Sunday, May 29, 2011
"No, no, NOOOOOOOOOOOOOO!"
Bugabuga kicks out both legs as she protects her bed. "Noooooo!" She sobbing and wild, her arms are flailing-she's hitting into the bed frame. I know I need to stop her because she'll hurt herself. I grab her arms and she pulls me down and tries to bite my face. I overpower her, sweating with the effort of gently restraining her.
"No! Mommy, please, no!"
"Come on, baby girl. You need to get off the bed." It's the same each time.
I pick up Bugabuga and place her on the floor. I quickly strip the sheets off the bed and place new ones on. I turn to the next bed and I see a figure out of the corner of my eye jump onto the freshly made bed and start tearing the sheets off.
"I need Dora! Dora! Dora! No stupid flowers. Bad mommy! Code Yellow!"
"Listen you. Get off the bed now or I will throw out the Dora sheets and you won't have them anymore. I'm not code yellow."
She scrambles off of the bed worried that I will trash the beloved sheets.
She runs from the room, "Bad Mommy." I won this battle.
I sit on her bed and close my eyes and steady my breathing. My tough love is harder on me than it is for her. I worry that she is going to hate me one day. I need to fight this battle now because one day, when I'm gone, I need to know that she can change her sheets and not keep the same sheet on because she can't handle the change. I'm hugging the damn Dora sheets like they are my best friend.
I just want to change her sheets.
Saturday, May 28, 2011
I have always wanted a son. I wanted a rough-and-tumble little man that was the spitting image of my husband. I wanted a Mama's boy and 5 months after I gave birth to the girls, I got pregnant with my son.
The pregnancy was a breeze compared to the girls' pregnancy. I barely noticed being pregnant except when he would punch my bladder over and over and over. That and the morning sickness which turned out to be more like 24 hour sickness. The doctor gave me something to settle my stomach so that I could keep food down because I was losing weight.
I gave birth on a Monday afternoon, an emergency c-section, which my husband almost missed. I was by myself for most of the laboring and I suddenly felt very light headed. I found a nurse and they checked my sugar. I was hooked up to an IV so fast my head spun. They took my blood pressure and then started calling different doctors in. Did they really expect my blood pressure to stay down if there were about 6 different professionals looking at me very concerned?
The anesthesiologist came and spoke with me. I thought he was egotistical but I didn't have any choice on who was involved in the delivery. They wanted to take me immediately but I asked to call my mom. I started crying on the phone. I was afraid to do this alone.
They wheeled me into the operating room. I leaned forward to get the epidural combo and I felt terrible pain in my back. The anesthesiologist cursed under his breath. I felt another terrible pain and then another. My head was hurting so badly, I started vomiting. A doctor stood in front on me and pushed my shoulders forward and down. "Go, now." Another sharp pain, "Step away, I'll take over." I was stuck 5 times.
Another doctor spoke into my ear, "Take a deep breathe. Now, how do you feel?"
"I nnnnnnnnnnnn oooo aaaaayyyyyyy."
"Slurred speech. Too much went in. We need to check for spinal fluid."
"Your husband is here! We'll let him in in a few minutes and then we'll have a baby!"
I couldn't feel anything, not even my shoulders. I kept forgetting to breathe.
My husband walked in and I was so relieved that I wasn't alone.
My son was born 7 minutes later. The doctors encouraged my husband to go with my son and they worked on me, my breathing was getting worse.
I stayed in recovery for about 6 hours, I wasn't able to regulate my breathing. Over and over I would hear a machine beep and a woman's voice yell at me, "Breathe! Now. Breathe!" And I would take another deep breath until I forgot again.
My husband and brother came into see me and they both looked concerned. I imagine that I looked like shit. The nurse explained that I was having a hard time breathing and they waited around for me to get out of recovery.
My husband stayed with the girls most of the time and I was left to get to know my son. This most wanted and handsome little boy. From the moment I saw him, I called him my Handsome. It was a rare moment that I let him out of my arms so it was not a surprise that on the Wednesday after he was born, when a headache started overwhelming me, he was in my arms. My aunt came to meet her Godson and I played it off. We had visitors. The nurse gave me something for the pain but it didn't touch it. I couldn't eat my dinner after everyone left. The doctors came in to check on me once they were told that I had a persistent headache and lost my appetite.
"We'll keep an eye on you. You look good so far."
It was about 9:30 when I was holding Handsome in my arms in bed. I leaned forward to get up and get him a diaper but suddenly my body spasmed and I clutched his little body to me. "Oh God, please don't let him fall." I screamed and the woman in the next bed rang the emergency bell. I was hanging off the edge of the bed, the pain in my head was making black spots appear and I started vomiting. I turned my head away from Handsome and tried not to choke but I couldn't move. A nurse grabbed him out of my arms and three others picked me up. The doctors were there checking me and drawing blood. I could not comprehend what they were saying. The pain was unbearable.
I was sent for an emergency MRI and it was determined that I had a small spinal tear causing my spinal fluid to slowly leak out to the point that when I moved my brain was not cushioned correctly with fluid causing the terrible, blinding pain. That anesthesiologist, so confident, had fucked up and I went down as a statistic. A complication from birth-a spinal/head injury.
Drug after drug and another procedure, to relieve my pain. My Handsome was with me the whole time and made it bearable. The day that the doctors told me that he was going to be released and I was going to have to stay, I knew that it wasn't going to happen. I signed myself out and went home to my family. It was a terrible recovery and I tend to get migraines now but overall, I could not imagine being separated from my Handsome.
I met my husband the first day of college. I was in a long distance relationship at the time. We were at a Freshman orientation mixer, each of us had to say our name and major and move on to the next person. I remember looking up as far as possible and making eye contact; I had the instantaneous thought that I would marry that man right that minute if he asked me to be his wife. It was the oddest feeling and I remember looking back at him and was shocked that he was looking back too.
My husband doesn't remember this at all. LOL.
We didn't travel in the same circles, I was surrounded by business and education majors while he was immersed in the Communications field. We had a couple of core classes together. I was that annoying girl that would sleep through the 8:30 History class but wake up quickly in order to disagree with another pain in the ass. My books fell off my desk every class as my head would fall forward. The falling books would wake up my husband, not a great impression.
We had Art History together. We ended up sitting next to each other and I was struck by his politeness and he was struck by my cleavage. We started a really nice friendship and both of us arrived early to talk to each other. There was a guy that sat next to us that told me one day, "At our 10 year reunion, mark my words, that will be your husband."
I was still in a relationship so we just had a nice friendship and when the class ended we went our separate ways.
We didn't met again until our second semester of Junior year. I was newly single. I went to the Media Resources room to met a friend and watch a chemistry video. My friend was supposed to be working the desk and I walked in expecting to see him but instead found my future husband. I signed out the Chemistry video and I remember putting the video in the VCR and I was about to press play when I made a joke about falling asleep like I used to in History class. He started talking and I just stood there listening. I was riveted by his voice. It was deep and full. I could hear everything he was thinking just by listening to the nuances of his voice. He talked about his love of radio and I was so impressed by his passion. He laughed at my jokes and I couldn't stop smiling. We spoke until the building closed. We were so distracted that I left my ID in the media room. We stood outside of the building talking for several more hours and I remember feeling like my life was changing in front of my eyes. We finally ended the conversation right before the last bus leaving campus for the night departed. He went home and I ran to my friend's dorm room.
"I'm going to marry him. I think I'm already halfway in love."
Many friends have told us that it is rare to see what we have but once you do, you realize that ordinary love is a pale comparison. And on the especially hard days, when I reach for my cell phone to text my husband, it's not unusual for it to vibrate in my hand with a message asking how it's going.
I think back to the first day of college and remember the absolute certainty that I felt when I met him and I look at our little ones that have made our life so much more full and I know that I fell in love at first sight and 15 years later, I still giggle when he smiles at me.
Tuesday, May 24, 2011
A co-worker gave me 4 tickets to the NY Yankees game against Toronto tonight. We tried without success to get a sitter. We weren't sure that the kids could handle all of the noise and excitement but we really wanted to go! I've never been to the new Yankee stadium and my husband is a die hard fan.
With trepidation, we walked to the subway to head to Da Bronx. No sweat.
I was a wreck.
"Everyone hold hands! No matter what, never let go."
The kids were in high spirits, excited to see their first baseball game. They ran around with their little gloves.
They were amazing. I am in awe of them. We sat in our seats and they sat with their little gloves high in the air so that they could catch a foul ball. Bugabuga took her glove off when the Yankees were batting, because she was on deck too!
They cheered with the crowd and smiled randomly. The Baby and CEO giggled on the crowded train home. We didn't have one tantrum. My husband and Bugabuga slept for most of the trip and my handsome little boy listened to Omega on the IPhone. It was beautiful.
It's what I've dreamed of, and I had one of the best days of my life today.
As we tucked them into bed, each baby still smiling to themselves, I leaned down to kiss each one on their foreheads.
I turned to leave the room and the CEO sat back up suddenly.
"Mom, I love you Berry Berry Much. Good night."
"I love you too."
Sunday, May 22, 2011
I know you have a little life in you left, I know you have a lot of strength left...
I should be crying but I just can't let it show...
Make it go away....
I'd like to say that I handled the kids diagnosis well but that would be a lie. I wanted to die. Every single minute of every single day for about 6 months. I never said a word to anyone but my husband. I smiled and acted like we were okay. I was amazing at incorporating their goals into our life. I was playing the role of the perfect mother. I lived in fear of a social worker catching wind that I was devastated and would question whether I was capable of caring for four Autistics. The only reason I woke up in the morning was to care for them. They didn't ask to be born, I wanted them. I wanted them so badly that I paid over $100 a day on fertility appointments and drugs for years. I wanted a baby, NO MATTER WHAT. And here I was facing NO MATTER WHAT and I wanted to die.
At one point, I truly thought that I could win an Academy Award. The Early Intervention team constantly congratulated me on my positive attitude and I smiled and shook hands. I remember a friend that happens to have an Autistic son told me, "No matter what, always take a shower. If you look like shit, CPS will come in. Just because you're a high risk family, don't let people bully you. You know what's best for your family, only you and your husband."
I showered religiously.
I went through the motions. I became a shell, not even of myself but a shell of a human. There was nothing left to me and there is no flowery way to say it-that is some scary shit. The only things that kept me grounded were my children. I could feel their hunger in my body a minute before they cried. I knew when their tummies hurt and I could feel their teeth ache. I was that connected to them.
I remember giving birth to the girls and feeling as each soul separated from mine and I remember that moment of peace when I felt my blood hemorrhaging out of my body before I passed out. I remember my desire to hold my children...
I stood in front of the children, staring at them. It was a Friday night/Saturday morning and my husband had been at work almost 24 hours at this point. I no longer slept so it wasn't unusual that I was awake at 4:30. He was everything I wanted. They were everything I wanted. What the Fuck was wrong with me? They are my NO MATTER WHAT.
I picked up Baby and started talking.
"I want to be happy. I want you to be proud that I'm your mother. I want to work and have a career and I want to find myself again. I miss me and I think you would really like the real me. I don't think I'm doing that great of a job but I'm doing my best. I promise, I'll never leave you willingly. You're my everything. Okay?
I stared into her little eyes and giggled when she burped. A second later, she projectile vomited all over my face and hair. I began to belly laugh. Nothing like a little vomit to put things in perspective.
My first heart-to-heart with my daughter was a turning point for me. I cleaned us up and was able to fall asleep.
I'd like to say that I'm back to myself but I'm not, I'm a totally different person. I'm much more serious, I feel a hardness in my soul. I struggled alone because many people couldn't bare to feel uncomfortable and extend themselves to us.
I found new friends. I became who I wanted to be. I lost all pretenses. I will help a stranger understand this disease and know that they aren't alone. They are normal. I will hold my hand out and help them stand when they want to curl into a ball because I know.
I see everything in my life as beautiful and filled with silver linings because I know how stark things can look. I KNOW. I understand and I'll hold your hand...
Saturday, May 21, 2011
Necessity is the mother of invention and I am one inventive mother out of necessity.
We're a musically inclined family. My husband works in radio. I have loved music and singing for as long as I remember. Every room has a different station on, English, Spanish, Christian, NPR, doesn't matter. We live and breathe music and radio. I remember being pregnant and the girls jumping around when my husband was listening to "Pardoname" and considering adding it. To this day, their little tushs wiggle when that song comes on. Hey, some moms play Mozart, I played Spanish Top 40 and Elvis Duran's show. I've yet to see the kids calmer than when they listen to Elvis Duran and the Morning Zoo. They laugh when I do and seem so content, so the Zoo is on every day. The kids realized early on that Daddy was on the radio and I noticed if things were getting overwhelming, they would run to the radio and put their head to the speaker, waiting to hear Daddy's voice. They did it any time of the day and I laughingly tried to explain the difference between middays and afternoon drive to 18 month olds.
Our Speech Therapist recommended that we turn the radios off so that the children could speak to me and not focus on the background noise. I have to admit, of all the things I was asked to do, this was one of the hardest. Our house was silent with only my voice filling the space. Every night my throat hurt from speaking non-stop to fill the void of music. There were no spontaneous sounds coming from their little mouths and I was sick of singing Old McDonald Had a Farm. The only farm they were going to see was the funny farm when they came to visit Mommy. I was so done. This wasn't working, my throat hurt.
I said screw this and started to devise a plan as to why I the kids NEEDED the radio and music on all day. This was very early on in their therapy and I thought that I couldn't disagree with a PROFESSIONAL so I was being devious. Give me my Morning Zoo! It was my only chance to laugh and dammit, I couldn't willingly give it up. My reality was too stark and a well executed phone tap or Stupid News would bring a smile to my face.
"Child will learn to point." "Child will begin to play with sounds." "Child will decrease rocking behavior."
Three different goals for three very different little girls. I racked my brain for ways to engage them. One day, I was cooking and the kids were lined up in their highchairs. A song came on that I loved and I started dancing. My Bugabuga looked at me like I had grown horns. So I took my two pointer fingers and held them to my head and wiggled. Inspiration!
I began rocking back and forth while pointing and singing. The CEO could rock while dancing and no one would know that she was stimming! If she had a set time every day to dance, then her rocking would decrease. Bugabuga could sing with me, "I'm Blue, Ah-Ba-Di-Ah Ba-Die! And the Baby could point her little fingers in an old school type dance!
Music was back in my life! I felt light hearted and hopeful once again. And for all my radio friends out there, yes, my TSL increased dramatically from that point on.
I hear others' stories constantly. People seem to think that I want to know every person touched by Autism and in someways, they are right. I want to give every parent with a child on the spectrum a hug and look them in the eyes and tell them that it is okay. But in other ways, I cry for them, because I know what they are surviving and I know that happy moments are hard earned.
I live in a constant state of denial. No one will ever convince me that my children have autism. We've seen 73 specialists, they all agree with each other, yet with each report, I'm shocked that another professional sees these markers. I think the only way I can deal with the diagnosis is to deny it.
I consider myself educated and intelligent. I can spit every word that is written back out if it means that my children will get more therapy in the school system or Early Intervention. But those days that I read the reports and meet with the administrators knock me on my ass. It makes me face my denial and it makes me feel so low that I can't bare it so I focus on the positive. I focus on their speech and the alphabet. I mangle the Itsy Bitsy Spider song on purpose. The Alphabet has no shot in hell of being sung in order. If my children want to think inside the box, that's fine because I am going to make their box so huge that it won't stop them from growing and excelling.
My Bugabuga likes to look down and stare at her fish. That is her world. I needed to make her world bigger. I needed to live in her fish tank. So I did. I put pictures of fish up all around the house. High up so that her chin couldn't stay glued to her chest. I bought fish pajamas for myself. I needed her attention and I got it.
The CEO hated red. It is a sure sign of regression when she shies away from it. I couldn't lose her again so I made everything red. Rice, chicken, fish, vegetables, shirts, pants, plates, forks, curtains, walls. Everything. I hated it but we did what we had to do. It's not acceptable to reject things without reason and she learned that. She understood and she began accepting different colors, textures. Her world became a little bit larger.
I'm not of the school to coddle a special needs person. I'm more of the school of thought that no one has limits unless they impose them on themselves. We don't always choose the easy road but we choose the road that will lead to a more rewarding life in the long run for the kids. I think a really important thing to realize is that it's not only hard for the kids to expand their worlds but it's hard for the parents to push when they would rather hug and hold.
I took a nap today with Baby. And while every day I push her to speak at an appropriate volume and help her work on her auditory processing; when I can, I'll hold her hand while we sleep and cherish every moment.
I cherish all of the joy of just being with them and knowing them and being their mother.
Sunday, May 15, 2011
My husband and I watch the same shows. We laugh at the same jokes, we fall asleep at the same moment when the show lulls. It's always been the same, never a discussion, always on the same wave length about our prime time choices until this year's American Idol.
I don't have any strong feeling against Jennifer Lopez and I think Steven Tyler is an amazing artist. I was ready with the remote just like every season. And then I saw this spotlight on a kid named James.
I was amazed by the way my husband and I viewed this spotlight so differently. See, we replayed the spotlight about 6 times, hanging on every word. I looked over to my husband and he was wearing a wide smile. I could see the hope on his face and when James began to sing, the complete joy that my husband felt to see this guy with Autism excelling and being accepted.
I couldn't bare to watch. By the third time we replayed the words high functioning autism, I was crying. And when I heard him sing, I couldn't catch my breath because I was sobbing so hard. I knew his intensity, I see it every day in my children. I knew instantly that I could not see this kid get voted off the show. I knew that mentally, it was going to take a toll on me. The thing was, that I could not stand the idea of people judging him, judging us, if that makes any sense.
I shut my mouth and let my husband have his hope. I sat next to him and watched the show but my mind would focus on something else-more often then not-Angry Birds. It drove my husband nuts but I couldn't find the words to express what this show was doing to me. I felt like I was James' mother. Every note he hit, my body reached for it with him. I would hold my breath through most of his performances. It was unbearable to me.
And then one week, we were very busy and we backlogged about four episodes of American Idol. We did an Idol marathon with the kids sitting watching the show with us. They love the show. They dance and sing with all of the performers, it was a peaceful Saturday. Until we saw James struggle a bit on stage and I lost it.
"Why do you make me watch this show?" I was so angry. "I hate it! I can't do this anymore!" I couldn't speak coherently. I was so upset. What if I had to see James voted off? I could not do this. So my husband and I argued over Idol. I was adamant that I was never watching this show again and he was shocked and flummoxed about my reaction after weeks of non-reaction.
Weeks passed and I never looked at the show again. My husband watched it when I was sleeping or at work. He still looked baffled by my heated emotion to this show but he let it lie.
My worst fears were realized this past week. James was voted off the show. And although, I tried to hide from it, my Facebook page and Autism support groups blazed with the news. I cried. How could America not see how perfect this young man was, how talented?
I came home from a long day at work and my husband said, "I recorded something for you to see." Before I could stop him, he played back the moment when the results were announced. I was paralyzed in my seat. I watched as James watched the recap and sang his swan song. Every note landed like a fist in my stomach.
James gave my husband hope that he needed and his success is a balm on his soul. For me James represents every dream and hope that my body possesses and that type of hope was unbearable for me to actually see.
I know that I have to work through all of the emotions that a diagnosis will continually bring into my life. But sometimes, I'm human and I hide to survive. Some days, I don't want to look at Autism straight in the face. Sometimes, my eye contact is fleeting and I UNDERSTAND my children. I understand the overwhelming emotion of looking at something head-on and I feel like another puzzle piece falls into place for me.
And I'm thankful for my life, for my kids dancing to James and my husband knowing to hold my hand while I looked at this guy that could be my child, succeeding and while, not winning, getting a normal experience like other talented performers. His diagnosis doesn't define him and that is what was so difficult to see because that is what I WANT. I want my kids to be successful and happy in their own right, not just a successful Autistic.
Honey, pass the remote. I'm ready to watch the show again.
Sunday, May 8, 2011
Today was a wonderful day.
"GUYS BE QUIET! Mommy is sleeping!"
"Shhh!" "On no! I woke her up!" "No wake up Momma!" "Mommy's sleeping?"
My eyes fluttered open but I knew that I wasn't supposed to be awake yet. They were trying so hard to let me sleep in so I closed me eyes again and drifted back to sleep.
I gave it another hour before I ventured out of the bedroom.
"GET BACK IN BED! We're not ready yet!"
I turned around and plopped back on the bed. A minute later, my family opened the bedroom door and rushed in carrying cards, waffles and flowers. I smiled and reached for the cards as my handsome little boy jumped up on the bed and knocked the waffles off the plate.
Everyone was impatient for me to look at their card. I ohhed and ahhed appreciatively. The kids were dressed for the day already. Their daddy had even brushed their hair and put them in ponytails. The Baby had a box for me. I opened the wrapping paper to find that her teachers had taken a picture of her and glued it to a box. She had made me a necklace that she decided that she NEEDED to wear. The CEO had a nice picture of us peeking out of a paper plate basket. The Bugabuga had a card colored for me. I was so touched.
We went to the Aquarium today. I knew that the Bugabuga would love it. Fish are her thing. I was concerned that it would be too much stimulation for them but I wanted to go out with them today. I wanted the world, or at least Coney Island, to see that I was the mother of 4 amazing kids.
Their eyes filled with wonder as hour after hour we looked at every display that was available. We sat and had lunch together. No fighting or screaming, just smiles and conversation. I was in my glory.
Bugabuga was smiling so much that she kept holding her cheeks so that her smile wouldn't slip. Her teachers and therapists have shown her that if she pushes her cheeks up she can form a smile so she did that continuously today. Her joy made me laugh from happiness.
There were screams and tense moments but I looked the other way today. I needed a nice outing without focusing on the rough transitions or overwhelming moments. It was overall a positive experience. The kids went to sleep with smiles and I feel tears well every few minutes as I think back on the day. They tried to write their names, they smiled, laughed and danced. They are amazing. I'm so lucky to be their mommy.
And not to be forgotten, my husband gave me concert tickets for Debbie Gibson and Tiffany. Be still my 80s-chick heart.
Out of the Blue
It's like a dream come true,
I never thought I'd fall in love with you.
Out of the Blue.
We tried to have a baby for 10 years.
I had so much time to perfect my mothering style. I was going to read the baby a story every night. Buy the most beautiful clothes and toys. I would make the baby food from scratch. I had waited 10 years, I knew what I was going to do.
The girls were born premature. Baby couldn't maintain her temperature and had to be checked every 15 minutes. I was a wreck. What if I fell asleep? Would she get cold and die? Anytime I felt slightly tired, I picked her up and held her against my body to keep her warm. I was afraid to put her down.
Three babies at the same time!
I wasn't prepared for triplets. I tried to be but they knocked my socks off. I ran back and forth. Bottle, diaper, burp. The house didn't smell like new baby smell. It smelled of shit and formula. They pooped so much! I was a failure!
As they got older, I began to work with them to hit their milestones. Things didn't seem to be going well but I kept trying.
And then the diagnosis of Autism entered our house. Instead of sitting behind my child giving a hug, I sat behind my child to mold my body against hers so that she could sit and participate in therapy. Reading bedtime stories flew by the waste side. Instead, I stared into their little eyes for a half hour at a time so that eye contact was expected and maintained.
I often imagined rocking my baby to sleep. Instead, I held my baby so that I stopped the uncontrollable rocking.
I was like any new mother, enchanted with my children. My camera flashed dozens of times a day to capture their brilliance. As I look back through the pictures, I'm struck by the lack of smiles, by the blankness.
We created programs with the therapists to help the children learn how to smile. We began working on it earnestly. Our children can smile appropriately, with only minimal encouragement.
I trashed the homemade baby food idea quickly, it took so much time and I think my attempts sucked. Bugabuga made the most comical expressions when trying the food. She was a trooper but Mommy was a bit out of her league.
Motherhood is nothing and everything I expected. I thought the most difficult times would be when the baby had a fever or was vomiting. I never imagined that I would be massaging my daughter's throat to teach her how to swallow. But the love...
It's so much more than I have ever hoped for. Holding hands and skipping up the block, laughing because I'm messing up the words to beloved songs. Hugs and kisses that always come at the perfect time...
It's my beautiful version of motherhood.