Some Mothers Get Babies with Something More by Lori Borgman (author)
SOME MOTHERS GET BABIES WITH SOMETHING MORE… My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn’t matter whether it’s a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that’s what she says. That’s what mothers have always said. Mothers lie. Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will roll over, sit up and take those first steps right on schedule. Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but we mothers want what we want. Some mothers get babies with something more. Some mothers get babies with conditions they can’t pronounce, a spine that didn’t fuse, a missing chromosome or a palette that didn’t close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn’t see the kick ball coming and it knocked the wind clean out of you. Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can’t be possible! That doesn’t run in our family. Can this really be happening in our lifetime? I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It’s not a lust thing; it’s a wondrous thing. The athletes appear as specimens without flaw – rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler. As I’ve told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there’s no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the praise and the platitudes, well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike. I even wonder how you endure schmaltzy pieces like this one saluting you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn’t volunteer for this. You didn’t jump up and down in the motherhood line yelling, “Choose me, God! Choose me! I’ve got what it takes.” You’re a woman who doesn’t have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you’re way ahead of the pack. You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You’re a neighbor, a friend, a stranger I pass at the mall. You’re the woman I sit next to at church, my cousin and my sister-in-law. You’re a woman who wanted ten fingers and ten toes, and got something more. You’re a wonder.
Monday, June 27, 2011
Wednesday, June 15, 2011
G-Tube update
Went to see the girls' GI Specialist, Dr. Freeman, today. Both girls are gaining great, a little too great. I never thought I would EVER hear that. Here is the rundown on each kid.
JAZZMIN:
59.8lbs. vitals all great. Cutting her back from 1.5 cal formula to 1.0 formula and increasing the volume by 4 ounces. Got the report from her sleep study a few weeks ago. Impression: "This study is abnormal due to the presence of: 1. prolonged sleep latency and frequent arousals, some of which may be the testing environment and noise from the feeding machine." Pretty much means that she takes a prolonged period of time to fall asleep and woke up several times during the night. The report said she woke up an average of 8 times an hour and a total of 55 arousals. That seems like an awful lot. No onder she acts like a cranky, moody, hormonal teenager! Her pump isn't loud at all really, and I do not recall it having alarmed at all during the study. Not sure how the constant light whirring of her pump would have caused her to wake up. Also said that there was a total of 6 respiratory events. 4 central apneas and 2 hypopnea. So what does this all mean? Not a freaking clue. Now we have to see a neurologist. Probably have to go back to Chapel Hill because there isn't a pediatric neurologist who specializes in sleep disorders here in Wilmington. No change in meds.
SOLARA:
38.4lbs! vitals all great. Cutting her formula in half from 24oz. to 12oz. and completing the missing 12oz volume with water. She is consistently gaining great, but keeping her on this rate will send her BMI over our ideal percentile. We noted that she has very sweaty hands and feet ALL the time and complains she feels hot when no one else does. She also had her first g-tube replacement today after multiple episodes of panic of me trying to do it at home over the last few months. She has had the same button since her surgery in December and it wasn't holding water in the balloon very well anymore. Boy was that thing gross when we got it out. She is on a compounded formula of Xifaxin and it is so super orange. It stains everything it touches. Her connector extensions are all a stained yellowy-orange and so was the button. Now she has a shiny new mic-key button. Got a prescription for the AMT Mini-one button sent to the health care supply company. Jazzmin has this one and I love how low-profile it is. Definitely a lot less noticeable.
Nothing much more to report. We did get to see our friend Lauren today. She and her little brother are tubies too and we see the same doc. Little brother, Brent, wasn't feeling well though. Hopefully we can set up a sleepover at our house with Lauren. The kids don't get to do that very often. I am sure they would have a great time. We shall see! My girls have only ever stayed with my mom and that is NOT often at all! I have a hard time with it all. Convincing a momma of a tubie to let them stay over night somewhere is not an easy task, even when its with someone who has been trained to care for them. Such is the life!
CHEERS!
JAZZMIN:
59.8lbs. vitals all great. Cutting her back from 1.5 cal formula to 1.0 formula and increasing the volume by 4 ounces. Got the report from her sleep study a few weeks ago. Impression: "This study is abnormal due to the presence of: 1. prolonged sleep latency and frequent arousals, some of which may be the testing environment and noise from the feeding machine." Pretty much means that she takes a prolonged period of time to fall asleep and woke up several times during the night. The report said she woke up an average of 8 times an hour and a total of 55 arousals. That seems like an awful lot. No onder she acts like a cranky, moody, hormonal teenager! Her pump isn't loud at all really, and I do not recall it having alarmed at all during the study. Not sure how the constant light whirring of her pump would have caused her to wake up. Also said that there was a total of 6 respiratory events. 4 central apneas and 2 hypopnea. So what does this all mean? Not a freaking clue. Now we have to see a neurologist. Probably have to go back to Chapel Hill because there isn't a pediatric neurologist who specializes in sleep disorders here in Wilmington. No change in meds.
SOLARA:
38.4lbs! vitals all great. Cutting her formula in half from 24oz. to 12oz. and completing the missing 12oz volume with water. She is consistently gaining great, but keeping her on this rate will send her BMI over our ideal percentile. We noted that she has very sweaty hands and feet ALL the time and complains she feels hot when no one else does. She also had her first g-tube replacement today after multiple episodes of panic of me trying to do it at home over the last few months. She has had the same button since her surgery in December and it wasn't holding water in the balloon very well anymore. Boy was that thing gross when we got it out. She is on a compounded formula of Xifaxin and it is so super orange. It stains everything it touches. Her connector extensions are all a stained yellowy-orange and so was the button. Now she has a shiny new mic-key button. Got a prescription for the AMT Mini-one button sent to the health care supply company. Jazzmin has this one and I love how low-profile it is. Definitely a lot less noticeable.
Nothing much more to report. We did get to see our friend Lauren today. She and her little brother are tubies too and we see the same doc. Little brother, Brent, wasn't feeling well though. Hopefully we can set up a sleepover at our house with Lauren. The kids don't get to do that very often. I am sure they would have a great time. We shall see! My girls have only ever stayed with my mom and that is NOT often at all! I have a hard time with it all. Convincing a momma of a tubie to let them stay over night somewhere is not an easy task, even when its with someone who has been trained to care for them. Such is the life!
CHEERS!
Saturday, June 11, 2011
What did I eat last night?
So I have the weirdest dreams. This is one from last night.
I am driving down Mt. Misery Rd. headed toward Leland. About a mile before I reach 74/76, I see a HUGE black bear on the right side of the road. It was obviously hurt and laying on its side. Her baby was sitting in front of her belly. I decided I was going to pull the car over and "help" these HUGE freaking bears. Not really sure what I could do, I pulled over just past where the bears were. The kids were in the car, and I left them in the car while I went to assess the situation. The momma had a huge gash on her right hip (she was laying on her left side) and her right leg looked broken. I called somebody, I don't know who it was but it was a man. And by the urgency I took to contact him, he had to be someone who knew how to handle a HUGE freaking bear. He arrived instantly. Like he just appeared out of nowhere. I asked if I could hold the baby bear. It was heavier than my eight year old. Soooo cute and fluffy. The "man" remind me that the bear might bite because it is wild. I didn't care. It was all cuddly like a puppy, licking my face and pawing at my right hand. Then the little shit bit my index finger, but not hard enough to draw blood. The man had the situation under control and I headed to the grocery store.
It was the Food Lion I was enslaved by for so many years, but it looked different. The kids were no longer with me. I didn't get them out of the car, they were not there. The cashiers were wearing red and white thin striped aprons. I went through produce picking up various things and putting them back down, never putting anything in my cart (much like any REAL shopping experience for me). I went through the meat section and did the same thing, picking up packs of meat from the cases in the center of the big aisle and putting them back. I went down a middle grocery aisle. It had baby food and magazines, I needed spices. As I would leave one aisle, it would shift and change, morphing into different grocery items just as I would round the corner to the next aisle. I ended up at the end of the store where the dairy section is and still had not found the spices. My cart was still empty. There was a big pallet of bottled water next to me and I noticed I had a lit cigarette in my hand. One of the stockers came out of the back room pulling another pallet of bottled water and told me the new store manager was coming and I might want to get rid of my cigarette. He took it for me and went into the broom closet. I followed him. It was much more spacious on the inside than it looked on the outside. Kind of like the Tardis, with more red carpet and brooms and lot less Dr. Who. He put the cigarette out on the red carpet, pulled a lever on the wall and the entire floor flipped over revealing a gray indoor-outdoor carpet. Moore suitable for a grocery store than the plush red carpet he had just ruined by putting out my cigarette. (For those of you who do not know, I don't even smoke)I left and pushed my empty shopping cart outside.
I strolled over to the drink machines because I saw a familiar face standing over there. It was my little brother, Chris. He was frustrated because he didn't have a ride and his phone wasn't sending text messages or something. He said he was trying to get a hold of our Dad to come get him. I let him borrow my phone. It smelled like it had just rained. The ground was wet and it was muggy. I saw a rainbow in the sky but it was faint. I wanted to take a picture of it so I asked Chris for my phone back. The rainbow kept fading in and out and Chris was taking his time giving me my phone and I was getting irritated. Once he handed it back to me I had a good clear shot and tried to open the camera app on my phone. I started yelling at Chris, accusing him of doing something to my phone but my phone wasn't working right. All the app buttons were micro small and I could not navigate my phone. He said he didn't do anything. I was pissed. No rainbow picture. I continued to try and get my phone to work when a small plane landed on the side of the store to pick us up. This did not seem unusual at all to me and Chris and I got in and we took off. We accelerated on a very steep incline, high into the clouds. There was only two seats that were connected to each other right behind the wall where the pilot was. there was room enough behind us for another seat just like ours and room enough on the other side of the plane for 2 more seats just like ours. It was all open empty space. The inside of the plane was a dulled silver metal finish. After we reached our height, we journeyed forward for only a few minutes. Then we started on a rapid decline at accelerated speeds that made me lift off of my seat. For some reason I wasn't scared that we may be crashing, just a little nervous because of the speed. Like, I had flown this way before, but was just not used to it.
Upon our rapid decline, I noticed two flying white unicorns out of the right side window. They were side by side and my phone was still acting up so I took Chris'. I videoed them flying by. They were moving way faster than we were. As I handed Chris his phone back I saw another one. As I got my phone to record I only got from the torso back, it was just a blur. Chris could care less. He was at the window on our side of the plane, listening to his headphones while looking out the window. I felt so excited about seeing these creatures. I couldn't wait to show everyone to footage of them flying at super speeds. We landed back at Food Lion on the side of the building we were standing at before we left in the plane. Chris kept on his headphones and I returned to my empty shopping cart and we waited. My dad pulled into the parking lot in the old brown conversion van he used to have 13 years ago. It was the van he used for his painting company. He pulled up to us and Chris got in. I asked if he could give me a ride and noticed the rainbow was still there. He said sure, hop in. I took a picture of the rainbow and got in the van.
~THE END~
I am driving down Mt. Misery Rd. headed toward Leland. About a mile before I reach 74/76, I see a HUGE black bear on the right side of the road. It was obviously hurt and laying on its side. Her baby was sitting in front of her belly. I decided I was going to pull the car over and "help" these HUGE freaking bears. Not really sure what I could do, I pulled over just past where the bears were. The kids were in the car, and I left them in the car while I went to assess the situation. The momma had a huge gash on her right hip (she was laying on her left side) and her right leg looked broken. I called somebody, I don't know who it was but it was a man. And by the urgency I took to contact him, he had to be someone who knew how to handle a HUGE freaking bear. He arrived instantly. Like he just appeared out of nowhere. I asked if I could hold the baby bear. It was heavier than my eight year old. Soooo cute and fluffy. The "man" remind me that the bear might bite because it is wild. I didn't care. It was all cuddly like a puppy, licking my face and pawing at my right hand. Then the little shit bit my index finger, but not hard enough to draw blood. The man had the situation under control and I headed to the grocery store.
It was the Food Lion I was enslaved by for so many years, but it looked different. The kids were no longer with me. I didn't get them out of the car, they were not there. The cashiers were wearing red and white thin striped aprons. I went through produce picking up various things and putting them back down, never putting anything in my cart (much like any REAL shopping experience for me). I went through the meat section and did the same thing, picking up packs of meat from the cases in the center of the big aisle and putting them back. I went down a middle grocery aisle. It had baby food and magazines, I needed spices. As I would leave one aisle, it would shift and change, morphing into different grocery items just as I would round the corner to the next aisle. I ended up at the end of the store where the dairy section is and still had not found the spices. My cart was still empty. There was a big pallet of bottled water next to me and I noticed I had a lit cigarette in my hand. One of the stockers came out of the back room pulling another pallet of bottled water and told me the new store manager was coming and I might want to get rid of my cigarette. He took it for me and went into the broom closet. I followed him. It was much more spacious on the inside than it looked on the outside. Kind of like the Tardis, with more red carpet and brooms and lot less Dr. Who. He put the cigarette out on the red carpet, pulled a lever on the wall and the entire floor flipped over revealing a gray indoor-outdoor carpet. Moore suitable for a grocery store than the plush red carpet he had just ruined by putting out my cigarette. (For those of you who do not know, I don't even smoke)I left and pushed my empty shopping cart outside.
I strolled over to the drink machines because I saw a familiar face standing over there. It was my little brother, Chris. He was frustrated because he didn't have a ride and his phone wasn't sending text messages or something. He said he was trying to get a hold of our Dad to come get him. I let him borrow my phone. It smelled like it had just rained. The ground was wet and it was muggy. I saw a rainbow in the sky but it was faint. I wanted to take a picture of it so I asked Chris for my phone back. The rainbow kept fading in and out and Chris was taking his time giving me my phone and I was getting irritated. Once he handed it back to me I had a good clear shot and tried to open the camera app on my phone. I started yelling at Chris, accusing him of doing something to my phone but my phone wasn't working right. All the app buttons were micro small and I could not navigate my phone. He said he didn't do anything. I was pissed. No rainbow picture. I continued to try and get my phone to work when a small plane landed on the side of the store to pick us up. This did not seem unusual at all to me and Chris and I got in and we took off. We accelerated on a very steep incline, high into the clouds. There was only two seats that were connected to each other right behind the wall where the pilot was. there was room enough behind us for another seat just like ours and room enough on the other side of the plane for 2 more seats just like ours. It was all open empty space. The inside of the plane was a dulled silver metal finish. After we reached our height, we journeyed forward for only a few minutes. Then we started on a rapid decline at accelerated speeds that made me lift off of my seat. For some reason I wasn't scared that we may be crashing, just a little nervous because of the speed. Like, I had flown this way before, but was just not used to it.
Upon our rapid decline, I noticed two flying white unicorns out of the right side window. They were side by side and my phone was still acting up so I took Chris'. I videoed them flying by. They were moving way faster than we were. As I handed Chris his phone back I saw another one. As I got my phone to record I only got from the torso back, it was just a blur. Chris could care less. He was at the window on our side of the plane, listening to his headphones while looking out the window. I felt so excited about seeing these creatures. I couldn't wait to show everyone to footage of them flying at super speeds. We landed back at Food Lion on the side of the building we were standing at before we left in the plane. Chris kept on his headphones and I returned to my empty shopping cart and we waited. My dad pulled into the parking lot in the old brown conversion van he used to have 13 years ago. It was the van he used for his painting company. He pulled up to us and Chris got in. I asked if he could give me a ride and noticed the rainbow was still there. He said sure, hop in. I took a picture of the rainbow and got in the van.
~THE END~
Monday, June 6, 2011
Quick update
Things have been hectic. Last two weeks of school and I have been running around like a chicken with my head cut off. I feel like I have been going non-stop for weeks. Just to get you up to speed:
- Jazz had an over night sleep study in Chapel Hill 2 weeks ago. The tech who did the study, although very nice, reminded me of the principal from the Adam Sandler movie, Billy Madison. Weird. No results as of yet. I have lots of video I haven't uploaded yet.
- Saw GI and small changes to their feedings. Jazz has increased volume by 4 ounces and Solara switched to a fiber formula. Both strongly encouraged to increase their water intake.
-Family portraits done by Kathryn Falconer Photography downtown last week. I cannot wait to get those. Had a sneak peek to 4 pics and its killing me!
-I have sunburn on my upper thighs, and no where else. My legs are on fire. I seriously contemplated making today a no pants day, but I had shit to do in public and realized there was a hole in my underwear.
- Introduced the fiancée to the magical wonders of Margaritas
- Did an interview with a local radio station sharing the story of my girls and the care they receive at the hospital here. They are using it for their Radio-Thon in September to raise funds for the children's hospital. I did not sound like an asshole like I thought I would and I didn't even cry, I am so proud of myself. Got to take a tour of the studio and met some DJ's I listen to on a daily basis. pretty freaking awesome. Well except for that Susanne DJ. She pisses me off.
-My soon to be sister-in-law compared me to the Southpark version of Dog the Bounty Hunter's wife. follow that link...I was not amused.
- Had some sales in my Etsy shop this week and working on custom stuff. WOOT!
- The baby shit in the bathtub today. that was a glorious experience.
- Aforementioned baby turned 3 this past week. And by 3, I totally mean 30. She is such a demanding, screechy little human.
- In a fit of road rage, blew my horn at a jack ass driver, gave him the finger and called him an asshole. My 3 year old very excitedly told me "Mommy, that was AWESOME!!!" Another proud mommy moment. I laughed pretty hard about all that.
-Ate a cheeseburger with a krispy kreme donut as a bun. Most delicious thing on the planet, I might add.
I know I am forgetting a ton of shit right now but, whatever. There you go. CHEERS!
- Jazz had an over night sleep study in Chapel Hill 2 weeks ago. The tech who did the study, although very nice, reminded me of the principal from the Adam Sandler movie, Billy Madison. Weird. No results as of yet. I have lots of video I haven't uploaded yet.
- Saw GI and small changes to their feedings. Jazz has increased volume by 4 ounces and Solara switched to a fiber formula. Both strongly encouraged to increase their water intake.
-Family portraits done by Kathryn Falconer Photography downtown last week. I cannot wait to get those. Had a sneak peek to 4 pics and its killing me!
-I have sunburn on my upper thighs, and no where else. My legs are on fire. I seriously contemplated making today a no pants day, but I had shit to do in public and realized there was a hole in my underwear.
- Introduced the fiancée to the magical wonders of Margaritas
- Did an interview with a local radio station sharing the story of my girls and the care they receive at the hospital here. They are using it for their Radio-Thon in September to raise funds for the children's hospital. I did not sound like an asshole like I thought I would and I didn't even cry, I am so proud of myself. Got to take a tour of the studio and met some DJ's I listen to on a daily basis. pretty freaking awesome. Well except for that Susanne DJ. She pisses me off.
-My soon to be sister-in-law compared me to the Southpark version of Dog the Bounty Hunter's wife. follow that link...I was not amused.
- Had some sales in my Etsy shop this week and working on custom stuff. WOOT!
- The baby shit in the bathtub today. that was a glorious experience.
- Aforementioned baby turned 3 this past week. And by 3, I totally mean 30. She is such a demanding, screechy little human.
- In a fit of road rage, blew my horn at a jack ass driver, gave him the finger and called him an asshole. My 3 year old very excitedly told me "Mommy, that was AWESOME!!!" Another proud mommy moment. I laughed pretty hard about all that.
-Ate a cheeseburger with a krispy kreme donut as a bun. Most delicious thing on the planet, I might add.
I know I am forgetting a ton of shit right now but, whatever. There you go. CHEERS!
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