Compulsive hoarding is a mental disorder that is just beginning to be understood. As a hoarder, I have acquired things over the years with a specific purpose in mind at the time of the acquisition, used some of those items for their intended purposes, forgotten the goal for different objects, but now that I find that they have outlived their purpose in my life I am struggling to rid myself of those same things.

You can read the start of my journey here.

Friday, April 29, 2011

How sad.

While going through paperwork yesterday, I found the business card of the geneticist who was so rude to us after the amniocentesis that confirmed Scooter would have the genetic anomaly her sister had. She was highly offended and accused us of wasting the government's money, because we hadn't considered abortion an option, if we found out Scooter was going to have the same chromosome rearrangement her sister had.

I was curious as to whether there were complaints lodged against this doctor by patients, so I googled her name. I found out she died in 2005 of a brain tumor that was cancerous.  

I just feel sorry for her family. How torturous for her 3 sons and her husband to watch her succumb to something so heinous. And for her parents to lose their daughter. 

I found that her father died just 3 years after she did. He was 77. She was listed in the obituary, along with 2 brothers, as having preceded him in death. It made me wonder, if maybe the brothers were why she went into genetics in the first place. Perhaps they had some sort of genetic disorder that resulted in their death, and she went into the medical field to try and find an answer to keep it from happening again. The information I read concerning the brain cancer was that it occurred more readily alongside certain genetic conditions. 

Maybe this was all on her mind that day in 1993 when we saw her after the amniocentesis. Maybe she felt an urgency to find answers to try and stop whatever it was that killed her brothers. Maybe she was trying to find a cure, so she could save her own sons from this terrible thing.

I'm not sure what happened. 

I just know my heart breaks for her family.

Thursday, April 28, 2011

I may just live forever.

While finishing sorting through a box of paperwork today, I came across a couple of things that made me laugh...

The first is a plastic placard that can hang on a mirror or a window with a suction cup that still has the price tag on the back, in spite of the fact the suction cup is missing. It's got a cartoon from Cathy Guisewite's, "Cathy", comic strip on it. Cathy is on the phone with her mother. She's wearing her robe and red slippers standing next to her bed, which is heaped with clothes and hangers. The mother asks, "Are your clothes laid out, Sweetie?" to which Cathy, rolling her eyes, replies, "My clothes are laid out, Mother." 

I obviously found it funny and could identify with it when I bought it in the first place, and I find it funny but somewhat unsettling now. I think I may have been trying to tell myself something when I bought it, but I wasn't able to hear what that was. But it's still funny, because I see myself, Bugster, Hopper and Scooter all in it. However, I don't find it funny enough to keep. It will go in the donation box, unless someone wants me to send it to them. Email me, if you want it.
The second thing I found was a photocopy of a Calvin & Hobbes cartoon. Calvin is scowling with his shoulders hunched over, and the caption under him says, "God put me on earth to accomplish a certain number of things. Right now I am so far behind I will never die."

Looks like I've got a long life ahead of me.

Wednesday, April 27, 2011

Mack Attack!

Last night while minding my own business, my voice got up and left. I think it was bored with the conversation. Then, when I woke up this morning, I not only felt like I'd been run over by a Mack truck, but I felt like it had backed up and decided to try it again. 


We've got the crud that's going around, although it hasn't hit my lungs just yet like it has Scooter's. I have just been hit with overwhelming fatigue. Hopper has had the fever and the fatigue (she slept 21 hours the night before last and 16 hours last night), but she has no cough just yet. The Hubster missed 4 days of work from it last week, and Frank had it a few weeks ago. Bugster's lungs have been zapped with the crud, and she sounds horrible on the phone. So far, it appears as though the only one who has escaped unscathed so far is Bubster. Hope he doesn't end up with it, too.

I'm trying to take it easier physically. I don't want this crud to get the better of me. So I decided to work on paperwork.

A couple of weeks before Mom left to go home, she helped me in the garage. That's where we found all the extra boxes of laundry, after I thought we'd gotten it all done a few weeks prior. We cleared out at least 1/3 of the garage. We have this huge empty space now and can actually see the back wall of the garage. Before, we could barely make it out of the kitchen, and there was just a small path out to the porch. 

The clothes that were out there have been sorted, washed, thrown, donated or given away. I mentioned the other day that we donated 49 bags of clothes that had come in from the garage and 23 bags from the laundry that I'd been working on for the last 9 years or so. What I failed to mention is that I sent at right at 60 bags home with Mom for my sister's family, and I probably threw at least 50 bags, if not more.

The clothes that are still here are either going to be sold, worn, or put away for Bugster to go through to see, if she wants any when she has little ones of her own. They've been sorted according to size, folded and neatly put in some of the rubber totes that I emptied out and scrubbed with bleach. The totes will be stored in the garage inside large plastic bags, so there's absolutely no chance of bugs, mice or dust getting them dirty, so they'll take up a little bit of that free space we opened up.

What won't be taking up the free space is paperwork. After I dusted 2 dozen or so boxes of paperwork in the garage and brought them into the kitchen, Mom wiped them all off with a bleach-soaked cloth to disinfect them. Then she stacked them all neatly in the study for me to sort through. I started on them today.

I got through one box fairly quickly. It was full of proofs of purchases for items I was going to send in for rebates or special offers. There were soup labels, yogurt lids, cereal box tops, and the cardboard pieces that are torn away on boxes of tissues, so the contents of the box are accessible. The box was full to the top, and 99.9% of it went in the trash or in the shredables. And as tempting as it was to save the soup labels and cereal box tops for the local schools to send in for credit, I allowed myself to throw them away. To let go.

Then I started on the next box. It's a hard box to sort through. There's a lot in there I need to save. The medical records from many of the visits back and forth to Virginia are in the box, as well as the results of Bugster's genetic testing we had done 20 years ago. She's going to need that in the next few years, so I'm glad I came across it.

I'm about halfway through the box and I'd like to finish it before I go to bed, but I'm okay with it, if I don't get it finished up until tomorrow.

I can feel a caravan of Mack trucks lining up to run me down.

Tuesday, April 26, 2011

That which changed our Life Before. Part 8. Or...Meet my leetle friends!

The weeks following our trek to Virginia for Scooter's cleft palate surgery were a blur.

We took Hopper in for developmental testing, which absolutely drained our mental reserves. Instead of scheduling the testing over the course of several days, they had us bring her in for hours upon hours of testing in one day. What would have been a long day for an adult was torturous for a 2.5 year old, and she made sure to show her displeasure every chance she got. We'd do it differently and insist on staggering the tests, if we had the chance to do it again.

Some of the tests were absolutely ridiculous. It wasn't the tester's fault. She did the best she could under the circumstances, but the people who wrote the test...well, let's just say they did a bang up job. Most of the questions were pass/fail, so the child didn't get credit, if they didn't do complete the task exactly as it was written. 

Let's just say that caused some problems. Some of the problems had a hint of humor while being absolutely maddening. For example, Hopper was tested to see, if she could put a raisin in a tube. She could put cereal in the tube. She could put little chocolate candies in the tube. But for the life of her, she could not bring herself to put a raisin in the tube. In her little mind they were gross! The texture freaked her out, and she adamantly refused to pick them up. 

So while it was somewhat funny that she had such an aversion to raisins, it was incredibly frustrating that she wouldn't get credit for putting a small object in the tube. According to the test, it was a complete and utter failure, if the child didn't put a raisin in the tube.

You would think that since these tests are compiled by doctors who understand child development that they would take into consideration that children may have aversions to certain things. Considering that the point of the test was to see, if the child had the fine motor skills to put the raisin in the tube, and to see, if they understood the concept of 'in', the raisin itself should not have been the hold up. There is no doubt in my mind, my husband's mind or minds of testers around the world that the tests should be written with the ability to substitute raisins for cereal for chocolate candies, etc. Children who need to have these tests in the first place have enough going against them. The testing shouldn't be one of them.

To add to the stress of Scooter's surgery and Hopper's various tests, we were dealing with Hubster's separation from active duty with the United States Marine Corps. 

It only made sense to get all dental work caught up for each of us, all prescriptions refilled, final medical and veterinarian  appointments completed, and all medical records copied to bring with us to our new lives without the USMC. We also had to arrange for the movers to come and pack our household up and get the house cleaned for the military inspection.

The last major detail was to get the all clear from Scooter's plastic surgeon in Norfolk, so we set out for Virginia once. Dr. Magee was happy with her progress and felt it was safe for us to move cross country with our little girl. The cleft palate repair had gone well, and it was such a weight off our shoulders!

The stress had caught up to us a bit, so when Bugster brought home a respiratory bug from school, she and I ended up with walking pneumonia and bronchitis. We were advised to rest, which was easy enough for Bugster to do, but nearly impossible for me. I had too much to do.

Like clean the room we stayed in before leaving town shortly after I'd cleaned it in the first place...

We were staying in a small motel on base while we waited to be released from base housing, and for Hubster to finish up the last of the paperwork with his military unit. We'd spent the majority of the evening packing and squeezing the necessities in the car that we needed as soon as we got to Colorado, and we were tired and hungry. After I fixed something for us to eat in the little kitchenette and cleaned up, I set off to get the girls bathed, so we didn't have to do it in the morning before we set out.

Bugster bathed first, and then I went in with Hopper and Scooter to get them bathed and in their jammies, so they could go to bed. When I came out of the bathroom, exhaustion had set in, and I nearly lost it. I couldn't believe my eyes as I watched Bugster singing, dancing around and joyfully crumbling crackers all over the freshly washed counter and table top.

It didn't take long for the shock to wear off and for me to yell, "What are you doing??!!" to our oldest daughter. She looked like she was ready to cry when she explained that she was just trying to feed her 'friends'. 

Her friends? 

Yeah. Those would be the cockroaches that inhabited the base motel, and that we did not want to bring with us to Colorado!! Laughing and crying at the same time, I hugged her and dragged my weary body into the kitchen area to vacuum and scrub again before crawling into bed. Cockroaches totally freak me out, so needless to say, my sleep was fitful with dreams of them crawling all over our girls and into the crevices of our suitcases.

In the morning, still exhausted, we packed up the car, went to our friends' house to say our goodbyes.

Just a short 6 weeks after Scooter had her cleft palate surgery, we left the USMC, our good friends, and North Carolina behind.

Tuesday, April 19, 2011

Santa has left the building.

Christmas is finally over for the family who lives in the Closet.

Mom left for home Sunday.

It's amazing how empty the house is without her and her adorable little dog, but we will be eternally grateful to have had her here for so long! I am incredibly blessed to count her as one of my best friends. Ever. 

She encouraged me to keep going, even when I felt like I had no more to give while cleaning out the different rooms, and I'm so thankful for that. We accomplished so much while she was here, and I have every intention of keeping on keeping on.

At Mom's urging, I started keeping track of the loads of laundry I did after we found the boxes of laundry in the garage. I started working on them back on April 4th. In the last 15 days, I've done 73 loads. Of those 73 loads, 7 or so were bedding, towels or clothing we use day to day. 

And just when I thought I was done, I wasn't. Shortly after The Hubster left to take Mom home, I went to the laundry room to get a load started in the washer. I looked around the room to assess what I still had to do when I spotted a box I'd seen in there but hadn't really paid it any attention.

We'd brought some Christmas things in from the garage to put away with the holiday decorations. I've mentioned before that the laundry room is also where we store the decorations behind sliding closet doors and the box was sitting by the closet. The box was sitting on a large tote of Christmas wrap that had been brought in from the garage, so when I saw it sitting there, I assumed it was decorations.

You know what they say about assuming.

I opened the flaps of the box expecting to find ornaments when what to my wondering eyes should appear but a box full of laundry that meant something dear. I laughed out loud at the absurdity of it all. Here I'd thought I'd finished the last of the laundry from years ago except for the 2 dresses I had left that needed to be washed separately from the other clothing.

Instead, I found the box is full of clothes from my childhood. I took the time to sort it today after finishing up the girls' bedding in the wash and got the first load started to soak. I squealed when I saw my Holly Hobbie pillowcases from when I was a child. I adored Holly Hobbie, and finding the pillowcases, both the one my parents bought for me and the one Mom made me just made me happy inside and out.

There were also some of my favorite shirts from high school which will work for Scooter and her eclectic choices that make up her mix and match style. One of my favorite outfits Mom made me as a kid was in there, too. Not only did she make me the shirt and pants that matched, but she made shorts as well. I remember feeling so special when I wore that little outfit! And while my girls are too big to wear it, I am saving it. If we have no granddaughters to wear it eventually, I will save some of it for a quilt I have planned to make from a few of my favorite things.

I also found the vest my grandmother lovingly knit for me when I was about 10. It's yummy robin's egg blue with a pretty pink accent. Gramma always knitted vests or scarves or hats for us kids. We loved getting her packages in the mail and could hardly wait to try them on. Many a school picture was taken in a vest Gramma knitted for us. Seeing the vest brought back many happy memories in an instant. There was also an olive green shawl with a salmon pink accent that I'm sure Gramma knitted. I'll have to ask Mom. She'll remember.

Needless to say, this last box of clothing opened a floodgate of memories for me. I had mixed emotions, but by and large they were happy memories. I'm anxious to see how well they clean up, what I'll decide to save, what I'll have to toss, and what will be in good enough shape to donate. 

Speaking of donations...

I've been donating the clothes we're getting rid of to a local thrift store. Well, it's sort of a thrift store. They have all sorts of items in there that they sell, but they don't actually sell the clothes. They give them away to whomever might come in and need them. Last Friday, I took 49 bags of clothes down to them. It was so nice to get them out of the house and even nicer knowing that they will help out people who need clothes for their families. 

40 of the 49 bags of clothes that were donated.
There were several bags of clothes that went to the trash after they were torn up in the washing machine, or I couldn't get the stains out. But there were actually very few things that remained stained once I was done with them, and some things came clean that I'd never in a million years expect to get clean. 

For example a hoodie that had set in stains for the last 18 years:

NEVER in a MILLION years!!

Was I ever surprised when this is how it looked when I was all done with it!

Some little girl is going to love this hoodie!
Mom thinks I should send the last two pictures to the makers of Shout, Era Laundry Detergent, OxiClean and Clorox to give them an idea of what their products together can accomplish. 

In every load of clothes I washed that came from the garage, I started out filling the washing machine with hot water, adding a large scoop or two (it depended on how dirty the clothes were) of OxiClean, a cup of Clorox, half a cup of Era and then I sprayed the stains until they were wet with Shout. I followed this routine no matter what color the clothes were. Where the clothes had been stored so long, and there was evidence of mice, I wasn't willing to take any chances with not getting them clean. After a few minutes of dissolving the cleaning products in the hot water, I changed the water temp from hot to warm or cold and would then run the washing machine on the longest cycle it has. I was in shock at how many clothes came out perfect right away.

Those that still had stains went into the sink that held OxiClean water to soak the clothes for a few days. Ninety-nine percent of the stains came out after soaking, if they didn't come out in the first wash. Of the clothes that were donated, there were maybe 5 pieces that had stains no bigger than my little fingernail. The rest looked new.

Most are gone now, and the ones I have left are either being used or packed away for Bugster and Bubster's future babies. 

Best of all? As soon as I finish the last few loads of laundry from the box I just discovered, I will be completely caught up on laundry for the first time in 20 years. 

How unbelievably freeing!

Monday, April 18, 2011

That which changed our Life Before. Part 7.

Time seemed to fly by and drag at the same time while we waited for the surgery date to arrive. 

I did what I could on my end to be prepared. I called the Ronald McDonald House that was located across the street from the hospital to see, if we could stay there when Scooter had her surgery. They said they wouldn't know until the night before. Talk about nerve-wracking. So I called the hotel we typically stayed at that was on the bay's edge made reservations. I explained that the Ronald McDonald House may be available to us, but that we wouldn't know until the last minute. Thankfully, they said we could cancel the hotel reservations, if the RMH came through, so at least we had a back up plan.

I've always had to expect the worst and pray for the best in situations like this. That way, I would be prepared for anything in between. But sometimes, it's easier said than done, and my mind would get caught in a pattern of just imagining the worst. Considering I was still experiencing the imbalance of hormones that results from giving birth, I was a mess. I was just plain scared. No amount of planning could actually prepare me for what I felt. 

I was in a fog. I dared not give into the helplessness I was feeling. I had The Hubster, Bugster, Hopper and Scooter relying on me being able to stay strong. Before we knew it, the time for the fretting and worrying and running worst case scenarios through our heads was coming to an end.

When we got to Norfolk, we drove immediately to the Ronald McDonald House to see, if we could stay there. Thankfully, a room had opened up when another family left that morning. I called the hotel and canceled, and we got settled in the RMH.

We were briefed on the rules. We had to make our beds daily and wash our bedding before we checked out. We could eat anything in the kitchen area, but if we cooked anything, we were expected to clean up after ourselves by doing our dishes and putting them away and wiping down the counter. The girls could not be left alone at anytime. And only one parent could sleep at the RMH each night. They expected the other parent to be sleeping the night at the hospital with the child who was ill. It was all very reasonable, and it worked out perfectly, since the doctor wanted Scooter admitted the night before her surgery, so she would be ready to go first thing in the morning.

After checking in, we headed over to the hospital to Scooter's pre-op appointment, got the necessities out of the way and spent the rest of the afternoon trying to keep our minds off things and keep Hopper and Bugster happy and occupied. Before we knew it, it was time to check Scooter in for the evening, so we walked over to the Children's Hospital of the King's Daughters as a family, and Hubster walked back to RMH with the older girls to get them settled for the night.

At the hospital, I tried finding something on TV that would take my mind off things, but I couldn't even concentrate enough to pay attention to what was on. So I held little Scooter in the rocking chair and attempted to sing to her. I tried remembering the words to songs I'd sung to Bugster and Hopper, but I couldn't think straight, so I did what any mom would do. I followed my own mom's example and made up nonsensical little songs about what was happening.

At some point, some of the words stuck, and I came up with a little song that we've sung many times over the years with no regard to how corny it sounded to others.

Mama's little girl
Has a little curl
Right in the middle of her forehead
Scooter O'Shea* is her little name
And bein' Mama's baby
Is her little game

It calmed her to hear my voice, and it calmed me to know she was finding comfort considering I can't carry a tune in a bucket with the lid taped shut. Plus it gave me something to do to keep my occupied with things other than imagining the worst. 

Imagining the worst was easy for me when I first saw her after her surgery. The nurses brought me back before they cleaned the dried blood off her little face, and I thought I was going to faint when I saw her. I was terrified that the dried blood meant things didn't go well. Logically, I knew it didn't mean that at all, but when you're only 6 weeks past a major surgery yourself and dealing with hormones and the stress of your baby just having undergone a fairly intense surgery, you're not thinking logically. 

I asked the nurses, if I could wash her face off, or if it would hurt her, because her mouth would be sore. They said it would be fine and brought me a couple of washcloths and a small basin of water. And even though the nurses assured me that I wouldn't hurt Scooter, if I washed the dried blood from her face, I was even more gentle than normal. I couldn't stand the thought of seeing her with the blood on her face anymore, and I couldn't handle the thought of causing her anymore discomfort.

I don't recall how many days Scooter was hospitalized after she had her surgery, but she did very well, and we couldn't wait to go home. We were all more than ready to live together as a family again, even though we only lived a football field or so apart when she was in the hospital. 

We had realized a long time ago that we drew strength from one another, and we needed to recharge.

*Of course her real name isn't Scooter O'Shea!

Tuesday, April 12, 2011

That which changed our Life Before. Part 6

Feeding Scooter, as feeding any baby with a cleft palate, was a bit of a challenge

Physically, she couldn't nurse. For that matter, she couldn't drink out of a regular bottle, either. We had to use a special bottle called a cleft palate nurser with special cross cut nipples in order to feed her. With the cleft in her soft palate, she couldn't get any suction in order to breastfeed or eat from a regular baby bottle, even though the hole was no bigger than my small fingernail. The cleft palate nursers are made of a soft, flexible plastic to make it easy to squeeze the milk out into the baby's mouth to make up for the lack of suction, and they worked fairly well once we got the hang of it. I hung onto the hope that she would one day nurse, and I made sure that all she had in her bottles was breast milk.

Seeing a baby with a cleft palate eat for the first time takes a person off guard, as milk invariably comes right out their little nose. It doesn't spray. It just sort of dribbles. But white is just not the color of what you're expecting to see come out of nostrils. Unfortunately, it also tends to make them cough and gag when they're eating, too. Bless her little heart. Eating was a chore for Scooter.

When she was a week to 10 days old, we loaded up the cleft palate nursers, the cross cut nipples, the breast pump and the kids and took off for Norfolk for Scooter's initial consultation with the plastic surgeon. 

We stayed at the same little cruddy hotel with lots of character that we did each time we went up there. Don't get me wrong. It was clean. It was just a bit worn down and its furnishings were not updated at all, but its backyard was the beach of one of the little inlets of one of the bays in the area. For the life of me, I can't seem to remember the name of the bay it sat on, but I know it wasn't the Chesapeake, itself. But there were shells of all sorts, little crabs and fun little things that kept a little one's interest. There was even a real sunken ship! 

We would pack up a cooler of picnic foods, grab the little tabletop propane grill and once or twice even the ice cream freezer and make it as close to a vacation as we could for the kids. As adults we were scared of what lie in store, and we didn't want the kids to pick up on that fear. So we did what we could to make it as special an occasion as possible.

We left NC the night before, so we would be able to see Dr. William Magee first thing in the morning. He and his wife founded Operation Smile and traveled around the world performing plastic surgery on children with cleft lips and palates who would otherwise never be able to afford the operation, (although at the time I made the appointment I knew of none of this). Often times, children with facial deformities are shunned by their communities, especially in developing countries. By having these surgeries, the children would look normal could live normal lives instead of being outcasts. 

This was our kind of doctor.

His compassion was palpable. He put both of us at ease right away and began talking about Scooter's condition. He explained that Scooter's cleft was not only in her soft palate as originally thought, but it extended a bit into her hard palate. He said that the old school of thought was to wait until the child was 2 or 3 years of age to have the first in a series of surgeries to fix the cleft palate and subsequent surgeries about a year apart until the cleft was repaired.

However, he said that doctors were finding that, if the initial surgery was done when the child was much younger that it often meant only one trip to the operating room instead of multiple surgeries. And as frightening and overwhelming as it was, we were all in. We wanted as few surgeries as possible for our baby.

Dr. Magee also explained that when there is a genetic abnormality or a cleft lip or palate present that the bone structure in the head is often malformed and can lead to other issues. He said that the probability was that Scooter would have multiple ear infections and would need tubes in her ears, as her Eustachian tubes would likely not drain properly.

We left his office feeling elated that we had found such an incredible surgeon on one hand and being terrified on the other hand. Our newborn little baby would be going in for her cleft palate repair when she was only 6 weeks old.

We had a lot on our minds as we made our way back to North Carolina, and it felt as though we held our breath the entire way.

Sunday, April 10, 2011

That which changed our Life Before. Part 5

The Marine Corps rarely allowed families to go on deployments, and at the time my husband was active duty, the shortest accompanied tour was 18 months. Shortly after we found out we were expecting Scooter, The Hubster found out his military unit would be deploying for 6 months. He would leave in March and return in October, be home for 2 weeks and leave on an 18 month unaccompanied tour.

Although I hadn't had the amnio yet, we knew that there was a chance that Scooter would have the genetic problem Hopper had, so The Hubster told his commanding officer that he would be leaving active duty. To be home for only 2 weeks in a 2 year period was too much for our family, and when the results from the amniocentesis came in a few short weeks later, we were very thankful he'd made the decision to get out. 

I can't describe how thankful I've been over the years. It's been so very difficult at times for us to go through what we've gone through together. I can't imagine having to have done it alone.

Scooter was born on my birthday that July. She was and is the best birthday gift I could have ever hoped for. She was absolutely gorgeous! She was a healthy 8 pounds 1 oz and had thick dark hair  that stuck to her head in swirls. She looked like she'd had a professional finger wave done before making her grand entrance into the world by c-section.

I was a bit preoccupied with things like a pesky surgery, so The Hubster had the privilege of cutting her umbilical cord and accompanying her to have her vitals checked and to be looked over by a doctor. Like most babies, she was crying. It sounded more like a young kitten mewing than a cry, though. We found out later that it was due to tracheomalacia, a condition similar to her sister's laryngomalacia

And while the weak cry that our youngest had was a bit distracting to The Hubster, it wasn't the situation that had his attention. For when she opened her little mouth all the way when crying, he noticed that she had a little hole above the uvula in the back of her throat. He said it looked slightly off, but it also looked somewhat normal. 

Still. It took him off guard enough that he couldn't remember, if he had a hole above his own uvula. So while the nurses were busy with Scooter, and he was washing up in order to hold her, he looked in the chrome paper towel dispenser above the sink with his mouth wide open. There was no hole in his throat. 

Scooter had a cleft of her soft palate, and we needed to head back up to Norfolk to have it evaluated. 

So just a week or so after having Scooter by c-section, we were back on the road to Virginia.

Saturday, April 9, 2011

That which changed our Life Before. Part 4

At some point during the drama with Hopper's heart, vocal cords, ears and tongue, I went in for an amniocentesis to see, if Scooter was going to have the same chromosomal abnormality that her older sister had.

The amnio itself was uneventful. We made a day of it, because we had to travel 50 miles from home to get it. We tried to make it a fun, happy, light occasion, even though we knew what the potential issues were that may face us. A few weeks later the results came in, so Hubster took the day off from work once again, we loaded up the kids, and headed back down to Wilmington for the results.

The doctor didn't want to give us the results outright. He wanted to prepare us for what lie ahead, so he started out with generalized small talk, so it was obvious to both The Hubster and myself that our baby was indeed going to have the same genetic condition that Hopper had. So I did what I could to hang on and not give into the panic I felt rising in my gut.

I glanced over at the genetic report that was lying on the doctor's desk and without moving it saw what the sex of our baby was. We had waited to find out. We wanted to be surprised. But now I needed to know. I needed to have something to hang onto at this really scary moment. I needed to start making plans to keep my mind off the scary unknown that loomed in front of us. I needed to know who I was falling in love with, so there was absolutely no chance of that love being diluted by the information we'd just been given.

"We're having another girl!" I choked back tears and tried to keep my voice uplifting and light. I didn't want the girls to see I was upset. I could not give into what I was feeling at the moment. Oddly, the thought that I couldn't get out of my head, like a bad song that just won't go away, had nothing to do with the chromosomal issues and the problems that may arise. Nope. I couldn't stop thinking that I was failing somehow by not giving my husband a baby boy. Today, it seems like such an odd reaction, but it's what passed through my mind at the moment, however fleeting the thought was. 

I also remember feeling somewhat smug that I could read the genetic report, even though the doctor was irritated with me for having blurted out that we were going to have a baby girl. I could tell he didn't think I was taking the situation seriously, when in fact I was taking it all too seriously. I had experience with this genetic condition, and he had none. I knew our family would face many challenges with Scooter, but I needed a win. 

Any win.

And then I was snapped back to reality.

For nobody told Bugster not to give in to what she was feeling. 

Sobbing, she yelled, "But I wanted a baby brother!" 

I have thought many times of how grateful I was for her little breakdown. I had no doubt she would love her little sister. She'd get over the fact she felt cheated at that moment in her little life. It would become a distant memory. However, it gave me something to focus on other than the immense grief I was feeling. I knew I would love my baby no matter the circumstance. But I also knew life would not be easy for her. And I grieved for what she faced. I grieved for the loss I felt myself, as I tried to stay composed.

We got the name of a geneticist to talk to about Scooter's diagnosis before we left, and we took the girls out to eat before heading back home. I don't remember the name of the restaurant, what we ate, or what anyone one was wearing. I just remember feeling like I was in a fog for the rest of the day.

When we got home, I made the appointment with the geneticist. Even though we knew that Hopper was the only one in the world at that point with the particular chromosomal abnormality that affects our children, we were hoping to get some new information about what it meant. 

Instead, we met the geneticist from hell.

She was a tall, slender woman with dark hair, but I don't recall her name. I just remember how cold and cruel she was. 

We began by asking her, if there was anything new about the genetic condition Hopper had and Scooter would be affected by. She had no news for us at all. Not surprisingly, we knew more about it than she did. But what happened next blew our minds.

She asked us when we would be having the abortion. 

We sat there dumbfounded with our mouths hanging open that she felt she had the right to assume we would end the life of our little one. 

Uncomfortably, we stammered that we weren't intending to end the pregnancy. 

So she began to brow beat us and extol the virtues she saw of us having an abortion. She told us how our baby wouldn't have a life worth living. That she'd amount to nothing. She'd likely never be able to walk or talk. That she'd probably be a vegetable. That we didn't have a right to put her through that or put that burden on society.

We were speechless. We were in absolute shock that she was trying to strong arm us into having an abortion like a pushy used car salesman trying to push a piece of junk car on an unsuspecting kid.

I don't know which of us spoke first, but we assured her that abortion was not an option for us.

She glared at us and yelled, "If abortion wasn't an option, why did you waste the government's money to have an amniocentesis?!"

I yelled right back at her, "So we can have access to the right doctors when she's born, if she has a problem!"

Dazed, but united, we stood up and left. 

In an odd way, I'm thankful for the run-in we had with the geneticist that day. It brought us closer together as a family, as a husband and wife, and it solidified our determination to do everything we could to protect and nurture our babies. 

We didn't know it then, but we would need that reliance on one another many times in our lives together.

Wednesday, April 6, 2011

That which changed our Life Before. Part 3

Shortly after we returned from the hospital in Norfolk, Mom went home, and life started to get back to normal.

Hopper finally started to walk at 19 months old, just weeks after we were back home. And while it was humorous to watch her walk, it was obvious she needed help. Walking down a 3ft wide hallway, she'd bounce from wall to wall. She looked like a little tiny drunken sailor. She was adorable and it was funny to watch. 

Until she fell. 

We lived in base housing, and for anyone not familiar with base housing, the floors are hard. They are cement covered with a commercial grade linoleum. So when something fell on it, the thing that fell was likely to break. Even if that thing was a child.

Hopper's little tongue stuck out pretty much all the time. It made for adorable pictures. She was absolutely precious. Talking a mile a minute, giggling nonstop, and she was constantly on the go. One of the happiest, funniest and fun little things you could imagine. A little bundle of dynamite.

During one of her treks around the house at top speed, she slipped, and fell right on her face. Right on her little tongue that stuck out between her teeth all the time. She bit all the way through it, and the amount of blood was unbelievable. We scooped her up and rushed her to the emergency room where they told us that there was nothing they could do. The tongue apparently heals so quickly that they don't require stitches. 

Sure enough, within a couple of days, her tongue was much better, and she was eating normally again. Until she fell. Again. Twice. She bit through in the exact same spot. Twice. Then she fell again and bit through her tongue in a different spot. She bit through that spot 2 more times as well. 

Being pregnant at the time, I tended to worry even more than normal as a mom. I'd have the most horrific and graphic dreams about her little tongue and not making it into the room in time to stop the dog from...Well, no sense in me giving anyone else nightmares over it. 

We made an appointment to go back to Norfolk and see the ENT that had seen her and diagnosed the vocal cord paralysis to get set up to get her first set of ear tubes. While we were up there on that visit, we made yet another visit to have Bugster evaluated for ear tubes as well. We made a total of 6 trips to Norfolk for evaluations, surgeries and post-op visits for the girls' ears alone within just a couple of months. 

Thankfully, the tubes did their jobs on both girls, the ear infections slowed considerably, and little Hopper could walk without running into walls. She still had so much energy, coupled with ADHD, that she bounced off the walls, but at least she didn't run into them anymore. 

The fact Hopper was no longer running into walls and no longer suffering from ear infection after ear infection helped bring my stress level down drastically. It was such a relief in the 4 months that followed to not have to worry about Hopper tripping and biting her tongue off was huge. 

I had much bigger worries in store, and I needed all the help I could get.

Tuesday, April 5, 2011

That which changed our Life Before. Part 2

When Hopper was born, she squeaked. She squeaked when she breathed in. She squeaked when she breathed out. It wasn't a soft little squeak like a mouse would make. It was much louder. Like a squeaky door hinge. She was diagnosed with a Stridor that was the result of Laryngomalacia. And by the time we were in the doctor's office in Norfolk 2.5 years later, The Hubster and I didn't hear it anymore. Well, we could hear it when she cried, but there was such a huge improvement that we really didn't hear it.

So when the pediatric cardiac surgeon came through the door and asked who was squeaking, The Hubster and I didn't even know what to say. He said that he could hear it through the closed door of the exam room across the hall in his office with the door closed. We were in shock. We honestly had gotten so used to it that we didn't even notice it anymore. Mom was shocked that we didn't hear it, because she said that she was surprised at how loud it still was after all these years.

The surgeon was unwilling to operate until we saw an ear, nose and throat doctor to find out what was causing the squeak. Because Hopper should have outgrown it by the age she was at the time. So we went to the ENT the next morning. 

We were told that Hopper not only had the Laryngomalacia, which she had mostly outgrown, but also had paralyzed vocal cords. They could still vibrate, but they didn't open and close like they should, and that's why she squeaked. We were told that she should have had a tracheotomy tube at birth, and that we were lucky she was alive and doing as well as she was. 

Boy, did that explain a lot! Like how she would turn blue and pass out when she cried when she was tiny. I took her to the pediatrician about it when she was little, and he said she was holding her breath to get attention and had a bit of a temper. That didn't sound quite right to me, but what did I know? I was overwhelmed with therapy and doctor appointments and dealing with The Hubster's 15 month deployment, so I didn't question it. I didn't insist on more testing to make sure, like I would now. I had to trust that the doctor knew what he was talking about. I thank the Good Lord that He protected Hopper. Things could have been so much worse. 

The ENT told us that although we had been lucky up until that point that we still needed to be on guard. We had to make sure Hopper never got overheated or cried too hard, because her vocal cords could swell shut. If her vocal cords did swell shut, she would need to have an emergency tracheotomy. 

So much for being able to breathe.

It was bad enough that she had a seizure once when she turned blue and passed out. The fact that we could have lost her shook us to the core. So when we went back to the surgeon later that day with the results, we were relieved to find out that he would not be performing heart surgery on Hopper. He said the risk of intubation far outweighed the risk of the heart defect that needed repaired. She would eventually need to have the surgery, but it could wait until her vocal cords grew enough there was no danger of intubation. 

We felt like we could breathe again. 

At least for a time.

Monday, April 4, 2011

That which changed our Life Before. Part 1

I've been on an emotional roller coaster today going through the laundry that had long been forgotten. They seem familiar and yet foreign to me. They bring back faint memories of a life that once was but passed too quickly. These clothes are the window to my past. To our past. And the memories associated with them are bittersweet.

You see, these clothes represent a moment in time when all was well with the world. When life was simple. When life wasn't all about hospitalizations and illness and loneliness and and emptiness that overwhelmed me. They were from our Life Before, and while I am no longer in that dark place today, I feel I need to acknowledge it, that I might realize I did the best I could and I can leave it in the past...

The Hubster was in the United States Marine Corps, and we were stationed at Camp Lejeune, NC. I was so proud of him for serving our country, and I was proud to be a Marine's wife. Granted, there were a lot of separations from being in the field for weeks at a time, and there was loneliness from missing 'home' that was over 1500 miles away, but overall we were happy.

We lived off-base in the community of Jacksonville in the Fall of 1992. The house we lived in had major problems that we didn't realize until we'd been there several weeks. It seemed I was always sick, and there was a good reason for it. There was mold and mildew growing up the walls inside the house. I had to move furniture and take pictures off the walls every few weeks and bleach the walls to get rid of the mildew and mold. The house apparently had no moisture barrier under the foundation, and it allowed for entirely too much moisture in the house. It was beyond miserable. I just never felt like I could breathe. I knew I had asthma as a kid, but when I would ask the doctors, if it could have possibly come back, I always got the same answer. My lungs sounded clear.

I did my best to carry on. I walked Bugster to kindergarten and home from school every day, and I stayed home with Hopper while Bugster was in school. I loved the time we had together. However, it wasn't long before I found out we were expecting Scooter. I had a few complications, as it was a high risk pregnancy, but I was falling in love with our little baby more and more every single day. 

Fall turned into Winter which slowly turned into Spring. In March of '93, we were approved for base housing, and we were thrilled. We were beyond ready to get out of that horrible and moldy house. I felt like I could finally breathe again and waited in anticipation for moving day.

In the meantime, we found out that Hopper needed to have heart surgery. They couldn't do the surgery at Camp Lejeune, so we traveled up to Norfolk to see what they could do up there. We were scared to death. The mere mention of heart surgery tends to stop a parent's heart mid-beat with fear, and we were no exception. We were scared.

Mom traveled the 1500 miles to be with us to help out when Hopper went in. She helped us move into base housing, and we all left for Norfolk the next morning. We had an appointment first thing to have Hopper checked out by the pediatric cardiologist prior to her surgery. 

Mom went with us to Hopper's doctor appointment, partly for moral support, partly to act as another set of ears to listen to what the doctor had to say should we forget something he said, and mostly, because none of us could see her sitting in the hotel waiting for us and worrying. We were all very thankful she was there, as things didn't go exactly as planned.

Sunday, April 3, 2011

When in doubt, punt.

Christmas has never lasted so long as it has this year. We've experienced yet another Christmas Miracle. Mom is staying another week, and we are so happy she is! There are high wind warnings all the way from our house to hers, along with snow and rain. It's just not safe for her to head home right now. She thought about heading home in the middle of the week, but she said she'd stay until next weekend, if we tackled the garage while she's still here. 

Today, we were in the middle of a full out blitz.

Tonight, we're exhausted, but feeling good at what we've accomplished so far. 

I'm also feeling a bit overwhelmed at what awaits.

Besides the customary tools, dust and mouse poop that are in the majority of garages in America, we found boxes of toys, paperwork and laundry. 

Yes. I. Said. Laundry.

Lots and lots of laundry. So that 50 loads or so I did last week? It doesn't even compare to what lies ahead. I'm guessing I have 50 to 75 loads of laundry to do. I'm hoping I'm overestimating, but only time will tell. I will be keeping score.

In the deep, dark recesses of my mind I vaguely remembered there was laundry to do in the garage. However, it's been there so long that it just became part of the landscape. Just a dot on the horizon that's not really noticeable in the big scheme of things that is the garage. 

What I didn't realize was just how big that dot actually was. Turned out it wasn't just a shadow on the horizon. It was the mountain rising up in the distance. Even though it wasn't totally unexpected to find the laundry in the garage, I have to admit that even I was surprised at exactly how much there was waiting for me or how long it had been waiting.

There was one box that had been sealed up and sent through the Postal Service from my parents' house to the house we rented in North Carolina when I was pregnant with Scooter and The Hubster was still on active duty. Scooter will be 18 this summer. The box was still sealed with the original tape.

Let's just say that life became exceptionally overwhelming during that pregnancy and didn't really slow down until recently. Truth be told, I'm not sure that life really slowed down as much as I have been able to speed up. I'll eventually blog about what life was like in more detail, but all that talk about speeding up? Yeah. It's it's a minute by minute thing. In fact, at this moment, I'm slowing down considerably and am having a rough time staying awake. 

On that note, I think I'll go crawl into bed, so I'll be ready to go in the morning. And while I know we won't finish everything in there tomorrow, I'm really looking forward to making an even bigger dent in the mess and getting started on the laundry on Monday that Mom has so graciously sorted for me. 

I'm sure I'll be dreaming of a winning game plan all night long.