Wednesday, February 28, 2007

The Saga of Baby Toby

----->Click here to start at the beginning.
Start today's chapter here at Tales From the Womb.
Toby Day 3

Dr. Murtha and Dr. Warrenton had just left the room. It had started raining outside, or should I saying pouring and it looked like we were in for quite the storm. With that, a large flash of lighting struck followed by the roar of thunder. The rain began to come down so hard, that Tom had to turn the television volume up to hear the remainder of the hockey game.

I knew Tom was pissed and I was just waiting for him to blow up. Tom’s always been a hot head since I met him in college and first saw him playing hockey on the team. That’s how we met. My college roommate was dating his roommate, who was a pre-med student at the time. Both played hockey and it wasn’t long before Tom and I started dating as well. Tom was a rugged man, tall, dark and handsome, as clich√© as it is, but was an outstanding student. I was impressed with his brains as much as his brawn. His temper however, was another thing all together. It was the brains and the temper that made you want to be on his side, whenever you walked into a room, regardless of the situation. On the flip side, he was extremely charming, which is why I fell in love with him. He was a natural born salesman and never in all of the years have I know him, has he missed a sales quota. He can be charming and then turn up the heat to close the deal. He was also very protective of me.

The commercial came on and he slowly got up. As he turned around, he blurted out, “I told you not to see that female doctor!” he said. I could see the redness coming up from his neck and knew he was livid. “Tom”, I said calmly, “It wasn’t my fault.” ”Well, none of this would have happened if you had let Brent take care of you, as I suggested!” “But you wanted to see Dr. Stork.” “Tom, it’s Dr. Stern, Dr. Mary Stern.” I said. It was just Tom’s way of being obnoxious; he’s called her Dr. Stork ever since I got pregnant and insisted on going to her. Tom’s friend Brent, is an OB-Gyn. When I first got pregnant, Tom wanted me to see Brent; after all, he and Brent went back a long way, all the way back to the first grade. Somehow, it seemed too weird for me to have Brent as my Ob-Gyn and I chose Dr. Mary Stern instead. She was an older woman, old enough to be my mother’s age and I instantly felt more comfortable with her. She was, after all, a woman with several children of her own, as well as a career long medical practice. I don’t think I could have made a better choice. Tom was mad at first, and then seemed to be o.k. with it over time. He always referred to her as Dr. Stork though, just to get me going. It was everything I could do not to laugh every time I saw her, just remembering how Tom would say her name, “Dr. Stork.”

“But, Tom, it was an accident!” I said. “You heard the Dr. Murtha.” “Dr. Warrenton, saved Toby’s life! I am upset too, but you have to understand, it was an accident…” My voice trailed off or rather was overshadowed by the storm raging outside. It probably didn’t matter anyway because Tom wasn’t listening at all. He was right, I was wrong, and that’s that. Nothing would ever change his mind. Tom immediately started text messaging Brent. I knew it was him because they always text messaged each other during the game, like a bunch of kids, especially when they couldn’t see the game in person.

“You had better not tell Brent about this, I mentioned.” Tom stormed out of the room. I knew he would ignore me and tell Brent the entire story. He was probably going to call him now and fill him in on every last detail. We didn’t know if any of these things would happen to Toby for sure, but Tom, wasn’t about to listen to reason. This was after all, “his” boy and no boy of his was not going to wield a hockey stick. Not now, not ever. I dreaded the thought of an Occupational Therapist working with us. They were certainly going to have their work cut out for them.

No sooner than Tom left, my mother came in. I wondered if she heard us arguing; I had hoped that she didn’t. I didn’t want to get into the whole Brent deal now. I barely had time to absorb this when Tom flew off the handle. Just when I needed Tom most, he wasn’t there for me. Instead, he’s off filling Brent in on every last detail.

My mother informed me that she had ordered the birth announcement for me, or rather, e-mailed Toby’s name and details for the birth announcement. They would be here by the end of the week. I wanted to show her the pictures I had of Toby, but knew she’d ask me if I posted them on the blog so the rest of the family could see them. Suddenly, I didn’t want to post them at all. I couldn’t tell anyone what happened to Toby. I just couldn’t.

“So where are the pictures of Toby?” she asked. “Everyone’s been waiting for them. I told them you were going to send them to me this afternoon, right after you got off the phone with me.” “Sorry, Mom. I didn’t get a chance to send them to you yet.” I reached for my camera phone and showed her the pictures. “He’s so handsome!” she beamed. “He looks just like Tom!” I knew she was thrilled and I was too. Who wouldn’t want their baby to look just like Tom? I know I did.

“Well, where is little Toby? I want to see him.” “I think it’s time he met his Grandma!” My eyes welled up and I told her everything the doctors just told me. “Oh, honey, I am so sorry. How did Tom take the news?" "He didn’t, Mom. He blew a gasket and then left.” I could see she was putting it all together now. "So that’s who he was talking to when I saw him." She accidently ran into him in the lounge down the hall and tried to talk to him when she saw he was on the phone.

With that, Tom walked into the room. He seemed calmer than when he left, almost smug. Something had changed, but I didn’t know what. With that, my Mother left to see Toby and Tom and I were left together. It had stopped storming by now but was too dark for any rainbow.
Toby Day 4
Tom spoke to Brent yesterday and had told him what was going on. Brent informed Tom that he had better get all of the information he could and to read through Toby’s medical records now, since it was going to be a tough road ahead if he planned on suing the hospital and the doctors. Dr. Stork, as Tom said, just secured millions for the new women’s pavilion at the hospital last spring. According to Brent, it was going to be an uphill battle if anyone was going to win a settlement against her. He suggested Tom see Philip Corboney, just for a consultation, to get his take on the matter.

Philip Corboney, Sr., was a premier malpractice attorney in the state, and was known to secure some of the largest malpractice settlements. He was the Corboney in Corboney and Dean and also considered one of the top lawyers in the state. If anyone was going to win this case, it would be him, but first we had to see if we even had a case.

Somehow, the blog didn’t seem important anymore. What should have been happiest time of my life, next to my wedding, had become an absolute nightmare. It was hard enough dealing with the fact that my baby wasn’t perfect, but Tom would never accept a disabled baby or a baby with any kind of handicap. It just wasn’t going to happen.

The therapist came in to help me walk down the hall. She said that if I was going to go home tomorrow that I needed to practice, one more time. My stomach hurt, both from the stitches and the turmoil and I wasn’t sure which was causing the most pain. As we walked down the hall, I asked if we could stop in the chapel. It would give me a chance to pray and also a chance to rest for a bit before I had to take the long way back to the room. As I entered the chapel, tears streamed down my face, as the thought of my poor Toby’s future, flashed before my eyes.
Tomorrow's finale will start at here at Tales From The Womb and end at my site.

Tuesday, February 27, 2007

The Saga of Baby Toby

The next chapter starts here. The following chapter will begin at Ex Utero and then will be followed by two posts on my site. We'll provide the links when we post it.
Regarding "The Saga of Baby Toby", this story is entirely fiction and created for entertainment purposes only.

Monday, February 26, 2007

----> Click here to go to the beginning…

Start here today.

Toby's Blog Day 2-Part I

Well, I thought for a moment things were looking up today. First, I got the good news that Toby was doing so well that they were going to take his tube out. I was glad. They said that once they did that and he was stable, I could see him. Finally!!! I’ve waited nine months and then some for this moment. They said they would bring him by shortly and the neonatalogist would stop by to answer any of my questions and to explain what happened last night.

In the meantime, Tom called and said his flight was delayed. I gave him the good news that Toby was coming off the ventilator so he wouldn’t worry. All I have to do now, is to order the birth announcement cards. Fortunately, my mother is coming by today and she can place the order for me. I have the perfect ones all picked out; all they need are Toby’s stats. I’ll post it on the blog when they arrive!

I was so excited when they left the room. I was waiting and waiting to see Toby when Dr. M came in. He’s Toby’s neonatalogist. Apparently, when they when to extubate Toby, he started seizing and they had to give him some Phenobarbital to stop the seizures. Before they could do that, they had to put the tube back in him. He’s not even one day old yet and he’s already had a rough life. It’s just not fair. This is not what I imagined it would be like.

He said they’ll probably do a few more tests: an EEG, C.T. scan and possibly an MRI. I don’t know for sure yet. I asked if he was going to be o.k. and he said that they need to take it one day at a time for now. He said they were doing everything they could for him. I just don’t feel good about this. I really wish Tom were here. It’s so hard to concentrate on what they are telling me. I am on this painkiller and I can hear them but I feel like I keep asking the same questions again and again. I hope I am making sense to you guys. I can’t wait until my Mom gets here. Maybe she can see the baby and tell me all about him.

Please pray for Toby. I don’t feel very good about this.

Toby's Blog Day 2-Part II

Tom arrived at the hospital late this afternoon, several hours after Dr. M left. I was never so glad to see him, although I have to admit, I looked a little worse for the wear. It didn’t seem to matter much, because as soon as I saw his face, I immediately felt better. He arrived with the most beautiful roses I have ever seen. They were a silvery lavender rose, edged in crimson. He said it was the closest thing to a “blue” rose he could find. He was sweet like that, always knowing the right thing to say. He’s known for a long time that my two favorite things in the world are flowers and children, specifically little boys. I always told him how I’d love to have some little boys grow up just like him.

He gave me two dozen roses and said that somehow, after all I have been through, one dozen wasn’t enough. He made me laugh until my throat hurt so bad, like a steel Wusthof knife had just gone through my throat. I forgot for a moment, just how sore it was.

I regained my composure and filled him in on the bad news, that Toby had taken a turn for the worse. He had been under the impression, he was coming off the ventilator and we were out of woods so to speak. I filled him in on what Dr. M had told me just a few hours earlier. I began to cry. Tom hugged me and told me to read the card. The card was even better. I have long collected botanical prints, specifically roses, as well as being a member of our local rose society. He thinks it’s silly and yet, he never ceases to amaze me with some of the beautiful roses he sends me.

The card was attached to a gift, which he insisted that I open first, prior to reading the card. It looked to be a picture frame of sort, but of course, I needed to be surprised. And surprised I was.

He had printed off the Rose fact sheet for this rose, called Angel Face, which was the name of the roses he had just given me. On top of the picture was a note. It read,

“My Dearest Wife,

When I asked the nurses what our son looked like, they told me he had the face of an angel. I thought it was only appropriate to find a rose that fit Toby. I settled on this rose, “Angel Face” in honor of our new son. I thought it was especially appropriate, when I read the comments. It said, “Vigorous; good disease resistance; upright, bushy habit; free flowering; good cut flower; needs full sun; leathery, shiny dark green leaves.” I thought this captured his essence. Vigorous-He was definitely a fighter. Disease Resistance-He’s pulling through this stuff. Upright-Almost two feet tall. Bushy habit-At 11 pounds, I thought this fit! Needs full sun-With a loving mother like you, he will surely blossom.



I knew then that we had turned the corner.
The Saga of Baby Toby starts at Tales From the Womb.

Toby's Blog-Day 1

Well, big Toby finally arrived last night or should I say early this morning. I should probably say a big “thank you” to all of my blogging buddies who helped me get through this pregnancy and more importantly these last two weeks. I am still not sure this was a great idea, waiting another two weeks to deliver when he was already over 4000 grams at 40 weeks. I have checked with a few of my friends and none of their docs would have done this. Since this is my first one, I guess I have to trust that my obstetrician knew what she was doing, after all, she’s been doing this for years. I think I would have exploded if she would have waited any longer. So thanks again, for listening to me these last two weeks. I don’t know what women did before they could blog…sit around playing bunco or what?

Toby arrived somewhat unexpectedly this morning at 2:45 a.m., a whopping 22 inches weighing 11 pounds 3 ounces. They say he is a beautiful baby. He has a full head of black hair and blue eyes. They tell me that he is cute as button.

It has been a long night and thoroughly unexpected. I had contractions earlier in the evening and was certain I’d be delivering this baby last night. The contractions were really painful; I don’t know how you ladies do it. I was practically screaming at times and they started to get closer and closer. I thought for sure I would go in however they stopped quite abruptly and then I assumed they’d start up again but nothing happened. Finally, I got tired and went to bed. Not before putting my rollers in my hair, just in case! I tried to sleep but I just couldn’t. I kept getting the feeling that something wasn’t quite right and then I’d worry about if I’d have enough time to drive to the hospital by myself. Usually, my baby moves around quite a bit and doesn’t like it when I sleep on my right side but tonight it wasn’t moving. Finally, I paged the doc and told him what had happened and he told me to get to the ER right away. He nearly scared me to death!

I tried to call my husband Tom but there wasn’t any time. Of all the times for him to be on a business trip! I told him not to leave town but he said he couldn’t miss this conference! I really could have used his help.

Once I got to the hospital, they hooked up the heart rate monitor. They seemed to be having a lot of problems getting his heart rate. That scared me. Every time I asked them about it, they talked around it and I didn’t feel really good about that. They told me it can be unstable at times but then everything was fine a little later. I guess it was o.k.

I was a little scared because it all went so fast. The next thing I know, they rushed over to me and told me they had to put me to sleep right away since they lost Toby’s heart rate and they needed to get him out right away. I wanted to cry. I was so excited about giving birth and now this. It was so upsetting and I was really frightened. The last thing I wanted to do was to get knocked out, but before I could say anything, they pressed the mask over my face and yelled at me to breathe in. I certainly didn’t feel comfortable. This was nothing like the hospital tour they gave me of the birthing suites, that’s for sure! I don’t remember much else other than I was really, really cold, freezing to death actually, when I finally woke up. And my throat was so sore from the tube in my throat. All I wanted was to see my baby. I was afraid he had died.

As I started to wake up, I overheard the nurses talking. I couldn’t say anything because I still had the tube down my throat and I couldn’t see anything either. I was still pretty groggy. All I could hear was them saying that he was totally blue and that they rushed him out of the delivery room. Then someone made some noise and I couldn’t quite hear what she said; I admit I was a little panicked because I thought he might have died! I wanted to cry but I knew if I did my contact lenses would come out and they told me I wasn’t supposed to wear them. I tried to blink a lot so my contacts wouldn’t fall out but the tears kept welling up in my eyes and running out the sides. Everything happened so fast last night that I didn’t have time to take them out.

One of the nurses noticed that I was coming to and that I was crying and came over to talk to me. I think she thought I was crying because my throat was sore; I don’t think she realized that I overheard them. She grabbed my hand and although I couldn’t say anything, she filled me in. She said that when Toby came out, he was totally blue but the neonatalogist had taken good care of him and he was doing much better. She said they had to put a breathing tube into him as well. She said that he’d have to be on a ventilator for a day or two and that they were giving him some medications to help his blood pressure but, other than that, things should be fine. I was so relieved he hadn’t died but then when I heard about the ventilator, I wasn’t sure if things were really going to be o.k. or if they were just telling me that. I guess I just have to take their word that things are going to be o.k. The nurse told me that Tom called; they told him we had a boy and what happened. They said he was so excited. He had really wanted a boy! As a matter of fact, he was the one who picked the name Toby. He insisted on it. He never said why, but I looked up the name and it means, “Gift of God” so I thought it fit nicely. We agreed some time ago that if it was a boy, we’d name him Toby but if it was a girl, well, we just weren’t sure. Anyway, he should be here later today. I really need him!

I really can’t wait to see my baby. It’s upsetting that they haven’t brought him to see me by now. I am going to ask them if I can go see him soon. I’ll post a picture as soon as I can and keep you updated. If you don’t see any updates on the blog, just understand that I’ll fill you in when I can. I can’t wait until I can walk again; my stomach is really sore from the c-section. I never imagined it would hurt this bad. I keep asking about breastfeeding him but with the breathing tube I don’t suppose he can really do it right now. I was really looking forward to it.


You can read the next chapter on Tuesday here.

Saturday, February 24, 2007

The Saga of Baby Toby...

begins on Monday! It will start on ex utero's blog, Tales From The Womb. You'll start there and then link to my blog. This blogger Mini-Series will start on Monday and run through Friday of next week.

Friday, February 23, 2007

Coming Soon-The Saga of Baby Toby!

I've teamed up with another physician blogger for an exciting Blogger Mini-Series called, "The Saga of Baby Toby". The series will run for one week and looks to be an exciting story about a newborn baby named Toby who has a problem around delivery that causes his medical issues. Find out what happened, who did it and what's next! What makes this story interesting, is that you will read the story from the physician/hospital side and from the mother, much like it might happen in real life. You'll get both perspectives on the same event. We'll have links between the two sites so you can read the story as it unfolds. The mother's side will be told mostly from her blog. We had a lot of fun writing this story and hope you will enjoy it too.

See if you can find the physician who is writing the other side of the story. Look for the matching Baby Toby picture on their site.

We are almost finished writing this story. We wanted to have the entire story completed prior to running the series. I should be back to posting my regular stories about Dear Son next week.

Thank you for your patience.

Wednesday, February 21, 2007

Ooops! They Did It Together!

It looks like Dear Son and Britney Spears had the same kind of weekend. Dear Son came home from spending the weekend at his Dad's with this haircut. Hmmm...Could Dad have given Britney her haircut? Nope. She did it herself. I think Britney and Dear Son might want to look for a new stylist. Neither one looks very happy being bald.

Tuesday, February 20, 2007

Coming Soon...

Recently, a fellow physician blogger and I have paired up to write a new Blog Mini-Series! The Mini-Series will run for one week and should be fairly exciting. We are in the process of writing it now and are at the half way point. We need to complete the entire series prior to posting. You may not see much in the way of new posts from me, until this is complete, since I only have so much time. I can't tell you any more than that, since I am sworn to secrecy, but it's been a lot of fun. I wanted to let you know, so you understood why I have been slow to post.

On a different note, Dear Son received a hair cut this weekend, very similar to Britney Spears. I'll see if I can post some pictures in the interim.

Saturday, February 17, 2007

A Fishy Story

I was cleaning out the fish tank when it happened. The fish jumped out of the net and onto the carpet. Dear Son was sitting in his rocker watching the whole thing.

The fish were a gift to Dear Son for his ninth birthday, shortly after I divorced. I thought he might like a pet and settled on the fish. We had many outdoor pets, so to speak, the animals that came regularly to our bird feeder. We had Blackie, our red winged black bird that was a frequent visitor. He came to the feeder every morning before Dear Son went to school, then would sit on the top of his swing set in the backyard, every day while he was at school. Once Dear Son came home, he’d fly back over to the bird feeder, while Dear Son watched him from the base of our French door, as he lie on the carpet, his head on a pillow, with the cool summer breezes wafting over him and the sound of the aerator, lulling him to sleep. Of course, it didn’t hurt that our lot backed up to a pond, as the red winged black birds are water loving birds, but I called him Dear Son’s bird nonetheless. Then there were Donald and Dolly, our mallard ducks. They came back to our feeder year after year; even the neighbors called them our ducks, since they only fed at our feeder.

But the fish were our first “official” pets as a family. It was a simple fish tank, something I thought I could take care of. Apparently, I never mastered the filtering system very well because I found the fish tank to be a lot of work. We had several fish, all named of course, but the two favorites were Prince Charles and Princess Diana. They were named as such, because of the castle, that resided in the middle of our fish tank. The one fish, would always be outside the castle; I named her Princess Diana. The other fish, would always hide inside the castle, so I named him Prince Charles, because he was always hiding in there and didn’t want to come out.

Now the problem with the fish, came with cleaning the tank. I chose to remove the fish from the tank for a thorough cleaning. I know it’s not necessary but like I said, I just hadn’t mastered this filtering thing. I moved the first fish successfully from the tank when I attempted to remove the second one. The fish jumped high into the air, out of the net and landed on the carpet. Being squeamish as I am, I screamed at the top of my lungs. It was the kind of scream, that you’d expect when you were watching a horror film or saw someone committing a terrible crime. I even scared myself, it was so loud. I attempted several times to get the fish back into the tank, but the problem was that I would have to touch the fish and this was presenting itself as a major problem. There wasn’t any way that I was going to actually “touch” the fish. Dear Son thought this whole episode was hilarious and he proceeded to rock in his chair laughing as hard as he could until he was nearly crying from the laughter. Every time I thought I had the fish with the net, the fish would flop and I would scream. The louder I screamed, the funnier it was. Of course, I was talking all of the time trying to get the fish back into the tank which only added to his amusement. A curse word or two might have slipped out.

Soon the fish was back in the tank but ended up going into the castle. I later learned he died. Some time later, a second fish died after hiding in the castle. I decided I might want to rename the castle the “funeral parlor” since the fish were dying inside there.

Dear Son never really cared for the fish. I think the fish jumping out of the tank was the most fun he had. After these issues with the fish, I decided to get Dear Son a cat.

Somehow, it’s hard to imagine Dear Son had any disabilities that day. I wonder how the psychological tests measure that. Sometimes, labels don’t tell the whole story. And the whole story is often better than reading just the last page. And a whole lot more fun too.

Tuesday, February 13, 2007

The Day in the Sun

The school buses were lined up one after another, so many that I couldn’t even count. It looked like one giant yellow caterpillar against the hot black pavement as the buses meandered around the recreation center. I sat near the pool waiting to see if I could catch a glimpse of Dear Son getting off the bus but there were so many children, that I have to admit, even as his mother, I couldn’t distinguish him from the crowd. The children in the pool were splashing, making it difficult to hear as well. I waited, as child after child got off the bus in their wheelchair, so they could swim.

This was no ordinary day at the pool. This was summer school. Summer school, in this area, consists mainly of swimming every day, along with some other activities, all designed to keep up their skills that they worked on so hard during the school year, so they didn’t lose it for the twelve weeks they were off during the summer.

The short yellow buses were lined up as far as I could see. There were all kinds of wheelchairs for all kinds of kids. There were kids as young as three up through high school. The sight of all of these wheelchairs, made me tear up. Never have I seen so many disabled children, in one spot. I couldn’t help but think that life wasn’t fair for these kids and how they were all on the wrong side of outcomes. Those tiny percentages loomed large here.

The summer school program had many volunteers; college students majoring in special education, make up the bulk of them. There were some older aides as well, that help with the children.

I couldn’t help but think that children with severe disabilities and water don’t mix. After all, it’s difficult to manage these children normally, let alone when they are slippery and wet and can’t help you. But I didn’t have to help today. It was parent visitation day at the pool and I could just relax. Instead, Dear Son had three aides that would get him in the water and take care of him.

Dear Son never like swimming and it may be my fault. I don’t like water however my husband and I made the mistake of taking Dear Son into the hot tub on one of our weekend trips and he loved it. It wasn’t a bad thing, it was just that once he had a taste of that nice hot water, he wanted nothing to do with the cold swimming pool. His dislike for a cold swimming pool continued for many years. Every summer, they take the kids to the pool for summer school and every summer he’d shiver in the pool, his chest sunken in, his bony ribs making waves in his lily white skin and his baggy swimming trunks trying to find some meat on his body to hang onto. That was, until he met Mr. H.

Mr. H and Dear Son went together like peanut butter and jelly. He’d take Dear Son over to the deep area of the pool and let him float, while holding onto him. Dear Son would smile ear to ear, his face beaming in the sun, as if the sun were shining down on him, like a spotlight in the pool. Mr. H had a special spot in the pool, just for him and Dear Son. When he didn’t take Dear Son over to it right away, Dear Son would look at him, look at the spot and then give him a great big smile. It was great to see him so happy.

Soon the time was up in the pool. Mr. H and the two other male aides, lifted Dear Son out of the pool and into the wheelchair, taking him inside to get him dressed for the bus ride home.

I couldn’t help but think, as I saw the hundreds of children wheel out to their little buses, what it must have been like some forty years ago, for children like these. Many were placed into homes, away from the families they were born into, because they were severely disabled and it was too hard to care for them. As the little yellow school buses drove away, I couldn’t help but think of those children who were born in the wrong place and at the wrong time. I wonder if they ever had their day in the sun, with someone like Mr. H, who let them float the afternoon away or if they drowned their sorrows looking out the window at the other children playing in the swimming hole, if they even had a window to look out. I wonder too, if anyone visits them at the home, or if they just forgot about them after they admitted them, and went on about their normal lives. Sometimes, you don’t need to swim with the sharks to be eaten up by them.

Sunday, February 11, 2007

Dream Mom One Year Anniversary-Then and Now

Blame it on Fat Doctor! She got me started with this whole blogging thing. LOL! I started reading her site and really enjoyed what I read. I found it fascinating. From there, I started clicking on links to other blogs. Since I love children, I found my way over to Neonatal Doc’s site and started reading his as well. Due to my issues with Dear Son, I found myself commenting on so many of his posts, that I decided to start my own blog. I tried many different names, most using Dear Son’s real name however they were all taken. Finally, I chose Dream Mom. And the rest is well, history.

I started telling stories about my love for Dear Son and on occasion posts about other topics. However, most people responded mainly to stories I wrote about him, so that soon became my primary focus.

In reflecting on the last year, I thought I’d highlight some of the more memorable posts and highlight the last year in general.

My Personal Favorite Post: Once Is Not Enough This was a story I wrote about Dear Son saying his first word after not speaking for many years. Although he has no language, he has been able to say a few words over the years: "Hi", "Ma" and "I Love You". Only the "hi" is intelligible. Other favorites are in my side bar.

Most Popular: Dr. Rey, Hayley Rey and Me and Super Size She. It never ceases to amaze me with all of the searches for these two. I can't even count the number of hits I get for each of them after Dr. 90210 airs or after the documentary on Joanna Thomas, a female bodybuilder and the real Super Size She. Long before women's bodybuilding came about, I used to read about men's bodybuilding, back in the days prior to Muscle and Fitness magazine. When women's bodybuilding came about, I was very excited since I loved the sport. The photo above is me at age 25 in 1983 when women's bodybuilding was not was it is today. At the time above, I could bench press 165 pounds (one rep, free weights) and run a 5:31 mile. I worked out several hours a day, mostly cardio (running, aerobics, biking, racquetball) since that was my favorite as well as free weights. I assumed my children would be active as well. It wasn't until Dear Son came along, that I devoted all of my time to his issues. I never dreamed my muscles would be used to lift him instead of working out with him. Photo credits: Larry Agron, Women's Physique World Magazine.

MRSA Pneumonia Series: This was a four part series that I wrote last year after Dear Son suffered his first of two MRSA pneumonias last year. If there was a low point last year, this was it. I thought Dear Son would die on Mother's Day.

Part I-How It Began
Part II-The Rescue
Part III-A Mother's Day to Remember
Part IV-The Conclusion

The Graduate: After the MRSA pneumonia, Dear Son graduated from the 8th grade. He would go back in the hospital a short time later with a second MRSA pneumonia.

Blogburst Invitation: One of the highlights of the year was the invitation from Blogburst.

Most Controversial: The Ashley Treatment Series.
Highlight of the Year: Being on CNN. It was a chance to speak about something important to me, the care and treatment of severely disabled children.

A year ago, when I started blogging, I never would have predicted in my wildest dreams what a fun this year this would be. I loved writing stories about Dear Son and even more, I have enjoyed all of your wonderful comments as well as all of your support. Your support and prayers during Dear Son’s MRSA pneumonia was the highlight of my day. When those days were dark, I could always log on and know that you were praying for him. That meant the world to me.
After a while, I became tired and exhausted from caring for Dear Son, working, and then trying to write new posts. So I quit. For a few weeks. Then came the invitation to join Blogburst. I accepted however it required that I start writing again. As soon as I began to lag again, the Ashley Treatment came up and I decided to write about that. For the most part, the purpose of my blog is to have fun. I hate controversy and I hate conflict. That’s the reason I write mostly about Dear Son. But the Ashley Treatment changed my life and changed the way I view the world. From there, came the CNN interview.
All the while, Dear Son continued to stay out of the hospital. I am not sure how many more stories I have about Dear Son, so I may need to expand a bit and talk about some other things. Dear Son's abilities are quite limited and there are only so many stories I can write about him before I start repeating myself. I know that my postings can sometimes be a bit sporadic at times however over the last three months, I am not longer getting any breaks on the weekend, like I used too, which limits my sleep. I haven't had a entire night's sleep, without getting up to take care of Dear Son, in over two months, so it's a bit difficult to be creative during these times. I am also in the midst of starting a new business which is taking up a lot of my spare time as well as continuing to work part time and care for Dear Son. I appreciate your patience.
But most of all, I need to thank you for all of your support of Dear Son and all of your wonderful comments. I am fortunate to have met so many wonderful people.
Thanks for a great year.

Wednesday, February 07, 2007

The Secret

The Special Education Coordinator had several conversations with me regarding Dear Son’s next placement. At issue, was finding the “appropriate” school for him. At that time, Dear Son’s primary disability was listed as physical since they didn’t make statements with regards to their mental disabilities until the children are a little older. I had asked to see the school they recommended as well as two classrooms (schools) above his level and two schools (classrooms) with lower functioning children than Dear Son so I could understand the difference. Then, I could see for myself as well as check out the classrooms to see how Dear Son would fit in. I was very new to the whole Individual Education Plan (IEP) and Multi-Disciplinary Conferences (MDC) that were required to place Special Needs children, so this exercise would be a good learning experience. Also, as Dear Son’s mother, I needed to be certain that this indeed was the right place for him. While I certainly didn’t have the expertise of the professionals, I did know my own Dear Son and I wasn’t about to take their recommendation without checking it out for myself.

I had toured a few classrooms when we met at a school for extremely lower functioning children. I thought I had seen it all until I got here. From the outside, there was nothing different about the school but inside, would be a different story. I had heard some things about this school, some of them negative, but inside, well, I wasn’t sure if I could handle it.

Up to this point, I had been somewhat sheltered, I would say. Dear Son was quite young and I had about zero experience with mentally and/or physically disabled children. In fact, my experience with Dear Son was about it. I had tried reading some of the books or “recommended” reading from the Easter Seals however I quickly learned that they scared me more than they helped. I abandoned that and figured I would just take things as they came up.

I walked into the school and they took me to a large gymnasium of sorts where there were umpteen kids. The children were doing all kinds of things, none of them structured, from what I could gather. The children were all severely mentally and/or physically disabled. It was the scariest group of children I have ever seen. To this day, I have never seen a group that frightened me as much as they did. I looked around and the whole room was extremely active. I had a hard time figuring out just where I should look since there were so many kids moving around. The children who were severely mentally disabled seemed to be mobile; some were in wheelchairs but most, from what I can recall, were ambulatory. I saw one or two standing on their heads and other children doing all kinds of things that just made you shudder. Most of them were not safe. I was worried some of them were going to get hurt but I didn’t know where to look or what to say. All I knew was that Dear Son didn’t belong here and I wanted to get out now. Suddenly, I felt a hand in my hand. I went to pull away quickly when I looked down and saw a pretty little girl there. She had grabbed my hand to hold it. I stopped pulling away and held her hand.

She began talking to me and soon I felt at ease. I don’t recall that she was mentally delayed although I am sure she had to be if she was there. The school seemed very short staffed and I was thankful that this was not an appropriate placement for Dear Son. I thought about this little girl and how she probably saw my fear when I came into the room. She read my face and immediately came over to me to hold my hand. She was a sweet little thing and I was soon embarrassed by my reaction.

It was just one of the things I learned about that year and over the years. There isn’t anything to be afraid of when people are mentally or physically disabled, it’s just different. I think back to my own pregnancy with Dear Son and when they did the prenatal testing for mental retardation. The test came out normal. I remember being relieved that I didn’t have to worry about that, as if that would be the worst thing that would ever happen to me. That’s how pregnant women think. That’s what we are taught to think.

I remember too going to Dear Son’s school these last few years. I met the kids in his classroom and used to talk to them when I came to pick him up for a medical appointment. They weren’t scary kids. All had varying degrees of mental disabilities and some of them had physical disabilities as well. They were friendly kids, they were nice kids, they were kids you’d be proud to know. I remember sitting in the front row at Dear Son’s eighth grade graduation when his classmate came down the front stairs after receiving his diploma. One of the high school kids behind me said to another adult, “I love that kid”.

I have learned over the years that children with mental and physical disabilities are not scary people. They aren’t too be feared. They are just kids. They are loving. They are happy. They are sweet. I never in a million years dreamed I would fall in love with them, but I did.

Society makes them scary. We perform all of these prenatal tests and when they aren’t perfect, we think our lives are over. Nobody bothers to tell us that it’s o.k., it just might be different.

To an outsider, it may appear that we got the raw end of the deal, that our lives as mothers are somehow shortchanged because we have children with disabilities. That would not be true. Motherhood has not been any less rewarding for me because I have a son that is severely disabled. It might even be more rewarding but I don’t know since this is the only life that I have.

I do know this though. We think that if our children are not born totally normal that their lives aren’t worth it. But the secret is, that it doesn’t matter in the end. Motherhood isn’t any less rewarding if your child is disabled. That doesn’t mean I wouldn’t want Dear Son’s life easier or that I would like my life to be easier at times. It doesn’t mean I wouldn’t want my child to be normal. It just means that life isn’t over when your children aren’t perfect. I am lucky I learned “the secret”.

Saturday, February 03, 2007

Super Bowl Sunday-Then and Now

Super Bowl Sunday holds a special place in my heart having nothing to do with football. Many years ago, when Dear Son was only ten weeks old, I had dressed him in the sweetest little football outfit. We had been invited over to my brother’s house to watch the Super Bowl. Being avid football fans, we couldn’t wait. Prior to church service, Dear Son began to have some odd movements (which I later learned were seizures) and I ended up taking him to the Emergency Room and never saw the Super Bowl that day. It was the beginning of our entry into the wild world of healthcare.

You can read all about it in this post that I wrote some time ago called, “Don’t Hate Me Because I am Beautiful”.

As I root for our hometown team today, I will think back to his first Super Bowl, in January of 1992. It was then that we were eventually referred to the Big Academic Medical Center, and Dear Son spent three weeks there. The bill for those three weeks was $45,000. It was there that we met our current pediatric neurologist, who still takes care of Dear Son today. It it weren’t for him, Dear Son wouldn’t be here today.

So today, I’ll dress Dear Son up, in orange and navy, and we’ll watch the game from our living room. And when the half time show comes on, I’ll say a small prayer of thanks, for my own Dear Son, his doctor and all of the little ones who won’t make it to the game today. May they see the Super Bowl for many years to come.

Note: Picture on the left is Dear Son's 1992 football outfit, when he was just ten weeks old. Picture on the right, is Dear Son's last AFO's from a few years back, when he could still stand. It bears our hometown football team, pun intended.

A Mother’s Dream

I had just come home and saw Dear Son. He was lying on a pillow in his tent, watching t.v., happy to see me. I sat him up and lifted his 150 pound frame into his rocker. His rocker, is one that I bought used, not because I couldn’t afford a rocker but rather, for it’s absolutely perfect size. Perfect for Dear Son, who is now fifteen years old. I had searched all over to find one but it wasn’t until I went to an antique show in a far away suburb, that I found this particular rocker and knew it would work. At fifteen, an adult rocker is a bit too tall and deep for him and a child’s rocker is too small. This particular rocker is perfect because it is exactly the right height from the floor to his knees to allow his feet to touch the ground and for him to support himself. The back of the rocker is tall, full of round vertical dowels, tall enough to support the back of his head, since he can not support it on his own. The back is also bowed and wide, allowing plenty of room to support him if he starts to slouch.

He can sit in the rocker for a few minutes at a time. Once he’s exhausted, he’ll slide right out of the rocker and onto the floor, most likely hitting his head since he can’t stop himself once his body gives out. I know this, because it happened once. Once he’s tired, you have exactly one second, before this happens so you have to pay attention. His arms and hands have never worked, so when he falls, he’ll fall right on his head because he has no reflexes to put his hands/arms out in front of him when he falls. You have to sit right next to him when he rocks and as soon as he slumps to one side, you have to remove him from the rocker and put him in the wheelchair before he falls. Rocking in the rocker, is his favorite part of the day, so I always make sure to let him rock, even if only briefly, while sitting next to him in the chair.

He was sitting in his rocker gazing into my eyes as I talked to him. He had a big smile on his face and listened intently as I asked him about his day. I had a Respite sitter for a few hours so I could run some errands. I asked him how it was and told him about my day. Sometimes, I’ll hold his hand while I talk to him but most of the time, I just look him in the eye. At some point, it will seem like he wants to say something. I tell him that I wished that he could talk to me. We fantasize about what it would be like if he could talk, just for one day. I tell him that if he could talk for one day, that I wouldn’t say a word. I would let him tell me everything that happened that day and all about what happens at school. I’ll often dream up all of the things I’d like to hear him talk about and he’ll give me this great big smile. It’s a fantasy all right, but one he loves to hear. At other times, he’ll be lying in his bed and I’ll sit in the chair next to his bed talking to him and I’ll mention how great it would be if he could talk to me for one day. He’ll always smile and sometimes kiss my hand, letting me know that it’s a great idea or that I am saying exactly what he’s thinking. Then he’ll drift off to sleep.

Once he’s sleeping, my mind will wander off and I wonder what it would be like, to live in this world and never have any language. Never be able to talk, ever. I wonder how different the world would appear to me when I would have no voice, when all I could do was listen. I wonder what type of person I would be. Would I be the same? I wonder too, if you can never speak, how you feel good. It’s exciting when you get to tell someone about something good that has happened in your life. Or, it’s great to have a friend to confide in when things aren’t going very well. But what do you do when you never get to speak? About anything. What would it be like to go out to a restaurant and not say a word. Or go to a movie and not talk about it once it’s over.

I think about Dear Son sometimes when he goes to school. What happens when they do something at school that he did at home and he wants to tell them a story? Only, there is no story to tell because he can’t talk. He can only listen. It must be frustrating too.

I look over at Dear Son again and watch him sleep. He coughs and his cough sounds deeper now. I wonder if his voice has changed and how it might sound if he could talk. I wonder too if he dreams of the day when the children without any voices can speak and the rest of the world is silent for a day, and listens. I kiss his head and leave the room. It’s silent now. As it always is. Some mothers dream of the part of their day when it’s quiet, when their children aren’t talking and they have a few minutes to themselves. I wish for the day, when it’s no longer silent, and the only voice I hear, is that of Dear Son.
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