Tuesday, March 12, 2013

Leave Me Alone!!

LEAVE ME Alone! 

    Recently I have been doing some research on couples raising Special Needs Children. There are all different types of special health issues, developmental issues, physical conditions so it is fair to say that depending on the type of issue and severity perhaps different stress ensues. I spent more time on Autism, because even though Amalia is not autistic, her TBI ( traumatic brain injury) results in her behaving like a child with Autism much of the time, not all the time which is why she is not Autistic. For a person with Autism does not switch in and out of more typical behaviors. The statistics I found were 85-90% divorce rates/break-ups and or major dysfunction in the family. Families with children who had major health care issues and disabilities were also much the same. The ones who did stuck it out often used tools such as counseling, extensive family support and rest-bit was readily available, Church family, many close friends and sometimes they continued to live in a strained relationship for the sake of caring for their child. Then there are the few exceptional human beings who make it work. Not because it is easy, but because for some reason both of them are able to give every ounce of themselves and compromise and forgive. ( I am not in that percentage by the way, I am working like hell to achieve something close.) I always feel a bit of inadequacy.
      Without going into morbid, depressing, hysterical. details, I grew up in a family who had a Mom, Dad and older brother, just two and a half years older. My Mother and Father had a volatile relationship to say the least. As a ripple affect no one got a long well. If the foundation is broken the building tends to fall. As a child I wished for a different life. I wished for a different family. I wished for a happy Mom and Dad, a Dad who came home from work and wanted to play with me, who wanted to know me, know my friends, take me places. That didn't pan out. So I dreamed and dreamed some more.
      After a young failed marriage. An eight year failed relationship and two children later I wasn't about to date any old asshole. A single Mother has to be choosey, so that I was. To say it was love at first site isn't exactly the truth. The night we met I was out with a guy who I briefly was (seeing)?. An incredibly sexy guy, who drove a motorcycle and even though we always had a hell of a time when the girl's were with their Dad, it could never be. This guy seemed like the ultimate single guy times a million. If I dated seriously it would have to be with a  man who incorporated my girls into 99.9999999% our leisure time. So that blurry drunken night as the guy I had come with chatted up other woman, I sat there pouring my heart out drunkenly to Nate. He said we talked for a few hours or more. I recall a 30sec conversation. When I met Nate he was balding in the Dr. Phil manner and had a long beard that screamed creeper. I had known him from HS as an acquaintance so I knew he wasn't a terrorist or some other unflattering figure. Nate is pure pure country. Hunting, country music, tractors, eats any type of meat, sweatshirts with pictures of deer, you get the point. He also has a slight accent that make it sound as if he was born and raised in the south, but truth be told he has not been.  As the night drew to a close sexy motorcycle man and sloshy Sarah needed to find a ride home. We squinted on tiptoes around the bar looking for anyone who would give our sorry asses a ride home. 
    As the three of us walked out to Nate's truck which was an extremely, messy, huge, gigantic, red truck that only had a front cab. ( Picture me squished between Nate and sexy motorcycle guy.) As we wondered to the parking lot, my drunk self thought it could be appropriate to moon the men and scream " Last call on moonshine baby!" This I know cause Nate told me and believe me you he isn't that creative. Keturah asked me last year " How did you and Daddy Nate meet?" Maybe I should go with the story Nate told his mother " a County Fair", because in 2010 they had County Fairs in Onondaga County. If they happened too I don't think anyone at the time thought I was there.
      If memory serves, Nate was being way too friendly with his hands as cute motorcycle boy smiled and made conversation. Nate dropped motorcycle man and I off at his place. We stumbled into his house and motorcycle man turned to look at me and shook his head and said " Wow what a creeper, who would of thought it?" I finished my classy evening by passing out in a bed (at least it was a bed in a house) in a puddle of PBR. Could have been worse, I thought it was piss at first. That morning I woke up in PBR ALONE as my young sexy dream slept soundly and DRYLY downstairs. As I lay soggy, wet and alone I had what I recall as the PBR revelation. I needed to get the hell outta there, go home take a shower pick up my children and start over. (ummm, first I had to get him to drive me in his car to where my car was..as soon as I figured that out I was so done...I swear. That was the last time with hot motorcycle man and it was.
     That day as my children and I played I kept thinking about that nice guy at the bar "what's his name"? I flipped through my phone. I went through Facebook. Flipped through my phone again and found who I thought might of been him, issue was my drunk self put in the start of his name 6 times with 5 different numbers. Two were ruled out due to the fact they each had about 20 numbers in them. Thank God my drunk fingers typed in the right numbers in at least one of them. The rest is history.
      Our entire relationship was based upon my girl's and I. He paid just as much attention to my children as I. He knew we were a trio and soon we were an even foursome.  He paid attention to their lives he knew their teachers, doctors, friends, activities and was a participant. He helped out when I worked. His parents adored them. Even though he didn't ride a motorcycle, play a guitar and live on the edge, all his actions made him sexier than any man on Earth, plus he was good looking as well and didn't even know it. Once he shaved his head and beard I could see him. This was the year I went back to work the first time since Ami had had her stroke. Nate and his family helped me as did my Mother ( that's another Post) with the girls.
          I had to be careful. I wanted to fall in love with Nate, not what he did for me. I had to be careful. Sometimes as a single Mom, especially with a sick child the lines can get blurred when you have a man taking the pressure off of you. I have to recall that the two of you must be in love not just in love with the fact of what he does for you. I must find time to give back to him, even if it is in really small ways. Like the kids and I making him his favorite dinner, getting him the perfect birthday gift, making sure he gets personal time. The issue is as our Amalia's condition took a turn for the worse a year later so did we. I quit my job, Ami was home all day tutored only an hour a day, including therapy services. As each hospital stay added up so did the list of meds. Soon I became inpatient with Nate. He changed too. Taking the kids out for a bike ride or to Girl Scouts is one thing. Having Ami take a knife out and run at him is probably not what he envisioned when he met my little girl who adored him. I warned him due to her TBI she might have violent periods of time, sick periods very difficult periods, but sometimes until you see it you can't believe it. I also don't think he was prepared for the hospital stays, ER trips, med changes, visiting nurses, Keturah acting out as a result, John now visiting everyday because he couldn't take Ami out ect time a million. For a man just two years ago who had never dated seriously, let alone a woman with children or had his own would this be the end all. No doubt he loved my children, but my light hearted Nate was changing. The job he took since we met definitely has much better pay and benefits, but he never has time off and is always on the road. If he doesn't work he doesn't get paid, this floored me, he is educated and has a professional trade...so when Ami became especially ill or was in the emergency room or emergency psychiatry ward he kept working. I resented that, but I knew if he didn't we wouldn't be able to survive.
       Nate and I used to go out on date nights. That is no longer feasible due to Ami's med schedule and condition. She takes meds 11 different times a day. Someone asked me what my relationship with Nate is like and I would describe it as ( co-worker/co-care taker like. Don't get me wrong, I love this man very much and when things get better I want this relationship to go places, but I feel like things are out of our hands.
    Nate works out of town often. He gets out of work at 3:00 or 4:00pm go out with his buddies ( hotel, meals expenses paid) and relax all night. As I ran around like a freak drawing meds, trying to feed Ami and get her out of the house while Keturah took on the role of mini adult helper. Was this a rational thought "No Way!" Here was a man who owed my family and I Nothing...who was working his ass off so I could stay home and care for my sick child and give my other child the attention she deserved. I felt isolated, I lost friends I never never had time for. Ami was always too tired to want to do participate in any thing. Her white cells are also down, so she is immune compromised. She would sleep from 9pm ( her last med draw) anytime from noon-2pm the next day. I would wake her seven in the am to do her med round or she would get up for an hour or so, then the exhaustion was all to much. Then if we got her up she would not want to eat so we would try to get milk down and do her afternoon meds. By the time she gets dressed and woken up and is almost dinner time!! This is insane!!  I have been trying to break this awful schedule since she was born. It's as if she is on a baby's sleep schedule. At night we might go the YMCA to meet her aide. Ami will sit down and roll the soccer ball to her or sometime jump rope, shoot baskets. After a min of any heavy exercise she lays on the ground, so they keep it light. She likes to see her friends in toy room. As she gets sleepy after this hour of play she always takes her shoes off on the way out and wants to sleep on the couch. Having a six and a half year old child who continuously asks to nap, doesn't want candy, hates noisy places like Chucky Cheeses, amusement parks and only like to trick or treat at a few houses. "Want ice cream for dinner honey?" "No" she replies. Then there is my Turah who us up for adventure every waking hour. I put every fiber of my being trying to compensate. If Ami sleeps I spend time with Keturah. In the evening we have "girl time". A quiet easy activity, Barnes and Nobel, Library, YMCA-if we are feeling BUCKWILD or Petland. Nate usually stays behind getting done what I wish I had had time to get done during the day. Mostly picking up scripts, running errands ect noisy chores Ami cannot tolerate like vacuuming ( the noise causes her a migraine or seizure) even with a headset and in another room.
       Am I saying what other's are thinking? How has your child's needs affected your relationships? I have an amazing man I won't let go of, but I do pray we have time to have an us someday. With that being said, my daughter is such a miracle and when I voice any dismay about an area of my life that is lacking it does make me feel guilty. I feel like I am caught in a vicious circle.

             

Sunday, September 30, 2012

Who Are Your Main Supports?





   Support, I haven’t really looked up the definition of the word lately or since it was a vocab word in the test booklet I used to get in 3rd grade when my Mother would do my homework for me so her kid didn’t look like a delinquent for not doing their homework. What does the word Support mean to me? Well a good bra is supportive, good support pantyhose, (which by the way are harder to find than a Nun in a Strip Club). A good sports cup is also supportive, but I guess that’s not what the social workers and doctors are getting at when they ask me about my main supports. Sometimes when I am really stressed and sitting in a doctor’s office I imagine a doctor asking that question and me answering “I have this new very costly under wire bra which is a dream. It is the most support I have ever had. Thank God, now I am not tipping back when I walk.” However I haven’t found the right professional to say it to and I will tell you why. It is because usually the professionals who ask you that question are the sincere caring people who actually sincerely want what is best for you, no reason to give them shit. Unless we are talking about the nosey, judgmental professionals or people who are asking you to make sure your family life doesn’t resemble “My Sister’s Keeper”.
     Before I had children I had friends who I went out with A LOT. They supported me. They held my hair back when I vomited, they gave me rides, fixed me up with guys and we went on weekend get aways.Then when I had a baby I joined a Mom’s group. We went on outings, Mom Night’s out and many other activities. We supported one another. In each stage of life I had friends who supported me in different ways as we all were in the same stages of life. I guess this is why when I had a child with special needs I didn’t know who to turn to or where I fit in. I was now the minority. I naively thought I could still run in the same circles and everyone would support me the same.
     If we met a Moms group at a park the Moms would all sit on the benches or stand in a circle talking. When they were all laughing and having a fun fest I was chasing Ami as she ran near the road, threw her helmet off, screamed blood curdling screams. I would hear them discuss discipline and time-outs. I wanted to scream out “Oh big deal! Johnny didn’t clean up his room. Ami bit me, chipped all the paint off the walls, banged her head on any hard surface including my bones and tries hurting her sister every moment of the day. No one in my house has cleaned their room since Aug of 2006.” Since I didn’t have time to be committed to the local mental institution I was silent. Other things they discussed were run of the mill Mom stuff, formula, healthy eating, discipline, toilet training, timeouts, pre-school, annoying husbands, shopping and much more. In my world this was known as the “who the fuck cares stuff?” It still is for the most part. I am not putting down these Moms. This is normal Mom chat. This was my life when I had only Keturah. I think to some I sound bitter, but I swear I am not, I am a realist. I don’t play pretend. If I feel it, it will eventually be talked about. My thought process has always gotten me into trouble, more so recently.
         So here I was at the park with the yapping moms in a semicircle as I chased Ami like the Police in Holly Wood chasing Gary Busey and Lindsay Lohan in a car chase at the

same time. I would see some of the Moms look back, yet
no one came to talk to me, ask how we were doing, what
was up. Keturah was about three or four and would stand by swings putting her little arms up. I would ask someone to help her and they would and many would without me asking. They always helped Keturah without an issue, but Ami that was different.  People were usually hesitant. Sometimes I would get lucky and find special people who were kind and had a relative with special needs or experience or empathy for this population. Empathy, sympathy and pity are much different. Sympathy is when you don’t understand what the person has endured, but still feel compassion. Empathy is taking a walk in a person’s shoes and having been there and actually knowing what the individual is enduring. Then there is pity “ I don’t know how you do it?” At which point I ask the person to come real close and ask if they can keep a secret and whisper ( METH LAB in or basement....you in?) Always my favorite and I know many only mean words of admiration by it. I will take what the Lord has handed me with pride and do worked in group homes and over my dead body do I want her in one. I guess the unknowing is the main reason humans need support. If a person stops to think about all the shit that can happen to them they can go apeshit nuts! Will Ami live on her own someday? Will she work? Will she have to live with us still? What will happen if I die and Keturah’s trying to have her own life?
 Everyone I know with a special needs child pour their entire lives into learning the system,doctors,specialists,grants, insurance, special needs activities, programs, IEPs, 504 plans, advocates, lawyers, equipment, and 1million times more. Why have all that training and never use it again? It’s like earning a college degree and never using it.   
   Having support in life is so important because in life there are so many unknowns. ? I guess that is what makes life so damn scary and exciting all at the same time, the unknown.



             








 


















 
 

 

Monday, August 6, 2012

In The Hospital Out of My Head( written week of July 25th, we have been home for a week)

                                    
       Here we are again, except not in our usually Rochester spot. In Syracuse in the new Galisano Children's Hospital. There are brighter walls new wood floors " they look like wood anyway" private bathrooms, flat screen TVs, free video games, my favorite temperature control on thermostat, but there is a catch the same old deep sunken feeling. The same old "I just wanna stare into space feeling." "The same old I wanna take my child home and be with Keturah," who I miss like crazy and either acts like a 20yr old when she needs to be mature or a 4yr old when it is all too much. I wanna bury my dizzy head in a pillow, not talk to 3,000  medical professionals who keep asking how I am. I was so annoyed by questions in that variation. The one weird perky toy lady said " Are you having a nice day?" I responded with, " This is definitely my favorite time my daughterhas had severe seizures, poor EEG results and Cat Scan results. Definitely my top five all star trip.
         My eyes keep welling up, but I can't cry in front of her. I must make this seem like an adventure. I told Ami that since her head hurt so bad we were going to have a PJ party and doc. would figure out different ways to make her feel better. I thought between visitors, play therapist, music therapist and free movie rentals Ami would cope, but she still reacted like any other scared child. She was wired to her EEG machine that was hooked to the wall. At night when Nate ( who was working out of town) came back to the hospital I would wonder up and down the halls. I would see and hear things that would make me choke on my breath. Children hooked up to breathing machine's, children with no life left in their eye's.I walked quicker as I said a prayer for these children and another prayer that Ami would never get to this stage of illness. This is a prayer I have always struggled with. No child deserves to suffer. When Ami was in the intensive care unit as a baby ( not NICU) regular intensive care. I had a vigil around Ami. I had prayer chains started ect..I would walk into the unit and play relaxing music and put my hands on Ami since I couldn't pick her up. I would talk to her and tell her about her sister and family waiting for her at home. All the babies and children in that unit were all several injured or ill. When a baby Ami's age didn't make it, then another, I didn't know what to make of it. While I knew we were blessed enough to have a miracle, those other families deserved one too. I couldn't figure it all out and still can't. Since then I have realized that God is in charge, but it still hurts to think of those families six years later. Being in the hospital always takes me back and it probably always will. Ami's life has been a million times more than a hospital visit, a diagnosis or a disability. It has been a learning expieriece for all involved. God Bless all those children and babies.
   

Sunday, July 22, 2012

I was on a Break

       As Ross from Friends would say " I thought we were on a break". I guess in this case he was right. We are on a break. I haven't posted in forever. I wanted to post daily, but as the pile of shit I was standing in got moist I began to sink further and further down until I sunk so far the hands I were typing with had so much shit on them I couldn't type with them. The good news is I still had my loud obnoxious voice and my arms still swung around. I was half functioning. I will get to all those great anecdotes in the weeks to comes. For now I will post something in a moment I began last Spring.

Wednesday, May 9, 2012

Pink Eggs ar Midnight


                                          Our First Go Around With 
                     Green Eggs and Ham. 
                    (Yes, we are aware it looked like
                      road kill.)

                                            

                It's almost midnight. Keturah has been asleep for three hours, Nate is sleeping and here I sit in an all too familiar scenario. Amalia is wound. She fell asleep for an hour and a half today after a fun play date. Ami is not a child who wakes if asked or prodded.. Even after an hour and a half she screams for thirty minutes, which is why I usually surrender and let her sleep as long as she wishes, which is about 4hr. I then accept she will go to bed when I will and we watch a movie of her choice. Tonight I expected she would be asleep much earlier. At nine she ate snack, played her Clifford computer game and watched Punky of course. At 10:00 I lied her down on my lap and gently stroked her back. Yes she does not go to bed herself. The kicker as well is she won't sleep alone. She sleeps till 10 or 11 each morning. If I sneak out of bed to get work done she starts screaming. So I lie down, if I can sleep great, if not not so great. Especially after waking at 6:40am to get Keturah off to school. I finally wake then if I am lucky enough to have Ami sleep through me getting Keturah ready ( It is a huge on going joke with Keturah and I how we tip toe around, don't flush the toilet and whisper.) It is actually our ritual that we have come to love. Keturah will ask " how long did it take Ami to fall asleep? What did she do this time? Well tomorrow I will have a fantastic antidote. I will definitely have to quiet Keturah's giggles.    
             So I sat stroking Ami's back, she yawned and stroked my neck. I was excited. I had a lot of stuff to do. Then as she sighed a sigh that would make any parent think their child was off to dream land it happened. She sprang up like an animal that smelled it's prey. She knocked me in the chin and said " Sorry, I so sorry". She says this without stopping what she is doing. ( Keturah and I joke she could blow up a village and then say " I sorry I so sorry" as she continues to walk. Any how she is looking all around like she wants to find something. Sometimes it takes awhile for her to remember her thought. She then smiles a smile that lights up my world and says " I forget to say good night to Remi. (our Guinea Pig). She then says a prayer with him. " Dear God, thank you for my Remi and da Willow is all dead and that makes me sad. Amen" Willow is our dog that died over a year ago. We then cuddle for a while on the couch. She plays with my face then without warning picks a scab on my arm. I scream, not expecting it. Then I see the look on her face and hate myself for not containing my reaction. Of course she says " I sorry, I not do it again."
            I tell Ami it is so very late and she needs to lie down. I tell her I am going to use the bathroom. She tells me she is hungry. I tell her to grab a cheese stick out of the fridge and to meet me on the couch. However when I come back to the couch I don't see Ami. I think to myself " Dear Mother of Mercy, she needs to sleep and I need a small moment alone before bed." I walk into the kitchen and see Ami wearing tap shoes balancing a whole green pepper and a carton of eggs. It crossed my mind to immediately squash her creativity and say " Listen little lady, put that stuff away, eat your cheese and SLEEP!" However in all reality Ami didn't have to wake up until she wanted the next morning. I instead said " Ami what do you have?" She said " I have de eggs and this thing." I told her about peppers being a vegetable and the different colors they come in and how some are sweet, many are spicy. Ever opportunity I have to teach her I must take advantage of, because it is rare that I have her attention. I asked her what she was going to do with these items and she said " make us a snack." I remarked I didn't know you liked eggs or peppers. In her own way after some explanations and mostly running in circles I realized she thought the green pepper would turn her eggs green like her favorite book. Green Eggs and Ham. I told her we didn't need the pepper, but we could make some quick scrambled eggs. I suppose this is because of her need for constant touch or feeling, she is always picking, peeling, biting, sucking or singing, talking, moving. She has peeled all the paint on our window sill, don't worry the led people already re-did and checked our house. She picks her skin, nails and other's skin . If she is without her Binky it is worse. So cracking an egg must be pretty satisfying for her. Each day she goes through several oranges ( not eating them) just peeling them.
         So I got out a Tupperware bowl and told Ami she could crack an egg. Her face lit up as she cracked her egg. Then as the yolk slid to the side of the bowl and off the table her smile turned to a look of defeat. When situations like these happen I always try to make it better with a joke or quick solution. Luckily the situation took care of it self when we saw that the shoe Keturah left under the table contained the falling yolk. I showed Ami and she laughed and laughed. We even took pictures ( sorry my computer is having trouble with pics, hoping to fix it soon then I will post this.) Ami couldn't believe how the egg fell in the shoe. We made a song about it and Ami woke Nate and he laughed as well. After cleaning Keturah's shoe, Ami successfully cracked her egg. She added cheese, milk and salt and mixed it so proudly. I asked her if she wanted green eggs and she said " No lets do pink." So we got the red food coloring and mixed in a few drops. I put this in the microwave and 3min later our pink eggs were ready. Ami rarely eats eggs. I have an egg sensitivity so they are often not a part of the meals I prepare. Ami took a few bites and ran to the trash can to spit them out. She exclaimed " Dees are disgusting!" Then she ate more. After washing her hands and using the bathroom she did agree to go lay down next to Nate. It was midnight.
               As a child my parents were ridged about our night time routine. They never let me sleep with them or stay up late. During the day my Mother always wanted things done a certain way. When ever I would ask my Mom what I could do to help in the kitchen she would say " stay out of the way." I never want ruin my child's spirit, curiosity or creativity. Nights like these make the best memories.  I hope that through the years my children and I will have plenty of " Pink Egg Moments."
     

Monday, May 7, 2012

Teaching Ami & Ami Teaching Mommy

     

                 My Amalia Angel on Earth.....

    When I initially started to blog my hope was I could blog daily. It worked at first, then I unexpectedly began teaching Ami at home. Now it is a lucky day when I can piss or shit alone. ( Ami likes to read to me when I am in the bathroom, so I am not lonely.) I didn't have the heart to tell her I haven't been lonely since the day her big sister was born in 2004. However I spent the first 23yrs of my life feeling utterly alone, so if I had to choose I would rather be smothered with love than to be alone.
          It has been over a week since I started home schooling Ami and it's been wonderful. I never thought I would DREAM of home schooling my children. Like many, when the word home schooling went through my mind I thought of socially deprived dorky weirdos who grow up to be the Uni Bomber. I thought of children who never left the house and were bored and lonely. No Kindergarten graduations, school plays, having lunch in the cafeteria and laughing at the how gross the lunch was, no being invited to birthday parties, no holiday parties or classroom Valentines. The deprivation list could go on and on. Keturah (my eldest, 8yrs) enjoyed all the perks of a public education. She learned easily and read a reading level ahead. She has an early birthday (April) making her older than the majority of her classmates. Keturah won awards, got good grades and amazing comments about her personality and performance. Keturah was invited to many birthday parties and play dates. The phone rings more often for her than I. Keturah zooms through her homework while I try to figure out what she is doing. It seems Keturah always has duets or solos in plays and musicals. Keturah won a library award at an assembly. Keturah is athletic and a flexible dancer, gymnast and competitive and successful at sports.When the teacher says pick a partner she doesn't experience that awful sinking feeling many do when no one wants to work with them. Keturah knows how to stick up for herself with a snappy assertive comeback and if need be she will tell a teacher. If a teacher is firm with her she can accept it and not take it too heart. Keturah embraces the world as it comes and succeeds because she is in an appropriate setting. I would love to say I gave her these tools, but it is hard to say that when I have failed to do it with her sister.
         Now there is Ami, my sweet, sensitive, fearful child who can barley peak out of her house and take the world in. It is all too much for her to handle. After her stroke she wanted to stay in a dark room being held indoors all day. She was agitated whenever there were lights, noise or chaos. As a toddler when Ami was brought around other children, she would retreat to a secluded area and talk to her self. In 2yr old Pre-K the demands were too much and Ami would often sit at the sink with the water running and playing in it. To her that was soothing her through the difficult social situation. She had this crotchety teacher who would come over and say " Ami we are having circle time, we are not playing in the water." In which place I would reply, " Listen Pre-K Nazis, Are the children being tested on nursery rhymes for the NY State Regents board? I am glad she was coaxed out of our house and actually agreed to come into public without screaming her face off, so WE are playing in the water. Hopefully someday we can visit your circle of trust." OK, I wasn't quite that blunt, but looking back and thinking of cool things you should have said is always fulfilling. In the end we ended up dropping out of Pre-K. It seemed more like a communist committee than a Pre-K. When Ami went to an amazing Pre-School the following two years she flourished. They cherished her as an individual. They focused on her skills and raised her self esteem. She always felt so so special. Her friends were different races, age, sizes and personality's. She took field trips weekly, had animals in the classroom and hiked or played outside regardless of the weather. There were celebrations, but not holiday celebrations, for the school recognized not everyone had the same beliefs. I never once heard an educator in that building raise their voice or say an unkind word. It wasn't a huge deal if Ami still used a Binky or wasn't toilet trained. They focused on her gifts. They would tell me what a wonderful musician and friend she was. They would tell me of her love of dance. Those two years Ami accomplished somthing she never had before. She made good friends and even became a leader.
         So I guess when Ami entered public school it was quite the shock how rigid her school was. The " one size fits all" was so foreign to Ami and myself  we didn't understand the close minded attitudes. I gave many examples in prior blogs, so I won't get into our roller coaster of a year. Two weeks ago I made a a choice that I never imagined I would make. My parents are both educators, my Grandparents always called the second we got our report cards to see the results. Academics were a big deal in my family. So when I decided to teach Ami at home I was pleasantly surprised at their level of support. After my decision set in I became scared. I thought, I can't even get Ami to go to bed, eat a balanced meal or get dressed how will I educate her? I realized I would have to think out of the box. Ami isn't your typical child that leaps out of bed when the sun peaks through the curtains. Ami is a child who happens to have seizures and be on seizure meds. This seems to affect how much sleep she needs. I also wonder if her brain injury contributes as well. Ami sleeps 12-14hrs at a time. It is rare that she doesn't. On the days that she doesn't she will nap during the day. That was our first hurdle, an almost 6yr old on a 18 month old sleep schedule. Well the good news is unlike school we could curtail her schedule. Each day Keturah would go to school at 7:05am. I then had the option to go back to bed with Amalia if I was tired or to do some housework. When Amalia would wake anytime between 9:30am-11:00am, I would help her in the bathroom, then she had her meds. Next it is very important she drinks 8oz of her prescription Pediasure. Since Ami doesn't eat many table foods, she gets her prescription Pediasure and the nutrients in that help her to thrive. Since Ami isn't a fan of going out in public, the day time when children are at school and parents are at work is an ideal  time to explore public places. By the time Ami is dressed it is sometimes near noon.
      The first day I worked with Ami my mother AKA Nona came to help. ( She is a retired Kindergarten teacher).  Ami had school books she was supposed to read out loud with some help. My Mother anxiously sat next to Ami when Ami started to scowl and cross her arms. She looked at Nona and said " Go away". I explained Nona wanted to hear her read. She said " Fine Nona, hide.." As I was about to tell her how outlandish and rude that request was my mother in her high heels did her famous tippy toe gallop and hid behind the couch. I looked at Ami and said " Are you for real? Nona has to sit behind the couch?" Ami nodded. Before I say what I say next for anyone who knows me or my heart knows I am in no way shape or form racist. I have friends of all races in life. Since the situation was so insane and my Mother sat in the back of our family room hidden. I said " OK Rosa Parks are you ready for the story?" Ami still being in a worse mood than Charlie Sheen's publicist shouted " Stay there Rosa!" " Wow, we are off to a phenomenal start" I thought to myself. Then it happened, something that NEVER happens. Ami let me help her with ALL of her books. She even let my mother sit in the front of the room after her first two books. Ami has been fantastic about completing her work. It takes a half an hour a day to complete what she does in six hours of school. So this leaves us so much time each day to explore the world. Ami is extremely inappropriate in public. She is anxious and her thoughts run out of her mouth no matter what they are. At 2 or 3 people understood, however to have a typically appearing almost six year old asking an old lady in the rest room
" Why did you do so much poop and make it smell?" can be a bit much, especially if her mortified sister is present. Another thing I wanted to work on with Ami is healthy eating. She is on supplemental formula and eats only a limited amount of table foods, hardly any fruit and zero vegetables. So off we went to the Farmer's Market. This way we could learn to count money and about healthy foods. I approached a table with fresh vegetables. An older lady and her husband were so proud of their hard work and fresh produce. They were kind enough to tell Ami how the vegetables grow and before they could finish Ami blurted out " I not eat those, they disgusting." I muttered " I am sorry" and we ran along, Ami happy and laughing and oblivious she insulted anyone. When all was said and done we left with a bag of Cotton candy. I asked Ami if she thought that was a healthy choice and she said " Yes it tastes healthy."
        Another day we decided to go swimming at the Y. The pool is relatively empty during weekdays. They let me bring Ami's toys and I try to do exercises with her and play games. I want to always make up for the fact she isn't getting P.E. When we got to the pool it was empty, we were the only ones there. This was kind of funny, because in the family pool they are required to have a life guard in the shallow end and the deep end. Ami is a great swimmer and likes the deep end. She was oblivious to the fact that two life guards staring at us was awkward. I felt like the life guards were thinking " For God sakes leave so we don't have to stand here!" However they were kind and laughed as Amalia kicked and splashed me. It was quiet, none of the usual noisey water sprinklers are on during the day. All of a sudden Amalia looks at me with a huge smile and yells " Mommy I have good news! I did number one in da pool! Not number two!" The life guards looked thrilled. Ami used to wear a swim diaper and it caused her to get infections so we had a huge discussion which she took the wrong way. I explained that if pee-pee slipped out it wasn't a huge deal, but try to tell me so we could get to the bathroom, but NEVER EVER EVER do number two in the pool. If you do we would have to evacuate the pool and swimming would be done. I guess she took that as " It's OK to pee in the pool".  
     Part of having frontal lobe brain damage ( where the majority of Ami's damage is) is not having that filter. The filter that says "Don't say that out loud." Many toddlers two or three don't have that filter either. As they get older they learn not to laugh, point and yell rude things at people. The older Ami gets and the older she looks, the more her behavior looks odd. She has what I call an invisible disability. She isn't in a wheel chair or have Down Syndrome. Many people look at my almost six yr old and say rude things like " Oh, some body's tired" I say " No she just slept 12hrs, she just screams half the day and ignores me." Other things strangers like to do, especially elderly people. They pull Ami's Binky out of her mouth and say things like
" You don't need that. Binky's are for babies." In which case I say " Without it she bites her arms and picks her skin till it bleeds." I then use the analogy of  it would be like me taking your cane or walker away and saying " You don't need that, no you don't, no you don't." There are countless other examples which is why Ami and my family enjoy safe envirements. The YMCA is a safe place, full of integrative programs. Most of my relitive's homes are safe places. My sister in law is wonderful and has us over often. Ami adores her. My neighborhood where my neighbor's know Ami. My friend's who have children with disabilities are safe havens. Jowonio is a safe haven. Church is a safe haven. Challenger activities, SPD events are safe havens. Wellness Gifts Retreat is an incredible haven. Places that have shook me to the core are mutiple public school activities,. school and crowded public places. Every " non-special" activity we have done I have gotten in arguments, disagreements and been brow beaten because accomadations for my child wouldn't be "fair." After attempting these public school activites and public school I have learned how very important it will be for Amalia to be in a safe envirment and to feel confident in what she does and who she is. When I say safe I mean an envirement without peer pressure, noisey classrooms, emotional disturbed children and feeling inadequit. Am I sheltering my child? Yes, I am. She needs the shelter and I will slowly move her out of her shelter at her own speed and pace. In all reality Ami is teaching me more than I could ever teach her.

Friday, April 27, 2012

Willow Love


                                                
    One year ago I was at work and my Mother sounded frantic. I thought it was about my children. Instead she told me Willow was "bleeding all over". I will spare you the details. Nate's Mom (Sue) came over and watched the girls as I wrapped Willow's wounds. I was as honest as I could and told them to prepare for the fact Willow might not make it. They hugged her and cried, Sue did too. I felt bad I couldn't get a hold of John, after all he had been with her for seven years and loved her.
        As we took our last car ride together to the vet, the last decade flashed before my eyes. The puppy that was the outcast at the pound. I wanted the yellow lab puppy, my ex said she would get too big. Willow was an odd looking, spazy mix of God new what. She was found wondering on a city street in a bad neighborhood at just weeks old. She was supposed to be about 60lbs as an adult, but ballooned to 100 the fours year of age. I tried everything to get her weight under control and come to find out she needed to be on Thyroid meds. For a four yr.old dog she was so slow and tired all the time. I remembered the time Willow got out of the back yard. I booked down the street thinking she was near the railroad tracks. As I ran down the street in my pajamas like the freak I am I heard a bark and looked back. There Willow sat on my front swing, just looking around. She didn't want to run away, just relax.  Most dogs stay agile for awhile, after around the age of 4 Willow slowed ALOT, the poor thing was sick with an autoimmune disease. In the house she was quiet and so sweet. In the back yard, she barked incessantly. I tried remedies, but she was the only dog to bark through a muzzle. She was such a big lovey and would jump on the couch even if it was full and sit not noticing others. We would all fall off the couch laughing as she took her spot in ease. She was gentle with Ami and let her dress her in a doll bridal set, even a Vail. Keturah would officiate the service as Ami married Willow. ( Hey, that is the least of the weird behavior in our house.) You should have seen the kiss!
         When we got to the vets I looked back at the pale shadow of a dog Willow had become. She became skinny, could hardly move and had constant tummy troubles. It was just too much to bear. We began to walk into the office and Willow couldn't walk anymore and lay down on the grass still bleeding. I began to sob ( we must of looked like quite the scene to people pulling up or driving by.) I called inside the vets with my cell phone and asked for assistance. Two woman came and helped carry Willow inside. Then the tears started and I couldn't hold back the crying. I didn't want Willow to know I was so upset. I felt responsible. Between work and Amalia's medical issues and Keturah's needs her needs had been put last. Was this my fault? Had I failed her?
         After some blood work it was determined Willow was extremely sick and her body was fighting itself, even breaking her skin. The only cure was chemo ever few weeks. I looked at Willow so old and tired. I knew I couldn't put her through chemo. I was left in a room to say goodbye. I told Willow how she had turned me into a "dog person". How faithful, loyal and loving she had been. I took her picture, hugged her and held her. I told her how when I was younger and alone, she brought me so much comfort. I told her she would always be a member of our family. I told her how sorry I was that when Ami got sick she fell by the way side, not being walked and not going to the vet. I told her I was sorry I couldn't do more.
         One poignant memory I have is when living alone and pregnant with Keturah I had somthing pretty devistating happen and that night Willow and I curled up in bed and cuddled. When I was single Willow would sleep under my covers with her head on a pillow like a person. I wonder what she felt like the first night Keturah was home and I shut my bedroom door with her looking down. Everytime she wanted love and I shoed her away was now killing me. I wanted every moment back. After a half an hour I told the doc I was ready. I held Willow's paw and told her I would see her again in several years, but for now she was going to live with Nanny. As her paw went limp I was taken aback by how when a dog dies they don't look like sleeping angels like people do. She had her tongue out and eyes open. You would have thought I would have run out, but I couldn't leave. If I left without her and her pink leash she had always had since I got her at the shelter, that would mean it was real. Finally I left and made arrangements for a cremation. That way no matter what house I lived in or if we moved I would have that box. As I pulled out my phone rang, it was John. All I could do was sob " She's Gone, I can't believe she is all gone!" I asked John, Nate and my Mom not to tell the kids. It was a Wed. and I had to work Thursday and Friday.  They both had school. I didn't want to tell them till Friday afternoon, so we could cry together and grieve together. I knew they would take it hard and I couldn't send them to school like that. Plus I was hoping that by the time Friday came I would be a pillar of strength. ( Nah, I wasn't) When the kids asked about Willow I told them she was extremely ill and sleeping. I explained only grown-ups could go into the vets where she was and on Friday we would have to probably put her to sleep. Yes I lied, but I wanted them to gradually get used to the idea. In hindsight I wish I hadn't lied and been honest. I hate  lying to my children and it is only done when necessary. To pour salt in my lying wounds Keturah put a huge heart on April 29 2011 and it said " Willow went to Heaven". I finally told her truth a few months later, she understood.
        As time races by our sorrow has lessened. Well 75% of our house hold has gotten through it. Amalia on the other hand cannot. I wonder if in her mind she thought Willow would always be there. I always explained dog's life expectancy, especially one with illness and she would just nod. For weeks she would ask where her " best friend Willow is". At dinner till this day when she says Grace it goes like this, " Dear God, I want a Willow back she misses me her really best friend. She is dead and it a sad sad life. Then Keturah rolls her eyes and says " Ami just thank God for our food." If we go somewhere at night Amalia looks up to the night sky and talks to Willow. It's hard to believe that a creature I never even wanted a eleven years ago is still touching this little girl's heart. Nothing will ever compare to Willow Love.

Monday, April 23, 2012

The Other Sister ( I didn't have time to proof this, please excuse typos.)




This are my two loves, Keturah my first love on the left and Amalia my youngest love. You often see more of Amalia's name on my posts, because most of my heart aches, head aches and life aches revolve around her safety, education and health. There are two rocks in my life one is Nate, he is 31 and is better equipped to be the family rock than my other one. Keturah is a rock, but soft in the middle. She is a strong girl who was forced to grow up too fast. I never spent one day away from Keturah until I gave birth to her sister. When Keturah was a baby I couldn't bare to leave her and took her babysitting with me so I could have her close. If I ever left her it was with my Mother aka Nona.  Keturah was the first grandchild, the first great grandchild. She was a cherub of joy and slept well, ate well and only gave us a few health scares that never lasted long. She never spent the night in the hospital and was so strong, mentally, physically and emotionally.
      When Keturah was born she mended many broken relationships in my family. I spent every evening visiting my Nanny and Bacci. They adored that little girl and would have done anything for her. My father who always shooed me away as a child to watch sports or races even was interested in her. My brother and wife were good to her and on Christmas Eve I cried tears of joy as my brother gave me a new camcorder that I could never had afforded. I had looked at them, but figured since I made so little it would be a bad idea, just the gesture was so pure and full of love. You see growing up things were rocky, I always thought if my household was more stable we would have got along better, so to finally begin to have an adult relationship meant a lot to me and it still does. 
       The Christmas before in 2003 was much different. I lived alone, was pregnant and had no Christmas tree. On Christmas Eve I worked the 3rd shift. I remember sitting at my job in a Mental Health Hospital ( yes ironic) at midnight and thinking, this is the last Christmas I will be alone, next year will be different ( then a disturbed adolescent threw a computer monitor at me). I locked myself in an office and thought, "Who cares if  I lose my job, no one will hurt this baby."
     When Keturah was born she looked just like I had imagined, perfect. The joy I felt was overwhelming. She ate well, slept well and smiled early. She went everywhere with me. I sat and cried as my maternity time ran out. My plan was to work opposite John, he worked weekdays I could make good money taking long shifts on the weekends. I couldn't bring myself to bear the thought. I had recently been mandated to take a defensive driving class and being away for 8hr had killed me. So it actually came as a shock first, then a delight when I was breast feeding at 2am with my TV on ( hey if I just stared at the wall I would've fell asleep.) For God knows what reason I was watching Channel Ten News, you know they repeat the same stories ever 5min and the song goes ( Dun dun dun duuuunnnn) The first story was about a murder, second story about a house fire in Oswego ( Why are there so many fires in Oswego? Its like that is the only place that has fires.) Anyway, the next thing I saw was my co-workers picketing in front of the Mental Health facility yelling " Where will the children go?" Then the news anchor said " ________ Mental Health Facility closing down". I am sure there was more, but I didn't hear it. I was confused, because I had already considered quitting and told my boss, yet in the morning I found out I would get one year of unemployment. I almost died! I had no clue, I was only 23 and hadt not had the pleasure of loosing a job before. So I was shocked in a great way. John not so much, he found no amusement in me losing my job. There began my journey as a stay at home/working Mom. I was in domestic bliss, after a chronic illness, my parents divorce, a few bouts with prescription drug addiction, 4yrs of college, a young marriage and divorce and working a million hours a week in the low paying mental health field I was ready for some peace in my life. I fell into motherhood easily, it was a good fit. The only issue really was at 23 none of my friends had children yet. So I when they went to festivals, concerts, ( nothing hard core) the beach, mall ect...Keturah came with us. Keturah loved crowds, dancing, music and just diving into life. She was such an adaptable baby and toddler. My plan was to enjoy my life with my young daughter then get on with my Masters Program when she was school age. Another child would have to wait till my 30's. Besides, my relationship wasn't going as well as motherhood.
           Time went fast like every parent said it would. Keturah began going to a program for one year olds and I met friends and realised there were more young moms in my community than I thought. My Grandparents health was declining and my Mother struggled to care for them, but Keturah brought them all joy.  Life bopped along actually very well. I vowed to never be so careless again and I was actually being careful, so when Dec.2nd a Friday came and I couldn't stay awake all day I figured I was getting sick. I always needed sleeping meds to sleep, but that night fell asleep in my clothes and slept the entire night. the next morning as i drove my dog Willow to the SPCA for his rabies vaccine I started to do some math in my head and thought...( NO FUCKING WAY) I will die. the thought was too hideous and I let the thought go.  As the day went on, I said well I am a few days late maybe I should take a test to get the thought out of my mind. The thought destroyed me, not because babies aren't a joy, but because I could hardly support Keturah as it was. I was in a hurry to finish my educational goals and make more money. 
    Well the test was positive. So I did what every well educated, well informed woman does, who misses her period, feels tired and got a positive pregnancy test, I took 5 more. Panic set in my mind, my family had a hard enough time when I got pregnant unexpectedly with Keturah. I was unwed and not in a great relationship, how would anyone understand. My mother would be so upset, my grandparents and to make matters worse my brother and his wife had been trying for some time. One word went through my mind, ( GHETTO) hey I am being honest. I felt ghetto, like I was going to be a single mother on Maury Povich.
A few of my single career oriented friends told me to abort. I actually thought about it, the thought never crossed my mind before with Keturah. A matter of fact I didn't believe in it except for extenuating  circumstances. I even had a male acquaintance try to convince me ( it was no big deal, it would only be as big as a bug.) I couldn't think of my child as a bug, it wasn't possible. As days went by I panicked, I was on meds for a medical condition and they weren't the kind you could get off immediately. I kept thinking they would cause something to go wrong.  I didn't know what to do, I felt like I would never meet my goals in life. I called a clinic to find out about procedures and they were so matter of fact like I was coming in for a hair appointment that it killed me. I knew that was not the right choice for me, despite my circumstance. When I resolved to be strong and take responsibility for what had happened a wave of joy peace took over.
            I discovered that even though my family had their problems they didn't desert me. Also my sister in law was expecting a month after my due date. Things were looking up. I went back to work part time in my field and really enjoyed the private agency. I was hoping to keep my job after my baby came. Life was bright again, Keturah lay on my belly and said " baby, my baby I love the baby." I showed much quicker, but since I wasn't living alone this time my spirits were up. Having a 19month-28month old child during my pregnancy kept me active. Keturah continued to flourish and was my number one side kick. We went to play grounds, the mall, day trips, the beach and everyday to visit my Nanny at a near by nursing home.
      I was diabetic with Keturah, but controlled it by diet, with my second pregnancy I was insulin dependant. Yet with weekly ultra sounds, monitoring and many specialists it was determined things were going well. I worked at church summer camp running around like an idiot. I worked at my job up until a few days before I gave birth. In April I found out the child I was carrying was another baby girl. I was shocked. I thought for SURE this was a boy and for a distant second was disappointed. I always wanted the opportunity to raise one of each and having three children was out of the question in the near future. After that flash of disappointment a new image pushed its way into my head. SISTERS! Two girls only 2yr.4mothns apart and they were exactly. Since Keturah was a unique name I knew that I would have to find an equally unique name. A pretty name that would fit her through all stages of life. I started to compile names " I really liked the name Novalee, like in that 2000 movie ( Home is Where The Heart Is).  I liked Ruby, Gisella, Paisley, but when all was said in done I was a month away from my due date. I was hanging out with my dear friend Amy and she said that she knew a girl named Amalia. Not like the popular  Children's  book " Amelia" as in " Amelia Bedelia", but pronounced (AH-MAH-LEAH). Had I known it would be so mispronounced and her nickname would be Ami instead of Lia would I have used that name...?  Well I can't really picture her with a different name. Keturah wanted to name her Elmo, that would've been a more sensible option perhaps.
            Keturah was and is extremely emotionally intelligent. She had so much to say, but she had that toddler lisp that made it hard to understand her. I look back on our home videos and she is excitedly saying
" Babby Sista Baby Sista."  A few weeks before Keturah's simple life changed we got out all the old baby stuff. Keturah helped clean it and get it in tip top shape. I was grateful I had kept all the baby stuff. I also had all of Keturah's clothes.  As Keturah joyfully washed the baby swing, bassinet, car seat ect ect.. I told her she was amazing and would be a great big sister. She smiled and then jumped in the baby swing. She looked like a Giant! She smiled and said  " awwww, Baby Keturah goes for a ride." I said " No, big girl Keturah is helping Mommy!" If I had only know how disrupted that child's life would soon become, I prob would have picked a more exciting activity.
      Well Amalia's birth came and went. Amalia was so different from her sister. When Keturah came out she looked like one of those fake 6month olds on a TV show. She looked so big and healthy, so so alert. When Amalia was born shortly after midnight on a balmy summer weekend on Aug.5th 2006, I was shocked by her appearance. She was so pretty, delicate, and looked like a porcelain doll. I couldn't believe how different and unique each baby had been. She was taken to the NICU to be observed due to my high risk pregnancy. After a few hours she was brought to the regular nursery. Her sugar was fine and she was fine. I on the other hand began to hemorrhage as soon as John left. It was the middle of the night so I announced Amalia's arrival on the phone to my mother, Keturah and my relatives. This was my second child and they would be up first thing, there was no reason for them to come up in the middle of the night.
      Since I had a hemorrhage I was moved to the opposite side of the hospital as my daughter was on. They stopped the hemorrhage and I fell into a deep sleep for 5 hours. When I awoke I was shocked by the 5hrs that had passed. I called a nurse to bring me to my baby immediately. I asked how she was being fed? Who was feeding her! They assured me she was well and being bottle fed nicely by a nurse. When I waited for the doc. to come give me the OK to move back to her floor I went in the bathroom. I was appalled, I looked like a ghost. I didn't want to scare Keturah when she came to meet her sister. Finally they wheeled me to the nursery and they gave me a private room so I would get a lot of rest because of what happened. When I got to Amalia she was resting peacefully. She was resting and looked very content. Finally it was just her and I,  just as soon as we were checking each other out I was told I had visitors, so many that I should go to the visitor's lounge. When I got to the lounge I saw my Mom and Keturah coming in. I will never forget it, Keturah ran up to me in a little blue striped sailor outfit. At only 28months old I was shocked by her reaction to her sister. She wanted to hold her immediately,. she was enthralled. As friends and family showed up she didn't want to share her " baby sista." At the end of her visit Keturah said " Ok Mommy, we go home now." I explained I would have to stay one or two more days. Like a fool I left Sunday, technically since Amalia was born after midnight on Sat morning 12:04 I could have stayed till Mon and got some rest. However I missed Keturah terrible and was anxious to see how this two children thing worked.
      When we pulled up and John walked in the baby. Keturah was home with Nona. Keturah ran to the door, but looked confused that the baby was with us. I had Nona and John stay with the baby as I took Keturah to her bedroom. I explained that just like we had talked about her sister was here to live with us. She was part of the family. I suppose this comment was too large for her, for moments later she began packing a Teletubbies suit case. She ran out of the room and looked at me as she did this the baby started to cry, I thought she was going to comfort her instead she yelled " be quite baby sista or you go to time out."  I asked that she not yell at the baby. Then I got out that trusty camcorder to record Amalia's first moments at home. As I taped Amalia on a blanket, Keturah began tap dancing in front of the camera. Tired and exasperated I snapped, "Keturah move your going to tap on baby sista." Keturah looked sad and jilted and i apologized and explained she scared Mommy." As the day went on things got worse and culminated when Keturah broke out the front door and began walking with her rolling Telletubbies suit case. John caught her. we called my father " Poppie" to come over and take Keturah for a walk or to the park. Thank God he did! When she was gone, I cried. I felt like that closeness we had was stretching and it hurt my heart too much. It was then a story I had read about bring the second baby home came to me. It said "Imagine your significant other came in the door one day with a new wife/girl friend and said " Oh this is Jane, Jane will be living with us and I will be splitting my time between you both, but since Jane is new she might need more of my attention, OK honey, not a problem right?" WRONG! ( unless your a Sister Wife and married to a jackass named Kody). I tried to keep this scenario in my mind. As the week went on Keturah adjusted and since John had taken the week off I was able to walk Keturah to the park, bring her to gym class ect ect. Things were falling into to place for that week. On Sunday night I was panicking inside, but kept saying to myself " Sarah you aren't the first mother to have 2 children, many have had 6, 7 or 8, look at The Duggars, they are wonderful yes I am Mrs. Duggar.." ( except I swear, yell and don't have a TV show or a big home." That Sunday night is when Amalia got ill and my first love fell into the shadows and I am not certain if she has ever came back out.
           Keturah stayed with Nona. How confusing for her to have her baby sister swept away and not being able to see her. ( Keturah would've needed years of therapy if i let her in the intensive care unit.) If her sister were to go to heaven I wanted Keturah to recall her as her healthy sister we had the first week. My mother took Keturah to visit me at the hospital and we would go to lunch or dinner at the Upstate cafeteria when my Mom  stayed with  Amalia. I know Keturah knew things were different, these weren't joyful visits like when I gave birth. Every time I heard a code called over head I jumped. then I would text my Mother. Keturah began acting out when i came home a few nights to see her. I couldn't blame her. I tried to be strong in front of her. She knew her sister was sick, but at that age being sick to her meant a cold. One night Keturah pointed to her sisters swing and said " Where is baby sista." The sobs I had been holding back racked me. I sobbed so hard for so long. I couldn't help it. I told Keturah I was just so sad inside about her sister. Looking back, she probably wondered why I didn't cry like that when she got sick.
      As the weeks past and Amalia improved it was actually more time consuming because with Amalia in intermediate care there was less supervision and I felt I should be there always. She was having seizures that no one would see or notice if they weren't holding her and her eating was poor. When I held Amalia and saw the monitors look OK and saw her breathing right I felt OK. When I wasn't there I panicked. I won't lie, even though I felt bad for Keturah it was seldom I stopped and thought about what she was going through. I was so focused on Amalia I didn't even have the space in my brain to worry about her. I knew she was safe with her father or Nona and she would have to understand the " party" was over for awhile. Ami grew stronger and gained weight, however stilled seized a few times an hour. Every time her eyes would roll I would scream for a doctor to come. The doctors were all kind, sympathetic and never had the guts to tell me what they were really thinking which was " Mam your daughter's brain MRI displayed 78-80% brain damage, her EEG's show her brain activity as a 27 week old GESTATIONAL baby. What do you expect? Your lucky she can still drink out of a bottle.
       The second home coming wasn't like the first. It was a cool fall day and my child had ports, wires, apnea monitors and medicine. As Keturah walked in with us, she looked petrified. It was hard to console her because I was more scared than her, but I tried to smile and explain what all the equipment was. As anyone knows who has had an infant on an apnea monitor, they are great piece of mind. All you do is put four stickers on your baby's chest under their PJ's and if the breathing or heart rate is erratic or stops the alarm sounds. The alarm is horrific, it sounds like a bomb squad is invading, but all the while necessary. There is a battery that lasts up to 8hr in case it is accidentally unplugged or there is a power outage. Every month a representative come from the company and sees that is is working and takes a recordable disk out that a doc analyses to see if there are apnea episodes. Even though that alarm sounded often there were never any recordable episodes. The first year home we went to the hospital 24 times. Keturah and I would be hanging out and all of a sudden BAM!..I had to leave or she would wake up and Nona would be there not her Mom. Keturah had Pre-K program twice a week and my Mom agreed to watch Amalia so i could spend time with Keturah. As the year wore on my Mother took my place as Amalia would scream constant and my Mom was scared, so was I.
      Many mornings a week Amalia had therapists and teachers come to the house. When Keturah would say " Mommy, Mommy Mommy" therapists would shush her and say " Keturah your Mommy is busy learning what to do with the baby." Keturah began to act out and it was no mystery as to why. As life went on Ami hit physical milestones we never thought would happen. Keturah got more used to our slower pace of life and adjusted. She was such a loving compassionate child. When her sister would cry she would say " It OK sista turi here." Keturah would help put on Ami's orthopedic footwear, Theratog ( velcro fest to help her tone and scoliosis) and strap on her helmet as a very unsteady and low toned Ami began to walk at 15months.
     Every time we went on an outing we had limitations. Ami couldn't be in the sun ( due to her seizing and meds) not exactly easy to bring them to a park or beach or even outdoors in the summer. Also Keturah had a new cousin and had to share Nona, though I will say Nona spent the majority of her time with us, for she saw the need. There is this feeling like I can't explain when an event like this happens. For two years I would wake up each morning and you know that insta sec. you wake up and forget where you are in life..then you recall. My first thought in that insta-second was ( I can't my believe my child has brain damage?).  I wanted my first thought to be ( Thank you God for this day and my two beautiful daughters).
      As time marched on Keturah was turning into a delightful child and we all began putting the trauma behind us. The one thing that was hard to let go of where the questions. ( Was it my fault?) (Did I miss something the first week home?) ( Was I too active the last weeks of my pregnancies.?)  ( I was on meds the first month I found out I was pregnant and out of safety my doctor had weened me off.) All of Ami's doctors assured me it wasn't my fault. They said this was so rare and so specific, nothing I did would have caused it. As much as I love my Mom she doesn't have the gift of tact at times. A matter of fact emergencies and pressure bring out here worst. Hey, we aren't all born to be paramedics. The day Ami stopped breathing I called her screaming " Get up here my baby is dying." She said something to the affect of " What did you expect with all the meds you were on when you were pregnant!!" I hung up! It wasn't the kind comforting words I expected to hear. I was looking for a " I love you and will be right there, it will be OK." I guess I just needed someone to tell me it would be OK, but no one could. Other questions I had were ( What would be Ami's functioning?) I was told she could grow to be very high functioning or her brain could halt at any age. Geeeshhh, that was reassuring. Keturah was so confused about her sister. Her sister didn't connect with her or want to play with others. She wouldn't answer direct questions or any, but Ami had immense impersonation skills and could repeat any voice, tone or song in a stunning similarity. Her speech was clear as day ( if she every took her Binky out) yet what she said made no sense. Keturah would say,
 " Ami want to play dolls?"  Ami might say " They send me to rehab and I say NO NO NO." in the deepest most accurate Amy Winehouse voice. Keturah looked at me puzzled as i tried to explain to my 4yr old her 2yr old sisters behavior. I wasn't blind  a child one month older than Ami lived next door, my nephew was 6 weeks younger than Ami. I saw differences, but nothing as damning as I thought I would. Ami could see and hear normally, well her hearing test was inconclusive, but one would have to participate in the test to get a result wouldn't they..LoL..
         Many professional thought I was nuts. i was invalidated alot. Ami was the type of kid who looked great, but once you got to talking to her you were aware something wasn't quite right. As she grew her issues stuck out more, but Keturah adored her and I did everything I could to put Keturah first. Unfortunately I have not succeeded. I put her in activities such as Dance, T-Ball, gymnastics and soccer. I wanted to make sure she had all the normal experiences. I wanted her to have her own identity and she did. Unfortunately as time went on I still couldn't shake the guilt. John and I were crumbling, we were never strong enough to have a decent relationship let alone a challenge like this.  As I researched, ran to specialists and talked incessantly about what we could do to help Amalia, John worked many hours. I thought he was disconnected, he thought I was an ingrate. I was stressed, Ami was a ticking time bomb, one minute smiling the next screaming as if she were in pain. She liked to stay home and watch her favorite shows, any outside activity stressed her.
    One May 8th 2008 John had just bought a new car and the weather was great, he had a Monday off which was rare and I recall going to home depot to pick out planters then to the park. On the way home there was a radio show on satellite radio about Autism and other brain disorders in babies and children as John tried to change the channel I screamed, " NOOO".  He then said something that hurt pretty bad, but I don't think was meant to be mean. he was frustrated. " He screamed is all you think about is autism and developmental crap! There are other things in life!!"  I began to sob not because I had my feelings hurt, but because I knew he was right. OK Ok, my feelings were hurt. I thought I had tried so hard to gather knowledge, to help my daughter. If I wasn't going to help her who would? As john yelled and I cry I caught Keturah's expression in the rear view. I thought if the music was loud enough and my sunglasses were dark enough she wouldn't know. Keturah knew something wasn't OK, something was wrong and Mommy was sad. The stress and hurt sawed away at me and I felt so so alone. After a talk with John that afternoon he explained in a nicer way what he meant and I felt better. He ran errands and i took a nap with the girls because that night was Amalia's gymnastic class for Special Children. Keturah was included and it was always a feel good time. It was my first experience meeting other Special needs families. While I wasn't glad so many children had disabilities, it felt good not to be alone. After class John dropped me off to pick up my car at Walmart, yes Walmart not a place for a car. After the longest wait ever, the kids got in my car and we followed John to a local fish fry. We could eat in peace as Ami stared into the fish tank with wonder. i don't remember much of what happened next. I do recall trying to order my kid's dinner and I couldn't speak in a slurred voice I called " John something is wrong!!" He replied with his snappy " Whats knew?" I began to walk down the hallway so my children wouldn't see what ever I felt happening in my mind. The last thing I remember I was walking down a narrow hall and it got darker and quieter. According to witnesses I circled about 4 times as I peered at the ceiling. What happened next could have killed me. I fell back, poor John was holding Ami and was able to catch me before my head smashed the ground. We often joked when we were going through our break-up that I owed him because he saved my life, he would say " I could have let you hit the ground." Anyone who knows John knows this was said in a humorous way.
    I then went into a 17min seizure. I had no history of seizures. When I woke up I didn't know how I got on the floor, who I was, where I was. The first time  recalling anything was when the doc. said softly to my Mom, ( you do realize she needs to surrender her licence for six months atleaste) I popped up and yelled ( no no no no I am fine, I just passed out freak incident.). It was later I found out I had similar seizures to Amalia's. When I came home from the hospital a few days later ( yes I know I go to the the hospital alot.) I couldn't remember anything, my head hurt constant and my sweet sweet Keturah wouldn't leave my side. I was so so FREAKED OUT, what if i had a seizure when i was along with my children. Ami was already a danger to her self, let alone without adult supervision. I talked to Keturah about calling 911 and she seemed to understand. I couldn't ask her to go next door to our neighbor's because then I would risk having Ami run out into the road. My heart broke that on top of everything Keturah already carried on her shoulders now this. My Mom spent the summer with us helping. She was amazing and came over everyday to help us and drive us. I got on seizure meds and started to do a bit better. One thing i did know was the place we were when i had my seizure was public, when I called them they said my episode was directly under a security camera. For 65$ their brother security guy retrieved me the video and gave it to me. not for entertainment, but to take to my doctors and well i wanted to see what the hell happened. As I watched I couldn't believe what I saw. John didn't want to stress me more so he never mentioned what I had suspected, he had told me my children sat with a couple while this happened however on that video I saw my sweet little girl Keturah sitting at my feet staring right at me. I saw Ami, but she was busy doing other things, not Keturah. I saw patrons trying to take her to their table and calm her, but she sat stone faced at my side. "FUCK, I said to myself. FUCK FUCK FUCK FUCK..." I know eloquently put. I immediately called her pediatrician and asked for a referral to a counselor. I needed to make sure Keturah was ok and her mental health was Ok, between her sister and I she had too much for her little mind to deal with. Her evaluation showed she was doing well. Maybe too well, she wouldn't open up at all.
         Her next session we met with a nice young woman who had just finished her Masters program at SU. She asked Keturah to draw her family on a huge chalk board while her and I talked. When we turned around Keturah was giggling. I was having a hard time telling what she drew, but it didn't look like a family. When the counselor asked her what she drew she proudly explained. " This is my Mommy farting and going poop." After a died inside for a moment all I could think of is " Wow, what a deeply troubled child." therapy didn't help much because when the topic turned serious Keturah always made jokes.
        Life moved on and after being on meds I never had another episode like that. Keturah was my best friend, my side kick. We both felt that need to lean on each other, because Ami cried and screamed so much we didn't know how else to make it through. Eventually when her father moved out she hit a rough spot as expected. However there was peace in our house hold and she still saw her Dad. Ami prepared to transition to Kindergarten. I was thinking how cool it would be to finally have both my children just less than a mile away at the same school. I never stopped to think about the reality. The reality was that Keturah felt responsible for her. Keturah was her sister and in my family we look out for each other that is the way it is. The school felt differently, they thought it a burden on Keturah's shoulders. I would never succumb to this philosophy. Keturah sat with Ami on the bus, the only time I felt bad was when Ami cried the whole way to school. So i then drove Ami, so Keturah wouldn't have to deal with it. i could have put Ami on a special bus,. but her attendance was too erratic to even consider it. Keturah would come home and tell me some things that didn't seem right. The school was defensive and acted as if I was asking Keturah to spy. I never had to ask her, it was her instinct. The good thing about the girl's growing older is Keturah and her friends are finally at the age where they understand Amalia has some issues and they have stopped questioning her antics, but embarrassing her.
        Last night a good friend came over who is a generation older than I. She told me that it was only my generation who took this " me I me I me me me attitude". Before this family cared for each other no matter what. Siblings or Grandparents weren't looked at as " burdens". After she left I thought about this. I watched Keturah helping her sister hold our new Guinea Pig. I thought about the kind, compassionate, caring individual Keturah had grown into. I thought about how when she encounters a child with special needs she will know what to say and do. The lessons of humility, humanity and faith Keturah would now have ingrained in her were invaluable. Keturah wasn't ( The Other Sister) she was an equal part of the equation.