My life is out of order, so why not my blog?

I should have posted Halloween's gory, sugar-laden glory, but I haven't.  I should have memorialized the changes in the household as we swing into fall and settle into the "school year" which for all obvious reasons ought to be when we celebrate the New Year - but I haven't.  And three posts of "significance" are in the drafts folder, moldering in their significance. 

So let's just focus on this weekend past, and the development of a toddler in diapers and her metamorphosis into Undie Girl! Who wears panties!  And sometimes pees through them right into her shoes but still - panties they are and panties they shall remain, regardless of how urine soaked they may be!

I know I am lucky that my child with CP is training in a normal age range, and some of my bloggy friends will read this post with envy in their hearts and I do not blame them one tiny little bit, but I think those who don't live with CP or see Hannah tip, slip and shuffle every day and the ways in which she compensates to keep herself oriented will know how her condition makes this type of skill building more challenging than it is for typically developing kids.  My sister told me that she thought potty training was easy (yeah, I know) and she just waited until her kids were developmentally capable of doing each step on their own and then she just told them they were potty trained and it was done in a day.  My response was something like "oh dear, I've swallowed a bug . . . 'scuse me while I cough 'til I vomit so you can't tell whether I am laughing or crying" and then I explained that I'd hoped that Hannah would potty train before the point at which her size and balance would allow her onto a grownup potty without a very real possibility of doom and bloody head injuries.  So we waited a bit to push it, until her preschool teacher said she was ready to move forward.  So of course she wants to do it herself, now that she knows the joys of peeing in the toilet, and so we now have worked out that she should step onto the step stool, pivot slowly and carefully and safely to face away from the toilet, pull down the panties and pants while standing on the stool, and then sit down.  I particularly enjoy the stand up wipe maneuver she has created while standing on the step with her pants around her knees, and the shrieks of "Hannah do it!  Hannah do it!" should I try to help her get her pants up before she tumbles to the floor with an arm that doesn't do a lot to break a fall and her knees tied together.  It is nerve wracking, rather, but I haven't got another plan.  Because I want her to speak to me as an adult, I show you only the photos of the approach and the about to sit down position . . .  I'd just like to say it is a good place to have your sense of calm tested.  And I recommend not wearing the tutu.  Just sayin'.

You may not know this but I suck at mind reading, in Hannah's eyes, anyway.  Invariably I am supposed to help her, or not, and I get it wrong.  She manages to get her pants back up on her own with only a 15% angle droop on her affected right side.  I was complimented by our OT when I described how I've been coaching Hannah on getting her pants up and down by hooking the thumb and then sliding it around to the side.  But by the end of the weekend she had scratched her right leg a fair bit with the awkwardly oriented thumb sliding up and down the leg, but she did mostly handle the pants herself and I believe ultimately this will challenge and improve her right hand strength and dexterity and particularly her thumb strength in an important way - but my heart may give out before we get there if I have to watch her pull up her pants standing on that stool too many more times with her heavy little noggin (weighing more than her tiny ass, I am quite sure) just dangling out over those unforgiving tiles.  I am sure there is a mathematical equation to describe the fulcrum and whatnot of head hanging forward while butt dangle backward and tug the pants with unequal force between the sides and not apply too much force that puts the whole thing in a downgoing motion.  From my recollection of higher math and physics and how they become one in the end, I have gleaned that the equation looks something like   O(h) x WTF + zOMG    where h is Hannah and F is floor and OMG is that unreliable thumb with a curl and the directions say solve for fuckity fuck.  I think I told you I don't have a math degree, right?

I like it better when she drives.  

Someone is very, very, very close to reading. 

The confusion and excitement and whirlwind of the last couple of months can best be demonstrated by my Fall centerpiece - consisting of three miniature ornamental ears of corn, some autumn leaves collected by the girls on our many leaf walks, and a piece of rubber dog poo, to keep things in perspective.  Wanna come over for dinner?

Long time no blog

In the last two weeks since I managed to write a post I have:

• had Hannah's first constraint cast removed, after 3 1/2 weeks and having only cried when people asked me about it if they were people I knew and who loved me but I never once cried to a stranger (this pleases me to no end)
• tears may have come to my eyes when my daughter clubbed me with the cast in my sore jaw
• finished getting ready for the iconic family trip to Disneyland in the minivan, six family members and my best friend, who I think will now no longer travel with my whole brood.  I'm going with her.
• had a tooth extracted ( I think when body parts are taken from you you should get paid, not the other way round)
• had some other guys' squashed up sand like bone and a titanium implant placed in the hole described above, having been told going out of town with my decayed tooth holding a a bridge was "ticking time bomb"
• gone to Disneyland with my family and my best friend, who is a Disney expert and who makes every trip more fun, even when my jaw was throbbing and I'd periodically find not two but three different child applied stains on my clothing in all the usual suspect areas representing food and other fluids roughly equally (I just did the laundry) and I still had a fantastic time
• had two sick kids at Disney (you should buy stock in Kroger grape flavor children's ibuprofen - just a little tip from me to you)
• did not divorce my husband or at least send him packing for a most aggravating incident
• took some lovely pictures of my kids at the beach, which was one of my goals and which the children obviously loved, and which was the source of the friction that made me want to divorce my husband and I think I'll just stop with that there and throw in a little pixie dust

• after pulling in last night around 3:00 a.m. the garage door worked well enough to let my friend's car out and let us park the van.  We put the kids in the bed, came back to get stuff and found the garage door would not open or close.  Since I would access back of the van through the back, this presented some difficulty.  We were held captive but I did get a lift to the store from my husband's ex-wife, then I got a ride home with my groceries from a dear friend who lives hear me, and when I got home the job was nearly done, so only $175 later we are now allowed to leave the house using our own vehicles. 
• After the last two weeks, putting a turkey in oven sounds easy

Friday Haiku: a day in the life of Hannah

We started early
at the hospital at six
and a got a pager

buzzed by nurse, checked in
Next, medical imaging
to look at her brain.

Glad she had Versed
the MRI is so loud
and I was scared.

We saw dentist next
general anesthesia
was given her twice.

She came though quite well
sassy and not at all sick
she slept on me well.

Tears ran down my face
dropped on the sleeping baby
she kept on resting.

Dentist gave high marks
Neurology on Monday
but I could not wait

Regular doc said
(who could access the records)
Hannah had a stroke.

Twas not anoxic
brain injury, but more harm
and now I know it.

Today she ran more
used her right hand with more skill
and she always will.

But still, it hurts.

Whoops upside the head

I just found out about some growing up I need to do.

This weekend I saw my stepson butt scooting along the floor in the manner Hannah uses. He would slap his hands down and drag his bottom with one leg up and one down, just as Hannah does. More annoying was the "I'm a blithering idiot" look on his face, sort of a open mouthed maniacal grin. He stopped in his tracks when he saw the look of "thunder hear my cry" cross my face and got up without saying a word after we made eye contact. I cooled off for all of about one minute until I came back around past where he sat and I pointed and used my quiet voice and said "don't ever let me catch you mocking your sister." He proceeded to tell us he wasn't mocking and that he didn't know what mocking was. Lord Honey spent some time using the dictionary explaining mocking and I was fuming because this boy often plays less informed than he is, and even if he didn't know the definition of "mock" he absolutely knew he should not act in this way, as evidenced by his wordless cessation of activity when he found himself observed. I was angry at anyone who would ever think Hannah's way of moving worthy of anything other than praise and acceptance. I can envision that I might be filled with rage at many such possible incidents in the future.

On Monday night I read a post on To The Max, wherein Ellen, mother of Max, reacted strongly when seeing someone stare at her son who has cerebral palsy. Wisely, sagely, humanely, she evaluated her response and wrote about it, saying "I vowed that the next time we were around kids or adults who were staring at Max, I would start the conversation. For Max's benefit. For other people's benefit. For my benefit." Readers' comments ranged from confessing to reacting harshly to engaging in a wide variety of thought provoking responses, intended to help people learn about those with disabilities.

What?!? No violence? No scathing sarcasm? Is nothing sacred? Is there no small place of normalcy where I can let my true reaction show if this happens to my baby? How will I get to this place of acceptance? And one of teaching others? I didn't want to be the brave little toaster and I don't want Hannah to get up on the alter of self sacrifice for others' educational benefits. We don't want to be teachers. We want to live our lives.

My reaction to my son's behavior surprised me, and opened my mind up to the possibility that many such reactions may be in my future. And even more disturbingly, the possibility that I don't yet have my own moral compass in this regard. Have I always been appropriate when I react to others who have "differences"? Have I followed the directions of the billboard public relations campaigns saying "Don't Dis-Ability"? Was part of my reaction to my son inclusive of my response to the way his jaw and mouth are sometimes askew, leaving him not quite slack jawed but often mushy mouthed in speech? Am I unfair judging even him with a minor lack of normal speech structure? Have I treated him as he would want to be treated (not to include being left alone, as shy pre-teen boys seem to want)? How many times in my youth did I say "I'm so retarded!" when I was clumsy or goofy with my hands. Were my stares or sidelong glances beyond acceptable limits when I crossed paths with a person using an assisting device? Do I have the right level of smile, eye contact with acknowledgement of our common cause, but not too much attention when I cross paths with other parents at Shriners' Hospital? Who am I, when it comes to protecting my child from hurt? Can I do it without lashing out? Can I help people learn without punishing them for their ignorance?

What do I want for Hannah? I want Hannah to be able to suck the marrow from the bones of life, to have every good opportunity available to her at every stage of life, to be happy. I want her advancement socially and in school to be based on recognition of her brilliance and her grin and her jolly personality, and the way she is prone to laughing at any reason and feeling joy at every turn. I wish I could see her health conditions as some sort of blessing, but really, I don't. I see that most people get handed something hard, either for themselves or a loved one, and then you make the best of what you get and try to find all the joy you can while keeping balance with needs that must be met. But I don't feel blessed to have the bonus obstacles, I am only blessed to have the blessed baby herself, and the obstacles are part of the package.

I don't know how apparent her CP will be to others. Right now, we can "pass" because it is not out of the ordinary that she be carried in a public place at her age and her jacket hides her braces. Perhaps she will eventually walk without dragging her foot, or hold her arm in the way we see as normal, and not bent with her hand fisted tightly. I don't know. I do know I want her to look and feel as normal as she is able. But why do I want to have my kids be normal? I have to rethink everything about normal. I want my kids to have an easy life, not too easy, because the learning is in the meeting of challenges, but I don't want it to be too hard. I want my stepson to speak clearly, because if he doesn't, people will treat him as if he is stupid, and when he fulfils those expectations he may end up being less than he could be. I want Hannah to move like other kids, I think because I want the world to treat her well. I may know that her physical abilities don't equate to her worth, but will the rest of the world know that? Does trying to make her "normal" through therapy mean I don't just love her for who she is? Some folks have seemed surprised by all the efforts I put into physical and occupational therapy for her, as if means I don't accept her as she is. I don't think that is what it means, but will I be able to communicate that to her while pushing her to change? I think I have some thinking to do. And some learning how not to punch people.