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.