Thursday, November 14, 2013

Take that, CP, pediatric daughter can take you!

So we had our clinic visit at Shriner's Hospital yesterday, and the verdict is in...Hannah rocks. I sort of knew this but it is great to be told. I really struggle with accepting acknowledgment for doing well as a parent, because I am so full of self defeating thoughts about my abilities to take care of kids with better than expected needs, but the truth is, I have done well by her. Dr. Mike said so! In fact his words were "best job ever!" But enough of me and my issues, she is rocking it all, so much that we continue to not brace her during the day so she is not inhibited in her voluntary movements. We will continue the night stretching brace and knee brace to make the AFO effective when she might otherwise bend her leg during sleep. I was given the advice that ... Are you ready? ... We need not go to PT but once a year to have an eval and get ideas for activities but life is the PT Hannah needs right now, so I should encourage her to be as active as possible, continue taking walks in our hilly neighborhood, continue going to the bounce facility regularly, continue with dance and any sport or activity that she enjoys, continue to have a big variety of footwear (especially cowboy boots) and so on. We will continue with OT visits and activities, as her hand and arm still need more development but my treating team doesn't think surgeries or bracing will be needed for her gait and mobility. Ahem. Yep, she rocks. Of course we could have increased spasticity with a growth spurt but really the leg spasticity is still dynamic spasticity only.  Basically, no need to borrow trouble and look for negative outcomes. And PT in life rather than at the clinic.

Oh, happy day. Thanks be to God, Early Intervention, the Angel of PT, and an awesome kid. My heart is full.

Monday, November 4, 2013


So recovery from trauma, from grief, from anything probably always goes only in fits and starts. One of those sayings we should all drop is that it gets a little better every day, because that sets us up wanting things to get a little better every day and when it doesn't we add it to our stockpile of things we suck at.  We should instead say "every now and then you'll notice that the hard stuff gets a little easier to bear" and leave it at that. Today I learned that my neighbor passed away, just over three weeks after his cancer diagnosis was made, and leaving a daughter in my age range and his wife of fifty years grieving, as well as many other family members and friends.  I was able to run over and give comfort and say nice things but I came home and was rattled and had to have a brief lie down.  When I realized I was not just mourning him and the loss of a father and husband, but also feeling some ugly nasty feelings I don't want to have, I had to get back up. Also, the phone rang and I am trying to actually take calls and stop avoiding people and things, so I answered, to hear from a dear friend who checks up on me now and then.  This friend has the distinction of being one of my few friends who has had the awful experience of losing a child, and having had the trauma fairy come to wave her PTSD wand at her family.  I told her how I'd gotten rattled and she told me that she lost her footing a few days ago when she learned that a neighbor who, like her, had previously lost an adult child who died in a random fatal traffic accident, has now suffered the same again, now losing one of her teenaged twin girls in a head on traffic accident and the other remains in very serious condition.  This mom is driving back and forth from one city to see her injured daughter in the hospital and to see the other at the morgue in a different city.  I can't believe it even though it is surely real.  The horror that family is going through astounds me. And I can't believe that you can survive the worst of the worst, get on the other side of the abyss, and it can happen again.  I can't go through mine again, I know I can't.  So, say a little prayer for moms in distress.

Saturday, November 2, 2013

Goodness, that was a lot of extra

I keep hoping my energy is on an upswing, and my mood right behind that, but then it swings back down.  I don't need to tell you this, but do try to never get hit by a personal life Tsunami, because it really is an ass kicker to come back from in so so so many ways.  I am tired of not being who I used to be, tired of being tired, tired of having to lie down and read something soothing after paying a bill or taking a phone call or having a thought.

Today, I am tired by the normal!  Progress!!  Still tired by other stuff too, abnormal as it may be and always will be, but I did more this week for parenting purposes and did not 1) lose my sobriety, 2) lose my faith, or 3) actually let the house get any dirtier.  Success!  The things I did this week that were extra were making a yarn wig for Raggedy Ann (tips to follow), making a poster for my daughter to be Star of the Week at Kindergarten (turns out in my mid 40s I still can't cut out a star free hand, but now I have Google and I can find a template to use, lickety split), attend and assist at 2! class parties, decorate the front porch (I did not however, carve pumpkins, and I tell myself that PTSD means I shouldn't use a knife that sharp while I still have this shaky hands thing going on. Spilled cofffee is one thing, knicked knuckles is entirely another). And like mt depressed people who weigh too much, I ate as many Reeses PB cups as I could, and a smattering of other stuff, so of course I am tired.  Perfect for that extra hour of sleep.

Friday, November 1, 2013

Friday Haiku - This is Halloween Hangover Town

We were late to school
So was everybody else
Sugar is tiring.

School parties were fun
and the Parade was more so
Wonder Woman rocks

Raggedy Ann flops
Now I can make a yarn wig!
But I am wiped out.

Another "first" day
to be gotten through with grief.
I did it, barely.

Friday, October 25, 2013

Congratulate yourself today - you didn't give up!

Already the post title sounds trite, I know, but it is really what I want to say.

You did it! You didn't give in to the stress, the worries, the anxiety about the known and the unknown that lie ahead for you and your family, and the to-do lists, and the unending needs of those you provide for, and the fact that the long and winding road looks really long sometimes. You didn't decide that it was too much. You didn't let negative thoughts and self doubt sink your boat. You didn't feel the weight of the burdens you carry and decide to put them down. You kept going. You did your many, many jobs, and you went looking on the internet for help and inspiration and ideas from people who get it. You deserve to feel good about that. I think you should feel good about being you today.

Brought to you from a gloomy person trying to claw her way out of the abyss, who today, sees joy ahead, and hopes you do too.

Tuesday, October 22, 2013

Talk to me, TED

Today, after spending an unhealthy amount of time reading about the people in that religion that the guy from Grease and Saturday Night Fever and also the guy from Risky Business were in, I decided to stop looking at distressing things and instead, focus on the positive.  I went to TED.  When I didn't go to bed, because I couldn't sleep any more, at about 4:00 a.m., that is.  I love TED!  Here are the things I learned. . .


will help me feel better, from the guy who made the 1000 Awesome Things Blog.  Better still if I can pull out a wedgie when no one is looking.

Tell me your favorite TED talks and I'll tell you more of mine.  People who don't sleep well look at the Internet a lot, and I bet we can help each other on this one.

Spousal suicide / PTSD/ scorecard

Number of times my arms went numb yesterday - 3
Number of times I flinched at sounds and light flashes at a kids movie Sunday - countless
Number of times my head went zingy yesterday - 3
Number of people in my family of 3 who graduated from counseling - 1 (not me)
Number of IBS events - more than I care to say
Belief that my daughter will be OK - almost 1

Friday, October 18, 2013

Your child was diagnosed with MCADD but will live a full life, with care

When we got the confirmation of my daughter's MCADD diagnosis, we had an answer for the crisis she had gone through, but I was terrified of being able to keep her alive. Five years out, she is indeed alive, and MCADD was not a death sentence. A butt-kicking experience, but doable.

Most children will be diagnosed through the expanded newborn screening, done shortly after birth through the heel stick blood tests. The nurses who have practiced for years often refer to the test as the PKU test, since for years that was the main illness diagnosed by newborn screening. Now, most states have expanded their newborn screening for metabolic disorders, and MCADD is about as common as PKU, and the second most common genetic metabolic disorder.  Loads of kids are diagnosed years after their births, when a younger sibling comes up positive on the newborn screening and then all other kids in the family get tested, and the family learns they have been successfully living with MCADD for years.  Regardless of how you learn about it, being told your child may die from a regular average every day cold, is indeed terrifying. The scariest day is when the parent goes to the internet to learn about the new presence in their lives, and they find websites describing the tragic stories of children dying when the condition was unknown. Armed with the knowledge that as long as your child never goes into a serious low blood sugar state, she will live, you pick up the pieces and move on, fear in your heart.

My daughter's stroke and cerebral palsy were caused by the MCADD factor, but are certainly not a common outcome for MCADD.  Hannah was not a gifted nurser, and her blood sugar went down slowly after her birth, so that 2 1/2 days after her delivery she experienced a metabolic crisis.  If we had a normal delivery she would probably have died and people might have called it SIDS, but since she was born by Cesarean section, we were still in the hospital.  Nurses charted her low temperature and took her from my room, her blood glucose was measured, they tried to feed her, and measured her blood glucose again, and again, and eventually charted "glucose IV stat" but it was not given for another 20+ minutes.  She became fully hypotonic, with absolutely no muscle tone, and experienced a metabolic crisis.  Doctors were baffled by her condition, gave antibiotics and monitored her closely, and about six days after she was born, we were given the MCADD results. At the time, no one expected there to be lasting complications, and the stroke was not diagnosed.  I had enough to worry about, being told that a few hours delay in feeding could kill her and that fever and vomiting might be cause for a hospital admission to avoid a hasty death. We came home without her, brought her home a couple weeks later, and I pumped breast milk for the next 18 months, since she never was an adept nurser.  I was terrified, I wondered if I should quit my job to stay home with her or try to get a nanny rather that putting her in day care, and I wondered how I could keep her alive if a world class medical facility nearly couldn't.  Three times I have taken her to the pediatric ER for testing and a glucose IV and three times she started keeping food down while there, recovered, and has never had to be admitted to a hospital for her MCADD condition.  Now that she is bigger, fasting is less risky, provided she doesn't fast for long or have other illness of a significant nature.  Day care was fine, in fact, given her CP, it was a huge part of her successful development to date.

If I could tell parents of kids with MCADD anything, it would be - you are good enough to do this. You really, really are, so don't waste any energy with fear and self doubt - just be mindful and do your best.  If you get here because you are in a similar situation, please email me for support. If you struggle with your fears of being adequate, get help.  If you are trying to be supermom, don't hurt yourself to do it.

I don't want to blame my meltdown on my daughter, but instead on how I reacted to her condition - but having a daily fear like this contributed in a big way to self medicating myself into a pain pill addiction that could have robbed my daughter of her mother altogether. Not cool! Not good parenting! I hope that other parents are smarter than I was, and don't let self defeating beliefs, the depression and anxiety that can come with family illnesses be part of why you sink under the weight of what is on your plate.  I wish I could go back and tell myself that indeed I was good enough to care for this child, that I was up to the task. History has proved that I was, so far, yet I didn't invest appropriately in my own health and well being and I very nearly blew it.  Having other family issues come along means I can no longer cushion the blows with pain meds and anxiety drugs, so now I must do it all sober, which is both harder and easier, and now I need not engage in further beating myself up for daily acts that affirm my negative beliefs. But I wish I had forgiven myself sooner and in a less gut wrenching fashion.  So my message to other parents who have similar burdens to carry, take care of you, so you can take care of the kids.  You deserve to be proud of what you do to serve your kids of every flavor, and to be good to yourself.

Wednesday, October 16, 2013

Today I believe I will get better, someday

Some of the craziest sounding PTSD symptoms I have involve the sensation of skittering on my feet while my mind is racing as I try to get things done.  All of the body stuff is just plain weird but certain things are so nonsensical I don't like to even describe them, so saying I feel I am skittering out of control when I just need to do an errand is the best I can do. I know and am conscious of the fact that I am not required to go one hundred miles an hour but I feel as if I should and as I think of the steps involved, to say, get groceries, I feel mounting tension and so I just stop and do less or nothing.  This explains why my house looks so bad, the do less feature, and also is part of why I seem to do nothing compared to pre-PTSD /sobriety life. I am going to check with my therapist on Thursday but I think the unease I feel that sort of paralyzes me is really about doing too much, the perfectionism trait common to addicts/alcoholics/women who work and deal with special needs kids and a million other things. All this therapy I have been getting and I just figured out I need to give myself permission to fail. Bugger.

Monday, October 14, 2013

Friday Haiku - Psoriasis, Death, and Taxes

O, psoriasis!
Bane of my adolescence,
I have not missed you.

Next time you come back
I will punch you in the throat
and I won't feel bad.

But for now I will
hide my spotty self in lots
of baggy clothing.

And think of all the
weird baths, lotions, creams and pills
you brought to my life.

I can blame taxes
getting filed with a dead man.
Why ever, you came.

You're a right bastard.
You actually suck out loud.
Please take a long hike.

World Mental Health Day came and went

I didn't celebrate it.  I am hanging on to my mental health as best as I can, and sometimes I think there has been a bit of healing in little fits and starts, but neither grief nor wellness follows the notorious stages as described by folks in the helping professions.

Take denial, for instance, as it applies to dealing with death. I had a boatload of denial in the weeks following my husband's suicide, but then less. However, denial comes back but not in good ways-now I feel denial that he ever lived.  My kids burst out with things like "I'm starting to forget what he looked like!" followed by tears. I feel reluctance to get rid of the last bits of paper with his handwriting in case that means he gets totally erased himself. And this from someone who is not wholly grieving his passing because I am actually quite angry with him, still. I sometimes wonder if he was really real, at all.

This is where my existential angst gets me stuck - my kids didn't exist, and then they did, and even if it kicked my butt the experience of being a parent has been amazing...yet now the other parent exists no more. Wha??? I don't get it. No wonder my head hurts and my heart aches and my hands shake. All this bursting into existence and snuffing it out leaves the pile of consciousness that us "me" dizzy with the breathtaking power of it all.

So as usual, a folk song plays in my mind, from the inestimable Cheryl Wheeler.

Life is short, but the days and nights are long
Time will heal all these wounds
Some day soon
I'll be rising I'll be strong

But now I'm loosing all my battles
Now I'm down and dropping still
And this snow's blowing through
Like some ghost
With this blue I know too well

Broken hearts keep on beating just the same
So I guess I can too
Go through these moves
Facing forward, walking straight

But now my glance keeps drifting downward
Now my feet can't find their way
And this cold's creeping in
Through my bones
Whisperin it's here to stay

I'll bide my time, like there's any other way
It moves too slow, moves too fast
It's gone and past
And stopped entirely today

I know there's light on some horizon
But I can't see so far ahead
Patience and grace, blessed is love
I'm loosin my faith
In most of that stuff those wise men said

Monday, October 7, 2013

Spousal suicide / PTSD / parenting scorecard

Compliments on how I am doing at staying sober and alive - a few

My ability to teach my kids that we can dislike what Daddy did but still love him - better than expected

My keeping an atmosphere in which they express love for Daddy - amazing

Feeling a boatload of PTSD symptoms as I deal with estate, taxes, and what to do with the cremains - better than you might think but still packing a whallop

Ability to get rid of Daddy's car and clothes - still behind the curve

Number of counseling appointments this week for the three girls who live here - 3

Number of people for whom the counselor says we are almost done - 1 (not me)

Number of times I burst into tears at memories and intrusive thoughts today - just 2

If my arms weren't numb and my hands not so shaky I would be kicking butt and taking names.

Friday, October 4, 2013

C freakin' P

For World Cerebral Palsy Awareness Day I figured I would add to the interwebs' collective store of knowledge about CP but it turned out I learned far more reading other people's posts. How is it possible that I didn't know that no one does CP research? Go figure.

We are lucky, because CP doesn't really hold Hannah back that much. She is in a regular class, doesn't have identifiable barriers to learning that the school can assist with (they adapt when she uses scissors, etc., as needed), and as far as I know she has no cognitive impact (she does think farts are super funny but somehow I think that has nothing to do with CP). She is clever and smart and beautiful and sometimes quite winsome and sweet, and sometimes hisses at me like a feral cat (probably more related to being five, having her father commit suicide and about 90 days later mom went off to do forty five days in rehab, again not so much CP related behavior). Mostly she navigates her world incognito, and maybe is perceived as young in her peer group, which is actually true.  However, despite her success, when we were at a park playground near our home and ran into a family with a child in her kindergarten class who is very active and able bodied, that child asked me why Hannah needed help to navigate a tricky monkey bar feature and proceeded to show far more interest in Hannah's big sister.  Every now and then she drools a little when she concentrates. We still end up at Shriners all the time for OT and PT, use stretching braces at night and continue to get conflicting advice about the benefits of using AFOs (proof there oughtta be more research right there, since the conflict comes from two parts of the same hospital so what is a mother to do??)  I don't, at this time, teach Hannah that she has special needs and the word disabled is never used here. I think she would tell you her Righty doesn't work all the time, or that it gets tired, I don't even know that she knows she has CP although she might be able to say she had a stroke, I dunno, I'd have to ask her.  It is not ruining our lives but it is a drag.

I wish I could be a little more grateful, as some moms sound when they tell how they love their child and CP is part of who that child is. I guess I still don't have that level of acceptance. If I could wave a magic wand and take CP away from Hannah, I would do it quick like a bunny and never look back, because I hate that she can still be a doctor but perhaps not a surgeon who needs two strong steady hands to operate, or when and if she has kids her not quite as able hand won't be as handy to hold her baby or a million other things that will be harder for her than they would be without CP.  She is indeed the child I wanted and she doesn't disappoint me but I do wish I could smooth her path down to the regular rocky path of life from birth to adulthood.  I do wish she didn't have to spend time at a clinic where the Cozy Coupe cars weren't specially built with IV stands and stickers that say "cancer fears me" but yet I am grateful to have such a facility available to my family so she gets the necessary help to be able to do the most she is capable to do.

Monday, September 30, 2013

The lion may lie down with the lamb, but I lie down with the laundry

Today feels somehow confessional to me, so I will spill some more about being somewhat nuts.  It may also apply to the grief stricken, recovering addict, or other types of crazy but somehow I just associate it with my PTSD/anxiety/depression and being tired.  I don't have the energy I used to have and I don't know when it may come back but when it does I certainly hope it will include laundry doing.

I sleep with my clothes. My clean clothes. And my kids' clean clothes, because I can't stand to put them away, apparently.  This is a side benefit of becoming single, whether by death or divorce, when your bed is suddenly bigger than it was, you can just pile up the clothes that are supposed to get put away, and voila! no more empty bed syndrome. A goodly pile of clothes will weigh down your comforter so you can't use it all, just like sharing the bed with someone full sized does!  No snoring, no body odor, no mansand on your sheet, and no pesky hours spent trying to stuff your drawers and closets with last week's fashions. If you keep the pile small then you can have a pint sized child in or on that side of the bed for snuggles and book time and still not have to tackle that chore. Yes, you can use my idea! You're welcome!

This household tip brought to you courtesy of product sponsor "I Can't Believe it's A Laundry Basket!"

Saturday, September 28, 2013

A rant about "mild pedophilia"

I tried very hard not to write about this but apparently I will have writer's block until I do.

Of course I love to look at my NPR app on my iPad, and this week saw a story on evolutionary biologist Richard Dawkins, who mentions in his new autobiography having been subject to "mild pedophilia" in school.  This popped up a few times in my Twitter feed over the previous week also, I assume, because it stood out for its nonsensicality. It is an oxymoron to me, and I can't work out how the interwebs didn't light up in universal disgust.  My folks, language snobs from way back, would gently mock those who said "half dead" "a little pregnant" or "genuine imitation." Also, since I know a little about the harm done by pedophiles, I have a strong desire to scream about "mild pedophilia" because even if Dawkins didn't defend it per se, a whole bunch of people defended it while defending him, and I am really angry about it all.

No one should sexualize a child. No one.  It isn't mild to do so, no matter what.  Sure kids engage in self exploration, sure they play doctor or whatever with each other, but sexual contact intended to result in sexual gratification of the adult or child is simply wrong.  I am glad if Dawkins wasn't traumatized by his experience, but I hate that he describes it as "mild" pedophilia. Pedophilia cannot be mild, ever, full stop, and you don't have to be a conservative to say so.  When I went strolling about the internet to see what other people thought, my head exploded (metaphorically).  How can there be so many people who would justify this type of behavior that falls short of rape and say that it is how conservatives and the religious right condemn normal behavior? Who are these people?  A lot of anonymous commenters said things like children need to learn sexual behavior and people in traditional societies masturbate children to calm them and that is not seen as abusive, and only in today's modern society do we create the trauma by telling children they were traumatized.

All these commenters say that Dawkins was not defending mild pedophilia the first time, or when he explained his remarks later in an interview with The Times.  Here are the quotes of that interview I found:
Today we read, almost daily, of adults whose childhood was blighted by an uncle perhaps, or even a parent, who would day after day, week after week, year after year, sexually abuse a vulnerable child. The child would often have no escape, would not be believed if he/she told the other parent, or told a teacher. In many cases it is only now, when the abused children have reached adulthood, that these stories are coming out. To make light of their stories, even after all these years, might in some cases re-awaken the trauma of not being believed at the time when it was all happening, and when being believed would have meant so much to the child . . .
I cannot know for certain that my companions’ experiences with the same teacher were are brief as mine, and theirs may have been recurrent where mine was not. That’s why I said only “I don’t think he did any of us lasting damage”. We discussed it among ourselves on many occasions, especially after his suicide, and there was indeed general agreement that his gassing himself was far more upsetting than his sexual depredations had been. If I am wrong about any particular individual; if any of my companions really was traumatised by the abuse long after it happened; if, perhaps it happened many times and amounted to more than the single disagreeable but brief fondling that I endured, I apologise.
Something is so very, very wrong that the man doesn't notice the likely connection between this pedophile's actions and his suicide.  That teacher knew it was wrong. Who knows what path led from his touching and assaulting unknown numbers of his students, but when he took his life and "upset" his students he made it clear that he knew he was wrong, and who are we to say his molesting wasn't as wrong as some other things are, and not such a big deal?  It need not be deeply traumatizing to be wrong, it is enough that that one teacher may have fondled so many boys who didn't tell, who didn't get help, and who then went on to "initiate" other boys that way and thereby doom so many other kids to being victims.  The code of silence begins with each victim, and each failure to recognize the harm done, and the minimization of saying "well, it didn't hurt me much" degrades the care we owe to every other child who that perpetrator's actions ultimately affect.

Would Dawkins be able to view this the same way if it had happened to his own child? If he could, then the Selfish Gene he writes of must be dominant in his family, and I am sorry no one could nurture it to less prominence in his psyche, but I surely don't want him as my neighbor, kids' teacher, or professor. I want to be around people for whom children deserve to be protected from intentional harmful actions regardless of the level of harm intended or inflicted.  Introducing a young person to sexuality is just plain wrong.  Sexualizing a child, acting without consent and without that child being capable of understanding their feelings is not ever mild, it is always and forever a moral wrong. I have never been called conservative but I want to stand up now, for all past and future victims and say, an adult who touches a child and intends sexual gratification or either party is wrong, and not mildly. Pedophilia is not mild at all.

Friday, September 20, 2013

Bouncing to beat CP

What do you think, did intervention work on this stroke survivor? Do you see hemiplegia or a little girl having fun? Yeah, I thought so too.  (heart swelling)

I've been meaning to write about this for ages but got far too busy with whining about my head.  However, after suggesting it to someone I figured it was time to share. We started going to this bounce place more than two years ago with the Angel of PT,  Michael Workman, creator of the Bamboo Brace, and our PT spirit guide. Actually it terrified me back when Hannah was a new walker and quite unsteady, but I was assured she needed a place where she could safely fall down, and he was right. Not only did it give her a safe fall, but it gave her a whole lot more, especially one more place where she could do what all the other kids were doing, and just have fun.

When we stopped going with our PT, after aging out of Early Intervention, we just kept going for fun. Especially during the day, during open bounce, when bigger kids were in school, Hannah could bounce on the trampoline floor, and crawl on the floor, and climb the ladder of the inflatable slide using her affected arm to assist her in climbing up, and mostly she just had a great time without knowledge that I considered it therapeutic intervention.

Between divine intervention, Early Intervention, and me taking a lot of time to do stuff like this with Hannah on a regular basis, she just is not all that impaired.  Sure her leg and arm are still smaller in mass and less effective than her unaffected side, but she can do way, way, way more than she can't, and she is mainstreamed at school.  We are hitting occupational therapy the hardest now, and I don't know what we'll be doing to get those gains, but flailing her arms while she jumps seems to have strengthened her shoulder and upper arm enough that she doesn't flex her wrist and currently doesn't need that brace anymore.  I'd like to see her not favor that hand but she does a lot of two handed play, because her upper body is strong enough to move the arm naturally, so that weaker hand is not relegated to waiting all the time.

The Bamboo Brace was the beginning of this, but the bouncing kept it going, we think. We bounce at Jump Around Utah in Salt Lake City.  The owner sometimes laughs when we come in for half an hour before closing, just to get a little gross/fine motor skills work in on the fly, but every time we drop in we are glad we did.  Somehow, we have arrived at a time and place where I can come in with the kids I have with me and just sit down and look at the internet while they play independently. Yep, my child with CP plays independently and successfully in a rough play environment.  Did I picture myself saying that three years ago?  No.

Bouncing is for everybody.  My family and kids' friends can go for a playdate/babysitting event and work up a sweat while getting the ya-yas out.  A friend whose twin boy was eight months behind his sister in learning to walk made huge advancements when his big sister started bouncing with him on their trampoline, so I feel bouncing is indeed universally beneficial to build strength and balance but especially for those of us whose kids are otherwise limited in activities they would naturally do, I can't think of anything better. When my PT explained it to me, he described these benefits: fast movement on a soft surface builds muscle strength, challenges and therefore builds balance, develops the vestibular system which is important for our kiddos with impaired sensation so they better learn where their bodies are in space and relative to other stuff, and learning how to fall.  And, as you saw in Hannah's video, how to bounce back up.

This is not a sponsored post.  I would do a sponsored post, for the right people, but this is just a shout out to some very real folks and places that made our battle with stroke and cerebral palsy a battle we could fight.

Thursday, September 19, 2013

Ain't that a KICK in the head!

Never let it be said that I don't, on occasion, make you laugh. At me.

I have posted before about my hair.  My ahem, gray, hair. Guess what? I have more gray than ever, thanks to the drubbing of 2013, in fact, one temple comes in positively silver.  I like gray hair on other people, actually, my husband (for all his many faults, today we will refer to him as my husband) was very much a silver fox, and foxy.  I like gray on others, but not on me.  If my kids were teenagers I wouldn't be sensitive about it and probably wouldn't bother with coloring my roots, but since my kids are wee I continue to color so I don't get mistaken for their grandmother.  Since I color, I like to brighten my own color which runs brown with red highlights, and make my own flowing tresses pop, and so since I made a very real redhead I generally try to match her as best I can.  My husband banned me from doing my own hair color at home, and really, that is OK since I wasn't very good.  But going in for a hair appointment means getting up and going in and this year, my hair has not been top priority for me.  I had roots a good inch and a half long a few months ago, but I finally got in and fixed it up.  When I went last time my stylist friend was excited to show me Red Hair Root Paint! that I could use when my roots got long and I needed a tide me over.  Of course I bought it, and today, since I was trying to look like I bathe regularly, I put on makeup, fluffled my hair and sprayed it on. Lo, and behold, my selfie, which makes it appear a wee red devil put a boot mark on my forehead.  And this is after I removed the thickest paint from my part.  Yeah . . .

Sunday, September 15, 2013

Grace In Small Things, Now More Than Ever

I used to post on Grace in Small Things with some regularity, and then totally got out of the habit when sometime after my mom's strokes and my colossal butt breaking fall on the ice my substance abuse turned into substance dependence and bit by bit I stopped feeling all that much gratitude. Certainly I was grateful to get clean but still there were so many things to not be grateful for that gratitude didn't rise to the top of my emotional pool very often lately, but today it did, and I posted this at GiST. Take that, gloom.

You are lovely people, you know that? Sitting around feeling, sharing, and receiving gratitude and joy! I did miss you . . . I came back to my blog a few weeks ago, and felt too angsty to get back to thinking about things I am grateful for . . . but of course I should because it makes me feel better. Schmutzie's Instagram email today inspired me, so here goes . . .
1. I didn't die while addicted to pain pills, and now I am clean and won't ever flirt with such a thing again.  Big YAY there, obviously.
2. My husband may be dead from suicide but I am not, and I have children who are most decidedly alive, and playing heartily in a very lively fashion.
3. Life has potential for MORE good things to come my way, and today I remember that.
4. Mistakes, depression, anxiety, and PTSD may be a part of my life but need not be a way of life.
5. This totally improved my perspective today. Yay!

Thursday, September 12, 2013

Psychology Today

A roller coaster is in my psyche! I started out tired and somewhat gloomy, got a small lift at Jazzercise, back down when I had to do a marginally official task of picking up license plates from the car dealer, back to house where I almost tacked the beginning of a nearly insurmountable paper/bills/mail sort and almost cheered up, only to go to therapy where I ended up dropping back into a psychological pit.

I imagine the good news is that the yawning gulf of despair is not a permanent condition for me, and I only flirt with wholly jumping in, or getting chased in by intrusive memories and flashbacks. I suspect it is good to not have depression that never relents, but it sure would be nice to have no depression at all.  I have known a few folks with major depression, and frankly, they are not doing all that well, if they are still alive.  What would it have looked like for me if I had gotten treatment sooner, I wonder. But with my husband's activities and suicide I don't think I had a hope to avoid PTSD this year.

PTSD is kicking my butt, literally, but some days I think I am improving.  I had no idea what PTSD was like until I had it.  I didn't know what it would be like to sometimes feel that the only part of me that has substance is my eyes looking out and that my body is insubstantial below my chin, or the opposite sensations I can get that my feet are magnetized to the ground and can't be relied on to move up or forward. The most similar feeling I've had that might make sense to someone else is when my foot twists inside a slide style sandal and I find the shoe is sideways but still on my foot and not surprisingly, I am on the verge of falling.  Another mom I know who lost her son unexpectedly and also was diagnosed with PTSD asked me if I ever felt that the world around me was made of tissue paper.  It sounds so silly to envy someone else's wacky body sensations but not being able to trust the world around me sounds somehow better than not being able to trust my body.

Today I feel better than other days, my body has only betrayed me with arm numbness and anxiety. Hooray! And today I feel my sobriety is not in question, because I went to my rehab facility and facilitated a relapse prevention group. If you want to keep it, you have to give it away, and so I did, and I feel stronger.  I almost remember actual joy, and then I remember the rest.  But 10 steps forward and 2 steps back is still 8 forward.  Basic math always wins, right? The hardest to learn was the least complicated.  Thank you, Indigo Girls. Thank you sobriety.  Thank you, God.  Thank you, interwebs, for being my therapist.

Monday, September 9, 2013

posting my way through anxiety without mind numbing drugs - bite me, MCADD

Argghh, just a simple little cold/flu, the ubiquitous second week of the school year bug in all its minor chord glory, is here to rattle my cage in my new single mom state. I have decided that Hannah ate enough, is large enough, that the fact that she threw up does not mean we need to race off to the Children's Hospital in the middle of the night, getting a blood draw, IV and having her catheterized to check all relevant levels of stuff that matters in the world of metabolic disorders.

This is one of those places where my late husband was in some ways helpful, in that he didn't get so wound up with worry and count approximate food vs. vomit ratios, and yet, I always knew that if we separated I couldn't count on him to get Hannah to the hospital should she actually need to go, and I could lose her to his lack of worry.  And still I hated having to worry so hard about her since I had to worry for the both of us.  The three times I have taken her in to the hospital with vomiting and illness were all times where her test results showed she was just beginning to experience a metabolic process that could indeed be serious and ultimately fatal should she not get her glucose into a normal range.  I know at those times I did exactly right to take her in, and get a glucose IV that would load her up and keep her going until her appetite returned as the virus ran its course. But what about the times we  just rode it out and treated her like a normal child who has a brief illness? Am I risking her life when I don't take her in?  I know from the patient education we have received that she doesn't always need intervention and the best person to gauge that is her caregiver but I don't really trust myself to get it right, even though history has proven I do. And so anxiety kicks my butt, every single time her little regular virus with a high fever comes calling.  Every. Single. Time.

Last night I kept her in my too large bed, felt the heat waves coming off her body, and gave her sips of flat Sprite, apple juice, and water in between hurling into my stock pot that I kept at the foot of my bed. But it always seemed that every sign showed she was not in distress beyond expected levels for vomiting and fever, and if I could get her to keep high calorie fluids down by morning we could make it through.  And we did.  I imagine she will not go to school tomorrow either, and hope we both get more sleep tonight, and today I have one more example to tell my PTSD addled, anxiety riddled mind that I actually am up to the job of mothering this child. And that may sound more credible tomorrow.

Friday, September 6, 2013

K, camping is hard, right?

It was a lovely, family oriented holiday weekend, but it has taken the whole week to recover. Because I was painting a wee picture I chose not to apply sunscreen when the sun finally came out, as I preferred not to get my hands all gummed up with goo that might smear the watercolor pencil. As I result, I love my painting but my face got so burned that my eyes puffed up, one more so than the other and leaving my right cheek extending forward enough to show up in my vision in a manner akin to an extra nose. So I look wacky in the way that I feel inside! Yay, me!

The vista looked like this from our camp.  I didn't include the large number of sheep who paraded back and forth through the valley multiple times a day, guided by medium sized dogs we decided must have been Not So Great Pyrenees since they looked Pyreneesey but were not great in size.

Looking down on the sheep reminded me that people who don't approve of low cost grazing on public lands sometimes call them land maggots, but I enjoyed their chorus of simple conversation.  Hannah said, "I would like to go to the sheeps, please" and was disappointed that the sheeps didn't want her to examine them. It was lovely, relaxing, time out of time, but oh my goodness I AM TIRED.

Friday, August 30, 2013

Friday Haiku: from the lighter side of the yawning pit of mental health problems

I don't have to bathe
Now that I am so crazy...
Isn't that handy?

Now that they all know
the neighbors are less angry
about the tall weeds

My household skills can
make you feel so much better
about how you clean.

People mail me cards
of Dragonflies and Rainbows
Look how pretty!

Wish they'd send dinner
like after the funeral
I prefer pizza.

Let's talk about PTSD, let's talk about you and me

That title has a tune in my head, just so you know. You can imagine your own to fit it you don't like mine. When I was more myself, and sometimes now, I sing in my head and sometimes aloud, though you wouldn't really be happy to hear it.

No one expects the Spanish Inquisition, and no one expects a train wreck in their personal lives. That dissappointingly inadequate what to expect when you're expecting book doesn't cover special needs in the way lives are ultimately experienced, no one expects a spouse's suicide or chronic and destructive lying, and when those things happen it is rather distressing, to say the least.  Did unexpected life events come when you were unprepared, and did you feel powerless to deal? Then you have trauma.  Do you relive it, get your ass kicked by it over and over in your head and heart and body, and find yourself lost in a loop of crap? Then you may have PTSD.  I didn't feel OK about accepting that diagnosis last year before my life took a turn for the worse in February.  I thought PTSD was for Veterans, police, etc., and people would think it was bullshit if I said I couldn't function because I feared losing my child if she didn't eat, but once I had even more trauma on a whole new level of awful, and stopped medicating myself with oxycodone, now I do really know it was real PTSD before and it got bigger and badder than ever this year. Among the many things I avoid that remind me of the worst things, talking about the worst things rates pretty high up there, but dumping some out seems to be part of getting well, and if it helps any of you, then let's get better together, 'cause staying lost in a mental health mire of nightmarishness is a lousy option for any of us. Self medicating was always a poor choice and is no longer an option for me.

What I didn't know about PTSD before would fill a large academic volume, and getting to know it on a personal level, it is full of assholery and deserves a poke in the eye, just in case you wondered.  I imagine the shrinks know that it is the result of self preservation mechanisms gone awry.  Much like an allergic reaction though, when you feel anaphylaxis you really have to wonder what good histamines are in doses that can kill. I am tired of intrusive thoughts, tired of a racing heart and pounding ears, tired of my arms going numb and tingly when I feel anxious, or even when I talk on the phone about anything of any importance.  I am tired of hostage dreams, I am tired of the fear I feel when I see a car that looks like my husband's (and I know where his is as it is disabled and in my back yard but it still scares me) and I am tired of wondering when I won't be so tired of these and oh so many other things that upset my apple cart hourly.  So now you know why I stay home and watch Downton Abbey on Amazon and don't take calls and texts and emails even from the people who love me and want to help. I don't really like having to explain how sick I am almost as much as I don't like how sick I am.

Sobriety is my most joyful thing, next to my lovely girls.  Sobriety gives me hope over PTSD, oddly, even though the power triumvirate of PTSD, anxiety and depression led to my addiction.  I feel my best doing outreach at my treatment community, and the most like who I used to be, but I know ifI don't kick some PTSD butt then I won't win the war.  So, let's get crackin'.  Let's talk about PTSD and women and mothers and parents and survivors of the unimaginable.

I will be staying home for a while, not working, as I find that my energy level tanks much earlier than before, and no one will think I am sober if they see how much my hands shake.  Frankly, if people knew how busy my mind is recalling memories, avoiding memories, and keeping myself from screaming then they wouldn't think I could pay attention to much else anyhow.  So I will be back and talk about this more, here, where it is safe.  Thank you.

Thursday, August 29, 2013

My guts, not spilled entirely but sort of a belch.

Did I mention that I was widowed this year?  I think I did, but I put the how and why on the shelf for a bit. It is a nearly new day and I feel pretty positive about going forward today, once I get on the back side of the worst of the PTSD, so I will spill my guts some now.

In February, I was made aware that my husband did something unspeakable.  I reported it, and he killed himself rather than face the consequences. In the span of 48 hours I went from wife and mother to widow and mother and honestly, I never saw it coming. I knew something was very wrong in my marriage and life for the last few years, and I self medicated myself into a pain pill addiction that nearly cost me the rest of everything, but I really didn't know Lord Honey, at all.  And now I never will. Sobriety will be worth fighting for, but it won't fix my head, I have to work on keeping myself sane.

If I try to list the worst things about this experience, the list is horribly long, so I really can't do it, even in therapy, because a fifty minute hour is ultimately just fifty minutes, after all. So over time I will discuss the worst things about it here, and do some needed purging so I can keep moving forward.

Today though, I will mention the best things about the worst thing I have ever experienced.  First, I now really believe in the Divine, not because I want to see a way of life that puts Lord Honey in hell, but I want him to be forgiven and not in hell.  I have not forgiven him for the horrible things he did yet, but I want to, and the help of my higher power will get me there but right now I still seem sort of stuck on more earthly experiences, like the train wreck in my life, and the carnage the two of us wrought by self destructive behavior. Second, going to the edge makes you appreciate the guard rail. I am glad that I never wanted to jump ship myself, although excessive use of pain pills can get you there-that was never my goal.  Now I don't have to numb myself (certainly I see the fun in it, but the danger too) and the pull to get back off the edge is strong-I want to be happy again, and I can almost see the path.  The path is littered with obstacles like the thousand and one things a husband leaves in your life, some good, some bad, some ridiculous in the power of their impact, but the path seems possible now, if I help people and be gentle with us all.  And seek joy.

Friday, August 23, 2013

I now have half as many drafts as published posts. Anyone else hitting the confessional with me?

Self censorship is an obvious choice when you are spilling your guts on the interwebs, but I think I have passed all points of reason in this, now that I have 300-ish published posts and nearly 150 drafts.What gives, people? If you know me in life as well as in 'net, you might think I often can't shut up, and yet, I became a secret keeper in the last three years.  Very soon, I will publish a post that tells you a a bit about why, and just what those secrets were, but for now... how kind of any of you to read this blog at all when I am so silent. I always find my stats quite entertaining when I see I had 500 hits in a month and I managed to post only once in that time.  And are all of you getting emails from business opportunities to grow your blog with giveaways or let someone write for you? At least my blog's email doesn't get spam for Viagra giveaways and feminine lubricant advertising.

Randomosity . . . why does Disney Junior Sprout have ads for things such as I just mentioned? Am I part of the problem for mentioning them on my blog?  How have you explained to your kids what those ads are for?  I thought I would be all "there are no bad questions, little one, let me explain" when it came to Birds, Bees, and Ribbed you-know-whatsies but it turns out I am a 'fraidy cat and run for cover when unmentionables are mentioned in front of my kids, as soon as they say "What..." and I say . . ."um, SQUIRREL!" and then I chase said furry creature until they follow me.

Back to my absenteeism and censorship, I need to knock that off. Blogging here was once a very real part of my sanity.  Having recently lost the vestiges of my sanity, I need every tool in my toolkit to keep hold of the shreds of said tenuous grasp on mental health.

Sometimes when I Google my blog to find it for someone (one of the about 10 total real life people I have shown this headspace) I come across the BlogHer description of my blog, which says something like "a generally light hearted" blog about parenting.

I hope you can tough it out for a bit when light hearted veers into the long dark tea time of my soul. It is always darkest before the dawn, but joy cometh in the morning, yada yada yada, and I will ultimately prevail. Don't say I didn't warn you, though.

Friday Haiku; Writer's Block, fear, and loathing in the basement

This week, I did write
Publish those posts, I did not
I am on the fence

I struggle to choose
Just how much I should reveal
About my foibles

I do have much joy
And lots of angsty sorrow
A Debbie Downer!

So first I will put
A motherhood post out now
Remembering us

And who we really are.

Friday, August 16, 2013

A "hello" Friday Haiku, For You

Absence makes the heart grow
when it's a blog you think of
I so missed it here

But I lacked the guts
to tell the truth of my life
once I fucked it up

And effed it I did.
Oh yes, I effed it fully
and so heartily

Now I'm inching back
slowly but determined now
to find a new path.

Saturday, August 10, 2013

Bittersweet birthday without a Daddy, but still, a day to celebrate

Bitter + sweet = still sweet

There ought to be a mathematical formula for that but it escapes me.  We celebrated multiple times in multiple ways, including violently colored cupcakes delivered to her day care / summer camp class, sure to wind up even the most peaceful of kiddos.  There is a pile of real angst here, that for all the critical thoughts I had for Lord Honey not doing much to help me help Hannah, at least he showed up to the party on a holiday and now he doesn't do that.

For reasons that escape me entirely, I can't load pix directly from my ipad so I will have to do a bonus birthday post when I can jump that technological hurdle, but the fast facts are:

The Sophia the First talking castle - big hit
Cheap clip on earrings and amulets - huge hits
Bouncing at Jump Around Utah with the pals - another birthday party success

For me, my kids' birthdays are always a time for review, and so I looked back to Hannah's first birthday post on this blog, entitled Lucky, and indeed I know that I am. I love you, Little Bunny.

Saturday, August 3, 2013

Thank you for reminding me to be grateful

The title here is from a comment I left on someone's blog in 2011. Right before I fell all to pieces, natch.  I didn't take the hint I gave myself.  Not gonna lose sight of that again, universe, I really won't. Gonna go be grateful and come back in a few. Or perhaps I will run away and hide. I really should have stayed here for therapy from you guys and not crawled into a hole I am only now beginning to dig out of, teaspoon by teaspoon.

Saturday, July 27, 2013

WTF Wednesday: Who is in charge of this show anyway??

Ariel is the boss at our house. obviously.  The Princess of Everything. But Sophia the first new upstart is fast gaining traction.  Let me update you after the Daughter Numero Duo gets her birthday castle and I will tell you if Ariel takes a dive.

Saturday, July 20, 2013

the Friday Haiku, a day late, a dollar short, personal review

Did I forget to
to thank you, for soup you brought me
after the funeral?

My manners so suck!
Alas, I am still crazy,
no note will follow.

Next time a person
dies and you want to give gifts
to the kids, please don't.

Instead of soft toys
give them your time and presence.
Those things don't pile up.

Saturday, July 13, 2013

Daughters! Sugar, spice, and everything nice!

I have two.  Just got online, looked at my stats, and found that someone was looking at a post from four years ago, a Friday Haiku for Claire the Magnificent.  Four years ago!! 2009!  Before a number of things made me come unglued altogether . . . and so here she is, still Magnificent.

Not only Magnificent but wonderful altogether, and keeping me grounded and happy.  Here's to Claire, who is almost a second grader with the ability to read "Middle Grade" books and the wisdom to know how much she enjoys that ability. My mini-me in all the very best ways. And brave, and strong, and true.  My hero!

Sunday, June 30, 2013

Who is miserable now?

So while I was away from this space, the physical space around me was altered by maturing and growing children.  Hannah is headed to Kindergarten soon, totally mainstream. Claire now wears clothes sized nearly to her age, Hannah, though still stick figure skinny, could actually get out of the big toddler car seat and into a 35 pound rated booster . . . but worse than that, is the vocabulary growth.  Claire made a witty joke about the womb when she heard Hannah morph the r in room.  Granted she is all for a low grade knock-knock joke as well, but when I recently offered her a bit of my cheese toast, she, observing my fruit salad topped with whip-its delight said "my eyes are on the cream." WTF? When first she said "what the heck is going on?" I blamed her environment and heaved more than one sigh of relief that the phrase came from a wretched popular children's movie.  Last week I promptly lost all my helicopter parent cred by showing her YouTube shorts of songs from Les Mis, which she now begs for daily.  Mommy can we watch Red and Black? And then Do You Hear the People Sing? Sure I say, until I hit upon a making of the movie clip, and got stuck when the costume director explained the color choices for prostitutes coordinating with the imprisoned slaves.  Oh yeah, Mommy, nicely played.  Now explain prostitutes, slavery and metaphor.  When I told Claire that Fantine sold her body I said she sold her hair and her . . . teeth.  True!  She did!  And some other stuff.  And then I had to decide that I wasn't ready to show them Les Mis yet. I don't know which character she would emulate (Javert?) but I don't want to find out.

Friday, June 28, 2013

Um . . .Hello!

Hey gang. Sorry to go AWOL on you that way.  Blogging took a back seat after a bit and eventually got pushed right off my radar altogether as I tried to keep myself from falling apart, and ultimately failed.  Short recap: my mom indeed did die, shortly after my last post; my head got seriously mixed up (more on that later); marriage got worse; ultimately I was widowed (more on that later too) about 4 months ago, and I am now getting back on my feet and right side up (barely, more on that later also).  If you are still here, shout out and say so.  I loved you all before and I still do. It totally cracks me up that I am getting traffic here having been absent so long.  You will be rewarded but first I must find my funny and poignant keyboard for blogging, instead of the wistful hindsight is 20/20 keyboard.

Gas Food Lodging will be resurrected as I still have kids who require gas, food, and lodging and a whole lot more, and I will likely blog elsewhere too but am still setting that one up.  My daughters are doing fabulously for those who want to know - growing like weeds and full of fun - and are coping with things far better than I, since they have that eternal magical zen quality of living primarily in the now.  Be patient with me, I'll be back.