Sunday, March 27, 2011
A diagnosis can be isolating. Friends don't know what to say and you don't want to go into a social situation that can turn awkward. Socialization doesn't happen.
I had a couple of friends that used to call. "How are you?" "Oh God. It's so hard." An awkward silence would follow and the calls got shorter and shorter. No one wants to be THAT person, the one that walks away from a terrible situation and pretends they didn't see the train wreck. A person that hears a story of a fatal car crash on the news and knows that they drove right pass it. In their heart, they wonder if stopping would have helped but they will never know. The only person that knows for a certainty that stopping would have helped is the survivor standing alone with the battle scars.
There were a couple of years that I extended myself. I felt such anger for the friends that disappeared. I listened for hours about them making decisions about their life. "Should I marry her?" "Should I change careers?" "I'm thinking about moving." I listened and opined and then I wanted to ask, "How could this happen? Why did this happen?" There were no answers, I didn't expect any but I needed to say these things to clear my mind. Every one was gone. Off to live their lives and avert their eyes to the train wreck that used to be a friend once upon a time.
We weren't invited to events anymore but we would see the pictures from them. A tweet from a former best friend referring to an awesome time in the city with all her NYC friends. I was so hurt and I felt myself begin to harden. A bacholerette party, a wedding, a birthday, a dinner-I never made the cut.
I was looking in the mirror one day and noticed there was a flatness to my expression. My eyes were old and my usual smirk was replaced with a hard line. It was the face of someone who had forgotten how to laugh, how to enjoy their life. I thought about it long and hard for days, my children's expressions were flat, was I turning into them or was I flat and they were just mimicking me? I made a decision to start living again, without the people that forgot me. I decided that day that if a person had never taken the time to meet our kids our friendship was over. There were no excuses.
I've heard reports that people can change radically after a traumatic experience and I always felt pity for those people but it was the wrong way to look at it. Those people are survivors, they have walked through hell and come back weathered. They will grab a stranger's hand if only to try to stop someone else from being surrounded by complete darkness and silence.
Freedom and joy are constant when the goal is to just live to be happy. There will always be stresses and issues but the big picture is sometimes the most clear. If I continued to be bogged down by some day to day realities, my life would have continued sadly. Yes, one of our daughters bites and hits herself. Yes, one of our daughters rocks continuously on her tail bone. Yes, one of our daughters quietly retreats. Yes, our son has delays. BUT, they can laugh, they love. They have a good life and so do I.
Friday, March 25, 2011
I started battling pre-term labor at 20 1/2 weeks. I went for ultrasounds every week. There were 3 babies in there, any thing could go wrong. I went for a routine cervical check on September 6th, 2007. The technicians were always so kind and smiling as we caught glimpses of the babies moving around but that night, the technician's smile froze and she excused herself. That was odd but I was looking at the pictures that she had already given me, no worries. Another technician came in and started examining me. Now wait a minute, what's up? Both looked at each other and the supervisor said, "We are not allowed to discuss our findings a doctor will call you to discuss the results." "Get me a doctor!" "I'm sorry the doctor has left for the day." "So you're telling me that something is going on but I'm not allowed to know until the doctor calls? You're scaring me. At least tell me that there are still 3 heartbeats." "Yes we can confirm that there are three heartbeats." I took a deep breath and relaxed. I wasn't going to get any more information that night. I left a message for my doctor and she didn't return it.
The next morning, I woke feeling crampy and sore. I was tired but I needed to go to work. I commuted 2 1/2 hours away and I wasn't looking forward to the drive or the day but I wanted to hold on to as much time as possible because I knew that I may have to go on maternity leave early. I drove at my normal brisk pace, arriving to the building with 10 minutes to spare. I called the doctor again and no answer. I left another message with service, I believe this was message number 6 and I told the woman that I felt really off, like a great pressure was baring down on my pelvis. Three hours passed, I tried to work but I was starting to get worried. I was starting to feel pain. I stood in the hallway and desperately called the doctor's office again. The same receptionist answered and apologized "I'm sorry, there is nothing I can do if the doctor chooses to not respond to your messages." "What if I'm in labor?" It was my biggest fear and my voice broke as I asked the question. Why was this woman ignoring me? I went to the restroom and cried. My mind was racing, should I go to a hospital here or try to get home. Could I even drive? God, I was so hungry! The mind of a pregnant woman can be very complex but food is the great equalizer. I decided to try driving down the road to get some lunch. I left a message with a specialist that I had seen several weeks before, she is world renowned and I called on the off chance that she would get back to me. I needed a doctor. As I was driving, she called back and listened to my concerns. I told her that I had a feeling that things were going wrong. She told me to come to her hospital and she would check me out. I drove back to work and explained that I needed to leave. I was walking quickly out the door, breathless from fear that I was too late and my cell phone rang. It was my doctor, finally. "You need to come in. I have to check you." "Now you call, I've been calling you for 18 fucking hours!" "We have all of your medical records, it will be better for you to come here." I listened and 40 minutes later I walked into the hospital that was 10 minutes away from my house. The doctor was shocked to see me so quickly but she shouldn't have been, I don't think I drove under 90 mph at any point in my drive.
She was so calm and did an internal exam. "Okay, when was the last time you ate we need to get you into the OR asap." It's too soon! NO, this can't be happening! The woman from the fertility clinic words popped into my head, "I lost my twins when I was 18 weeks." Oh God No! I called my mother and husband, they needed to come help me.
"I'm going to close the cervix in the operating room, I know it's highly unusual to do it at this point but I believe that labor is eminent. We need to stop the pressure on the cervix."
They rushed me into the OR and stitched me up. I was able to go home the next day. The babies were still inside. I was put on strict bedrest, only times I could get up were to pee ( the highlight of my day) and to see the doctor. I was bored out of my mind.
September 11, 2007 I was sitting in bed watching TV with my husband and my 10 year old brother. It was a comedy, we were laughing and suddenly a sharp pain swept through my body. It radiated through my back and even the hairs on my arms raised. I had been sitting up and my body spasmed back and I screamed. I have never seen my little brother disappear so quickly in my life. My husband grabbed the phone and called the doctor. I couldn't even speak, OMG, the pain! My husband half carried/dragged me down the two flights to the car. My mother was waiting with the car started already. I couldn't cross the street because my body kept hunching over. My clothes were drenched. OMG, the pain! My mom ran lights getting us to the hospital. "I don't have names for A & C! What are we going to do?" My husband looked at me and said, "These are the names____ & ____. Done. Good." We got to the entrance of the hospital and a wheelchair magically appeared. I couldn't walk anymore.
The doctors were standing at the elevator when the doors opened. The took me immediately into a room and hooked me up to different monitors. 1. Thump, thump, thump. 2. Wosh, Wosh, Wosh. 3....3... "Where the third heartbeat?" The doctors were concentrating and ignoring me. Another one hooked another machine up on the other side of my body. "Come on Baby A, I know you're there." I looked wildly back and forth as my body spasmed with each pain. Wosh, thump, shhh, wosh, thump, shhh. 3!!!!! "We got her!" There were doctors looking in, going in, taking sonograms, watching the contractions. The put in a central line and started pumping drugs into my system. Within minutes, my contractions started to slow. I was so woozy. I started counting the heartbeats and felt content to know that they were still inside. I was hospitalized for three days as they monitored the contractions and altered the medicine to stop the contractions all together. I was in a fog but they were safe, with every heartbeat, we were one step closer to a positive outcome. It was just the beginning...
Thursday, March 24, 2011
I had such involved dreams of motherhood. The nurse would place the baby in my arms and I would instantly know what to do with it. I would bond immediately and be a MOM! What I didn't anticipate was the power of pregnancy.
I became a mother at conception.
Actually getting pregnant was difficult. I was my Reproductive Endocrinologist's first appointment for more years than I care to admit. Every morning I woke at 3:30 so that I could be there when the doors opened and I wouldn't be late for work. I didn't want these appointments to affect my life so they were placed out of the way. I didn't want to say that I was infertile. My baby story wasn't going to start with, "Your father and I got married and were so delighted when we found out we were pregnant with you! It was such a surprise!" No, my baby story was hard, cold and sterile, like the doctor's office. Oh, they tried to pretty it up as I tried to downplay the absolute desperation that consumed me but it was a doctor's office, it smelled like antiseptic lightly disguised by the scents of lilac and lavender. I walked in and was greeted by the receptionist, Jennifer. She had a cup of tea ready for me and would make small talk while we waited for the nurse to draw my blood. It was a set routine, we alternated my arms every day. I knew where to sit based on where the tea was placed. More often than not we followed up this blood letting game by a trip to the stirrups. The doctors looked at what they needed to see, did procedure after procedure; "This one should work!" and after a while, I ignored what was happening to my body, ignored the doctors, went through the routine and went into a dream world.
I closed my eyes and saw my hand holding a little hand. We were skipping and laughing. I couldn't see you but I could feel the happiness. I could feel the joy of being a mother. Depending on the length of the procedure, the dream was amazingly detailed or just a glimpse of our entwined hands.
My husband didn't have to go to the appointments. We-no- I couldn't get to a point where I needed him to complete the job so to speak. He knew that I left early every morning for my normal doctor appointments. He saw that I ate spinach every night because I read somewhere that it helped with fertility. He knew that I spent two hours at the gym, running 5 miles and doing strength exercises because I read that would help fertility also. He would hold my hand at night as I tried to ignore the pain and would just sit or lay there crying. He would give me a shot when I couldn't bear to stick myself one more time. I wanted to do this for us. I wanted to have his child. I wanted to make a family with him. That desire was so great, it lead me down a very expensive road.
On April 23, 2007, the shots had finally worked! We got the point that we could do an IUI. My husband was coming with me to an appointment! I got to go to a different building and see different staff. We were so excited, and more than a bit nervous. They were still closed when we got there. A lady was standing outside the door in scrubs. We thought she worked there but it turns out that she was a patient herself. She told us how she had conceived twins and lost them at 18 weeks. I gripped my husband's hand and tried to forget what she said. Why did I have to hear that before the insemination? I was so worried that it was a bad sign.
The actual insemination took place with a doctor that I had never met before or since. I sat on an uncomfortable table, a bit different than the normal stirrup contraction and held my breath. The doctor was talking but I was staring at my husband. He was gripping my hand so hard that it hurt. I said, "Pray!" He said, "I am!" I closed my eyes and with every fiber of my being, I prayed. The only thing I could think to say was "PLEASE!" There were no words for how badly we wanted this baby, I knew that God understood I was done with fertility this time, even if it failed I didn't have it in me to continue anymore.
The doctor finished up and offered a smile. "Let's hope it works!" We walked out to the car drained but it was only 7 am. We held hands as we left. I knew that it has worked. I was a mother. I could feel it already.
Tuesday, March 15, 2011
Baby C, lovingly called Baby, is a blessing. I think that she will be the kid that tells therapists that she was never her mom's favorite but if she only knew how special she is too me.
When the girls were born, Baby had swallowed fluid. Bugabuga was having a tough time in general and the CEO was doing fantastic. The doctors decided to put them in the critical care nursery together so that they didn't have to go to different floors and nurseries. It's an odd experience having triplets. You hold each one and feel a bond but there is just something about their personalities that shines through that first hug. Bugabuga was struggling and the doctors kept her away in the nursery to stabilize her. The CEO was so strong and looked up at me. She was the image of my husband. And then there was Baby, I reached to hold her for the first time and her whole body turned to me. She sighed. I felt my heart expand and I felt like a mother for the first time. Something about the way she leaned in like we were sharing secrets already, made me so excited for the days to come. My husband was holding the CEO and I was examining Baby's hands and toes. Memorizing every part of her. She was my BABY!
I was able to meet Bugabuga 6 hours later. We were alone and she cried! I remember thinking that she looked like someone but I couldn't put my finger on it. Turns out, it was me! The nurses brought the other babies in and was so excited to hold them all. As I was holding them, Baby turned cold and I didn't understand what was going on. I put another blanket on her. I put her under my hospital gown to give her my warmth. She felt colder and colder. I called in the nurse and she took her temperature. The nurse looked concerned but gave me a smile and said, "I'll just take her out for a bit to warm her up." I didn't see Baby for another day and a half. She was connected to machines, she needed help to stay warm and oxygen.
I asked my husband constantly to check on her. I was bonding with the other girls but a huge chunk of my heart was in Critical Care with Baby. I was so afraid to go see her. The pregnancy was harrowing, I honestly wasn't sure that I was strong enough to make it with a sick baby. I waited until my husband had left for the night, the other mommas were sleeping. Only a few nurses were walking around. If I cried, I wanted to be alone. The only sound as I walked across the hall was the smack of my slippers against the floor. I was buzzed into a room with frosted glass. I see two of the girls sleeping and I search for Baby. My heart is pounding so hard that I can't hear the nurse speaking. "I'm Baby's mother." She takes me by the arm and walks with me behind a screen. Another nurse is sitting next to a baby in an incubator. That poor thing was so sick, there were tubes taped on to her face. She was flat on her back, arms spread wide as if waiting for a hug. Her left thigh was visible, every other part of her was covered. I look to the left at another baby sleeping peacefully but looked so weak. I began to walk to that baby and the nurse guided me to the baby with the machines. She was speaking and telling me so many things. I constantly said, "What?" I was riveted to that little face. I put my hand in through the hole on the side and touched her thigh. "Hey Baby Girl! It's Mommy. You need to get stronger right now, okay? I need you to be okay. Do you hear me little girl? I have beautiful clothes ready for you, these tubes aren't your style. Okay, Baby? You're so beautiful. My baby girl." I touched her head and her head snuggled into my hand. I sat down and cried and watched her heart beat increase. I saw her oxygen levels stabilize. I saw her hands and legs begin to move, as if to say, "Pick me up!" Several hours later, the nurses let me hold her and feed her. I was so proud to hold my little fighter, my baby.
So she may think that she's just the baby and the others may get attention more often but I know that she's wrong. At night when I kiss them all on the forehead before I go to sleep, she's the one that gets an extra blanket tuck. The baby I always save a little spot for in case she ever wants to sit next to me. My little baby...
Sunday, March 13, 2011
I was infertile. My dreams of my baby to be is the only thing that got me through the pain of infertility. She was going to look and act like my husband. She would have wavy hair and brown eyes. She would be stubborn and intelligent. A natural CEO in the making. She was going to be gorgeous and athletic. She was going to love princesses because she was going to be our princess. She was going to come out perfect and wear beautiful pink shoes that my cousin had bought for her. I knew her name. I knew her personality. I knew her before I met her.
When I got pregnant with the quintuplets, there were signs that at least one was not going to make it. And I felt early on that another one of them was very ill and that if they did survive the pregnancy, it would be a very rough life. We have triplet daughters and a son that arrived on the scene 13 months later. At the moment of conception, I felt that Baby B was the baby that I had imagined. I don't know what it was-call it instinct, mother's intuition, I knew that Baby B was to have the name that we had held dear for 8 years before I became pregnant.
The babies arrived and just as I had predicted, Baby B was her! She was my dream, she looked like him, acted like him. So it goes without saying that when there were signs that things were not as they should be, we ignored it. Baby B loved the swing, loved to rock back and forth. Loved to rock in her high chair. We used to say to each other that she must be dancing to a song in her head.
One day I was standing a flight down, directly under Baby B's high chair. She was being feed by my husband and I heard massive knocking sounds. "What the hell is that?" My mother looked at me with sympathy and said, "That's just Baby B." I was taken aback. She rocked that hard that it could be heard two flights down. "Why didn't you tell me it sounded that bad?" "What are you going to do? It's just who she is." I went upstairs took her out of the high chair, and threw it out. Never again. The rocking was over.
Baby B did not find that acceptable. She went to my favorite rocking chair and started rocking so hard that the wall behind the chair dented. We moved it in front of a door. The door broke, finally, the chair gave out and cracked under the force of her rocking. How could my little girl be a CEO if she couldn't even sit in a chair without rocking? Suddenly the reality versus my expectations collided and I felt my dreams break apart. Is she going to have a normal life? Will she speak? In my dreams, she had already married a millionaire and now I wasn't sure if she was going to be able to be potty trained.
As a child, I was an emotional little thing. Look at me without a smile and I would cry. I grew older and I was pretty much the same. Someone was unhappy with me and I was heartbroken. And then Autism hit our family and my tears dried up. I don't know if it was a defense mechanism or just survival. I can clearly remember Baby B's first regression and one day when she started punching me in the face when I was looking at her. My glasses flew off my face and I couldn't see her clearly but I felt her rage and all the tears that I wanted to cry at that moment didn't exist. This 2 year old that I had dreamed about for a decade just punched me in the face, not because she hated me but because she couldn't control herself. I felt some an indescribable part of my soul shift, not break but bend. I grabbed her face and stared into her eyes. Her eyes rolled in order to avoid eye contact but I could not allow that. "I have dreams for you and nothing will stop you from having a good life, a full life, a happy life. You will look at me and understand. You will know Mommy's eyes if no one else's eyes. You will be everything that I know you are, you will be great. I love you. Trust me." We struggled for 34 minutes. She finally made eye contact. I smiled at her. "You are wonderful. You are my princess." "Mama!" She gave me a big hug and she was back as were my dreams. We call her the CEO.
It's been years since we've gone on a date. Financially, Autism and life have taken a toll. My husband, lost his job last February. I left my job in March 2008 to take care of the girls, so as of February, we were living on love and savings. We could have applied for Social Security for the kids, but that would have acknowledged that they were disabled. We weren't able to do that yet. So we depleted our savings, hoping and waiting for the kids to outgrow this diagnosis. Date night wasn't an option. No one really felt comfortable watching the kids and we couldn't afford a professional. Spending time with the kids became harder and harder because there was no relief. The constant crying because speech was beyond them was oppressive and there were times that I would hide in the bathroom, just to catch my breath. We try to speak calmly at all times and raise our voice only to get attention, not to yell but there are times during a particularly long tantrum that I wanted to scream. I want to kick the wall, I want to head bang. I understand that deep frustration without an appropriate outlet. I understand too well.
Last night, we celebrated our 5 year anniversary. Now that I'm working full-time and my husband has found a wonderful part-time job, we have a small amount of wiggle room. We've interviewed many professionals and found one that seemed to be wise enough to be afraid and trained enough to brave a few hours at an exorbitant price. We decided to go to the mall to leisurely walk around and maybe, if the sales were right, shop till I drop. We gave ourselves an hour. I can do damage in an hour. LOL. My husband stood patiently as I ransacked the 50% off rack and only sighed softly when I tossed everything aside upon seeing the 70% off rack. When I noticed that he seemed to be shifting his weight side to side, I gave him a shirt to check the price on the scanner and didn't tell him that there were two barcodes, one for returns. I bought myself another 5 minutes! After milking it for all it was worth, we left the mall and headed to the movies. We saw the new Adam Sandler movie, it was cute and fun and longgggg. I felt my shoulders start to relax and I started to really laugh at the absurd comedy that I love so much. There was an odd moment with a sheep and a plastic fish that reminded me of the kids. The plastic fish was an exact copy of Bagabuga's favorite fish. I began to worry about how the kids were doing. They should be sleeping, everything is fine. The movie ends and the kids are on my mind once again. We need to pick up some milk.
CVS is located right next to the movie theater and is open 24 hours. Awesome! Let's get milk and head home and oh, while we're at it, let's impulse shop. I need a mirror with a magnifying glass, who doesn't? While I'm at it, let's get a loufa. They have a teal one. I MUST HAVE IT! I reach in to grab it and I can't reach it! The sides of the box are too high for someone of my shorter persuasion to reach the bottom. So I look up at my husband, all 6'3" of him and sweetly say, "Help me, please! I want the teal one!" His arms are loaded with a gallon of milk and a box of donuts (his own impulse shopping) and reaches down...
The milk flies through the air. And we both make a grab for it. The box of donuts end up flying too. The milk slips through both of our fingers and we watch in horror as it cracks open. My husband takes the broken container to the counter and tells the cashier, "Spill in aisle one!" The man apologizes for the inconvenience and promises to clean it up. I found this to be hysterical. Maybe it was the time of night, 11:30-virtually dead of night in my world, or it was my need to laugh and let go. Either way, I laughed so hard that I ended up doubled over and looked right into a hole on the side of the container holding the teal loafa! Score! I walk to the counter to make my purchases and see my husband perplexed that I was able to reach the loafa, let him wonder, as I started laughing all over again.
We arrived home in a great mood. I drove the sitter home after paying her a minuscule amount compared to how priceless our date night turned out to be; found my husband sitting on the floor, falling asleep because the kids had taken the couch in our absence. I covered everyone with blankets and fell asleep instantly with a smile on my face.
Friday, March 11, 2011
"Bugabugabugabugabuga and Mommy Bugabuga and Baby Bugabuga and bugabugabugabuga." We had no idea what Baby A was talking about. What is a Bugabuga? Whatever it was, we needed to know. Whoever it was, they meant something to her. So many days we would notice that she slipped away to hide under a table or chair, surrounded by her ducks and fish. But on this day, she made eye contact and said, "Bugabuga." Time slowed as I stared into my baby's eyes. It was the first time that she initiated eye contact. "Bugabuga?" I said, so confused. She smiled and nodded yes. My heart started pounding. I clutched one of her plastic fish so hard that it made a squeaking noise. My hand was shaking as I reached out and said, "Show me." She grabbed my hand and pulled me to the bedroom by the dresser. "Bugabuga!" OMG! She's communicating with me! I felt my Adrenalin kick in. What the hell is she talking about? Hurry! Figure it out! Don't lose this opportunity. "Bugabuga?" "Yes, Mommy! Bugabuga!" I dropped down to my knees so that I am at eye level, our noses are almost touching. I'm wildly looking around. What is Bugabuga? I grab a duck. "Bugabuga?" "No, Mommy! Bugabuga!" I grab a new toy fish. "No!" Damn it! Think! Think! I grab a book about caterpillars. "Bugabuga?" She giggled. I feel my eyes burn with tears. She was giggling. I will fill the whole house with bugabugas if it gives me my baby. I touched everything in the room for 20 minutes straight to no avail. Bugabuga was no where to be found. I was perplexed. She began to cry with frustration. I was right there with her.
The next day therapy started and I hear her say to the ABA specialist, "Bugabuga!" Eye contact and smile. The therapist calls us over to see this and we talk about Bugabuga. He doesn't have a clue. We poled her school and the other therapists, no one knew. I read every single book that we owned, about 150. No Bugabugas. We spoke with the therapists again. She could be stimming, she might like the way the sounds feel in her mouth. "No!" I was adamant. She's telling me something. I'm just not understanding yet.
A month past and every day she talks about Bugabuga. The professionals are convinced that she is stimming. I'm was so sure that she was communicating. I'm starting to doubt myself. I walk into their bedroom and start cleaning up their toys. I'm touching every toy again to see if I missed one, "Come on Bugagbuga!" She runs in the room with her wide gait, so unbalanced, like she just learned how to walk when in reality she's been walking for almost two years. She throws herself into my arms and hugs me with all her might and looks at me, smiles. "Mommy Bugabuga!" I smile and say, "Baby Bugabuga!" She giggles and runs away. I jump up to chase her and I suddenly hear Bugabugabugabugabugabuga! I look at the TV. Dora the Explorer is on and there is a baby lady bug, a bugabuga, that is lost. I scream and my husband comes running. "Bugabuga! " She comes running in, thinking that I am calling her. I give her a huge hug. She was telling us a story. She WAS communicating! My bugabuga hit a new milestone. From that day forward, her nickname was Bugabuga.
I listen to you screaming and crying and I want to run over and stop therapy. I want to grab you into a bear hug and pour my strength into you. I stand by the door out of your sight but I can see everything. I see you flinging your body. I watch the talented therapist hold you protectively all the while using a gentle voice, cajoling you to interact and get some work done. I watch you correctly point to a picture and I hold back. My hands are white from holding onto the wall. I can't do this. You're screaming for 28 minutes now. Tears are flowing down my face too. Two more minutes and I'm cutting it for the day. I hear your watery voice say balloon. I hear the therapist say, "Say, I want balloon!" You scream and then I hear you say, "I...wan..ba..oon!" A sentence! You clap your hands and you're back. I hear you laugh and get down to the work of play. I can breath again.
Thursday, March 10, 2011
My life is surrounded by fish. Pictures of fish, fish toys, fish stickers, clothes with fish on them. Who am I? A Marine Biologist? No, just a mom. A mom with Autistic children, 4 autistic children to be exact. How does this happen? People wonder almost immediately, once hearing that all 4 kids are struck with this disease, some even ask us as if we have any idea. We have theories but it doesn't really matter because as much as it would help to pinpoint the cause the fact of the matter is that it's too late for us. Our life is about living and loving and dealing with the disease, not dealing and then living and loving. I'd love to sound wise and knowledgable but Autism manifests so differently for everyone affected. I'm an expert of my children but I'm simply going with the flow.
Our journey into the bottom of the ocean was subtle, well, at least we think it we was subtle. Others on the outside made comments and I thought they were morons. What did they know? Aren't all preemies a little delayed? They don't make eye contact, you say, may be they can't see. Let's go to an eye doctor. Wait, they don't respond to their name? They are just stubborn. Could they be deaf? Let's go to the audiologist! They don't like to eat? Hell, we can see a good 4 or 5 specialists on that. It more than likely that I just can't cook. Denial is a powerful force. Sometimes you can't see what's right in front of you. The idea is so abhorrent to you that your mind just shuts down and makes excuses. I can explain away anything...anything.
And then one day you see EVERYTHING. There are flashes of lights, your head hurts, your heart hurts, you vomit, you open your mouth to speak but the reality of you life steals your voice. You want to cry but you are choked with the force of emotion, crying becomes a small Princess bandage on a gaping wound. The day I realized what reality was didn't begin with my first daughter. She showed so many signs but she was just so cute! She would outgrown her quirks. But my second daughter...she rocked my world. We had already lightly entered into the world of therapy with Baby A. She needed some help learning how to eat and making sounds. But then Baby B woke up one morning, this beautiful little girl that had said, "Night Mommy!" the night before woke up staring at me blankly and I asked her if she was okay? Did she need a hug? Nothing. Silence. "Baby B are you okay? Honey, it's Mommy! Can you hear me?" She looked at me, drooling and punched herself in the face. Her head slammed again the crib and I reached for her and she fought so hard. Her body was rocking and she kept slamming her head again the floor. I thought she was having a seizure. My wrist and hand cradled her head and I felt the crunching. My body was numb, I was in survival mode. I knew it was my hand hurt, not her head. I was begging her to look at me. I was crying so hard that I couldn't breathe. We saw the doctor that day and it wasn't a seizure. It wasn't a seizure. My baby, oh God, my poor baby. She woke up the next morning and we went through the same thing, except this time my wrist was wrapped to protect my injury. We sat on the floor with Babies A , C and D. I cradled her and cried for 8 hours. I stopped to get bottles and change diapers. She fell asleep exhausted. The local hospital gave us an appointment 2 days later to see a neurologist.
I remember walking into that office and seeing children with obvious deficients and wanting to turn around and run. A quiet unassuming mom saw my look of bewilderment and grabbed my arm. "Don't leave! Stamp that paper there and fill out those forms. I'm so sorry but you'll get used to it." I did what she said and took a seat. Baby B screamed the whole time, slapping and biting herself. Like a broken record, I said, "It'll be okay, it'll be okay. You're okay." Remarkably, I don't remember most of what the doctor said. She referred us to a special specialist and told me to look up autism spectrum disorders and to call her with any questions. She explained autism and I was nodding my head so hard that I began to get a headache. I walked out and decided to walk home with my baby. Sometimes you need to be alone with your thoughts and I couldn't figure out what to say to my family. I couldn't figure out how to open my mouth and speak and then I realized that this must be what Baby B feels like. She knew how to speak, she was saying Mommy, Daddy and so much more. She had been silent for a week at this point. Baby B was diagnosed with ASD when she was 24 months old.
I began to read manically about autism. The treatments, the drugs, the theories on the causes. I arranged the Early Intervention meetings. I geared up to fight for the maximum amount of therapy. I turned into an Early Intervention guru. Ask me a law, I knew it. Ask for a statistic, I had it. Ask me how I was doing, and I was silenced. I couldn't say it. I was broken. I was terrified. I was depressed. I dreamed about running away. Every morning I woke up 10 minutes before Baby B so that I could cradle her head before she woke up so that she wouldn't hurt herself. We didn't understand at the time that it was the transition from sleeping to waking that was the issue. We were just baffled and doing our best.
I constantly thought that my best wasn't enough but I was wrong. My best, my husband's best it was more than enough. I look at Baby B smile and laugh and dance and I know she's going to be okay. She has joy in her life, we are enough.