Words Left Unsaid: Part Three


I stood in a room, at the funeral home, in Idaho. I wasn’t sure what to say or how to act, in the presence of other people… the “real family”.  Alone, I went up to the body and gave him a hug. I laid my head on his chest and pretended that he was breathing. I looked at my biological father’s hands, that held me, when I was a baby, and tried to look past all of the stitches and makeup, covering up tragedy. I held one of those pieced-together hands, while I tried to tell him everything that I could, because I wanted my first and last conversation with my father to be meaningful. I took off my necklace and put it in the pocket of his shirt and told him not to forget me; it was all that a fourteen-year-old could do, to say good-bye. The silence of an unrequited “I love you” was deafening, as it tore the veil that separated my innocent childhood dreams of being someone’s princess, someday, from my new reality: the girl who met her father at his funeral.


Words Left Unsaid: Part Two


She held my hand and wept and apologized for time that she couldn’t get back and time that she didn’t have. She was dying and I could only offer peace, in the form of lies. I reassured her that the house was clean and just the way I remembered it, from sixteen years ago. When she apologized for her son, I told her that I admired my biological father’s adventitious spirit, from the stories I’ve heard and his letters, to other people, that I’ve read, and that I grew up okay, before and after his death; I told her that she did a good job and how I always understood that she was just busy. I told her that my half-sister was on the mend, that she was living a good life, free from drugs, and that my half brother was a saint. As I gave her the medicine that took the edge off of her pain but caused a loss of precious time, she cried for work left unfinished, until she forgot that she was dying. I held her hand and massaged the fluid away from the joints of her swelling arms and pretended not to notice the hair that had fallen out in clumps around her head. She talked about how we would all spend time together and she would meet all of my kids… I looked into her big brown eyes, a reflection of my own, and told her about how nice that would be.



Words Left Unsaid: Part One

As I laid on the table, waiting for the third person to try to start an IV, for a CT scan. The nurse studied my arms, checking for a vein that wouldn’t roll or hide. She studied my tattoos, as they all do, and her eyes became misty. I knew that she saw beneath my ink… She saw the scars, from my teenage years, that I chose to hide under a pretty flower, exchanging one stigma for another; a life of judgement and being considered alternative, verses a life of judgement for giving in to despair. I held my breath as every time I’ve ever been judged, for that arm, flashed before my eyes. She felt down my scar and said, “I like your tattoo.”

From my post-surgery recovery. Catching up a little bit, after fatigue kept me away. 


Recovery- the action or process of regaining possession or control of something stolen or lost.

I have so much to write that I have contemplated how to begin to talk about this past month, for the past week. Post-surgery fatigue was really rough this time.

As one of my old friends used to say, “How do you eat an elephant?”… “One bite at a time”.

When I last posted, I was getting ready to have surgery. My co-pays had taken my entire check and, when I wondered how we were going to move forward, Luis was tipped an amount that covered our current needs.
Most of the time, people do not remember that foggy time, after surgery, when the anesthesia begins to wear off and nurses take notice that the patient is awake. I woke up asking if the doctor was able to finish; a hysterectomy was the best outcome that I could expect. I remember the full room, the older gentleman, next to me, who was grumbling in pain, the beeping of the machines, and a surprised nurse telling me that, yes, they were able to proceed. I passed out, after praying a big “thank-you”, knowing that I did not have cancer and that the large amount of pre-cancer, that I did have, was gone.
Surgery took longer than expected, because I had complications that the surgeon did not anticipate. In my eighth pelvic surgery, I had a lot of granulation tissue, chronic inflammation, enlargement, adhesions, cysts, and bleeding that was difficult for the surgeon to control. I made it to a room, six hours, after surgery began. All of my family was there, the whole time, even though it took so long. My dad was in the room, when I woke up (again) and so were flowers from my work.
Luis was so happy that he went home and dumped the grape vodka down the sink, in tears. We had this thing going that we would either have grape vodka or wine, when this was all said and done. I did not expect that he would actually go buy both, but he really did and it was sitting on my dresser, when I left for surgery. The significance of the grape vodka was that I had the, completely risk aware, spar of my life, after I had grape vodka, one evening (seriously, I still smile and hurt a little bit, when I think about it). It represented another fight. Wine is something that I associate more with a celebration. I take the time to learn about wine and enjoy bottles and brands that I can’t afford to have on a regular basis or to drink to become drunk… that being said, that sample bottle of cheap wine, that Luis and I shared, was probably the best that I’ve ever had.

Recovery was not easy but the people in my life made it so much easier than it could have been:

Luis is the best husband that I could ever wish for. He is an angel who takes me at my worst, and makes everything better, and makes me a better person. He works hard and gives me the space that I need to work hard as well. He sat at every appointment, even the lady ones, and asked the questions that I could not formulate. He is always there for me to lean on and he helped me through this past month, with grace. He is the best friend that I could not have dreamed of, if I sat down to create a list of qualities that I could wish for in a best friend.

Our friend drove me to the emergency room, when Luis was at work, when we found out that I had retention, after surgery and it was a medical emergency. This friend and his fiancé amazing people and partners in crime (and fandoms… and martial arts).

My Sunday school class brought us dinners, into my second week of recovery. We go to church in the nice town where I grew up, in the church that I have attended since I was in eighth grade (I like to see my mom). I was so afraid of people seeing where we live that I had a little panic attack, every time, even though the food helped so much and I was very grateful. The six of us live in a poorly insulated, three-bedroom, one bathroom, two-closet house that was purchased, as a kit, from Sears, sometime around the 1950’s. Despite professional pest control, we still get bugs in our house if a neighbor moves out, because the people in this area really can’t afford an exterminator (that is a luxury). This house allowed me to go to graduate school and allowed Luis and I to start off as a couple. I did not start a job at the salary that we were anticipating or that is consistent with my position and education, and work started out very slow, but I know that I am where I am supposed to be; that also means hanging out where we are for longer than we expected.
We had not had a couch for a while, because we got rid of quite a bit of our furniture, in anticipation of a move that we were unable to make. I could not really monitor the kids, when Luis went to work. It hurt to sit in our wooden chairs and I really had nowhere to hide the catheter bag that I had to carry around (and was embarrassed of) until Christmas (I have what they are thinking might be some sacral nerve damage); I had to stay in my room. A very sweet couple donated a very large sectional that all six people in my house can fit on.
Money was tight and getting tighter by the day, without me working, and just the cost of the holidays and extra medical expenses. I was on the verge of having to borrow money to get the kids some gifts for Christmas and I had bills that I had to set aside for the bills that keep us going. I did not tell anyone, because I was embarrassed. Our Sunday school class left an envelope, with Luis, with money that caught me up and allowed us to get the kid’s presents; it was pretty much the exact amount that we needed. I put on these, terrible, blue and white patterned, wide leg, hippie pants, that I could hide a leg bag in (for catheters) and Luis and I went to the store, two days before Christmas.

When I pray, all that I can say is “thank you for the grace that I don’t deserve” and for help sharing the grace that I have been given. I won’t lie, I have a little bit of survivor’s guilt. In this journey, I have met sweet women who did not have the same outcome. I’ve met women who woke up, after the biopsy, and heard that they could not have surgery. I listened to a woman, with small children, who is currently in hospice, and will not see her babies grow up. I’ve met women who pray to be candidates for a surgery that removes part of their colon, their bladder, uterus, fallopian tubes, ovaries, vagina, fascia, and lymph nodes in their pelvic region, because it means that they might get to live. I saw a girl, who has since passed, beg women to get their annual exam and beg parents to vaccinate their children, because the types of HPV that cause cervical cancer are now, pretty much, preventable diseases, if girls and boys get ALL 3 shots before they are ever sexually active. 80% of the population have HPV, at some point in their lives; most are never affected, some require observation, some of those people require curative biopsies, some of those people will not have clear margins, some of those people need further treatment or already have cancer, some of those people die.


Sometimes, God Sends the storm:

another good qupte

If you read my last post , I was kind of at a loss. I did not get to pay my personal bills last month or to get anything ready for Christmas, because I had to save $707.00 for my surgery. I have only recently begun full time status, at my place of employment, my husband was out and not feeling well, after his surgery last month, and I was told that I would need to pay what my insurance would not cover, prior to my surgery.

On Thursday (today is Sunday), I was told that I actually owed the hospital $797.00 and the doctor $707.00, and the anesthesiologist $48.00 , when I asked about where the $90.00 came from (as my card was being processed); that amount was more than my paycheck and my husband literally had $44.00 in his account, after paying our major bills.

My hopeful post turned into a hopeless (really) post and I was really angry and sad. Maybe God thumped me on the head for saying that I would do it all on my own and did not want help… “ok, let’s turn up the heat”. All that I could do was pray and try to find the most pragmatic words to use when I would have to ask my family for help. (I am a “Type A,” INTJ,” kind of person who has to rehearse what I will say, for hours, if I have to talk to someone about a personal failure.)

Three hours after I published my blog post, my husband came in and showed me his tip count, for the night. Someone had tipped him $3,200. I could barely pay the amount that I had prepared for, and not without sacrificing other responsibilities, and I couldn’t pay the final amount that I owed. It took being broken, again, and a small miracle, again, for me to quit being so stubborn.


On Friday, I received a personal email from the creator of the AAC program that I adore. I was star struck (my heros are not typical), her name is on the big book that has been my AAC Bible.

The program that she and her husband developed is about using the foundation of a relationship with a client, to facilitate joint engagement, and conducting therapy in a way that is naturalistic and client driven; very much in line with the values of the clinic that I work at. The actual program, “Words for Life”, is based on motor planning and not so much “symbol teaching”; every time that a client touches a symbol, they get the reaction that that symbol represents, even if it is not the intended reaction. The symbols never change and become like a keyboard or a dynamic phone screen; we don’t have to think about where the “A” is on the keyboard, our fingers already know and we really don’t have to think to navigate a phone application, after we do it a couple of times; this reduces the amount of cognitive effort required to perform tasks.

I had written in reference to my client who I have felt a connection to, from before I knew her. I refuse to give up on this one, despite a little bit of aggression. I feel like the aggression has a lot to do with her inability to communicate, outside of school, where she has a speech generating device. I only had a printed/static board, in my clinic, and this sweet lady offered to send me a code for the app (a $300.00 app) or even to let me borrow her personal device. I did not want the responsibility of having her $7,000 device (the one I am trying to get my client) but I did take her up on the code, and I thought that I was going to cry, I was so happy. I don’t have an iPad or a child-proof case but I am working on it and I am so happy that I am going to have a dynamic program, the exact same one that my client uses at school. I am praying that everything happens, in a way that it needs to, in order for insurance to get her own device.

On Friday,  I was smacked around again, but I blocked better. She also threw pink lemonade at me and all over the room. After she cooled down, I handed her a towel, she dried off, and I began picking up the pieces of a puzzle that she had thrown. I did half of the puzzle and started wiping off pieces and handing them to her; she put them back correctly and I talked about how good she was using her device. Soon after, she was pointing to good and smiling. I spent half of the session talking about how good she was and she was good and performed well. At the end of the session, I modeled, “finished” and explained that she usually needs to go to the bathroom… she put her finger right on “need” and went… I have never worked on “need” that is so abstract, I have tried for “help” and “go”. She does these little things that make me believe that she has more going on that people give her credit for. At the end of the session, we were as close to hugging as two introverts care to be, and it felt great.



Serenity Within the Holidays: An attempt to return to a state of mindfulness. **updated**

It has been a little bit since I have written. I had this long post ready to publish and I decided not to; I am just going to talk, I think.
The post that I had originally written was about how much I don’t like Christmas and how stressed out I am about the money I am expected to spend over the holidays. I actually really like the Christmas season. I think that I just don’t like all of the extras that go along with it. I love all of the lights and beautiful displays. I love Poinsettias and Christmas cacti. I love tradition, food, and the feeling of warmth. I love Christmas cartoons and the nostalgia of it all. I love seeing old friends, and get-togethers, and New Years. I love that, in my husband’s culture, my birthday is the eve of the last day of Christmas, “Three Kings Day,” and it is the day to give children gifts (I totally wish that my own children would adopt this).
That being said, as someone who has trouble reading people, it is really confusing when others are nice once a year. My oldest two children are as, or more, awkward than I am and they need an example, so I am going to play it off with a smile.
I still feel sick over money but this is just a rough patch, in a rough time of the year to have one. I feel guilty about having to have surgery because I have to pay a significant amount, more than I would ever spend on Christmas, prior to it. I just have to remember that everything passes and harder times can feel, well harder, around the holidays. I’ve requested that Christmas gifts be donations towards my surgery; gifts of reduced stress. I just need to work it out that surgery is covered, necessities are in stock, and the kids are covered for a smaller Christmas, with knowledge that I will make it up…I started working full-time, last week, and my husband has recovered from his surgery, so we will catch up, but not before the holidays are over. as long as my pathology report, taking place during my surgery, is good and I will not have to stop working for cancer treatment.

Maybe my prayer is to be graceful, over the next month. Is it bad that I don’t want to be less prideful? I have had to have so much help, before, as a single parent, with cars, with my children while I was in graduate school, and in the flood where I lost so many things that I valued, that I just can’t ask one more thing of one more person. I need the serenity to accept the things I can’t change; courage to change the things I can; and wisdom to know the difference.

I am worried about going back to work too soon, because I know myself; sometimes, I spend half of my sessions lifting kids up because that extra sensory info and very physical play can work wonders, for example, I had a boy today, who is mostly non-verbal, pointing up and saying “up go!” when I lifted him by his feet. Those kind of things are what makes me tick, even if I get beat up in the process.

I have been very contemplative, since I received a pretty good beating from a 13-year-old, as big as me, last week. My sessions with this client involve giving her a means of communication, so that she can really interact with others in a non-aggressive manner. figuratively, she knocked me off of my high horse and I had to decide what I am willing to take. My first thought was that I was finished with her but that only lasted for a minute. Everyone else has thrown their hands up or they have been afraid. I am trained to fight, probably, should have blocked, and I think that I can take it; that is just where I feel I am being led. I have had five sessions, in which this client has communicated with me, using various forms of alternative communication and she navigated an appropriate system, on a speech generating device, beautifully, for me and her mother, when I had a representative bring one in. Number six was rough but I gradually moved towards her with the AAC and she communicated with me and we had a language session for 45 minutes, after a pretty aggressive episode. I couldn’t leave it there; not where this client may have had the opportunity to equate hitting me, herself, or others, to leaving I therapy. I really want this to work because this could change this family’s life, if she is able to communicate with them, the way that I have personally witnessed. At the end of my “WWE” session, this client looked at a stimulus page that I have that says, “I feel” in two separate symbols; she took the “bad” symbol off of my board (mine are Velcro, to access for demonstration), and she lined it up perfectly and pointed to each word. On her communication board, she pointed to “feel” and “bad”, I think I would take another hit over the head to see that again. I am so worried about leaving this one, when I have surgery. Another clinician will be filling in and I am the only person that she has seen, at my clinic. I am praying that she will communicate and not hurt anyone; I have really kind of invested myself. It is kind of funny that I am also afraid of returning; a well placed hit or kick might not be so safe. If you are reading this and have ever judged parents by the way that their kids act, please remember that some children are born with disorders that require outside help, and they may have the sweetest, and most isolated, and judged parents, anyone has ever seen

Like I said before, my surgery is on Wednesday and I literally have no idea which surgery I will have, or how I will wake up, or what news I will wake up to. “Jesus take the wheel.”

** Updated segment** I thought that two bills with similar amounts were the same (maybe one was updated with adjusted insurance final totals).. they were two separate bills.  As my debit card was being processed, at my pre-op appointment, I found out that one was the hospital bill and the other was the doctor bill. I am kind of at a loss… I got paid and had *an amount* in my account; the amount that I have to have before Monday + my the amount that I paid the hospital is more than I have and my personal bills, Christmas, and living expenses are not accounted for.

I am up late worrying and I know that worrying does not help anything. I feel a little bit defeated because I worked so hard to make sure that I would have what turned out to be half of what I need and our medical bills feel out of control with my son’s emergency appendectomy, in July; my husband having surgery and having to be off work and my recent accumulation.. and my student loans have to start being paid next month and I am going to be able to pay my personal bills three months late, it looks like. Can Christmas just wait for me to catch up?

Faith and fate

“I have been driven many times upon my knees by the overwhelming conviction that I had no where else to go. My own wisdom and that of all about me seemed insufficient for that day.”
― Abraham Lincoln

“Do not be afraid; our fate
Cannot be taken from us; it is a gift.”
― Dante Alighieri, Inferno

Today, some people where talking about times that they felt led to do things that might not have been within their comfort zones. I think that my entire life has been like that… at least the past nine years.

I was comfortable in Oklahoma City. I moved because I wanted to prove that I could make it on my own and I was failing, as privately as I could, out of sight. Making it on my own included being left alone with children, a small apartment to unpack, no phone, and no car, when my water broke early, with my third son; my ex (boyfriend, at the time) was getting high. I waited tables, in bad breakfast restaurants, overnight, and was often drunk people’s verbal punching bag. Sometimes, I only made enough to buy a pack of diapers… it really was not the best part of town. I was robbed at gunpoint… twice and in the middle of two gangs drawing guns on each other, after I moved to a different part of town. I worked at Denny’s through my last pregnancy; many times, until I could not stand. I could not count on money, from my ex’s end. My water broke at just a little over 26 weeks, after I had worked crazy shifts. I could not get hold of my ex and I drove myself to the hospital. In the hospital, they thought that I was medically stable and nurses left my room after I called twice; I knew that something was wrong and called again and said, “somebody has to check me.” Sure enough, I was not in active labor, but Alex had a leg through, and I had to have an emergency C-section. He was 2.2 lbs. and I was a wreck. My family had my kids/ so that my ex could work/ and he did not go to work because he was stressed. I was calling my job, finding out when I could go back, before I left the hospital; Alex stayed in the NICU, for ten weeks, and I had to go back to work 12 days, after my C-section, to make rent. My incision became infected, but I had to keep packing it and going to work so that I would have money to drive to the hospital. I served pancakes to people who looked down on me because of my job and gripped about the fact that they had to tip, while I was only standing because I could not sit and be able to get up again. It was about that time that I decided that I could not stay in that position forever and really live. It might have been the most selfish thing that I have ever done but I called it quits with the children’s father and he kicked me out of the apartment… but I was allowed back in to “babysit”, after I had worked all night. My mom gave me one chance to say that I wanted her to pick me and the kids up. I said, “no” and hung up the phone. I immediately knew that I had chosen wrong and called back. My children and I stayed in one room at my mom’s house, for a little while, and I was faced with facing everything that I had left to  prove that I could make it on my own. I was only 23.

My mom suggested that I go to college. I was terrified. As someone who is probably somewhere on the spectrum, myself, I was always very smart, but the social parts of school were terrible, and I always had to fight to keep my head above water. One year, I was in the yearbook for “Biggest Airhead”… I was not dumb, I was just awkward, and had trouble trying to figure out what to say. I always tried to be nice and it usually got the best of me. I was fired from one job at a Mexican restaurant, for being a lesbian… I actually just did not want a girl who asked me out to feel embarrassed, so I accepted and planned on explaining that I was flattered but straight, away from the other people that were in the room. It was a set up (this was 2002 and pre-social media). I even legitimately failed Algebra. I am also dyslexic and directions mean nothing to me, marching band was a nightmare, and I would do things like get to intersections and not be clear about the lane I would be turning into. Going back to school sounded like a terrible idea but I felt this push to try anyway and it was just a “Jesus take the wheel” moment. I got involved with a group that helps “at risk” students and they helped me fit in and with tutoring. I just needed a little push and I passed and tutored college algebra, honors comps, chemistry, and anatomy and physiology. I graduated with my A.S. in pre-nursing and was excited to find a program so that I could get in and out. I got lost at Oklahoma State University trying to find another college’s nursing program (they shared a campus).

I asked for directions and this lady pulled me in and asked me if I had considered speech pathology. “Umm, no, I am Captain Awkward,” but I listened to her and did some reading while I was in the building. In the parking lot, I called my mom because I felt like I needed to go into this other field; I explained that the classes were night classes and I would need help with the kids and that it would take me longer to complete my education. I have no idea why she agreed but she did. I graduated with my B.S. in communication science and disorders, in 2013.

I had great grades but not a lot of anything else and I had trouble getting in to graduate school. I worked as an autism paraprofessional, and got married, and kind of wondered if I was wrong in what I thought I was supposed to be doing. I applied around to graduate schools and, on a whim, applied to Southeastern Louisiana University; there was no way I could really go, I just wanted to say I was accepted, I think. Some schools were trialing distance programs, I kind of hoped that they would be on that wagon. I really loved my job with Tulsa Public Schools and I really loved the kids; that is what I wrote about in my essay for Southeastern.

One day, I got a letter from Louisiana and I had made it in to graduate school. It was bittersweet and I threw it away. I did not have a way to go all the way to the Gulf. My husband had just began to make better money at work and the kids were established here. My husband took my letter and was happy for me. I did not know what for and he told me that I should go and that we would work it out. It was a very sad time; I left my job, my home, my husband, my kids, and everything that was familiar. I cried leaving and I almost turned around several times, on that ten hour drive. I asked God several times if I could just go back and keep that acceptance letter in the trash. After I made it to school, I knew that I was supposed to be there and I gave it my all, because I should not give anything less, if so many people sacrificed to make a way for me to go. I counted weeks until I could see my husband and kids again and lived for those ten hour, 600 mile trips home. Sometimes, I made multiple trips per month and listened to recordings of my classes and notes. I learned to be more patient and that I was never more than half a day away from home.

On my way back to my last semester, I got caught up in the awful floods in Baton Rouge. I was moving back with all of my belongings and computers… with everything that I had done in my classes because it was my comprehensive exam semester. I also had my two cats. As my car filled up with water, I went for my cats who were in a dog crate, in the back of my car. Strangers helped save my cats but I was in a shelter, soaking wet, no shoes, no way to contact my family, no car, and a lot of hurt pride. As I walked on rocks, in my bare feet, I felt like God was telling me that I was going to be fine and I laughed at the notion. My husband and my grandfather were there by morning and we stayed at my program director’s house. She said that I should stay and finish and I thought that she was crazy too but I entertained the idea. People emailed me their class notes and I decided that I would stay and try. My husband and grandfather dove into my car and found my clothes and I washed them at another professors house. I saved less than a third of my clothes but my friends came together and really helped me get the things that I would need. I worked really hard and I passed my comprehensive exams and my children and family were there when I graduated.

I had some difficulty finding work when I made it home. I came across this autism clinic and they were not even advertising that they were hiring. They offered the lowest salary that I have ever head of someone in my profession getting, for one year, and then a better sounding figure. That it where I am at and I am kind of sure that I am where I am supposed to be. I hope that it is; I really like my job. I have no idea how I am going to pay for this surgery, coming up, and Christmas, and my student loans are getting ready to hit, but I have been getting extra hours. Luis is doing well, after his nose surgery, and almost 80%.

I still wonder if I will crash. If everything was a big mistake and I misread where I was supposed to be. I have only blindly followed by faith, understanding that nothing is guaranteed, or even deserved. Everything has worked out for good, so far, though. I was listening to “Hallelujah,” by Leonard Cohen, covered by Jeff Buckly, and I began to worry; this guy (Jeff) worked hard and made this great album, with songs that many people don’t even know that they know, today, and he died. One album. It is really frustrating to have to deal with multiple biopsies and not knowing, in general, if I will wake up from surgery without a uterus (best scenario) or to be told that I have cancer and will need further treatment. I feel like I have had to do everything that I have done to get to where I am supposed to be and I am here… I  never had a chance to become comfortable, because I went to the doctor, the month that I made it home for good.  I have a husband that loves me and who takes care of me, I am happy. I have great kids that are growing up, closure with my past, a good job doing something that I love, and future abilities to do things like get a house in a better area. and to take my kids on a first, real, vacation. I worry about that “one album”.  “Jesus take the wheel.”

Back to Leonard’s Version (last two verses):

You say I took the name in vain
I don’t even know the name
But if I did, well really, what’s it to you?

There’s a blaze of light in every word
It doesn’t matter which you heard
The holy or the broken hallelujah


I did my best, it wasn’t much
I couldn’t feel, so I tried to touch
I’ve told the truth, I didn’t come to fool you

And even though it all went wrong
I’ll stand before the lord of song
With nothing on my tongue but hallelujah