Because I just killed one with a handy dirty sandal (not one I was wearing) out on the hot red patio my kids play on in my back yard. See self, you are strong! Mighty! Full of pizzazz!
This act of bravery followed me getting on a ladder to tighten a loose light bulb in the garage door opener feature, and replace the burned out bulb.
Check me out!! I am getting better! Or at least able to face a ladder to do a simple household chore. This may sound silly but I have had a huge fear of going more than two steps up a ladder since I got such raging PTSD, because I often felt like the world's solid nature might be yanked away at any minute and that I would fall down, likely into an abyss, but certainly off the ladder.
I am so much better that I suddenly feel bad about the state of my home and life generally and therefore make myself busy starting to do things. I only finish doing fun things with my kids and the most basic things like appointments, food, clothes for the little ones, but it is better than before. I would like to not feel bad about not suddenly being 100% myself again but instead being somewhere in the 50% range, but with such a huge step up, I'll take it and run.
Don't fear I am off somewhere relapsing, I am really off somewhere with a Swiffer cloth making ineffectual stabs at cleaning things. And pre-treating poopstains in tiny underwear. I really didn't know skidmarks went on this long.
I will be back soon with photos to prove kids with stroke and suicidal parents go hiking . . . and camping . . . and perform in the chorus of the kindergarten play, and have huge birthday celebrations and so on, and so on, and so on.
I have two kids, one with CP, and one without. After the first few years of seemingly endless PT and OT, therapy generally now comes through living for Hannah. That means my affected child copies her sister and therefore I shamelessly use my older child to help the younger one, just by hoping two handed activities look good. Lately I have hosted a lot of play dates for both kids, and I have realized that not only do I use my kids to help each other but I am using other families' kids to encourage mine, and it works. It seems like other kids who come over think my house is the "no rules" house. I have an indoor scooter, and kids can ride it through the house, and I kept the Flintstones style car past the normal age based time frame, and people climb on top and push each other around in creative ways. What I have been enjoying is how physical kids can get in group play and how that inspires Hannah in particular, but also keeps Claire from sitting and watching TV. Hannah got the scooter when she was three or so, as an idea from a PT, with the hope that she would use it and increase balance and strength in her affected leg. We got the three wheeled style with a wider platform. Honestly she still doesn't push off with her affected leg but she will get on it and scoot through the house at least once each time some other child takes it for a spin and leaves it lying about. A tall child who is visiting today was able to get the cereal boxes off the fridge, which us something my kids would just call to me to do for them, so even self sufficiency skills get boosted by playing with other kids. Seeing kids whose parents must be telling the kids to get it themselves (unlike me, as I seem to find it terrifying to let my kids life and pour a gallon of milk and spill it) Hannah now gets inspired to carry a stool around so she can get things. All in all, my house is a complete disaster now that people get their own things of interest but I figure it is only to Hannah's benefit to keep stretching for things above her literal and figurative reach. I am trying to work on not doing for my kids when they could do for themselves, but right now, just working on that is all I can do. It really is helpful though, when a mom of a fellow almost eight year old who is coming to sleepover texts me to say her child gets clumsy when she hits her exhaustion limit, and to know that is not really a factor of CP or small stature but one of run of the mill childhood experience. So today, I am grateful for the village people who sometimes send their kids to me. But also I am tired of picking up M&Ms.
The bloom is off the rose of love. Or so it seems when your Valentine killed himself one year ago. How did I mark the anniversary of being notified of my husband's suicide? I had a couple kids over for a sleepover and let the four younguns trash the house. How did I mark the anniversary of the Valentine's Day I had last year, when I was tearing about buying pills and clothes for my kids to wear to their father's funeral? I had a cookie decorating and craft party for my daughters and friends, and let the five younguns trash the house. Despite my fifty dollars worth of icing, cookies, new scissors and rolls of tape, they ended the affair not with things of pink but with making Fairy Soup by grinding grass and bits of plants with rocks into a wooden bowl of water on the front porch. And I let the bowl stay there, to attract the odd Fairy who might happen by. I hope she might put the bloom back on the rose. Maybe even plant the rose. And when we got good and exhausted, the next day, to mark the anniversary of the funeral, we stayed in our pajamas and hung out, and hung on, and we rested. Enough grieving. I've been a widow for one year, and the book sucks, so now I need to add some new chapters,
So, what is getting me through, these days? Pop music! Everybody talk about, as in . . . and so I continue to miss Adam Ant, derailed by mental illness, but at least we now have Bruno Mars. M, anybody? I am all about inspiration these days, as I still battle the depression, the anxiety, the PTSD, recovery from addiction, death of my spouse, blah-de-blah endless blah and yuck and yet I am hanging on by embracing the beautiful, the divine, the brave, the innocence, the happy.
Right now my happy music is Brave and Happy. Thank you pop music, just for being you. And courtesy of Hope over at Grace in Small Things, I am adding on Mariachi music today and I will let you know how that goes (probably with horns).
If the people who live in my house will stop being ill or getting head lice or both (thank you grade school in all your hat sharing, scarf swapping, up close and personal glory) then I will return to blogging my way through the blues. Right now I am charged with keeping up our spirits without spreading illness or despair. Those of you who know young children will correctly guess that this involves a lot of craft supplies and clean up, so you know I am otherwise occupied.
Whoever you are who Googles MCADD and lands here, please contact me if you need to talk about it. We still have it and still find it to be the least of our worries, actually.
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.
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.
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.
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!
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.
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.
My aging mother is aging out, and on an exit plan now, I am afraid. She won't be with us much longer. I was tucking her in at the nursing home and as she slept I noticed this heart shaped age spot. Like everyone she had good fortune and bad in her 83 years, but I think this is proof positive that her life was marked by love - she was madly in love with my father, and after a few years of painful loneliness when she was widowed with three young children, she had the great good luck to have met my stepfather, who has loved her well for what will be 40 years come July, if that anniversary comes. Not everyone gets one great love, but my mom got two. Love leaves it mark, always and indelibly.
Folks, you've been mighty patient with me, and I thank you for that. I never finished boasting about Hannah's birthday. I haven't yet told you of the process of closing out our case with Early Intervention and the bittersweet farewell to the occupational therapist we had for more than two years, and the sixth bureaucratic caseworker in the same span of time. And of course, having the relationship change between our family and Michael Workman, the Angel of PT, without whose Bamboo Brace we would not be where we are today. And then I didn't get to tell you about our preparations for kindergarten for Claire, or the choice to keep Hannah in the group of the people on the younger end of her day care class - the ones who are "not quite ready" to be a Busy Bee and so will be Big Ladybugs, at least for the time being. And how this decision concerns me as it makes me wonder of the wisdom of keeping Hannah, with her late summer birthday, in the cohort that would be her regularly assigned class or might I, instead, hold her back a year so the physical disparities are not so great between her and her classmates and yet leaving her less intellectually challenged. In her preschool class, no one else knows all their letters (and has done so for eight months) and yet many others can speak more clearly about the letters they do in fact know. I haven't told you how I worry that the decision I make for this year will not bind us to a certain result in kindergarten - but the choice I make in our kindergarten year will indeed bind us for the rest of her school career. How will I get that one right?
I also haven't told you how delightful the two girls are to be around. Fart jokes aside, they have lovely manners and they are wonderfully loving to each other (excepting the odd and oddly lethal sounding disputes over the toy of the moment). I think they truly miss being in the same school even though they didn't play together on a daily basis there. Hannah was given a chance to select a sucker from a large jar as bribery for allowing a medical assistant to weigh and measure her, and she took two - so she could give one to her sister - and then wouldn't even open hers until she saw big sis later on and could present it herself. I haven't told you how joyful Claire really is - even in the roughest moments. Case in point - the new kindergarten schedule has us waking so, so, so early (compared to last month, that is) and when I went to wake her she threw her arm around my neck and said "Mommy! Mommy! Woo-woo-woo!!" (the traditional family way to praise someone about virtually anything). At 7:40 a.m.! I think she likes kindergarten.
I haven't told you how discombobulated I am to not have to consider the dog when I want to slip out the back door unnoticed, or I start to pour water in her bowl until I realize her bowl is no longer needed. We failed to adequately recognize the extraordinary effort she put into cleaning the floor, and have had to increase the mopping schedule considerably and we still are not up to Sophie's standard of cleanliness.
And finally, I haven't told of Hannah's extraordinary progress in gross motor skills generally and in foot function specifically that led her treating physician to decide that she didn't need to wear an AFO, and we'll re-evaluate in six months but it looks quite as if this is a child who might not spend her childhood in braces.
And so we say goodbye to footwear like this:
And hello to cheap footwear from Target - every girl's dream.
These shoes came to Utah from Virginia, courtesy of sweet Oia, who uses a right AFO and is a year older than Hannah. Don't they look cute? Hannah loves her new shoes - I think they are much lighter and more flexible than those we got with the AFO, and suddenly the size fives were just a little small. Voila! We broke out these, which were sent to us months ago by Mo, and just waiting for Hannah to fluff up and need them. I had to modify the strap on the left since at the time Oia wore these she had a left AFO too, but I started the job and stuffed the toe with cotton (Hannah stuffs it with wood chips every day at school) then where I messed up the strap I took it to Eric at Shriners' who fixed it up in three minutes with a cushiony strap on the bottom that takes up some of the extra room in the shoe, and we are off and flying. Mo, you did right by us! Maybe we can work out something where every now and then I buy you a new pair and you keep sending me your right AFO modified older sets? Now, got any snow boots? The Angel of PT says they way I keep Hannah going gangbusters in winter is to carve out snow steps and have her climb up to get to slide down.
Observe the shoes in action.
I think I've mentioned before that our most influential PT, the one who we met first when our CP journey began, who created the Bamboo Brace that I think has been enormously beneficial in Hannah's development, should properly be referred to as The Angel of PT. Not only does he work privately as a PT (how I got him), takes Early Intervention cases (he moved me to his caseload when another child aged out, saving me mucho dinero), runs the Spina Bifida clinic at the local pediatric hospital, and is a wheelchair fitting specialist, but he also works for Ability Found, a non profit organization bringing people and assistive equipment together. I mentioned to Michael that my mother was in poor health and having decided to stay in her home of 37 years, she needed two power chairs, one for each level of her house. He offered to see her and help determine what needs she had and what chair would best suit her and her environment, and that he could help her find a gently used chair at much less cost than a new piece of equipment, or if what they really wanted was not yet available he'd loan her a chair until he got he what she really wanted. Like many querulous old folk, she wanted help NOW and with him being busy (he is) and her being busy (being retired and old) he told her if she insisted that she had to see him on Thursday morning last week, he could only do so by bumping my Hannah's appointment. She didn't bat an eye and said yes, she'd take Hannah's slot. And she never called to thank me for giving up Hannah's spot so she could pursue her own needs.
You can be like Mo, who sends her daughter's shoes to a stranger from the Internet, you can be like the Angel of PT who runs himself ragged being all things to all people and making a huge difference in literally hundreds of people's lives, particularly for my family, or you can be my mom, whose needs are always the most important.
The video you see above is of Hannah, playing in the park in Oia's old shoes after our make up visit with Mike that he squeezed into his Friday schedule because he felt bad bumping Hannah for my batty old mother. He was too nice to say anything other than that he had a nice time meeting my parents. I said she was an old bat for not even feeling bad about bumping my baby's PT time. And that, my friends, is why I blog anonymously. I will be less bitter and annoyed later, but as Nanci Griffith sings "Maybe tomorrow, but not today!!"
I joined "Bloggers Unite" which exists to raise consciousness about issues, having bloggers share their thoughts with others about things that matter, like the day for premature babies (check) or babies without shelter or Haiti or a million other things of consequence that deserve reflection. Whatever. I meant to get this up on September 8, a day to celebrate and encourage literacy, and I missed that, but today I'll dash this off, to tell you to thank your parents, teachers and all that is holy that you can read my words. Any words. Any words at all, because you have a gift that many lack, and a lifetime without literacy is a lifetime without books. Need I say more? Who cares, I will. I wouldn't be the woman I am today without the girls I read as a child -in Anne of Green Gables, the works of Laura Ingalls Wilder, the migrant farm workers' children in Lois Lenski's books, the depth and breadth of my understanding of people from all economic classes, in other periods of history, action in the face of adversity or learning how to love and be loved.
Last week, in court, I saw a man who wasn't given much in the way of gifts with which to start, and he may have squandered what he had with drugs and alcohol and poor choices. You might see him begging, or perhaps he is too proud to beg, but he lives off LDS Bishops' assistance, food stamps when not incarcerated, and a part time job at the local LDS charitable store that exists to teach job skills and self reliance skills to help folks get out into the workplace. He is over fifty, convicted of felonies, tattooed, and illiterate. Where exactly can he work, to pay the fines and restitution he owes? The court wondered had he any assets to pay the costs he caused to another. He has no upper teeth, why would he have material assets like a car? When asked if he was entitled to other benefits, VA or social security, admitted he was denied for disability and had probably never worked enough to pay in to the retirement option. He did two terms in the National Guard but was discharged when they realized he was illiterate, so it was proven he cheated to get in, so his discharge means no benefits whatsoever.
What might have made his life different, richer, more rewarding, and worth maintaining?
1. Hannah grows stronger every day. 2. I need only wait about three more days to talk to the neurologist about the results of Hannah's MRI last week. I know it is worse than I thought it would be, and instead I just look at who Hannah is and what she is doing, but I will be glad to have this conversation and move on. 3. Temperature changes means I can dress the girls in new clothes! 4. I am pleased I have let this weekend's Gymboree sale slip right past me. 5. Claire can write her name, and mine.
Posted over here at Grace in Small Things you can see a video of Hannah riding on hands and knees on her horse. Absolutely amazing stuff. I can't even write about it without sobbing, so you are getting some pretty short posts on the topic.
I've been having a terrible time getting videos to post on Blogger lately. If you want to see some of we've been up to, try viewing some short movies on my GiST blog and go here:
In order to get back into the swing of posting minutia plus, or perhaps we call that uberminutia, I'll go back to the small stuff.
1. Claire said to me today "Mama, you crack me up." 2. If you look at my page on GiST you can see videos of the early crawling, the early walking, the advanced walking, the dancing and flirting with musicians (I am in so much trouble), and the walking with such confidence that she refuses to hold my hand, despite all the peril. Peril! Everywhere! Disregard that peril! 3. I don't know if it is the hippotherapy or just general improvement that would have happened anyway, but Hannah is holding her right hand open more, using it to help open a toy or carry an object of desire. 4. My bad neck is improving thanks to Jazzercise and PT, and I am proud of myself for making an effort. 5. Antibiotics are improving double ear infections in both girls. Thank all that is holy for Amoxicillan and all its little friends.
Life was rather punishing this week, and except for the fact that I have left things undone which ought to have been done, I was still at least fifty percent or more successful. I was busy, busy, busy at work but stayed ahead of the curve on all things. I didn't strangle my mother while I spent time with my parents at the hospital as my dad recovered from his surgery. My Dad will be released today and I think I have found someone to provide personal care help to my parents in their home. It is possible that I have found the person who will be just a perfect fit but I hesitate to call it a win until she has spent a few days preparing their meals and helping them do things like laundry and making the bed. I expect my Dad will only need the help for a week or two and that he is well on the mend although he has to learn about the colostomy bag, but getting rid of the ongoing infection seems to have done him good. My Mom, however, had managed to appear more infirm than ever, kinda by choice. She needs a walker at all times, a wheelchair to visit with my Dad in the hospital, but thinks she can drive if she needs to despite the two doctors, pastor, and adult children think she should not. Possibly, we are in for a ride. We might take the kids out tubing, the inversion has lifted, leaving our valley nearly visible and the air vastly more tolerable, with all the promise of a shiny new book, just waiting to be read.
Mother of two, step-mom to two more. Married. Work in the theatre of the absurd, behind the curtain, and pulling the strings. First daughter was a preemie, new Baby has MCADD, or Medium Chain Acyl-CoA Dehydrogenase Deficiency (Mighty Crappy Aggravating Disorder) and mild Cerebral Palsy, because the fun never stops around here. Foggy mind. If I wore a button it would say: Lose mind now, Ask me how! Things you might find here: bits and pieces of fluff about babies with wacky disorders, mommying, knitting very slowly, and stuff I don't say at work. If you want to send me free stuff just email me at gingerbblog at gmail.
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