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.
Farewell sweet Sophie. She has been known as Soph, pumpkin, the beast, pumpkinette, muffinpie (everyone in my house can be a muffin), puppykins, pupster, Sophster, a demon of shoe eating evil, Soph-a-loaf (as a puppy she often looked like a loaf of bread while sleeping), half of "Soby" when in the middle of a roiling, rolling ball of puppyness all intertwined with her dear friend Toby (you couldn't see where the Toby began and the Sophie ended) When I said my farewell I called her my baby. And mostly I called her mine.
People have asked me lately "how are things?" and mostly I discuss how the upcoming changes in our family life are intimidating: aging out of Early Intervention, having to fly solo on making therapy choices for Hannah, Claire starting Kindergarten, having two drop off points and two pick up points for day care each day, and now I have a new change for the list - we are a family without a dog. In only the first two hours without her I had twice looked to her to see if she wanted to come out when I stepped outside. Repeatedly since Monday, when I had her put down, I have looked to where she normally camped out and I've been so startled to have seen only an empty place.
Sunday night I said my real farewell to her, when I'd carried her outside to go potty. She'd been 48 hours since her sudden onset of "idiopathic neurological inflammation" - meaning the wiring is fried in the old dog's brain - and 36 hours since we'd begun a course of steroids that should show signs of working 24-48 hours after beginning treatment. I knew then that she wasn't improving enough for me to feel it was fair to force her to stay for me. I can only imagine what it is like to suddenly develop noticeable nystagmus (rapid jerking of the eyes) and to experience having one's entire visual field jerk back and forth repeatedly, causing a pronounced head title, dizziness, clumsiness and a general utter lack of well being. After I helped her to walk and to do her business, I hunched down and cradled her shaggy head between my head and shoulder and I sobbed to her all my sorrow to send her away, all my regret that I'd not had more time for her since I'd had children, all my joy in having her in my life for fourteen years, and I told her I could let her go to Dog Heaven if she was ready.
I am glad I could give her a peaceful ending. I am glad that I didn't waffle and wait a few more days to see how she did, I am glad I had the courage to see it through and send her on her path. I wish I'd laid down near her to cuddle her sooner before the vet came. I wish I'd read Dog Heaven to her more than once that day. I wish I'd petted her more in the years since she became so old and stinky. I wish they'd all live longer, to match their families.
Even on the day I had her put down, Claire shouted at her sister to stop her from walking in the grass and getting her feet covered in dog poop and then she quickly remembered that Sophie would no longer be pooping in the yard. Since then she keeps noticing the good things about not having a dog, and then quickly adds that she misses Sophie and she is about to cry. I keep realizing how I am not yet ready to be glad I don't have a dog. I like my glass to be half full but counting my blessings in this regard is not yet on my list of things to do. It took me days to get the dog food and water bowls up off the floor and have the kibble tossed out. I keep finding myself listening for toenails going clickety clack across the floor, and for her annoying heavy panting and sharp coughing/gagging throat sounds that have become the soundtrack of my life and are now strangely absent. Last night Claire decided she wanted to give her picture of the day to Sophie, so she put it in the place where her bed was in the corner of my room. It is only an empty place.
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
See this hair bow? The first time I asked where it came from she said her teacher gave it to her because she missed her when she moved to the next class up. The next day, when I asked where it was, she said she'd given it back to the girl who owned it, and went on to say she had said "you're welcome" when the girl thanked her for returning stolen property. To be fair, it probably was lost in the east playground, like many other treasures, but I suspect she knew all along who would want it back. Oddly enough, the wood chips in said playground do indeed give up treasure, as the lost detritus of hundreds of children periodically rises to the surface. I can stand the Princess rings she brings home but frankly the severed transformer arms, dirty hair clips, and random small wheels sort of bother me.
Claire's drawn figures now have faces.
Even when they are drawn upside down.
Meet Cleta.
Claire assures me Cleta is nice, although she may resemble a somewhat droll angel of death.
My little mind is all a jumble. We had the joy and excitement of Hannah's second birthday, which marks a major milestone not only in her transition from baby to toddler but also in that she has not been hospitalized for an MCADD related illness since her release from the hospital after her birth. We have made two nighttime rushes to the pediatric ER, but were held captive only a few hours and turned away. I'm proud! I'm successful! I don't suck! We've also now had the two year anniversary of her metabolic crash, a date which I believe marks the fatal drop of oxygen that bought us the CP of which we are so very, very fond. I spent that day, last week, hiding it from the world but I felt myself counting down the hours to the time two years ago when they charted she had signs of hypoglycemia, the time I know they did the first blood draw, tried to give her formula, drew the next blood for testing, and then waiting 45 more minutes to test again and place the glucose IV that saved her life. And where was I? In and out of the nursery between bouts of vomiting and diarrhea, but still, trusting in the nurses to pull it all together. We didn't get the MCADD diagnosis for days and there would be no way for the docs to know and anticipate that waiting on that glucose level would be catastrophic because of her MCADD, but still, in the textbooks, they say you always treat hypoglycemia in a newborn. Always. I wonder and I ask why, and I kick myself a bit and feel really angry with the universe because I actually love nurses and don't really want to blame them, since I actually credit them for getting people well. I know they waited for the nurse who is the best at newborn IVs. I wish they had given me second best on a faster timeline. I hate that Hannah has to battle to walk, to learn to use her hand, will have her good hand immobilized so we can motivate her weak one, will maybe need botox or surgeries, and mostly that instead of just enjoying her, every moment is a moment I should be teaching and encouraging her use of her body, even as I know my family has far fewer burdens than many others carry. I'm still pissed off.
And then here is Hannah, in all her Hannah-ish glory, who is making enormous progress in all her therapies and charming all her therapists and as far as I can tell having a pretty good time. She just learned to say her name as "Hnana" with her sweet girlish voice. She'll tap her chest and say it quietly, and smile at me, if I touch my own and say "Mama." She is so obviously delighted with her increasing mobility and strength. She runs! Somewhat crookedly and drunkard like, but she is moving quickly. I love to see her walk over to the window seat, and casually lift one foot halfway, standing as if balancing is no chore and her feet can just sit around looking dainty and girlish while she gets a toy or shares a laugh with her sister. She'll move into the group of kids closer to her age at day care in two weeks, possibly skipping the not quite twos and head for her age group, who passed her by when she didn't walk on schedule. Her therapists all agree on this for her cognitive and social development, and to show her a model of her movements on kids who are on target, and I do agree, except the part of me that says she is small, and light, and tippy, and will maybe have setbacks with growth spurts and therapies that will have her coming to school in casts or getting uncomfortable treatments. And then the day care administrator showed me the kids who she'd be with, who will be her kindergarten cohort, and I watched a girl maybe 8 months older than Hannah fly up the curved ladder of a jungle gym and felt my heart sink. She will do that, but not with her hand as it is now, not yet.
So I'm all mixed up. I'm up as can be and I'm down in the depths. Every time I sit with her and spend a moment on working on her opening and closing her hand, I see how far she's come. She likes to feed me blueberries with righty. I have to lick a squashed piece of fruit out of a questionably clean hand but she is learning to turn her hand up, so I eat the berries and it pleases her. I'm up, and light as air, and Hannah is a joy forever, and I'm dark, and guilty, and not even as guilty as I am mad that she carries these burdens. What should be a normal little MRI and a doubled up dental procedure for her will be a day of general anesthesia for her on Friday (I waited this long so I could keep her at home the day before and not admit her as a precaution to emptying her system of food before a sedative - Hannah will never have easy peasy outpatient surgery) and it literally took something like thirty phone calls and emails to get it scheduled only to have it all nearly dashed when no one wanted to be responsible to move her from one floor of a pediatric hospital to another. But today I heard that the dental suite scheduler pulled some kind of miracle together and I'll be bringing her sweet rolls so my baby doesn't go under twice just because "that isn't the way it's done, ma'am." An office administrator angel in disguise. Perhaps she'll let me sit by her and knit while the dental work gets done.
I wish my camera could do justice to the loveliness of this girl. She has learned so much about how to communicate, I think she doesn't talk much because she doesn't need to, but today she said car and moon on our evening walk. But better still, she can fairly talk with her eyes, her beautiful eyes and joyful smile. When she is awake.
This childhood of my darlings passes so quickly, too quickly. Bittersweet is the right description "more sweet than bitter, bitter than sweet." I want her bigger and stronger and yet to stay so perfectly sized to be held in my arms with her head tucked under my chin. It must cause mothers physical pain when their grown children can't fold up onto them anymore. I don't know how I'll stand it except taking comfort that I got them along in the world that far even when some of the battles were harder fought than was really fair.
I’m on my way to Hannah’s regular six month metabolic clinic appointment to check her status with MCADD and feeling all my general PTSD feelings on the way. The route I drive to get to Primary Children’s Medical Center is the same route I would drive to see Claire in the hospital, right next to PCMC when she was born, and again to see Hannah when she was born, and each time I have driven one of the girls up in a panic that they were ill and fading fast, such as when Claire got RSV at five months of age, or the two times Hannah’s vomiting has caused me concern enough to take her in for a blood work up in the middle of the night. I felt the tears come up but the Xanax kept them at bay. We went in to clinic and were seen only about thirty minutes behind schedule which is not bad, considering their track record. I had to report that Hannah had a fever this morning, and that I didn’t know why, but that she was 102 so I had given her Ibuprofen and brought her in anyway although this was a regular check and not a sick child visit. Dr. You-know-who was concerned and started amping me up immediately, because Hannah has once had an unexplained UTI. The regular pediatrician had wanted me to get a test called VCUG which is an ultrasound to check for abnormalities that allow reflux back up the urethra or some such thing. I explained I’d been reluctant to spend any time at PCMC during the really sick kid season, since the UTI could have been a flukey thing and I didn’t want her exposed to any bonus bugs that the hospital is full of. While we were there, the doc checked her temp and found it had spiked to 103.5 even with Ibu on board so he sort of panicked and wanted her to have an intramuscular shot of high dose antibiotics while we waited for a test to show whether she did indeed have another UTI or that this fever was just from a regular ol’ virus, but still one that could cause a metabolic crisis. After much ballyhoo, we went at the doc’s direction to the outpatient pharmacy to get a dose of antibiotics which we were to bring back to the clinic to have a nurse administer. Now, the genetics docs are mostly theoretical folk, and although they see their patients when they are sick, they lack some basic skills about regular kinds of testing and treatment, and just the way things are done generally. So down at the pharmacy, they didn’t want to even fill the thing because I would need home health nurse to administer it. I explained that I don’t have a home health kind of child, that Hannah doesn’t see a nurse at home in that fashion. Back to the drawing board. Eventually I got it filled (about one extra hour) had my poor infant catheterized in the ER because the lab doesn’t catheterize, and finally headed back to clinic. By now metabolics is done seeing patients, my doctor is gone, and everyone wants me to know my doc has been wandering around with a sheaf of papers looking for me so he could give me my referrals and see that we’d had our shot. I kindly offer up the vials only to be told no nurse on duty in this clinic can reconstitute the drugs, and that must be done by inpatient pharmacy. So we wait. We are not inpatient. We are not a priority. An hour passes. For someone to mix two vials, warm it up, fill a syringe, and bring it back. Meanwhile our doc comes back, gives me his personal number, tells me Hannah is making ketones so we know she is not eating enough to handle this high a fever, and sends me out with strict instructions about ibu / acetaminophen dosages and how to call him directly if she seems lethargic. She is of course passed out in my arms, having been poked, prodded, had a tube up her hoo-ha and a generally shitty day. He tells me if he can find my drugs he will give us the shot himself. I feel some concern that he may not be good at it. And we wait. Eventually a nice nurse returns, who is possibly the official doctor you-know-who wrangler and she takes us in an empty room and gives Hannah the shot. Hannah screams bloody fucking murder at the indignity of it all but passed right back out on me as this whole episode had now occurred thought the timing of normal naps. So then, because I was unsure I could get her in the house and back down for a nap, I went home, but left her sleeping in the nice cool car, and went in. Got my laptop, wrote in the still idling car in my driveway (environment be damned, I have a baby to make rest) and then went for another drive so I at least know she has had one hour of uninterrupted sleep in the relative peace and quiet of her Cheerio encrusted car seat. Soon I will take her in and dose her for fevers and try to tempt her with any food known to Hannah kind, including Natural Cheetos, and everything the nutritionists oppose, because I just want her eating. And not going to PCMC in the middle of the night. Call me selfish, call me irresponsible, but a mom’s gotta do what a mom’s gotta do.
Fuck you universe. I’ll get you back, you asswipe.
So yesterday I had my daughter's hippotherapy evaluation, for which I paid $175 so four ladies could fit Hannah with the smallest helmet they have (ump-de-ump times, since her head is so small she needed a lot of pads stuffed in) then pull her screaming from my arms and walk her around the ring on Tulip the pony while Hannah screamed bloody murder at the indignity of it all. All is not lost, however. After the session, she did smile when I asked her about Tulip, and she petted her nose and waved bye-bye. When I asked her about Tulip at home, she gave me a super large Hannah grin, possibly planning her next tantrum.
I think I can do a few things to improve our next session, which is a few weeks away, such as work with her on wearing a helmet, take her to places that do regular pony rides for $10, and let her feed and pet a horse through a fence and so on. But, um, holy shit. Everyone who is into it thinks it is the most effective technique ever developed, and few places will work with a population as young as Hannah, and only the National Ability Center is certified for hippotherapy in my state, so their prices are higher. But it is odd to pay that much to make your baby scream. I can do that for free, you know. I am highly qualified if not actually certified. The benefits my PT (the one I love, who got Hannah to crawl against the odds) wants her on a horse for development of the muscles of her trunk, and the OTs want her on a horse to benefit her use of her hand and along the way get self esteem, speech development, and a sense of accomplishment. But $3000 plus for this year, and a half hour drive each way?? I will do it, I am sure, as this time of zero to three will never be available to us again, with extra neurons just floating about waiting to get used, and a plastic little brain just itching to be rewired. But OW. Someone please tell me how full of the awesome hippotherapy is. Please.
Now, AFOs - those of you not in the special needs community - this means ankle foot orthosis. Ours is a just above the ankle sized boot, and it makes her foot bigger enough that she cannot wear regular shoes. Shriners gave us some Skecher type shoes that are like Frankenbaby shoes. I cannot bend the soles with my hands, I don't know how her skinny wee legs could possibly make her shoes flex and I can't believe anyone - hemiplegic or not - would walk better with feet that don't bend anywhere. I bought some expensive baby sandals from the expensive baby store, and they can adjust enough to cover the boot and give her a soft flexy sole but is there another option? What about in cold weather? Help? Ideas?
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.
Posts
