Christmas 2007

It's been a long week but I finally have a monitor and a new keyboard (more about that at the end.) Dear Son and I had a wonderful Christmas. Here are some pictures of our apartment.

This is our living room. I especially enjoy it at night when all of the candles in the sconces are lit.
This is one of my favorite pictures of Dear Son as a little boy sitting by our Christmas tree trying to get the lights off the tree. Wiggles seems to like it too.

This is my new Christmas tree this year. I purchased a 7 foot "slim" tree. It fits much better than the full size one I had last year and is a lot easier. I used the same decorations as last year though. I have collected many of these ornaments over the years. My favorite ones are the blown glass ones. When I lived in my house, I had a maple staircase. I used to drape fresh garland and a gold and silver chiffon type ribbon through the lighted garland and hang all of my glass and crystal ornaments on the garland. The lights would shine through the glass and was quite beautiful.

This is our dining room. Dear Son loves to sit near the table in his rocking chair, lean his head on the table and listen to his Christmas music boxes.
This is the armoire in my dining room. I used to have the armoire in my living room to hide the t.v. however when I moved to my apartment, I ended up using the armoire as a pantry since they I don't have one.

This is Dear Son sitting in his new rocker in his red/white shorts and hat. I bought him this Christmas hat and he loved wearing it. This was Christmas Eve. If you look closely, you can see the sling for the Hoyer Lift that he's sitting on. If you look at the top of the rocker, you can see where the sling hooks fit over the top keeping the sling in place while he sits. This makes it easier to get him out of the rocker since the sling no longer falls behind him when he's sitting.

While Dear Son loved to wear his Santa hat, our cat Wiggles, not so much. When Dear Son gets tired and starts to fall over in the rocker, I set him in the upholstered chair. While he was sitting there, the cat came and sat near him. I decided to put the Santa hat on the cat and take a picture of both of them. Dear Son was laughing however I couldn't seem to get one of him smiling. I was happy just to get a picture of both of them in their Santa hats.

We celebrated Christmas with my family the Sunday before Christmas Eve. On Christmas Day, I started Dear Son's feeding pump at five a.m. and allowed him to open one of his presents (actually I wrap them and open them up since he can't do it). I got him a carousel and he enjoyed listening to it while he got his Pedia Sure via the g tube. Our cat got some cool cat toys from Santa and I gave them to him at that time too. He loved batting his new toys around the bedroom and it made Dear Son laugh. Dear Son made me this present at school. The school sends home a present from him to me and he is always very proud of that. I told him we had to wait until Christmas to open it. After he got his carousel and the cat got his present, I opened this gift from him. We decided to hang it on his IV pole while he ate his breakfast. He was thrilled. WE opened the rest of the gifts after he got up. I got him mostly clothes (shirts, pj pants, pants and a new down winter coat). Dear Son is such a happy kid. He wakes up with a smile every day and Christmas morning was no different.

His absolute favorite gift was this iHOME iPOD charger that plays his iPOD. Prior to getting this, he'd listen to his music on the iPOD headphones however since he needs to lie on his side (he'll choke on his saliva if he lies on his back), the headphones would get drool on them and then malfunction. In addition, it just wasn't comfortable. With this, he can listen to his music while he eats via the g tube. Since it typically takes almost three hours to get his breakfast and dinner, it's nice to have some music to listen to while that is transpiring. His eyes light up every time he goes in his room and sees it on his nightstand. He just loves listening to his music.

This is my favorite gift although you can't really see it well in this picture. It's an illuminated keyboard by Saitek. The keys light up in one of three colors: blue, red or purple. The purple looks more like pink to me. Not only do the letters light up, but the keys are backlit and the sides of the keyboard light up as well. This is great because I frequently type in the dark (after Dear Son goes to bed) and I can be on the internet and not have to turn a light on. The reviews said the keyboard isn't bright enough however I have not found that to be the case. As you can also tell, my cat likes to sit with me while I am on the internet (maybe he likes looking at Poppy Q or Miss Daisy in her modeling outfits).

On a different note, Dear Son has been having some good and bad days. Prior to Christmas, he was choking severely on his saliva. He seemed to do a little bit better on Christmas Eve and Christmas Day however yesterday he was unable to sit up in his rocker at all. He kept falling over and seemed to be having a lot more seizures. He was up most of the night last night and has been up a lot this week. I have this weekend off so his Dad was up a lot with him. I was able to sleep in today and then go out this evening for dinner with my friends. All in all, a wonderful holiday.

Merry Christmas

Sorry I haven't posted in a while. We had a winter storm on Saturday night and the high winds took out our power for 6.5 hours; more importantly, my pc monitor blew so I haven't had any pc access since then. I am going to try and get out and get a new monitor this weekend but it's difficult since I can't leave the house with Dear Son since it's too hard. (I am on a relative's pc now.)

I have several pictures to post and will try to get to them this weekend.

Wishing you all a Merry Christmas. Dear Son had a wonderful holiday and I'll tell you about it when I can.

Thank you.

Santa Wiggles

Since this week is so busy and I haven't had time to write, I thought I'd share some photos instead.

Here are pictures of our cat in his new Santa hat. I know I shouldn't put one on him however I had a hard time resisting it in the store. He did not like it very much but did allow me to take a few pictures before I took it off. These will be the last cat pictures for a while.

Climbing Trees

Dear Son gets a big kick out of our cat Wiggles. Wiggles likes to go into our tree and pretend he's an ornament. Sometimes, he likes to go in there and sit at the top of the tree to watch the animals outside, like our ducks, who come to the feeder, even in the snow. They used to fly south for the winter but not anymore.

Going into the tree.

Pretending he's an ornament.

Exiting the tree.

Ducks in the snow.

I am off to go Christmas shopping today. I bought a new Mr. Christmas carousel for Dear Son on Friday, along with a new 7 foot slim Christmas tree for our house. I'll try to post some pictures of the new tree this week (the photos above are last year's tree). I hope to get Dear Son some new clothes today.

2007 Christmas Wish List

It's hard to believe sixteen years have passed since this first Christmas in 1991 with Dear Son. As a follow up to last year's post, "Best Toys and Gifts for Special Needs Children", I thought I'd share our wish list for Christmas this year as well as follow up on a few items from last year.

Wooden Rocking Chair-This is a picture of the rocking chair I bought for Dear Son's birthday. When he was younger, I only purchased the solid wooden rockers, as I mentioned last year, becaue they are lighter and easier for him to maneuver. I purchased this rocker at the Cracker Barrel for $129.99 (I didn't eat there, just purchased the rocker.). It is a nice sturdy rocker with a tall back that supports Dear Son's head and also looks nice enough to sit in my living room/dining room. He loves this rocker. I found this rocker to be very well made and the rush back provides firm support for Dear Son.

Homedics iSound Spa Max-This is essentially an iPOD docking station that charges the iPOD, has a radio, dual alarm, remote control and nature sounds. It also projects the time on the ceiling. Currently, Dear Son listens to his music on our iPOD however because he spends a lot of time lying down, his saliva frequently rolls out of his mouth and gets caught on the earbuds and then they don't work very well. I've tried other headsets which are larger but aren't as comfortable lying down. I decided that if he had this on his nightstand, he could listen to his country music and fall asleep, as well as listen to our local radio station that plays Christmas music. I wanted a remote control so I could shut the device off once he falls asleep and not disturb him by going over to the nightstand to do it. This gift was my idea however Dad checked out a few of these and decided to buy him this one.


Mr. Christmas Symphony Santa Surprise-I purchased this for Dear Son last year and he is still crazy about it this year. As a matter of fact, I can't keep enough "C" batteries in the house. He listens to this every day after school and on weekends. I usually set a towel on the table so he is more comfortable but I was trying to take a Christmas picture and he got distracted as soon as he saw this. He actually prefers this over television, the radio, his iPOD or anything else. I just wish that Mr. Christmas would have made an electrical cord so I could plug it into the wall and not have to buy as many batteries. Once I ran out of batteries, I had to pull out his all time favorite Christmas music box which was a Mr. Christmas Twas the Night Before Christmas House. It's a Christmas house where each window of the house lights up as the story is narrated. They don't sell them anymore and ours is on it's last leg since the power cord is not providing enough power any longer.
Clothes-It's not glamorous however as you can see from this picture, Dear Son has grown a lot this year and desperately needs more clothes. I purchased this shirt for him recently and it was a men's large and fit just fine. I will probably buy him pants and shirts for school and perhaps a down jacket for those really cold days. His current one is getting tight on him.

Wheelchair Van-As much as I have avoided the dreaded "van" over the years, I would give anything to have a wheelchair accessible van that opens to the back so I could just wheel his chair in. If I had one, we could go a lot more places and it would be a lot easier to take him places. Currently, I am putting him in the front seat of my car and his legs are nearly touching the dashboard.

Diapers-They aren't glamourous but gosh, I would be thrilled to get a case of them. Dear Son goes through a lot of diapers, bed pads and wipes on a regular basis. The ones I'd like are from HDIS (1-800-2MY-HOME). They are the Tranquility All Through The Night Briefs and run around $120 for a case of 96. That would last him about 13 days so he need not quite three cases of these a month.

And the number one fantasy item we'd love to have this year, is the "Pleo." I saw it on Good Morning America one morning and Diane Sawyer was playing with it. Of course, they didn't make it easy since she never once mentioned the name. Amazon.com describes it as,

"With the Senario 22208 Pleo A Ugobe Life Form, you can expand your family with a pet from prehistoric times. The Pleo is a one-week-old dinosaur that will quickly grow to become one of the most fun and exciting members of your family. This amazing robotic marvel not only moves organically, explores its environment on its own, and interacts with you, but it also expresses emotions based on its life experiences."

Essentially, it's a dinosaur that acts like a pet. It comes up and cuddles with you and plays with you much like a pet. At $349.99, it's out of my price range this year. This would be the perfect toy for Dear Son since the pet comes to him as opposed to him trying to activate it. I think it would work but I don't know until I see it in person.

I wish I could ask Dear Son what he would like. I know that many of these things aren't very exciting but the truth of the matter is that these are the things we need the most. Either way, we'll still have a wonderful holiday because we will be together.

Fish Hugs

The fish had been hovering for weeks at the top of the fishbowl, weak, and breathing heavily. I had purchased a beta fish for years now, one at a time. This one was different though. I went in to the pet store to purchase a large red beta fish and instead purchased the scrawny purple one. There were only a few left prior to the shipment, none of them red. The purple one was the smallest of the group but he was happy. He’d swim over by me when I was looking at the bowl and when I left the aisle to go home, without a fish, I couldn’t get him out of my mind and went back over the end of the aisle, where he seduced me into buying him, with his happiness.

I brought him home and placed him on the countertop near the sink, where I could see him when I’d wash dishes. He’d swim over to the side near me and I’d rub the fish bowl as if to give him a fish hug. He’d love it and then swim away. The other fish would always dart away as soon as I’d touch the bowl; this one did not.

Our cat would love to sit on the box next to fishbowl and watch him. It was an ornate silver box, velvet lined, to store things. I had purchased it many years ago to store remote controls, long before it was fashionable to do so. Our cat would sit there and try to knock off the plant on the top of the fishbowl to gain access to the beta fish. Seeing this would prompt a scolding from me while Dear Son erupted in laughter, over the cat getting a scolding. It was a nice balance.

Over Thanksgiving, the fish continued to hover near the top of the bowl. He had outlived the normal lifespan and I dreaded the loss of my fish and even worse, removal of the dead fish from the bowl. As he lay near the top, I continued to change the water in the bowl every week and continued to feed him. I wondered when and if I should stop as the fish was clearly suffering. I wondered which would be more humane. It was a $3 fish, so it shouldn’t require much thought, but the cost was never really a factor in doing what is right. After all, he could be replaced, but that wasn’t really the issue.

As he lay at the top of the bowl, I couldn’t help but think about Dear Son. I remembered when he was on the ventilator and wondering what would be proper. I remember conversations with the geneticist about the end of life and he almost had me convinced at one point, that the time to end things is when they are suffering, however I just could never do it. It didn’t seem right.

The days went on. The weather was cold and Dear Son was home for the Thanksgiving holiday. We’d be spending it here, after a family member got sick and was unable to host. Staying at home was always fine with me however the days were long with Dear Son and it made me uncomfortable not to be able to feed him a hot meal and even more uncomfortable to cook a turkey without giving him any. It always seemed mean to let him smell the food, but not allow him to eat. I’ve never been able to do that, at least on the holidays.

I started feeding him the day before Thanksgiving and made him his favorite meal. His eyes lit up as I prepared the meal and he began to rock very fast in his rocker, almost bursting from excitement. I pureed the meal up and fed it to him slowly. The liquid didn’t go as well and he choked a bit so I stopped the drink and continued to feed him. He was so happy. And so was I. I fed him again at dinner and then it was Thanksgiving Day. I fed him Pedia Sure for breakfast and then made our turkey dinner for lunch. It was a little bit different today though. I pureed the turkey, the sweet potatoes and some broccoli for him. I left him in his new rocking chair for lunch, since it was easier to leave him there instead of moving him to the wheelchair. In the rocker, I could turn it towards the table and the table height would be perfect. Soon into the meal, he began falling over to the right repeatedly. He could not sit up. I took my left arm and placed it around his shoulders, his head tipping back on the top of my arm. I fed him with my left hand and he quickly placed his right foot on top of mine beneath the table and his right hand on my lap. When he was a little boy, he always placed his foot on my lap as he fed, as a symbol of closeness. And now, over a year after his feedings by mouth have ended, he remembered the old routine. The cat, jumped up on the chair, to watch Dear Son feed. We have a glass topped table so the cat was visible beneath the glass. Dear Son laughed at that as he knew the cat would be hoping for some of his meal. The cat sitting on the chair would prompt a scolding from me, more like a reminder to not beg for Dear Son’s food. He didn’t really, but it made Dear Son laugh when I said it, as he loved the thought of anyone getting in trouble. The cat knew the game and he wagged his tail from side to side as I did it.

Dear Son loved the meal. He’d look me in the eye and then when I wasn’t getting the food in fast enough, he’d lean forward and smash his face into the potato mixture as if to tell me to “hurry up”. That’s what he wanted ever since he was little, to get the food in faster. I’d try to restrain him from smashing his face into the food but he always won out. I wasn’t sure if it wasn’t because I wasn’t getting it in fast enough or he simply wanted to feel the food against his face, since it had been so long.

As I fed him dinner, my arm around his shoulders, his head tilted back with his eyes gazing into mine, I couldn’t help but feel good. Although he was sixteen and I was feeding him like a baby, it just didn’t matter. I could feel the love and it was mutual. I was doing was I thought was right and it felt really good. Feeding him via the g-tube might be what he needs but it never feels quite right as a mother or as good as feeding him real food by mouth. There is something about nourishing your children, that is ingrained in your being, and the Pedia Sure doesn’t quite cut it. We finished our meals, and Dear Son looked up into my eyes and said, “I love you.” It was unintelligible as usual, but I knew what he meant. I gazed back into his eyes and said, “I love you too.” I knew then, that this would be the best Thanksgiving and one I would remember for a long time.

As I cleared the dishes, the fish hovered near the top of the tank. I went to bed that night and he looked worse, his color was more of a pale gray and his body hovered in an upside down “U”. His breathing was more labored than before, with large, almost gasping breaths. I rubbed my finger on the fishbowl giving him a long fish hug before going to bed.

I woke up the next morning and the fish was dead. I knew then that I had made the right decision, caring for him and letting nature take it’s course. I felt the same way with Dear Son, loving him and doing what is needed until the end. And for that, I am thankful. There is a saying that goes something like this, “If I were to give trade away all the things I have, for all of the things I want, I would be bankrupt, for all I need has already been given.”

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Note: Dear Son enjoyed lunch and dinner on Thanksgiving and then lunch the following day before going back to his normal routine. He had seizure issues for several days during this time and at one point was no longer able to sit up at all. Once the seizures got under control again, things improved. He is now doing much better.

Today, we are heading to a Christmas Party at the Respite House, where he stayed this summer. He absolutely loved the party last year and laughed the loudest of all of the kids in the room.