On this, the last day of 2008, I thought it appropriate to make some reflections on the year.
We brought Lucas home from the hospital a year ago today! After 8 helpless days in the NICU, we could finally be together as a family for the first time. The NICU experience is one that I hope to never have to go through again. Lucas's stay was short, but nonetheless difficult. It's tough when you have no control over your baby, and all you have is basically visitor privileges. New Year's Eve 2007 was a joyful day indeed!
You always hear people say that a baby changes things, and you think "yeah, yeah, yeah, I know." Well, you really don't know until you have that baby, how much things really change. Priorities change, feelings change, lifestyles change. I never really understood the feelings of love for a child before I had one. It's unique, strong, binding. It's like no other kind of love. Everything changed the moment I gave birth. Life became about all about him, and I wouldn't change it for the world.
When I was pregnant, I remember being anxious for the first ultrasound, because I knew that in addition to determining the gender of the baby (which we weren't successful in finding out the first time anyway), any red flags for the baby's health concerns would be raised. I remember asking the technician... "so my baby has 10 fingers and 10 toes?" Yes, she replied. I was relieved, as if that was an indication that my baby would be healthy. WRONG! I was so oblivious to the fact that anything could be wrong with my child, least of all his hearing! We did everything right - he was perfectly planned, I stayed away from everything that I thought could be potentially harmful to him... I didn't drink any diet soda (because of the aspartame), I wouldn't even pump my own gas because I was afraid of the fumes, I took all of my vitamins as prescribed, ate salmon at least once a week, had excellent prenatal care... very textbook. And 5 weeks early my water broke, and my baby was born with more than one health concern. Yeah, things definitely changed.
January was fun. I used to take a picture every day of Lucas to send to Nate at school. I think I took 180 pictures that month alone. But that month, we had 3 follow-up specialist appointments that caused a lot of anxiety.
February was a disaster. It was then that we were told that Lucas was deaf. It was then that I began to feel incredible amounts of guilt, wondering what I had done wrong. It was then that I could not fathom returning to work in April. I spent so much time crying. I don't think that Valentine's Day will ever be the same.
In March, Lucas (who had been completely healthy, other than his congenital issues up until that point), developed RSV and spent 5 days in the hospital. More guilt, lots more guilt. Early Intervention also came out to the house, and we established a great relationship with them and Lucas's therapists. I am so thankful for everything that EI has done! It has been a terrific experience. Lucas also got his first pair of hearing aids.
On April 4, I returned to work after 15 weeks. I was miserable. It was really, really, really tough on me (and still is to this day!). Again, pre-baby, I thought it would be no big deal. Boy was I wrong.
May is kind of blurry. I went to work, and returned home as quickly as possible to spend time with Lucas. I was counting down the days until June.
In June, I began 10 weeks of summer vacation and time with my baby again! Lucas spent another 5 days in the hospital, that should have easily been prevented, but we won't go there. He only had a summer virus, but the doctors had suspected meningitis, and it was better to be safe than sorry. I started this blog in June, and met so many incredible people through blog networks, that have taught me so much about hearing loss. I am forever grateful to my blog friends.
July was fun! We spent a lot of time at the pool! Nate was in grad school, so we didn't get to spend that much time with him, but life was pretty carefree for the first time in 6 months. I think that I finally lost the guilt of Lucas's hearing loss being my fault. That was really important. Lucas had a sedated MRI in Lancaster, although it was for nothing. It had to be repeated at the end of August, because they didn't get the film they were supposed to have. Lesson learned - just go to CHOP, period.
In August we went to the beach in the Outer Banks of NC. I really enjoyed my week there, I still look back on it fondly. I think it was an escape from all the crap I had to deal with at home, even if I wasn't really away from it, it certainly felt like it. At the end of August, I returned to work again with the beginning of the new school year. I thought it would be easier than in April. Nope. We also began the CI candidacy process. Lucas had his second sedated MRI. The good news was... from a physiological standpoint, he was a candidate. It was music to my ears.
September came and went with one very exciting event... Lucas signed milk at 9 months and bridged the communication gap. It was my happiest moment of the year! (Don't forget he was actually born in 2007, so that doesn't count for the year.)
October came and went. November came and went. Those months were pretty uneventful - there wasn't a lot of extra time to do much. Working full time is rather time consuming. All extra time was devoted to Lucas, and to his therapies. We worked 6 hours a month with them. But without access to any sound at all, we were just kind of waiting. Thanksgiving was well spent with family and friends and a week of vacation.
December was an exciting month! I love Christmastime! We also had a birthday party, a first birthday, Christmas and CI surgery.
It was a crazy year indeed. It was the most exciting, joyful, and sorrowful year of my life, all at the same time. Life has changed for the better. We have the most beautiful little boy, who keeps us challenged and brings us incredible amounts of joy. Life will never be the same, but I wouldn't want it any other way. Could it have been worse? Absolutely. Could it have been better? At times, maybe.
I look ahead to 2009 with lots of hope and optimism. I look forward to 8 months away from my job to help my baby learn to listen with his CI. I hope that by this time next year, he will have a second CI, have seen some success with the first, and he will have said "Mommy". I look forward to the positive change that a new administration will bring to our country and a hopeful beginning to the end of the war in Iraq.
Wishing you and yours a happy New Year and a prosperous 2009!
Life of A 23 Year Old Baby
Imagine a world where others fulfill all your desires. They feed you. They dress you. They even wipe your ass. I was there and let me tell you- it was miserable.
I laid prone as the world took care of me. I slept at the Desert Springs Memorial Hospital, the closest medical facility to Joshua Tree National Park, where I fell a hundred feet climbing without a rope. I spent the first few weeks in a semi-comatose state, sedated by drugs. The hallucinations of my subconscious entertained me. A sequin suited ice skater sashayed towards me delivering me my dinner of crackers, my aunt sat in a casino wooing Sammy Davis Jr., and my immobile body rested on a dock, watching the boats come into harbor, and waiting for someone to move me with the other cargo.
When I finally came to, I wanted to go back. The ice skater never put a tube in my penis, but the doctors did. They spoke stoically when they discussed the operations- the damage to my occipital lobe, the vena cavity filter, the compound fracture of my ulna- I never understood what they had done. Arthur Clarke wrote, "Any sufficiently advanced technology is indistinguishable from magic."
I was Frankenstein’s monster, confused, alone, and sewn back together wrong. I tore the IV out of my arms. I did not want to be there. What did the doctors do to me? Why was I there? I wanted to get out of bed, pull on my jeans, and crawl to the base of El Cap. My identical twin brother held me down and a nurse sedated me while I called her a cunt.
Eventually, I calmed. The thick calluses of my hand were peeling away, I was losing what identified me as a climber. I had shed twenty pounds off my thin, fit body. The nerves in my right foot had been destroyed and my foot hung sadly. Long rods held my back and ankle together. Pins cemented my elbow. My body was a jigsaw puzzle of welded metal. It hurt.
A constant stream of friends, family, and climbers visited; they wanted to make me feel better. I did my best not to spill my urinal on the bed. An ex-girlfriend held my hand, and watched me puke in a napkin. John Long, the climbing legend, visited. A notable encounter only in that he was a regular guy who wanted to talk about his family. He gave me some meditation tapes that helped him recover from some of his injuries. A Yosemite climbing friend, Sanam, brought Lisa Rand's climbing movie Hit List. Before she left, she did the sweetest thing. She brought her lips close to my cheek and kissed me. I did not wash my face for a week. I was immobile in a bed; I could not clean my face if I wanted to. Other visitors came and sat awkwardly. They never knew what to say or do so I put the twenty minute Hit List on repeat. Eventually, my twin- my most consistent visitor- complained.
“I have never been to Black Mountain. I have never been to Bishop. I have never even been to Yosemite,” Matt told me. “And I still know all the moves to that dumb Thriller problem.” For him, there was nothing different about me.
At a stroke and spinal care facility, my roommate was a former Los Gatos school district super-indent named John. His wife came in to take care of him after his stroke. Most of the time she was nice but sometimes she yelled. He was a sixty-year-old infant, a former man who had become helpless overnight. His wife struggled with John’s transformation to infancy more than he did. He wore a diaper and the room often smelt like shit. One night, John left his bed and wandered around the room, mumbling about the bathroom. Unable to find the door to the toilet, he came closer and closer to my bed. My biggest fear in life is that someone is going to shit on me and I will not be able to do anything about it.
“John, the bathroom’s over in the corner,” I wanted to help him. Give him some direction. He ignored me.
I stabbed the red button on the white caller, trying desperately to call the nurse. My nightmares were coming true. I was paralyzed, I could not get out of bed, and John was going to crap on me. The nurse came in as John stood at the foot of my bed. Later, I learned to laugh about it.
After a few more weeks of laying in bed, worrying that John was going to shit on my chest, I was transported to a physical rehabilitation center where I would learn to walk. My first physical therapy session, I stood. Seven seconds passed on the watch. It was awesome. I wanted to put it on my 8a card. I sat, rested, and then tried again. My legs wobbled precariously at five seconds. I felt uncertain at six. Was I going to fall? I bore down and fought through the crux of it, watching the clock tick off a long fifteen seconds. I onsighted the extension. The technology of the fusions was magic. Later, I tried to brag to my twin. Matt sat in my hospital room playing Fable on my Xbox-a gift from my oldest brother, Chris, a dorky guy who loves video games. As I sprayed about how hard it was, how exciting it was, how it made me feel like I was climbing again, he looked at me and asked, "How do I get the combat multiplier up for my hero?"
My parents had six children. Their first came when they were barely old enough to take care of themselves. They divorced when my youngest brother was 10. My father needed a break from the overwhelming amount of work. He needed to work on himself. He still barely had enough money to fly out and visit. My mother spent a majority of her savings on the transportations costs of moving me from a hospital near Joshua Tree to a stroke center near my home of Santa Cruz. She sat by my bedside praying for me fanatically. I had spent my last bit of savings to go climbing in Joshua Tree for winter break. The majority of the hospital bills were being paid for through the mandatory insurance I had as a University of California. I could barely stand up, working was out of the question. Going back to school in Santa Cruz was my only option for fiscal support; I needed the financial aid.
My occupational therapist explained the importance of maintaining neutral spine precautions to me. "You have to keep your back straight at all times. Your knee can not bend to ninety degrees. That means no stairs."
So what? I could never scramble around in the boulders. I shrugged. Lifting my feet high over the talus always annoyed me anyway. He droned on about the correct way to move my body and how to deal with my physical handicaps.
"I do not know how you are going to ride the bus," he said.
What was he telling me? How would I get to campus?
"I have to go to school," I said. For the first time since I fell, I cried. How could I take care of myself without financial aid? He kicked my only crutch.
"You know, you can still have sex." He said meekly. "I can explain how to do it while maintaining neutral spin precautions."
I shuffled my ass to the side of the hospital bed, tentatively swiveled my hips, and fell into my wheel chair. I wheeled my way back to my hospital room and stared out the window, dreaming I was climbing.
I stood on the sidewalk of Highway 1 on Mission Street in Santa Cruz. A few days earlier I had been walking along the same road wearing a new t-shirt. A friend had ironed on a picture of a walker and a caption reading, “Walkers are Irresistible.” A random girl drove by and waved at me. I felt tough. So I stood on the sidewalk again. Both the northbound and southbound cars sat at a stop light a quarter of a mile away. I had two minutes. I prayed that the magic in my body would make me move like lightning. I put my walker down off the curb, shuffled my right foot forward, weighted it, and matched it to my left. Then I advanced the walker again, shuffling, and matching feet a thousand times. As the cars barreled towards me, I focused on the repetitive motion, and climbed El Cap in a day.
Slowly, very, very slowly, I learned how to walk without assistance. After more surgeries and more physical therapy, I shrugged off most of my handicaps. 381 days after my fall, I climbed again. My life as a 23-year-old baby sucked. People always ask me what I learned. It annoys me because the experience merely reiterated things I already knew about myself.
I want my independence. I want to do things for myself. I have a hard time asking people for help. The hardest part of the whole experience was dealing with those basic things. This was a huge cry for help. Some days I feel like it is unanswered. On the better days it feels like I am answering it myself.
I laid prone as the world took care of me. I slept at the Desert Springs Memorial Hospital, the closest medical facility to Joshua Tree National Park, where I fell a hundred feet climbing without a rope. I spent the first few weeks in a semi-comatose state, sedated by drugs. The hallucinations of my subconscious entertained me. A sequin suited ice skater sashayed towards me delivering me my dinner of crackers, my aunt sat in a casino wooing Sammy Davis Jr., and my immobile body rested on a dock, watching the boats come into harbor, and waiting for someone to move me with the other cargo.
When I finally came to, I wanted to go back. The ice skater never put a tube in my penis, but the doctors did. They spoke stoically when they discussed the operations- the damage to my occipital lobe, the vena cavity filter, the compound fracture of my ulna- I never understood what they had done. Arthur Clarke wrote, "Any sufficiently advanced technology is indistinguishable from magic."
I was Frankenstein’s monster, confused, alone, and sewn back together wrong. I tore the IV out of my arms. I did not want to be there. What did the doctors do to me? Why was I there? I wanted to get out of bed, pull on my jeans, and crawl to the base of El Cap. My identical twin brother held me down and a nurse sedated me while I called her a cunt.
Eventually, I calmed. The thick calluses of my hand were peeling away, I was losing what identified me as a climber. I had shed twenty pounds off my thin, fit body. The nerves in my right foot had been destroyed and my foot hung sadly. Long rods held my back and ankle together. Pins cemented my elbow. My body was a jigsaw puzzle of welded metal. It hurt.
A constant stream of friends, family, and climbers visited; they wanted to make me feel better. I did my best not to spill my urinal on the bed. An ex-girlfriend held my hand, and watched me puke in a napkin. John Long, the climbing legend, visited. A notable encounter only in that he was a regular guy who wanted to talk about his family. He gave me some meditation tapes that helped him recover from some of his injuries. A Yosemite climbing friend, Sanam, brought Lisa Rand's climbing movie Hit List. Before she left, she did the sweetest thing. She brought her lips close to my cheek and kissed me. I did not wash my face for a week. I was immobile in a bed; I could not clean my face if I wanted to. Other visitors came and sat awkwardly. They never knew what to say or do so I put the twenty minute Hit List on repeat. Eventually, my twin- my most consistent visitor- complained.
“I have never been to Black Mountain. I have never been to Bishop. I have never even been to Yosemite,” Matt told me. “And I still know all the moves to that dumb Thriller problem.” For him, there was nothing different about me.
At a stroke and spinal care facility, my roommate was a former Los Gatos school district super-indent named John. His wife came in to take care of him after his stroke. Most of the time she was nice but sometimes she yelled. He was a sixty-year-old infant, a former man who had become helpless overnight. His wife struggled with John’s transformation to infancy more than he did. He wore a diaper and the room often smelt like shit. One night, John left his bed and wandered around the room, mumbling about the bathroom. Unable to find the door to the toilet, he came closer and closer to my bed. My biggest fear in life is that someone is going to shit on me and I will not be able to do anything about it.
“John, the bathroom’s over in the corner,” I wanted to help him. Give him some direction. He ignored me.
I stabbed the red button on the white caller, trying desperately to call the nurse. My nightmares were coming true. I was paralyzed, I could not get out of bed, and John was going to crap on me. The nurse came in as John stood at the foot of my bed. Later, I learned to laugh about it.
After a few more weeks of laying in bed, worrying that John was going to shit on my chest, I was transported to a physical rehabilitation center where I would learn to walk. My first physical therapy session, I stood. Seven seconds passed on the watch. It was awesome. I wanted to put it on my 8a card. I sat, rested, and then tried again. My legs wobbled precariously at five seconds. I felt uncertain at six. Was I going to fall? I bore down and fought through the crux of it, watching the clock tick off a long fifteen seconds. I onsighted the extension. The technology of the fusions was magic. Later, I tried to brag to my twin. Matt sat in my hospital room playing Fable on my Xbox-a gift from my oldest brother, Chris, a dorky guy who loves video games. As I sprayed about how hard it was, how exciting it was, how it made me feel like I was climbing again, he looked at me and asked, "How do I get the combat multiplier up for my hero?"
My parents had six children. Their first came when they were barely old enough to take care of themselves. They divorced when my youngest brother was 10. My father needed a break from the overwhelming amount of work. He needed to work on himself. He still barely had enough money to fly out and visit. My mother spent a majority of her savings on the transportations costs of moving me from a hospital near Joshua Tree to a stroke center near my home of Santa Cruz. She sat by my bedside praying for me fanatically. I had spent my last bit of savings to go climbing in Joshua Tree for winter break. The majority of the hospital bills were being paid for through the mandatory insurance I had as a University of California. I could barely stand up, working was out of the question. Going back to school in Santa Cruz was my only option for fiscal support; I needed the financial aid.
My occupational therapist explained the importance of maintaining neutral spine precautions to me. "You have to keep your back straight at all times. Your knee can not bend to ninety degrees. That means no stairs."
So what? I could never scramble around in the boulders. I shrugged. Lifting my feet high over the talus always annoyed me anyway. He droned on about the correct way to move my body and how to deal with my physical handicaps.
"I do not know how you are going to ride the bus," he said.
What was he telling me? How would I get to campus?
"I have to go to school," I said. For the first time since I fell, I cried. How could I take care of myself without financial aid? He kicked my only crutch.
"You know, you can still have sex." He said meekly. "I can explain how to do it while maintaining neutral spin precautions."
I shuffled my ass to the side of the hospital bed, tentatively swiveled my hips, and fell into my wheel chair. I wheeled my way back to my hospital room and stared out the window, dreaming I was climbing.
I stood on the sidewalk of Highway 1 on Mission Street in Santa Cruz. A few days earlier I had been walking along the same road wearing a new t-shirt. A friend had ironed on a picture of a walker and a caption reading, “Walkers are Irresistible.” A random girl drove by and waved at me. I felt tough. So I stood on the sidewalk again. Both the northbound and southbound cars sat at a stop light a quarter of a mile away. I had two minutes. I prayed that the magic in my body would make me move like lightning. I put my walker down off the curb, shuffled my right foot forward, weighted it, and matched it to my left. Then I advanced the walker again, shuffling, and matching feet a thousand times. As the cars barreled towards me, I focused on the repetitive motion, and climbed El Cap in a day.
Slowly, very, very slowly, I learned how to walk without assistance. After more surgeries and more physical therapy, I shrugged off most of my handicaps. 381 days after my fall, I climbed again. My life as a 23-year-old baby sucked. People always ask me what I learned. It annoys me because the experience merely reiterated things I already knew about myself.
I want my independence. I want to do things for myself. I have a hard time asking people for help. The hardest part of the whole experience was dealing with those basic things. This was a huge cry for help. Some days I feel like it is unanswered. On the better days it feels like I am answering it myself.
do you need a little 'feel good'
sign up for a treat and join in her compassion while you're there.
loves, lin
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