So much to do, so little time!

Anxiety on the receding level means action on the mommy level. Grief is still there, depression is lurking behind (in a shadow, obviously) and anxiety still has me grinding teeth and thinking stupid thoughts while missing other thoughts of greater value, but the energy to do the things of family living is returning to our family life. Luckily, I still don't have a job, though it seems possible in the future. I keep telling friends I cannot fathom how I ever had a full-time, high-intensity job AND cared for kids and home and did all that therapy for Hannah, lived with a depressed and slow moving husband (in secret he may have been speedy, I am still not sure) and...!!!...then started on therapy for me, then spousal suicide and then more therapy for Claire, then me...then arrgghhh...then I remember that I was propped up with oxycodone from November 2010 to March 2013. And then propelled by PTSD, grief, sobriety and the need to eventually get better, then ... .... .... PRESTO! I now operate at roughly 65% and climbing of who I used to be before I married a depressed! lying! manipulative! wrongly made! sort of beautiful in a flawed but beautiful manly and deeply fucked up manly way kind of man and had children with him and eventually had all my own previous flaws and insecurities meet up with special needs! Depression of self plus spouse! Life threatened babies! Death of a parent (and beloved dog)! Life in a CAPITAL L Sense, plus regular life and fell the fuck apart. Boom. Did I mention BOOM!? So now, I figure 65% operational skills is not bad, considering. People say you need a year for grief, you need a year to get equilibrium in recovery, and obviously you need a year plus for PTSD due to its earth shattering and ass kicking nature. So sixteen months since spousal death, this is not bad, not bad at all. Except ALL. Kinda bad still, honestly, but not AS bad as before. A win!

We live to fight the good fight, and smile a little today. Knowing there are more smiles tomorrow and beyond.

In the last two weeks I have spent 40 hours or so pulling weeds, been social repeatedly on as many as four days in a row, volunteered at church, co-parented other peoples' kids as well as my own, gone to continued therapy, sorted the detritus of about the last two plus years in my homey mess and recycled or tossed quite a lot of it, and been validated for how I have cared for my daughter with a metabolic disorder and CP by people in the know who say I have done well by reducing PT and just living. I have read books to my kids and encouraged them. I have loved myself, if not fully, at least I have tried, and told myself it is OK to gain weight while I am in triple recovery, and I bought clothes for me in this size, to reconfirm my affirmation. Firm is a word that partly fits, except for when I jiggle a lot. I have prayed and meditated, though not always with feelings of peace. I have felt optimism, pessimism but less so, hope, despair (natch) but then, hope some more, belief I can truly make my journals of turmoil into a book that might help others recover from trauma and despair, doubt, and, ultimately, belief, again. We have been to the zoo, swimming lessons, the lawn mower repair shop, book club, the store (too many times to count reliably) and I almost set up the computer again to receive pix so I can catch up on holiday and event posts.

Crap, I am pooped. But also, I am having some extra coffee so I can keep going.

Are those furry black spiders with white dots dangerous? If so, I am a hero!

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.

A few ways CP changes my parenting style

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.

You snarky little turd, Depression

You have a mouth like a sailor. Why do you curse like that? I see you coming but I will not fall prey to your wiles. You will not convince me of any more drama.  I see you, sneaking about, peering around the corners of my mind.  Piss off and take your demon brother Anxiety with you. I will let you in if I must but we are not going to bed. We will be business acquaintances at best.  I will not even friend you.  You may be reliable, familiar, even seductive, but this is a dance I prefer to sit out.  Ropes course?  No.  Not more than a promise of hypothetical coffee. I would rather keep it down to a polite nod to acknowledge we know one another but no longer really connect.  Take care.  Call me.  (I will consider it a butt dial).

Pop, pop, pop music!

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.

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.

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. . .

Attititude
Awareness
Authenticity

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

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.

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