good to patients who suffer from these chronic conditions.
How dare I suggest that we need to put the chips down and get off the couch. Seriously. But that’s the truth. Muscles in horrible condition will hurt more than muscles in good condition. Stretching is good for Fibromyalgia, and strengthening muscles will reduce the pain in the long run. Yes, you will hurt more at first. Probably a LOT more. God knows I did. But after a while, I noticed I was taking less of the medicine for breakthrough pain, and my pain number was significantly lower. At this point, I’m feeling like I could go back to workouts at the gym if I chose to. And that’s saying something.
Yes, I still need pain meds. I think that’s the part I will never completely escape. But I feel better. I feel stronger. And I’m not willing to believe anymore that less is more when it comes to exercising my aching muscles.
When it comes down to it, I’d much rather be hot and in pain than drugged up and slug-ish. (get it? Sluggish? BWAHAHAH!)
Yes, it’s been a long while. A very long while. About a year or so, I think.
And yes, the blog is in the process of redesign. I think it fits my new way of viewing myself and the world around me. Much has changed, and most of it for the better. Such good things happening now, and while I haven’t been able to keep up with you all, I have missed you very much.
So let’s recap. When last you tuned in, I had finally given up on my marriage of 12 years, after pouring my heart and soul into it for the last 5 or so. I had a brief emotional breakdown with much counseling. I moved in with the man who had scandalously been my lover for 3 years, off and on. My divorce became final. I started back to school for the first time in 20 years, in pursuit of my Bachelor’s degree in nursing.
I am incredibly proud to tell you that I have achieved a 4.0 for every term since returning to school, and am set to graduate with my Associate’s degree (transfer degree) in June of 2012. I will then be headed to nursing school. It has not been easy, but the long nights and huge assignments I obsessed over have definitely paid off. I’m beginning to see all the things I have that nobody will ever take away from me, and my confidence in myself has increased a hundred fold. While engaged in my studies, I discovered that, not only do I love Spanish as a language, I also love the people in the Latino community, and will be pursing a minor of Latin Studies in addition to my Bachelor’s of Sciences: Nursing.
Yo gano (“I am winning”).
I am still cohabitating with L., and while we are not always perfectly blissful, I can say without a doubt that he is the perfect partner for me. We are passionately in love, and take the job of caring for one another very seriously. The fact that I still smile when I fold his underwear tells you how new we still are, but we are both confident that this is the life we want-a life with one another.
There have been several bumps in the road; my children “hate” him (rightfully so, when he was partially responsible for their lives changing forever, but unrightfully so when he reminds them to empty the dishwasher), neither of us completely agree with the other’s style of parenting, and we are both so scarred from our previous relationships that we tend to dig our heels in and refuse to give an inch, after giving so many miles. We have tense discussions, then take some time and regroup, coming back to the conversation with the intent of solving the problem in a way that works for both of us. Which is entirely NEW to both of us.
There are a few issues that will never find common ground between us; He will never be ok with how far I will allow the kids to go before I put my foot down, and I will never be ok with him still financially supporting his ex, though they haven’t been together in over 2 years. In fact, it’s all I can do to keep from starting a fight every time he hands her half his paycheck. But…this is something I have no control over, and if there’s one thing I’ve learned, it’s to let go of things I cannot control.
Overall, things are spectacular. I am happy, healthy, and loved. I hope this post finds you experiencing the same.