When we were in the Ronald McDonald Family Waiting Room at Shands, things were a bit tense for us. My husband and I fielded phone calls from distant family members and friends. Our daughter was going crazy, being cooped up inside. My parents were sick of Maxwell House and PBS Sprout on the waiting room's HDTV. We'd been told that Elijah's surgery would take 4-6 hours. We were only 2 hours in.
Suddenly, a family burst through the doors. There were, maybe, eight of them. The women were crying, the men were stalwart. My husband is a Middle School Youth Minister by title, but he feels called to minister to everyone. He approached the woman crying the most intensely and he said, "Can I help? Can I pray with you?"
She grabbed him by the hands and began to tell her story. Her son had been shot by his cousin; ages 14 and 18, respectively. Today was the day after Mother's Day, and she was afraid her son was going to die. My husband prayed with her and her family. They were secluded in a room when the surgeon came in to tell us that Elijah was doing really well and that his surgery was successful, shorter than expected.
We were elated.
We forgot about the other family in our joy.
Elijah was wheeled into his PICU room. One by one, we brought in my parents and Grammy. We spent a long time in there with our daughter. She had so many questions about her brother, and she was so concerned and so loving. She wanted us to hold her over his drugged-out body so she could hold his hand and stroke his face.
I was so content. Elijah survived surgery! That meant he would finally thrive! I was at peace.
I held my husband's hand while he held our daughter and she had her arm around my neck. We were finally a healthy family for the first time.
Elijah wasn't going to be able to nurse for a couple of days, so I had to pump breastmilk in the meantime. There was a room provided for mothers of PICU babies who needed to pump. It was a sweet room, too! Three couches, four Medela hook-ups, radios with headphones, no overhead lighting (lamps with dimmable bulbs), blankets, and its own thermostat. Absolutely perfect.
I settled down to pump for the first time post-surgery while reading a book.
The door opened and the mother and aunt of the boy that was shot entered the room. I apologized and asked if they wanted me to leave.
"No," the mother said. "I need all the support I can get."
I continued to pump while we chatted briefly about children and faith.
A social worker came in. She looked doubtfully at me. The mother said, "She's practically family now. She can stay," speaking about me.
What happened next made me cry, and nothing about Elijah had made me cry.
The mother, the aunt, and the social worker were talking about the son's body.
He wasn't going to make it. His brain was dead, his spine was shattered. His kidneys, however, were perfect. And there was a girl in the hospital who was having kidney failure Right This Minute. She needed a transplant.
The mother of the 14 year old boy who'd been shot... she looked up at the ceiling. She clasped her hands to her breast. Then she reached her left hand out to my right. I took it.
She looked at the social worker.
"Take it all," she said.
"When my son was born, I prayed that God would use him to save others. I was hoping He'd make him a Pastor. But now I see that He wants to use his body to save others. God gave His Son; I can give mine."
This courageous mother opted to keep her son on life support and farm out his usable organs so that he could save as many lives as possible.
The last time I saw her, she was writing letters to potential future organ recipients, telling them about his family history and how to reach her if they had any questions.
Sunday, September 8, 2013
Saturday, May 4, 2013
Beauty Tip #1: Our hands demonstrate our actions to the world.
I layed in the recovery room trying to wiggle my toes. I pushed the blanket aside to see if my toes were moving. They weren't. I felt awesome, though. I didn't care if I ever moved my toes again. All I wanted to do was lay in that bed and feel awesome. The curtain was pushed aside and I saw my husband's handsome face. He looked anxious.
"Are you okay?" he asked.
I didn't say anything, but I gave him the most awesome Thumbs Up ever.
"You are an awesome shade of green," I told him.
"Yeah," he said. "I don't feel so awesome."
I kind of felt some not-so-awesome reality sort of coming back to me. It was like seeing something in your peripheral vision when you are only half awake.
"I need to find someone who knows something about our son," he declared.
"Nonsense," I said. "They'll find us if we need to do anything."
My husband gave me a look that I vaguely understood. It kind of maybe meant that I didn't really necessarily understand what was going on. (FYI, they have awesome drugs at this hospital.)
A woman I had never seen before and haven't seen since harshly shoved aside my recovery room curtain and roughly asked me if I felt okay and did I need orange juice. I said yes to the orange juice and also asked for crackers and a Chik-Fil-A breakfast biscuit. She raised an eyebrow and returned a few minutes later with five packages of saltines, two cartons of apple juice, and a can of ginger ale. No awesome chicken biscuits in sight. The drugs were wearing off enough at this point that I understood the ginger ale was for my husband, and I was beginning to remember that he was sick. I gave him everything except the apple juice and one package of saltines (I was hungry, too!).
I kind of remember calling my mom, who was at a park with my daughter and the rest of our family. I'm sure I told her that our son was okay for now, having been admitted into the NICU.
NICU.
Neonatal Intensive Care Unit.
Those ten syllables are deceptively simple.
It sounds like a sweet place where preemies go to grow, like the Cabbage Patch!
It isn't. It looks like the place in "Jurassic Park" where they grew dinosaurs.
Doesn't it?
The first time I went there, I was rolled in. My nurse was amazing. She's from Australia (I don't know why she's here), so her accent was awesome. She wheeled me into the NICU, gave me only a fleeting glance at my son, and then wheeled me back into my room at top speed. Immediately upon entering my room, she began talking about how important breastfeeding is. I was still heavily drugged, but she was taking no excuses. She hooked my boobs into a Medela hospital pump, started the machine for me, all the while extolling the virtues of immediate breast milk, and wrapping his first blanket around my neck so I was surrounded by his scent. I expressed the tiniest bit of colostrum ever, but this nurse was ecstatic. She wrapped me back up in a blanket and threw me on a wheelchair, congratulating me on this itty bitty bit of colostrum.
This was the second nurse that made me realize that nurses do all the work. When we got back from the NICU that first time, she told my husband how awesome I was for producing such amazing colostrum. She enthusiastically showed him how to clean out my pump parts. She took some time to explain to us how difficult it is for babies with Down Syndrome to nurse, and how important it was for me to never give up. She stressed the importance of pumping, and she talked about the possibilities of our son learning how to nurse on his own.
She kept coming back to see me, to check on me, to hook me up to the breast pump. She showed my husband how to operate the pump, how to care for me between nurses. She took the time to learn our names and she gave us her cellphone number.
The next nurses were almost as nice; but maybe my memory is clouded.
Two or three days after he was born, my sweet sister and her family had to go home. They live 5 hours away from this hospital. My parents and my grandmother went back to the city in which my family lives so they could look after my daughter. The weekend before Christmas was upon us.
This hospital is cold, cavernous. I spent all this time wearing the hospital gown. I didn't change. Complications in my surgery required a few extra days in the hospital for me. I wasn't able to walk around on my own. I spent many days in a wheelchair; my husband wheeled me down to the NICU, that terrible catheter still inside me.
That catheter.
The handwashing!
Two minutes of handwashing!!
That's the equivalent of singing "Happy Birthday" about 6 times. The sight of the NICU sink will live on in my memory forever.
Which brings me to my first Beauty Tip From the NICU:
MOISTURIZE HANDS BEFORE, DURING, AND AFTER EACH VISIT TO THE NICU
Why is this a beauty tip?
Our hands demonstrate our actions to the world. If your hands do not portray your intentions to all observers, you should re-evaluate the actions of your hands. If your hands do not portray beauty and love, you should re-evaluate the intentions behind your actions.
Tuesday, April 23, 2013
We're One; But We're Not the Same
I brushed my hair. It smelled awkward because I'd used unfamiliar grooming products . It was a weird vanilla lime thing that my husband bought in the hospital gift shop. It was all they had. He'd packed our bags when he drove back to get our daughter, but we were out of conditioner at home; we meant to go to the store once we got back in town the previous Monday. This product set had shampoo, conditioner, hand lotion, body lotion, and bath gel. It was all vanilla and lime, which is a horrid smell.
I felt remarkably great. Our daughter was at a local park with the rest of my family while my husband and I waited to see if we would deliver today. I had eaten breakfast earlier, but had been told not to eat again in case a bed became available in the NICU. I was beginning to gain a sense of hope and promise. I was clean. My Mom had painted my toenails for me earlier, so they were the sexy cherry red color I normally keep them. I braided my hair while my husband and I chatted about trivial things. He jumped up and ran into the bathroom, and promptly vomited.
I pressed the nurse's button and when I heard the disembodied voice I spoke vaguely to the left again: "Can someone help me, please? My husband is sick." I felt hopeless. Whenever I've been sick, he's been so devoted. Whenever he's been sick, I've taken total care of him. This time, though, I had just been strapped back into the hospital bed after my overdue shower. I couldn't get up to go in there and be with him. I couldn't hold his hair back from his face and apply a cool washcloth and deliver ginger ale.
Laurie came in.
"I can't do anything," she said. "He isn't my patient."
"Of course!" I said. "I get it. Can you bring ME some ginger ale and some Tylenol?"
"I can do that," she winked at me.
Jono passed the rest of the day in a weirdness, laying prone on the father's bed in the hospital.
A few words about those father's beds... Are they crazy?! How can a reasonable person expect a grown man to sleep on a bed the size of a cubical desk and then also be prescient enough to do sudden double duty as husband and father? I would like to see Queen Size hospital beds so the fathers can snuggle up next to the new mothers, making us feel safe and secure while they get enough rest to be refreshed for the first diaper change that is inevitably their responsibility. "Husband-Coached Childbirth?" I don't want my husband coaching CHILDBIRTH, of all things, without adequate rest! I look at the hospital father's bed as something that has fallen through the cracks of Feminism.
So the next morning, he was finally dozing in that atrocious sleeping contraption when the anesthesiologist came to visit me.
I'd had a bad experience when my daughter was born: the anesthesiologist calculated my dose wrong and my blood pressure dropped to near-death levels and I blacked out. To her credit, though, she came into my room after and admitted her mistake. So I told this guy that I wanted him to verbally verify my weight before injecting me and to stay right by my face throughout the surgery so that he could react quickly if something was amiss. I also asked if he could numb me up BEFORE the catheter was put in. I'm a great patient: I do everything I'm told, I answer questions in bullet points, I'm never squimish, I'm very cooperative... unless a catheter enters the equation and then I'm a total diva.
After talking to him, Laurie came in to tell me that my family had returned from the park and was asking to see me. She let them all in at once: my sister and her family, my Dad, my Mom, and my Grammy. And my sweet daughter. I felt so bad for her. She was scared of the straps, wires, and beeps coming from me. Everyone dispersed around the room, finding a comfy spot. My Mom sat next to my husband and offered her support.
My doctor came in. Out of the corner of my eye, I saw Grammy sidle up in her chair and smile fetchingly.
I don't remember what he said; it was something about delivering the next morning. After he left, Grammy smiled at me.
"That's your doctor?" she asked.
"Yes."
"He's right handsome," she observed. "I bet he's a great doctor. The great ones are always handsome."
I didn't sleep that night. Jono was up and down vomiting every few hours. The documentary "Mankind: The Story of Us" had started, so we tried to watch it. He finally fell asleep just before dawn. When I realized he was sleeping, I undid my bedstraps and detached the wires so I could close the blinds and hopefully buy him a little more rest.
But, oh! Alarms go off if you do that! I felt like such an idiot. Of course, if you take the monitor off your belly, it looks, at the nurse's station, like a baby's heart has stopped beating. Thankfully, Jono slept through the Nurse Brigade, and they closed the blinds for us, and our son's heart was still beating as if it didn't have an issue at all. I relaxed a bit.
For a few minutes.
Maybe a full hour.
Then they came for me. In my memory (which is most likely inaccurate) seven doctors and nurses stormed my room just after my entire family came in.
***A blur of activity***
My favorite nurse, Laurie, was holding my hands as I sat upright in an overly bright room. The anesthesiologist appeared and tipped my face up with his fingers. He looked me in the eye and repeated our conversation back to me and asked me if that was all correct. Laurie showed me pictures of her sweet kids. I felt a lengthy puncture in my lower spine, followed by what can only be described as a "filling of the spine," and that's local anesthesia. None of that was painful, just odd. After that, I kind of tipped over and that amazing anesthesiologist stayed true to his promise. He never left my face. I was aware of the catheter being inserted, but only because he told me so. Laurie appeared for a minute, and I could see the crinkles of her eyes as she smiled at me behind her surgical mask.
I heard voices. So many voices.
Finally! I saw Jono's face. He looked tired and worried. I barely remembered that he'd been sick.
I felt a bit of tugging at my abdomen.
There was a suspended silence in the room. Remember: amniocentesis was inconclusive. Other than the two certain heart defects, no one knew what was going on with Elijah.
I looked at my anesthesiologist in the eye. "I can feel a bit of pain, kind of like menstrual cramps. Am I supposed to?"
"No. I'll take care of it."
"I'm kind of freaking out. Do you have something for that?"
"Yes. It will probably cost extra."
"I don't care."
"Okay. I'll put it in your IV. You'll feel better in about 10 seconds."
I heard a bit of a chuckle. A voice. Suddenly, a baby was put in my line of vision. He looked like Sophia with Down Syndrome. At this point, we didn't know if Elijah had Down Syndrome conclusively, but he looked like it to me.
The most important things, though: he was breathing on his own just fine, he wasn't blue, he didn't have a cleft palate, he wouldn't require machines to survive. Not yet.
I felt remarkably great. Our daughter was at a local park with the rest of my family while my husband and I waited to see if we would deliver today. I had eaten breakfast earlier, but had been told not to eat again in case a bed became available in the NICU. I was beginning to gain a sense of hope and promise. I was clean. My Mom had painted my toenails for me earlier, so they were the sexy cherry red color I normally keep them. I braided my hair while my husband and I chatted about trivial things. He jumped up and ran into the bathroom, and promptly vomited.
I pressed the nurse's button and when I heard the disembodied voice I spoke vaguely to the left again: "Can someone help me, please? My husband is sick." I felt hopeless. Whenever I've been sick, he's been so devoted. Whenever he's been sick, I've taken total care of him. This time, though, I had just been strapped back into the hospital bed after my overdue shower. I couldn't get up to go in there and be with him. I couldn't hold his hair back from his face and apply a cool washcloth and deliver ginger ale.
Laurie came in.
"I can't do anything," she said. "He isn't my patient."
"Of course!" I said. "I get it. Can you bring ME some ginger ale and some Tylenol?"
"I can do that," she winked at me.
Jono passed the rest of the day in a weirdness, laying prone on the father's bed in the hospital.
A few words about those father's beds... Are they crazy?! How can a reasonable person expect a grown man to sleep on a bed the size of a cubical desk and then also be prescient enough to do sudden double duty as husband and father? I would like to see Queen Size hospital beds so the fathers can snuggle up next to the new mothers, making us feel safe and secure while they get enough rest to be refreshed for the first diaper change that is inevitably their responsibility. "Husband-Coached Childbirth?" I don't want my husband coaching CHILDBIRTH, of all things, without adequate rest! I look at the hospital father's bed as something that has fallen through the cracks of Feminism.
So the next morning, he was finally dozing in that atrocious sleeping contraption when the anesthesiologist came to visit me.
I'd had a bad experience when my daughter was born: the anesthesiologist calculated my dose wrong and my blood pressure dropped to near-death levels and I blacked out. To her credit, though, she came into my room after and admitted her mistake. So I told this guy that I wanted him to verbally verify my weight before injecting me and to stay right by my face throughout the surgery so that he could react quickly if something was amiss. I also asked if he could numb me up BEFORE the catheter was put in. I'm a great patient: I do everything I'm told, I answer questions in bullet points, I'm never squimish, I'm very cooperative... unless a catheter enters the equation and then I'm a total diva.
After talking to him, Laurie came in to tell me that my family had returned from the park and was asking to see me. She let them all in at once: my sister and her family, my Dad, my Mom, and my Grammy. And my sweet daughter. I felt so bad for her. She was scared of the straps, wires, and beeps coming from me. Everyone dispersed around the room, finding a comfy spot. My Mom sat next to my husband and offered her support.
My doctor came in. Out of the corner of my eye, I saw Grammy sidle up in her chair and smile fetchingly.
I don't remember what he said; it was something about delivering the next morning. After he left, Grammy smiled at me.
"That's your doctor?" she asked.
"Yes."
"He's right handsome," she observed. "I bet he's a great doctor. The great ones are always handsome."
I didn't sleep that night. Jono was up and down vomiting every few hours. The documentary "Mankind: The Story of Us" had started, so we tried to watch it. He finally fell asleep just before dawn. When I realized he was sleeping, I undid my bedstraps and detached the wires so I could close the blinds and hopefully buy him a little more rest.
But, oh! Alarms go off if you do that! I felt like such an idiot. Of course, if you take the monitor off your belly, it looks, at the nurse's station, like a baby's heart has stopped beating. Thankfully, Jono slept through the Nurse Brigade, and they closed the blinds for us, and our son's heart was still beating as if it didn't have an issue at all. I relaxed a bit.
For a few minutes.
Maybe a full hour.
Then they came for me. In my memory (which is most likely inaccurate) seven doctors and nurses stormed my room just after my entire family came in.
***A blur of activity***
My favorite nurse, Laurie, was holding my hands as I sat upright in an overly bright room. The anesthesiologist appeared and tipped my face up with his fingers. He looked me in the eye and repeated our conversation back to me and asked me if that was all correct. Laurie showed me pictures of her sweet kids. I felt a lengthy puncture in my lower spine, followed by what can only be described as a "filling of the spine," and that's local anesthesia. None of that was painful, just odd. After that, I kind of tipped over and that amazing anesthesiologist stayed true to his promise. He never left my face. I was aware of the catheter being inserted, but only because he told me so. Laurie appeared for a minute, and I could see the crinkles of her eyes as she smiled at me behind her surgical mask.
I heard voices. So many voices.
Finally! I saw Jono's face. He looked tired and worried. I barely remembered that he'd been sick.
I felt a bit of tugging at my abdomen.
There was a suspended silence in the room. Remember: amniocentesis was inconclusive. Other than the two certain heart defects, no one knew what was going on with Elijah.
I looked at my anesthesiologist in the eye. "I can feel a bit of pain, kind of like menstrual cramps. Am I supposed to?"
"No. I'll take care of it."
"I'm kind of freaking out. Do you have something for that?"
"Yes. It will probably cost extra."
"I don't care."
"Okay. I'll put it in your IV. You'll feel better in about 10 seconds."
I heard a bit of a chuckle. A voice. Suddenly, a baby was put in my line of vision. He looked like Sophia with Down Syndrome. At this point, we didn't know if Elijah had Down Syndrome conclusively, but he looked like it to me.
The most important things, though: he was breathing on his own just fine, he wasn't blue, he didn't have a cleft palate, he wouldn't require machines to survive. Not yet.
Wednesday, March 20, 2013
Gratitude
Do you remember those flip-phones that came with the plan? It wasn't really that long ago, but it was long enough ago to make me feel old; and it was long enough ago to make things difficult for us at times because we didn't think we needed a SmartPhone (smart phone? Smart Phone? Smartphone? I don't even know how to spell this).
My husband was gone, getting the oil changed and the tires rotated and the brake pads replaced (get this stuff done when you're 7 months pregnant so you're not scrambling while someone's at the hospital 2.5 hours away from home). I was sobbing and lonely and schoolchildren were being murdered far away and my cell phone battery was dying and I didn't know what to do.
I was alone and strapped to a hospital bed and things were beeping and blinking and I had to pee.
I really wanted my Mommy and she was hours away and I couldn't even call her because my cellphone battery was dying.
I pressed the NURSE button on my television remote control (just taking a chance here because I'd already realized that technology wasn't going to see me through this by itself). A voice coming from a vague space to my left answered. "Yes," it said, this disembodied deliverance.
"I need to use the phone and I don't know how," I responded, directing my voice to the left. The only thing in that direction was a sonogram screen and a cabinet door, but who am I to argue?
"Someone will be with you shortly," the voice responded.
I did not feel comforted.
I waited.
There was a knock on the door and my nurse came in.
"Hi, Mrs. Shea. I'm Laurie."
"Hi."
"How are you this afternoon?" she asked brightly.
I began to cry again. I cried because it was afternoon, and I didn't realize that the day was passing so quickly. If it was afternoon, than my daughter should be out of school and we should be talking about her day, and I was missing her. How was I? Not well at all! I missed my husband, I needed my daughter, I was aching for my Mom, I wanted my sister by my side so badly. I was 33 years old and I felt like I was 13. I felt like a little girl who was lost without her family.
Laurie offered to call my family for me, but she saw that my phone battery was dying. She asked if I had my charger with me; I didn't. The hospital phone only takes credit cards and I didn't bring my purse in the hospital with me, so it was wherever my husband was.
Laurie left the room and came back with her personal cellphone. She told me to call whomever I needed to call and she'd be back in 30 minutes.
I called my sister, who told me she was already on her way. I called my dad, and he said the same thing.
I called my mom. Her voice is so amazing. She's a perfect Southern Lady with perfect Southern manners and gentility. I don't remember what we said, but I remember that I felt stronger after talking to her; I felt emboldened by her generosity.
Laurie came back. She and I chatted for a few minutes about her kids and her church and my job. She asked me if she could pray with me. And so we did. And then she left to see her other patients. And I was alone again.
And all of a sudden, I felt something.
Gratitude.
I felt so grateful to be right where I was right at that moment.
What?!
It's true. At that moment, I would not have traded life with anyone.
"I was sitting in a hospital room all by myself, waiting for a nurse. Two and a half hours away from home, my husband was driving away from me to pick up our daughter. My parents and my grandmother and my sister and her family were six hours away.
I was alone and scared, clutching an outdated cellphone with a dying battery, watching the breaking news of a school shooting in Connecticut."
I was alone and scared, clutching an outdated cellphone with a dying battery, watching the breaking news of a school shooting in Connecticut."
And I didn't want to move from that spot. I can't explain it; but I knew that I was right where I needed to be.
And then there was a knock on the door and I saw two little white shoes moving beneath the curtain. They stopped.
"Look who it is!" I heard my husband say.
The curtain was shoved dramatically aside. "Mommy?" my beautiful daughter demanded. "What are you doing? Where's my brother?"
Gratitude.
Not only had my husband driven so far and done so much just to bring me our daughter, but he'd also reminded her of the brother that was coming.
I looked up at my husband and I gazed into his face. He was tired. It showed in the creases of his eyes and mouth. He was only 29 years old and he already needed a break. But I also saw a fierceness and a protectiveness. I saw strength and love. He bent over my bed and he kissed me. It was passionate and sincere. It's so strange to think about, but the previous August we celebrated our 5 year anniversary. Our 5 Year Anniversary Of Knowing Each Other. We'd only met five years ago and here we were, fighting together for the life of our second child.
This was an answer to the prayers. The answer wasn't spontaneous healing of an infant. The answer was a change in perspective.
My whole life I'd been praying that God would change the world around me.
My whole life I'd been ignoring what he was telling me.
He won't change the world; that's why He gave us free will to make our own choices.
He will change us. He will change how we perceive what comes our way. He will change how we react, if we allow Him to.
We shouldn't just react to the world around us; we should change the world from within.
Dear Santa, I Really Do Believe
I left work in a rush, late as usual, to pick up my daughter from the church. My husband's youth group was having their Christmas Party that night. She was enjoying herself immensely, playing Foosball and eating too many ginger-chocolate-chip-sprinkled-whoopee-pie cookies. The Good Mother in me cringed inside because this would be the second night in a row she'd had a bunch of sweets at a Christmas Party. The Fun Mommy in me was excited she was enjoying her Christmas. I'm sure the two will always be at war.
Close to 9pm, I decided we needed to leave. The kids begged us to stay as Bob, one of my husband's Core Team members, left the room and came back in wearing a Santa hat and dragging a giant blue bag over his shoulder. He flung the bag down on the ground and bellowed, "MERRY CHRISTMAS TO THE SHEAS!!!"
Inside the bag were many many packages of diapers. Attached to the diapers, as well as scattered around in the blue bag, were envelopes for greeting cards. My daughter began to be sleepy and cranky, so I thanked everyone and we left. She went to bed fairly easily that night and I started opening the envelopes.
Lovely Christmas Cards and New Baby Congratulations Cards, all filled with well-wishes and promises for prayers... as well as cash, checks, and gift cards for gas, groceries, and our favorite restaurants.
I was alone when I opened these envelopes and felt the sweetness coming out of each one. My husband was still at church, waiting on the last parents to pick up their children so he could begin to clean up after the party. I sat on the couch, my giant belly aching and my lower back protesting. I kind of teared up a bit. I didn't even know all of these people. Some woman who's name I had never heard before gave us a $100 gift card to Shell Station so we could afford all the upcoming out-of-town hospital visits. Altogether, there was over $1000 in cash, gift cards, and diapers.
Only three days later, I was in my hospital room all by myself. I was scared.
There was a knock on the door. I got excited; I thought it was my husband returning with my daughter. But it wasn't. It was a florist with a delivery.
The card attached says, "Congratulations. We love you and we'll miss you. Merry Christmas." It was from my employees. This gorgeous bouquet would follow my family from hospital room to hospital room to hotel over the next two weeks. It would be our good luck charm and our Christmas Tree.
By the next day, my husband had returned with my daughter. My sister and her husband and their two kids were there; as well as my Dad and my Grammy and my Mom. It was the first time in many years we'd all been together in the days before Christmas.
We'd been told that there wasn't any room in the NICU so we'd have to wait another day to deliver. The immediate benefit of that news nugget was that I could eat, since I'd not eaten anything in 26 hours. By the time we found out, though, the hospital breakfast boat had long since sailed. So my husband went below decks to scrounge for food. He came back 30 minutes later with the Queen's Bounty. A yogurt parfait with berries and granola, a sausage biscuit with gravy and ketchup for me to choose my preference, a cranberry and orange scone, and a decaf pumpkin spice latte. He had also found time to swing by the hospital gift shop and pick up these:
His 'n' Hers Christmas Coffee Mugs. Guess which is His and which is Hers...
In the midst of chaos and fear, my husband found time for giving and laughter. With the family and our favorite nurse gathered around me in my bed, he presented me with these mugs. So silly and so perfect.
Close to 9pm, I decided we needed to leave. The kids begged us to stay as Bob, one of my husband's Core Team members, left the room and came back in wearing a Santa hat and dragging a giant blue bag over his shoulder. He flung the bag down on the ground and bellowed, "MERRY CHRISTMAS TO THE SHEAS!!!"
Inside the bag were many many packages of diapers. Attached to the diapers, as well as scattered around in the blue bag, were envelopes for greeting cards. My daughter began to be sleepy and cranky, so I thanked everyone and we left. She went to bed fairly easily that night and I started opening the envelopes.
Lovely Christmas Cards and New Baby Congratulations Cards, all filled with well-wishes and promises for prayers... as well as cash, checks, and gift cards for gas, groceries, and our favorite restaurants.
I was alone when I opened these envelopes and felt the sweetness coming out of each one. My husband was still at church, waiting on the last parents to pick up their children so he could begin to clean up after the party. I sat on the couch, my giant belly aching and my lower back protesting. I kind of teared up a bit. I didn't even know all of these people. Some woman who's name I had never heard before gave us a $100 gift card to Shell Station so we could afford all the upcoming out-of-town hospital visits. Altogether, there was over $1000 in cash, gift cards, and diapers.
Only three days later, I was in my hospital room all by myself. I was scared.
There was a knock on the door. I got excited; I thought it was my husband returning with my daughter. But it wasn't. It was a florist with a delivery.
By the next day, my husband had returned with my daughter. My sister and her husband and their two kids were there; as well as my Dad and my Grammy and my Mom. It was the first time in many years we'd all been together in the days before Christmas.
We'd been told that there wasn't any room in the NICU so we'd have to wait another day to deliver. The immediate benefit of that news nugget was that I could eat, since I'd not eaten anything in 26 hours. By the time we found out, though, the hospital breakfast boat had long since sailed. So my husband went below decks to scrounge for food. He came back 30 minutes later with the Queen's Bounty. A yogurt parfait with berries and granola, a sausage biscuit with gravy and ketchup for me to choose my preference, a cranberry and orange scone, and a decaf pumpkin spice latte. He had also found time to swing by the hospital gift shop and pick up these:
In the midst of chaos and fear, my husband found time for giving and laughter. With the family and our favorite nurse gathered around me in my bed, he presented me with these mugs. So silly and so perfect.
Thursday, March 7, 2013
A Case of the Mondays
"Let's take the bus," my husband said.
"No. I want to walk. It's just a few blocks," and I began walking. Swiftly, as if getting there faster could change something, I wobbled across the parking lot. The pain was probably intense and acute, but my brain was buzzing and I didn't feel anything physical. It was as if the logical part of my brain detached itself from the rest of things so that I could manage it all. I took my phone out of my pocket and called my store. It's a reflex, almost, with me, to call my job the minute something goes wrong in my life. That's always been true.
Sara answered the phone and I updated her on the situation and asked to speak to our boss.
A few words about my boss... He's so amazing. On the day I'm narrating for you, I'd worked with this guy maybe three times. We'd only just met. He didn't know anything about me, really, other than I was very pregnant and not very productive. He's a man's man, like Ernest Hemingway crossed with Clark Kent and Peter Steele. On this day he was clinically supportive, like Johnny Bravo mixed with Angela Lansbury.
"I'm walking to the hospital right now. Either we're delivering today or they'll send me home and put me on bedrest. Anyway, I won't be back until February," I said. And then, because I'm paranoid about putting people out, I said, "I'm really sorry."
Of course, he brushed it off and wasn't upset by it. Then again, it was only Monday. The start of a week can be filled with possibilities!
Then I called my Mom and told her to come right now (from six hours away).
We walked into the hospital lobby and I teetered over to the Guest Services Desk.
"Hi," I smiled (it probably looked ghastly, more like a grimace). "Can you tell me--"
"Take the elevator to your left. Go up to the third floor." The woman behind the desk didn't let me finish.
"How do you--"
She cocked an eyebrow at me.
Oh. Of course.
And all of a sudden I remembered the day my daughter was born. As I hobbled to the elevators, gripping my husband's hand, my mind was slammed into the same moment three years before. A different hospital, our own city, nothing alarming, a scheduled c-section for a baby girl two weeks overdue. On that day, I strode confidantly to the registration desk and tossed my hair back. I winked at the woman drinking her coffee and said, "I'm here to have a baby!" My brother-in-law was filming the moment, my pregnant sister and her six year old daughter were jubilant. My parents were excited, my grandmother was there, my husband was blushingly nervous. It was everything a birth day should be.
But this day was not. We were far from home, a week before Christmas, our daughter was 2 1/2 hours away in school and the rest of our family was in different states. We had no idea what would happen next and we didn't know what was wrong with our son.
Our son!
Low on amniotic fluid with an uncertain chromosomal future, he waited. Two heart defects detected and other problems pending, he waited. Lifted up in prayer and worn down by a faulty umbilical cord, he waited.
I told the nurses at the admitting desk that there had been a mistake and those silly women didn't believe me. They rang for the head nurse on the floor who came to speak with us. And (this is the craziest thing I may have ever said), I told the head nurse that we couldn't deliver that day because my daughter was in school and I didn't have anything to read. As I said that nutty bit, I remembered that my husband's car needed the brakes fixed. We had taken my car for the trip because it had just been serviced, but my car wouldn't hold the car seats. The car seats!! We didn't have a car seat for our son yet! My friend had only ordered it for me four days ago and two of those days fell on the weekend! The weekend!! We were supposed to go to the Penance Mass before the weekend! The Penance Mass!! It was tonight! Tonight!! We have to pick our daughter up from school! Our daughter!! I had to spank her this morning! OHMYGODIHITMYKIDTODAY!
I began to panic.
***A span of time in which many things happened that I don't remember because my husband will take over and take charge and get everything done when I lose my mind.***
I may have blacked out, I'm not sure. What I remember next is this: I was sitting in the giant leather chair in my room in Labor & Delivery, wearing only a hospital gown. My husband was standing in front of me, stroking my hair.
I sobbed. I put my arms around his waist.
"I can't do this without you," I blubbed.
"Yes, you can."
"Don't leave."
"I have to. I have to get our daughter. You will want her."
"I know."
"If I don't leave soon, I'll get stuck in traffic. The sooner I leave the sooner I'll be back, and I'll have our daughter, and everything will be fine."
We kissed.
He left.
I crawled into the bed and pulled the sheets and blanket up. I looked around. I began to cry again.
Then I stopped and I reached for my phone, sitting on the rolling tray where my husband left it for me. I sent one text message to three people. Those three people would forward my message to friends and a chain of phone calls and text messages would weave all over the country until hundreds of people were praying for us (or even just sending positive thoughts our way, because you don't have to be a Christian to want a positive outcome for someone you care about). I wasn't aware of all of that at the time, though.
I was sitting in a hospital room all by myself, waiting for a nurse. Two and a half hours away from home, my husband was driving away from me to pick up our daughter. My parents and my grandmother and my sister and her family were six hours away.
I was alone and scared, clutching an outdated cellphone with a dying battery, watching the breaking news of a school shooting in Connecticut.
"No. I want to walk. It's just a few blocks," and I began walking. Swiftly, as if getting there faster could change something, I wobbled across the parking lot. The pain was probably intense and acute, but my brain was buzzing and I didn't feel anything physical. It was as if the logical part of my brain detached itself from the rest of things so that I could manage it all. I took my phone out of my pocket and called my store. It's a reflex, almost, with me, to call my job the minute something goes wrong in my life. That's always been true.
Sara answered the phone and I updated her on the situation and asked to speak to our boss.
A few words about my boss... He's so amazing. On the day I'm narrating for you, I'd worked with this guy maybe three times. We'd only just met. He didn't know anything about me, really, other than I was very pregnant and not very productive. He's a man's man, like Ernest Hemingway crossed with Clark Kent and Peter Steele. On this day he was clinically supportive, like Johnny Bravo mixed with Angela Lansbury.
"I'm walking to the hospital right now. Either we're delivering today or they'll send me home and put me on bedrest. Anyway, I won't be back until February," I said. And then, because I'm paranoid about putting people out, I said, "I'm really sorry."
Of course, he brushed it off and wasn't upset by it. Then again, it was only Monday. The start of a week can be filled with possibilities!
Then I called my Mom and told her to come right now (from six hours away).
We walked into the hospital lobby and I teetered over to the Guest Services Desk.
"Hi," I smiled (it probably looked ghastly, more like a grimace). "Can you tell me--"
"Take the elevator to your left. Go up to the third floor." The woman behind the desk didn't let me finish.
"How do you--"
She cocked an eyebrow at me.
Oh. Of course.
And all of a sudden I remembered the day my daughter was born. As I hobbled to the elevators, gripping my husband's hand, my mind was slammed into the same moment three years before. A different hospital, our own city, nothing alarming, a scheduled c-section for a baby girl two weeks overdue. On that day, I strode confidantly to the registration desk and tossed my hair back. I winked at the woman drinking her coffee and said, "I'm here to have a baby!" My brother-in-law was filming the moment, my pregnant sister and her six year old daughter were jubilant. My parents were excited, my grandmother was there, my husband was blushingly nervous. It was everything a birth day should be.
But this day was not. We were far from home, a week before Christmas, our daughter was 2 1/2 hours away in school and the rest of our family was in different states. We had no idea what would happen next and we didn't know what was wrong with our son.
Our son!
Low on amniotic fluid with an uncertain chromosomal future, he waited. Two heart defects detected and other problems pending, he waited. Lifted up in prayer and worn down by a faulty umbilical cord, he waited.
I told the nurses at the admitting desk that there had been a mistake and those silly women didn't believe me. They rang for the head nurse on the floor who came to speak with us. And (this is the craziest thing I may have ever said), I told the head nurse that we couldn't deliver that day because my daughter was in school and I didn't have anything to read. As I said that nutty bit, I remembered that my husband's car needed the brakes fixed. We had taken my car for the trip because it had just been serviced, but my car wouldn't hold the car seats. The car seats!! We didn't have a car seat for our son yet! My friend had only ordered it for me four days ago and two of those days fell on the weekend! The weekend!! We were supposed to go to the Penance Mass before the weekend! The Penance Mass!! It was tonight! Tonight!! We have to pick our daughter up from school! Our daughter!! I had to spank her this morning! OHMYGODIHITMYKIDTODAY!
I began to panic.
***A span of time in which many things happened that I don't remember because my husband will take over and take charge and get everything done when I lose my mind.***
I may have blacked out, I'm not sure. What I remember next is this: I was sitting in the giant leather chair in my room in Labor & Delivery, wearing only a hospital gown. My husband was standing in front of me, stroking my hair.
I sobbed. I put my arms around his waist.
"I can't do this without you," I blubbed.
"Yes, you can."
"Don't leave."
"I have to. I have to get our daughter. You will want her."
"I know."
"If I don't leave soon, I'll get stuck in traffic. The sooner I leave the sooner I'll be back, and I'll have our daughter, and everything will be fine."
We kissed.
He left.
I crawled into the bed and pulled the sheets and blanket up. I looked around. I began to cry again.
Then I stopped and I reached for my phone, sitting on the rolling tray where my husband left it for me. I sent one text message to three people. Those three people would forward my message to friends and a chain of phone calls and text messages would weave all over the country until hundreds of people were praying for us (or even just sending positive thoughts our way, because you don't have to be a Christian to want a positive outcome for someone you care about). I wasn't aware of all of that at the time, though.
I was sitting in a hospital room all by myself, waiting for a nurse. Two and a half hours away from home, my husband was driving away from me to pick up our daughter. My parents and my grandmother and my sister and her family were six hours away.
I was alone and scared, clutching an outdated cellphone with a dying battery, watching the breaking news of a school shooting in Connecticut.
Friday, March 1, 2013
The Clarity of Last Moments
My husband and my daughter walked down to the mailbox. I wanted to go, but the pain wouldn't let me walk that far. So I trudged up the stairs to our apartment. Really, it was like swimming uphill through molasses wearing heavy boots those last few weeks. I plunked some ice into a glass and added water, slurping it down while looking out the window. It was such a pretty afternoon, late in the day, the last Sunday I had off before Christmas.
Suddenly, I was hit with a sense of urgency to DO something! Anything! Right now! Spontaneous fun!
I threw on a sweater, grabbed my purse, shoved on my shoes, and rushed out the door, down the stairs and I hopped into the car. (The whole process actually took about 10 minutes since I was moving so slowly.) I drove to the mailbox and saw my husband and daughter at the neighborhood playground. They saw me and walked over to the car.
"Get in," I said with a smile. My husband looked warily at me. He hadn't seen me smile in months.
"What's going on? Where are we going?" he asked.
"I-C-E C-R-E-A-M."
"Okay!" He laughed.
We pulled up in front of my favorite ice cream shop and our daughter screamed from the backseat: "YAY!! MOMMY'S FAVORITE ICE CREAM AND MY FAVORITE ICE CREAM! That's why you're my best friend!"
She and I had peppermint Christmas ice cream and my husband had this spicy sweet chocolate chili thing. After, I realized that I was actually hungry. So we decided to dine at the shady Chinese place next door to the antique store that is adjacent to my favorite ice cream shop. (It's an eclectic part of town.) And by "we decided" I mean that I was 8 months pregnant and thought soy sauce would be a great chaser to peppermint Christmas ice cream and my husband loves me enough to not disagree.
After eating bad Chinese food, we drove around the neighborhoods in that part of town that have big houses with residents that can afford big electricity bills that reflect extravagant Christmas light displays.
A few words about Christmas... I celebrate everything about Christmas. I like Santa Christmas. I like Retail Christmas. I like Jesus Christmas. I especially love Advent. I love the colors (gold, silver, red, and green for Santa Christmas; burgundy, navy and money -- yes, money is a color -- of Retail Christmas; brown for Jesus Christmas; pink and purple for Advent), the sounds (Jingle Bells, Dickens read aloud, register chimes and annoying pop music, carols, hymns, and silent prayers), the sights (random coniferous with red velvet bows, twinkling lights, gaudy tinsel, warm candles, Grandmas in unfortunate holiday sweater vests, muted colors of painted Nativity faces), the feelings. I was looking forward to this Christmas, our last as a family of three. My next appointment with the Maternal-Fetal Medical Institute at the University Research Hospital was the next day and I was going to ask for a note to get me out of work for the last two weeks of my pregnancy (moving around was getting unbearable at the time when my mobility was most needed). I'd be home to do so many Christmasy things with my husband and daughter, even though I wouldn't be able to go out much.
We drove home, singing "O Christmas Tree" and "Hark, the Herald Angels Sing," my daughter's favorites. I don't remember putting her to bed that night or if I had a snack before bed.
I remember the next morning. We were running late. The hospital that was treating me/us was 2 1/2 hours away and my first of three appointments that day was at 10am. I spanked my daughter that morning. I hate that part. I cringe at the memory. I will never get over it. She was in a cranky mood, having woken up for awhile in the middle of the night and still being sleepy. She was being cranky and mean to us. She slapped her dad. She doesn't normally behave that way, and we don't allow it. I didn't want to spank her. God knows she didn't want to be spanked. After we dropped her off at school, I cried a bit on the way to the hospital. It didn't seem right: being scared and sad at the same time. She was okay, though. She gave me a hug and a kiss and told me she loved me before we left her at school.
I settled in for the non-stress test once we got to the hospital. I loved that test. You sit in a warm easy chair with your feet propped up, blanket draped over you, soft felt straps holding the two monitors in place on your belly. You're given a cup of iced water to drink and music plays softly. All you have to do is push a button every time you feel your baby move. So I sat there and pushed a button intermittently and talked to my husband about a Christmas party we'd gone to over the past weekend, while Ray Coniff's Christmas CD played in the background. I fell asleep for a few minutes. When I woke up, he was playing with his phone.
"Did it look to you like he has a cleft palate?" I asked him. We'd had a detailed ultrasound first. They looked at his heart, stomach, bowels, and kidneys; the places that had given cause for concern.
"I don't know," he answered.
The nurse came back and took off my blanket and straps. She asked us to wait in the hallway. The ultrasound technician came out of a room and said:
"Your baby has very low amniotic fluid and we'll need to deliver immediately."
"What?" I think that's what I said. I may have said something unintelligible or I may have used foul language. Or maybe that's what was said, but my husband said it.
"Congratulations!" that stupid woman said. "You get your baby today."
"But... it's too early."
"Well, that's just what the doctor said. You have to do it today or he may not make it," she said haughtily. "Go over to Labor & Delivery and they'll get you started." And she started to walk away!
"Wait," my husband called after her. "We had amniocentesis a couple weeks ago and never heard back from Genetics. What were the results?"
The ultrasound technician walked down the hall to the Genetics office and came back 15 minutes later. (I don't actually know if it was 15 minutes, but that's what it felt like.)
"The results were inconclusive," she said in an oddly decisive tone.
Sunday, February 24, 2013
There Isn't Any ME
My guts were falling out. There couldn't be another explanation. The lower part of my abdomen felt like it had just given way; given in to gravity. There wasn't anything I could do. My womb had just fallen out of existence and the fragile life within was experiencing a turmoil I could not imagine! So I left work and rushed to the emergency room. Again.
The first time I rushed to the ER was a nightmare.
It started nine days beforehand. I had begun bleeding, and I read that the general rule was this: bleeding more than a week required an ER visit, and I had called Dr. Hill's office to make sure. I was admitted almost immediately. I was asked if I was nauseous and the answer was "No." I was asked to rate my pain on a scale of 1 - 10; I said 3. FOUR HOURS LATER a nurse came by to check my vitals. He stripped me to my skivvies and shoved a hospital gown at me. He came back TWO HOURS LATER and began to open a vein so that he could put in an IV port. Once the IV port was in he injected a needle and I asked what was in it.
"Morphine," he replied.
"You're joking," I accused.
"No," he smiled.
"Take it out," I demanded.
"No," he said.
"NOW!" I declared.
He took it out.
"When asked my pain rate, I said 3. Why did you give me Morphine?" I demanded.
"The doctor said to."
"Tell him I said 'No.'"
After a cursory sonogram, I was released, and told that I was still pregnant.
The second time I went for Emergency, I was in so much pain that I couldn't walk upright.
I left work to see someone about the pain. Here's the thing about pain: It's invisible. It's possible for some people to see that you are suffering. It isn't possible for people to see where the suffering is happening.
My pelvic bones had separated. I could feel them moving independently of each other every time I walked. The muscles of my abdominal wall had also separated, vertically. My job requires almost constant motion and I couldn't do it.
I couldn't see a way around it and I couldn't ask for help. My pride was too strong, and misplaced.
At home, tension was building. My husband found himself doing more and more housework without any contribution from me. My daughter felt the increasing irritability coming from me and she began to act out. Laundry piled up. The cats were cranky. The pain in my back, abdomen, and pelvis turned into a Gremlin.
The pressure at work took on a life of its own. I began to lash out at people who didn't deserve it.
Driving home from work one afternoon, I remembered a look...
Allan had always been a great coworker. Technically, his position was below mine; but I admired him and thought he was a good example of what a great work ethic is supposed to look like. That day, we had a strong disagreement about what our managers' schedule should look like for the next month. I behaved in a way that is inconsistent with my professional (and religious) beliefs. I was disrespectful to an ideal that was important to him. The look he gave me was incredulous, and also reproachful and disbelieving. I deserved it and I was ashamed.
For months, my pregnancy had been all about ME; and the MEness of everything. The pain, the possibility of a chromosomal abnormality, the sleeplessness... I had been thinking about it in terms of what it all meant to ME.
It wasn't about me.
It was about us.
All of us.
On the way home from work that day, the look on Allan's face wouldn't leave me alone. I realized that this experience wasn't just for whatever it meant to me. It was about everyone who's life I touched. Other people would see me and the way I dealt with this.
The very next day, it was all solidified for me. A woman I admire approached me and said, "I didn't realize all this was going on for you. My daughter had issues as an infant. It's not the same as what you're going through, but it will change you. You will be different when this is all over."
Her words stuck with me. What example is it for other people, if I go through a hard time and don't reflect the teachings of Jesus? If I struggle, yet still blame; or if I'm in pain, yet remain ungracious to the opportunities around me?
Everything we do; everything we experience... It isn't about us as individuals. It's about us as One Body. I'm Catholic and I believe in the One Body of the Church. But what about you?
No matter what you believe in... Do you believe in One Experience? The decisions I make for Elijah will effect how he interacts with society, which might effect how your children interact with my son.
The first time I rushed to the ER was a nightmare.
It started nine days beforehand. I had begun bleeding, and I read that the general rule was this: bleeding more than a week required an ER visit, and I had called Dr. Hill's office to make sure. I was admitted almost immediately. I was asked if I was nauseous and the answer was "No." I was asked to rate my pain on a scale of 1 - 10; I said 3. FOUR HOURS LATER a nurse came by to check my vitals. He stripped me to my skivvies and shoved a hospital gown at me. He came back TWO HOURS LATER and began to open a vein so that he could put in an IV port. Once the IV port was in he injected a needle and I asked what was in it.
"Morphine," he replied.
"You're joking," I accused.
"No," he smiled.
"Take it out," I demanded.
"No," he said.
"NOW!" I declared.
He took it out.
"When asked my pain rate, I said 3. Why did you give me Morphine?" I demanded.
"The doctor said to."
"Tell him I said 'No.'"
After a cursory sonogram, I was released, and told that I was still pregnant.
The second time I went for Emergency, I was in so much pain that I couldn't walk upright.
I left work to see someone about the pain. Here's the thing about pain: It's invisible. It's possible for some people to see that you are suffering. It isn't possible for people to see where the suffering is happening.
My pelvic bones had separated. I could feel them moving independently of each other every time I walked. The muscles of my abdominal wall had also separated, vertically. My job requires almost constant motion and I couldn't do it.
I couldn't see a way around it and I couldn't ask for help. My pride was too strong, and misplaced.
At home, tension was building. My husband found himself doing more and more housework without any contribution from me. My daughter felt the increasing irritability coming from me and she began to act out. Laundry piled up. The cats were cranky. The pain in my back, abdomen, and pelvis turned into a Gremlin.
The pressure at work took on a life of its own. I began to lash out at people who didn't deserve it.
Driving home from work one afternoon, I remembered a look...
Allan had always been a great coworker. Technically, his position was below mine; but I admired him and thought he was a good example of what a great work ethic is supposed to look like. That day, we had a strong disagreement about what our managers' schedule should look like for the next month. I behaved in a way that is inconsistent with my professional (and religious) beliefs. I was disrespectful to an ideal that was important to him. The look he gave me was incredulous, and also reproachful and disbelieving. I deserved it and I was ashamed.
For months, my pregnancy had been all about ME; and the MEness of everything. The pain, the possibility of a chromosomal abnormality, the sleeplessness... I had been thinking about it in terms of what it all meant to ME.
It wasn't about me.
It was about us.
All of us.
On the way home from work that day, the look on Allan's face wouldn't leave me alone. I realized that this experience wasn't just for whatever it meant to me. It was about everyone who's life I touched. Other people would see me and the way I dealt with this.
The very next day, it was all solidified for me. A woman I admire approached me and said, "I didn't realize all this was going on for you. My daughter had issues as an infant. It's not the same as what you're going through, but it will change you. You will be different when this is all over."
Her words stuck with me. What example is it for other people, if I go through a hard time and don't reflect the teachings of Jesus? If I struggle, yet still blame; or if I'm in pain, yet remain ungracious to the opportunities around me?
Everything we do; everything we experience... It isn't about us as individuals. It's about us as One Body. I'm Catholic and I believe in the One Body of the Church. But what about you?
No matter what you believe in... Do you believe in One Experience? The decisions I make for Elijah will effect how he interacts with society, which might effect how your children interact with my son.
Thursday, February 21, 2013
Welcome to Holland
I am often asked to describe the experience of raising a child with a disability -- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip -- to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michaelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland!"
"HOLLAND?!" You say. "What do you mean Holland?? I signed up for Italy. I'm supposed to be in Italy. All my life I've dreamed of Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for awhile and you catch your breath, you look around .... and you begin to notice that Holland has windmills .... and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy. And they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away .... because the loss of that dream is a very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things .... about Holland.
--Emily Perl Kingsley
When you're going to have a baby, it's like planning a fabulous vacation trip -- to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michaelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland!"
"HOLLAND?!" You say. "What do you mean Holland?? I signed up for Italy. I'm supposed to be in Italy. All my life I've dreamed of Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for awhile and you catch your breath, you look around .... and you begin to notice that Holland has windmills .... and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy. And they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away .... because the loss of that dream is a very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things .... about Holland.
--Emily Perl Kingsley
Friday the 13th
I pulled my left sock up just a bit. I rarely wear socks, and I get a bit self-conscious when I do; I like to make sure they are the same height before I leave the house. The phone rang. It was Dr. Hill's nurse and I assumed she was calling to confirm my appointment for the following week.
"Hi!"
"Hi, Mrs. Shea. It's Theresa at Dr. Hill's office."
"Yes, ma'am! How are you?"
"Oh, I'm fine. I'm calling because your afp blood test came back positive and I've scheduled an appointment for you with Dr. Williams at TMH with the Maternal-Fetal Medicine on June 26th at 10am and if you have any questions or need to change the appointment time you can call them directly have a nice day."
I didn't omit punctuation there. That's how she said it. Between that day and this one I've become familiar with all the different ways people deliver bad news. The Run-On-Drive-By is when they neutrally state the facts in a clear and concise manner that does not allow room for follow-up questioning. It's very efficient and not at all rude; it just kind of passes the buck on to another person.
I flipped the phone closed. I took a swig of water. I put the phone in my pocket and I tied my shoes. I walked to the gym to indulge in a 20 minute elliptical episode. I walked back home and I took a shower. I brushed the tangles out of my hair and I put on my makeup. I put on my maternity clothes and I got in my car. I drove to Havana and I looked at antique baby furniture.
I did everything in a deliberate way because I wanted the blood in my veins to begin flowing normally again. I concentrated on the MEness of it all because I knew there may never be ME time again.
We had been so happy, the three of us! Jono and DeeDee and our daughter: The Sheas. We had never made plans and we didn't always do things the correct way but we always made it right. We didn't plan on having another child, but we weren't planning on not having another child either, so the pregnancy wasn't unwelcome. It happened on Friday, April 13th, 2012, right after we saw "The Hunger Games" and ate at Albert Provence while our daughter was in school. I kind of think I should have known. Our daughter was conceived the day after Christmas when my husband missed his flight to Oklahoma and she has hit milestones at Christmas ever since. It would only make sense for our son to have been conceived on a traditionally unlucky day.
I strolled alongside the train tracks in Havana, kicking at the dusty grass and stubbing the toe of my shoe against the dandelions. Strange: the actions called to my mind a memory of myself doing something similar when I was a small child, growing up in small town Tennessee. There was a train depot in Gallatin, where a farmer's market would convene on the weekends. There was a place inside the depot for children to play, with a little door leading from the red caboose to the scorched summer grass outside.
I wanted my children to have similar memories. I don't know if children with Down Syndrome process experiences the same way.
I drove home in time to put a beef stew in the crock pot and pick our daughter up from school. She had a great day that day and Jono did, too. We had a fun evening at home that night and our daughter went to bed on time with her teeth brushed and no tantrums. Jono and I read for a little while in companionable silence. It had been about 9 hours since I got the call yet I hadn't said anything to him yet. I love him and I trust him and I knew he wouldn't be weird about having a son with Down Syndrome. It's just...
I don't know.
So I waited until he was done reading and I snuggled next to him. I told him what Theresa said when she called and then we were both silent.
"Hi!"
"Hi, Mrs. Shea. It's Theresa at Dr. Hill's office."
"Yes, ma'am! How are you?"
"Oh, I'm fine. I'm calling because your afp blood test came back positive and I've scheduled an appointment for you with Dr. Williams at TMH with the Maternal-Fetal Medicine on June 26th at 10am and if you have any questions or need to change the appointment time you can call them directly have a nice day."
I didn't omit punctuation there. That's how she said it. Between that day and this one I've become familiar with all the different ways people deliver bad news. The Run-On-Drive-By is when they neutrally state the facts in a clear and concise manner that does not allow room for follow-up questioning. It's very efficient and not at all rude; it just kind of passes the buck on to another person.
I flipped the phone closed. I took a swig of water. I put the phone in my pocket and I tied my shoes. I walked to the gym to indulge in a 20 minute elliptical episode. I walked back home and I took a shower. I brushed the tangles out of my hair and I put on my makeup. I put on my maternity clothes and I got in my car. I drove to Havana and I looked at antique baby furniture.
I did everything in a deliberate way because I wanted the blood in my veins to begin flowing normally again. I concentrated on the MEness of it all because I knew there may never be ME time again.
We had been so happy, the three of us! Jono and DeeDee and our daughter: The Sheas. We had never made plans and we didn't always do things the correct way but we always made it right. We didn't plan on having another child, but we weren't planning on not having another child either, so the pregnancy wasn't unwelcome. It happened on Friday, April 13th, 2012, right after we saw "The Hunger Games" and ate at Albert Provence while our daughter was in school. I kind of think I should have known. Our daughter was conceived the day after Christmas when my husband missed his flight to Oklahoma and she has hit milestones at Christmas ever since. It would only make sense for our son to have been conceived on a traditionally unlucky day.
I strolled alongside the train tracks in Havana, kicking at the dusty grass and stubbing the toe of my shoe against the dandelions. Strange: the actions called to my mind a memory of myself doing something similar when I was a small child, growing up in small town Tennessee. There was a train depot in Gallatin, where a farmer's market would convene on the weekends. There was a place inside the depot for children to play, with a little door leading from the red caboose to the scorched summer grass outside.
I wanted my children to have similar memories. I don't know if children with Down Syndrome process experiences the same way.
I drove home in time to put a beef stew in the crock pot and pick our daughter up from school. She had a great day that day and Jono did, too. We had a fun evening at home that night and our daughter went to bed on time with her teeth brushed and no tantrums. Jono and I read for a little while in companionable silence. It had been about 9 hours since I got the call yet I hadn't said anything to him yet. I love him and I trust him and I knew he wouldn't be weird about having a son with Down Syndrome. It's just...
I don't know.
So I waited until he was done reading and I snuggled next to him. I told him what Theresa said when she called and then we were both silent.
Subscribe to:
Posts (Atom)