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ointment a few years ago we put kimani on a list to receive respite services and then we pretty much forgot about it also about three years ago i learned about a pca personal care assistant program that provides you with someone to do task based services with your child i signed up for that too hoping that one of these programs would come through for us last july the pca program administrators contacted me to set up a time to meet us kimani s name had come up on the list after interviewing me and observing her they determined that we could have three hours per evening all we had to do was find an agency to manage the payroll and find our own pca to do the work easier said than done but i put the word out to a local college that has a special education teaching program and crossed my fingers that some student would be interested in this part time job then about two months later i got the news that kimani qualified for an unheard of 20 hours of weekly respite and i did a hallelujah dance all around the kitchen when the boogie ended i wondered if she could actually have both services since they are both covered by her medicaid waiver after a quick call to the county i found out that the answer was yes as long as there was no overlap the program coordinator brought the respite worker lexi to our house to do the orientation and the following monday she started all in all she maybe showed up four times over the next few weeks she was consistently late and constantly a no call no show but she did show up just enough times to steal our ipad and a 50 check my son got for his 7th birthday the program coordinator was apologetic and lexi got fired and we were once again without respite and down an ipad which has caused havoc between our girls but a couple weeks later they sent a new girl she was pretty consistent and actually changed diapers and cooked lunch in time i felt good enough about her to make appointments for myself unfortunately it always seemed that the day i had something planned was a day she also had something come up and couldn t come in i realized that respite is great but it is completely unreliable and planning on it is a fool s game in november the college resource paid off and we got the phone number of a student who was interested in the pca position after a couple weeks of paperwork and fingerprinting she started work immediately all my girls fell in love with her she has a younger brother with down syndrome and she knows exactly how to interact with the girls high expectations clear discipline and an approach that sees nothing odd about them her name is eva and i hear it now all day long eva eva eva eva they love eva eva s job is harder than straight up respite she has to prep kimani for dinner provide one on one support while she eats potty her bathe her put cream on her brush out her hair brush her teeth get her ready for bed it is a lot especially with a little peanut who won t cooperate most of the time eva does it all with a sweet gentleness that must be a personality gift in the beginning of january our respite worker mentioned that she was picking up another job and that she would have to limit her hours with us she dropped to once a week for two weeks and then was done we immediately started the process of getting eva a second job with the agency that provides the respite service but these things take time so for now we are once again without respite hopefully in a couple weeks eva will be all set up and can work as many of the 41 combined hours as she wants i can t even adequately explain how awesome it is to be able to cook dinner while my husband actually relaxes after his long workday without worrying that kimani is going to break something or get hurt having eva lifts tons of stress of course since she is a college student we are on borrowed time with her but for now she is the best thing to happen for us in quite a while i am already fantasizing that we could take her with us to disney when we finally get enough points to go posted by tuc 2 thoughtful people said labels awesome people kimani not nice people friday january 31 2014 kimani lost a tooth and i lost my baby on january 4th kimani lost her first baby tooth it happened right before dinner my husband was bringing her to her highchair when he mentioned that she had a tooth that was sticking up in an odd way like maybe it was loose i told him to hold her so i could have a look in there and just as i opened her mouth a bottom front tooth fell out onto her lip it is smaller and daintier than any of my other children s so reflective of her i wasn t ready for this not just because her teeth came in late and therefore in my mind would fall out late but because she is still my baby to me she is frozen in time forever about 24 months old i know autumn is really the baby of the family but she s not autumn can talk and count and read moo baa la la la with me and she can handle an ipad like nobody s business autumn might still look like a baby but she is actually an ordinary toddler with a rather deceptive baby face kimani isn t a baby anymore either which this damn tooth on my desk proves so what now it is hard to watch her body grow while the rest of her stays behind it is hard to watch other children with her same extra chromosome move along intellectually while she still struggles with the basics of feeding herself with a fork she is this beautiful little girl with a whole lot on the inside that can t make its way to the outside and yet sometimes it seems as though there is nothing at all going on in there it was easier when she was a baby because so much less was expected of her babies eat and poop and look cute and she mastered that now i feel like almost everyone who meets her and tries to interact with her ends up looking to me for answers explanations and excuses i am the voice she doesn t have when i plucked that tiny tooth off her lip it struck me that she is growing up without toothfairies or abcs denial and i wanted to stuff that little thing back in her mouth but we couldn t because in its spot was already the nub of an adult replacement posted by tuc 1 thoughtful people said labels kimani loss monday january 27 2014 the stomach bug they re all sick one by one my family dropped face first into the puke bowl ok yeah that is not exactly how it happened for the little girls as i sit here waiting to succumb let me tell you all about it friday in the morning our pca called in sick a few hours after she d left our house on thursday evening she got sick and she stayed sick all night long i was bummed for her and selfishly for me because she would not be here to help with kimani but i didn t think much of it because usually it is my kids getting people sick not the other way around around six in the evening masha starting hysterically crying on the living room couch i yelled out to the boys what did you do to her and they said nothing she just started crying and then she threw up for the first time ever she was covered in slime with little brown balls of something stuck to her my husband carried her to the tub and cleaned her up and i cleaned up the spots that got on the couch what the hell did she eat today he called out from the bathroom how would i know i ve never seen little brown balls like that i yelled back while he continued working on her i started the first of many loads of yucky laundry in my cleaning i lost track of who was where so when i heard masha puking again this time off the top of her bunk bed i totally freaked out who the fuck puts a sick kid to bed on the top of a triple bunk bed i screamed it probably 4 or 5 times at everybody and nobody my husband that s who he retrieved her covered once again in filth and headed to the tub while i began the arduous task of cleaning up after her i had to strip all three beds and wipe each and every slat with lysol and i had to pick up so many little brown balls i called my boys in what was for lunch today at school pizza they answered in unison this is not pizza i screeched holding up a little brown ball in my gloved hand and hamburgers my oldest offered raisins said jade excitedly they gave us raisin cups raisins they are raisins i yelled to my husband who was still shampooing masha and still complaining about how this shit won t come off we ended up putting masha to bed on the kitchen table with autumn daddy on the floor nearby we put kimani in her bed after making it up for quick clean up just in case aside from masha heaving on and off into a large stainless bowl it was an uneventful but sleepless night saturday masha woke up feeling much better i woke up with a cold a backache a migraine and pms i took some meds and things were looking up we had planned a dinner with friends at our house which of course was now cancelled but that did not stop my girlfriend from bringing over the 8 pound chicken she had brined she left it with me and i roasted it up with potatoes and carrots the house smelled wonderful all day five minutes before i served dinner autumn came to me and said poo poo this is big news and i was thrilled to take her to the potty to see if she was for real she sat there while my husband and other kids all started their dinner after a bit my sweet husband offered to switch places with me so i could eat while it was still warm two minutes after we traded spots autumn puked all over him and thus round 2 began i cleaned up dinner and we pulled out a pack n play to contain autumn who continued to go at it on and off for hours we decided to put kimani in a pack n play as well because we figured she was next and at midnight she proved us right my husband slept on the kitchen floor alternating cleaning up autumn and kimani and i slept on the couch nursing my cold and cramps sunday by sunday morning it was all over we thought the girls were bathed the pack n plays were scrubbed and put away and multiple loads of nasty laundry was done everyone was tired my boys spent the day again quarantined in their room playing computer so that they would not get sick that night after all the kids were in bed and all the backpacks were packed my husband and i sat down to enjoy the probowl afterward we went to bed congratulating ourselves on handling the 2014 stomach bug like true pro bowlers ourselves monday at 3 a m which in my mind is still sunday night i got up to go pee my oldest son heard me and called out mom we have a problem jade puked all over himself i really wanted to cry but instead i woke up my husband and we got to work he cleaned up jade while i cleaned up the bed jade and my husband slept in the living room and by now you know how that went at 7 a m i got masha and autumn up and off to school gecko was fine but i was worried he wouldn t stay that way and sure enough around 9 a m he started vomiting my husband decided that he too was sick and fake slept the entire day on the couch although he has not actually gotten sick yet maybe he had just had enough so i spent the whole day swapping out puke bowls bringing sips of water and scrubbing as i wrote this gecko was still having at it my nerves are shot wondering if i am going to get it i have eaten almost nothing but oscillococcinum elderberry syrup probiotics and garlic alright i did have that sliced garlic on a delicious sandwich made with left over chicken i have also downed a 2 liter of mountain dew not because i think it will help but because i need to stay awake the stomach bug is probably the worst part of parenting i m crossing my fingers and scrubbing my hands that it doesn t get me too posted by tuc 2 thoughtful people said labels gross parenting older posts home subscribe to posts atom a little about me tuc i love to write most of what i write is true but sometimes i lie in order to tell the real truth know what i mean view my complete profile bye reader hi feedly get tuc delivered to your feedly reader images on this blog have been digitally watermarked with ownership and usage information the content and images on this blog are licensed under a creative commons attribution noncommercial no derivative works 3 0 unported license what i am reading now the cost of privilege taking on the system of white supremacy and racism this poem written by rissaroo spoke to me it said this is your daughter this was her beginning after after the storm after the cold and chill after the sky cracked open and fell crashing with the weight of it all after the darkness seemed certain the sun broke through tore wet curtains of gray asunder and pierced every dark place with saving light labels adoption 22 advocacy 16 autumn 10 awesome people 17 blogging 25 christmas 10 church 4 cooking 3 death 23 divorce 2 down syndrome 64 faith 14 fear 34 gecko 16 getting real 8 grandmother 2 gross 3 hate 5 heart 8 jade 19 kimani 87 kyiv 2 laughing 27 loss 31 love 29 marriage 12 miss masha 17 nicu 9 not nice people 25 not quite a poem 8 parenting 55 politics 6 prayer 9 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song contest the conte...