Happy New Year!

I just want to wish everyone a happy and healthy new year. I am going to take a few days off and will return at the end of the week.

Life’s Not a Bowl of Cherries…

I remember driving to work, around the time I wrote, “Killing Me Softly With His Song”, about Dear Son’s fading away. I could always tell overall how Dear Son was doing, by the drive to work. I would start out the same, with the radio on and then at some point a song would come on the radio and I would suddenly be transported, where I would spend of the rest of the drive thinking about Dear Son, his life fading away, his body worn out, as if he were an old man who used the best days of his life in hard labor and is now paying the price.

I worried about his birthday coming up, on November 12th and what I should do. Typically, I’d send a cake to school where they could celebrate his birthday with the class. This would always excite Dear Son since I would have a cake made to send to school. The cake would typically be a yellow cake with buttercream frosting, because Dear Son didn’t like chocolate cake or chocolate anything. To be quite honest, he never even liked cake, he just liked the party. Typically, on his birthday, he might indulge in a bite of cake, provided it had some ice cream on it, for the festivities. More often than not, he would just wallow in the glory when everyone sang “Happy Birthday” to him smiling ear to ear, with his eyes lit up, fully basking in the attention and soaking up all of the energy in the room, like a sponge.

I had been thinking about doing that this year, but worried about the feeding tube. Dear Son has been on g-tube feeds since June, getting his six cans of Pedia Sure and two cans of water every day for months now. On occasion, I’ll indulge him and try to feed him a meal, that’s about as close to pureed as you can get. It will typically be a favorite meal of his and on a day when it’s cold, when I think he needs a hot meal to warm his belly or when I am weak, typically on a weekend, when I can’t stand cooking in the house, letting him smell the food and then not feeding him a real meal. On those days, I’ll set a tablecloth on the table and make a really nice meal. Dear Son will smile and get all excited as I wheel his chair up to the table and then promptly take his head and try to mash it in the food on the plate, a sign that means to “hurry up” and get the food into his mouth. It will seem like a good idea until he chokes a bit and then the experiment is aborted and I resolve never again to try it. Dear Son will lean over at the end of the meal and kiss me on the hand several times, to show his appreciation for real food. It’s a stern reminder that he has not forgotten his mother’s home cooked meals and that feeding through the g-tube doesn’t cut it. Overall, I have adjusted to the fact that he can’t eat real food anymore and the occasional meal is pretty much history.

The emotional turmoil goes on however. Would it be mean to send a birthday cake to school that he can’t eat? I decide in the end that he doesn’t even like cake but the birthday party and his classmates singing, “Happy Birthday” will do more for his morale. I send the cake to school. The party is a huge success and it does more for his morale than anything else I could do.

Fast forward to Christmas Day. We are invited to Christmas lunch at his paternal Grandma’s house. Christmas lunch on the holidays are a big deal over there. Typically, Grandma and her daughter make all of the main courses, her son’s in charge of mashing the potatoes, her daughter-in-law is in charge of desserts. We eat around 2 p.m. Dear Son loves having everyone around and especially loves it when he gets to eat at the big table with everyone.

But this year is different. Dear Son has a feeding tube and isn’t supposed to eat real food. I tell Dear Son the day before that he gets to eat Christmas dinner. He smiles when I tell him. Christmas day arrives and he’s sleeps through our lunch. Around 3:00 p.m., he’s awake and people are eating dessert so I have his aunt bring him a small bowl/scoop of ice cream. She arrives with the bowl and he looks her in the eye and says, “I love you”. Now, Dear Son doesn’t speak but on occasion a word or two slips out. Most of the time it is unintelligible to the average person, as it was that day, but I know what it means. So he eats his ice cream and is thrilled.

Dinner arrives and I chop up his dinner and feed him a real meal. He eats far less than he used to, but still enjoys the meal and thankfully doesn’t choke. He kisses me three times on the hand at the end. As I am cleaning up the table, I begin to think about these feedings. We get so used to doing what we need to do to make things safe or to save these kids, but really, how great is that? I am sure most doctors and other medical professionals see kids eat via a feeding tube all the time and after a while, they must think, “this is the way it is”. But getting used to something, doesn’t always make it right. I understand why he can’t eat by mouth anymore, but sometimes, you have to break the rules. I mean, when was the last time you said, “I love you”, to thank someone for a bowl of ice cream. Life isn’t a bowl of cherries but sometimes love is a bowl of ice cream.

Are You My Mother?

It was just a typical story on the news. It shouldn’t have been so powerful, especially to those not involved. That is not to say that it wasn’t sad, that it shouldn’t have happened, or any of those things. All I am saying is that we hear about these things that happen a lot on the news and we are almost de-sensitized to the crimes. But this one was different.

The mother, had not returned home from one of her pizza deliveries. After forty-five minutes, the owners of the pizza place, called the police. The mother, with tossled hair and sans make up, looked to be a hard working woman. The type of mother, taking a second job to support her family, and doing whatever she could to support the sons she loved. A search ensued and some time later, her body was found. Her years of hard work had appeared in her face but when her son spoke, I knew what kind of woman she really was. I will never forget the sadness in this young man’s voice.

The story was that this was a mother of four young men; the father had died several years ago and the mother was left to raise her sons. The son, on camera, appeared to be very late teens or a young adult, a tad scruffy looking, as the first new beards of adolescence sometimes are. But what he said, broke my heart and I could not stop thinking about him. He said, “You cannot imagine how difficult it is to be without a mother; you just don’t think about it until they are gone." The sadness and the emotion of this young man broke my heart. Certainly, I understood his grief and his grieving, but imagining the life of these young men, and what was yet to come was disturbing.

The young men, while old enough to maybe live on their own, and much too old to be adopted, still need a mother. Their lives will be forever shattered and they will stumble along with less than opportunities, and less than jobs, because they have no guidance. No one to help them with college admissions, no one to guide them toward the right choices and no one to help them get over the emotional trauma of losing both parents at a young age. These will be broken men and if we are lucky, one or two may be lucky enough to overcome this, but all of them, will never forget.

My mind moved quickly to the holidays. They will bury their mother before Thanksgiving. What will they do on that day? How on earth, will they be able to give thanks? No, they will remember whatever happened last year and the year before, and cry because it will never be the same.

They will try to stay together, or hope to stay together. They don’t know that part yet. Hopefully, a relative will take them in, however the reality is, they will be split apart or rather, go their own way.

Their Christmas will be filled with sorrow. Hopefully, their mother has instilled some religion in them, so they will know a place of peace and hope, during this time of despair. Their wish list at Christmas, will have dwindled from all the normal things young men want, to a list of one: to have their mother back with them again. They will all have the same list and the same wishes, none of which will be fulfilled.

Merry Christmas!

I'd like to thank everyone for your interest in Dear Son and your support and prayers through his hospitalizations and throughout the year. They are appeciated and I have no doubt that they have made a difference for Dear Son. We send our warmest thoughts and best wishes for a Merry Christmas and Happy New Year.

Love,

Dream Mom and Dear Son

Diagnosis-Unknown; Prescription-Santa

Post Description: This post describes one of Dear Son’s long hospitalization’s over the Christmas holiday and how the arrival of Santa lifted his spirits.


It was 2004 and we had been in the hospital for over two weeks, when Christmas arrived. Dear Son, had been hospitalized nine times this year and this hospitalization was by far, the most intense. Dear Son had been vomiting on and off for months and was losing weight quite rapidly now with no resolution in sight. The neurosurgeon had just implanted his Vagus Nerve Stimulator just days ago and Dear Son was still recovering. Specialty after specialty had entered the room, only to leave us without any answers. Dear Son had been sleeping most of the time now, too weak to do much else. I was beginning to get very worried since no one seemed to have any answers.

I called my church at 8 a.m. on Christmas morning. I am crying and I ask them to pray for him. I am hoping for a Christmas miracle of sorts, that they find out what’s causing his vomiting, so they can get it resolved and we can go home. I look over at Dear Son and his tiny, frail body is resting peacefully on his side, in the hospital bed. This was not the way I had hoped to spend our Christmas.

Suddenly, Dear Son’s eyes popped open as something caught his attention in the hallway. His eyes grew very large and I peeked over his bed to see what was the matter. I looked out in the hallway and saw nothing, I looked over the nursing station and still couldn’t see anything. And then, in the far hallway near the children’s rooms on the other side, I saw him. He was big and fat and wore a red and white suit. He had a giant sleigh full of Christmas presents and several elves helping him out. Dear Son’s eyes were so big, I thought they were going to burst! He watched intently as Santa moved about across the hall. And then the bells started. Santa started ringing his bells to let the children know that he had arrived. I looked over at Dear Son and a huge smile came across his face. Santa, the big guy had indeed arrived.

I laughed to myself at the wonder of it all. Soon Santa arrived at Dear Son’s room. He brought in bag after bag of presents for Dear Son. I was amazed at the enormity of it all. It was truly a wonderful event.

Dear Son had his picture taken with Santa and it did more for his morale than anything the physicians or I could have done. Santa left the room and soon we saw him on our local news. Apparently, Santa had arrived at the hospital using the Big Academic Medical Center’s helicopter. They showed him arriving at the hospital on the roof.

We would spend another two weeks in the hospital after that. That visit would forever change how I view the holidays. So often we forget, about the children who will spending Christmas in the hospital. Some day, when my days caring for Dear Son are complete, I’ll look forward to giving back, and making Chirstmas special for some other children. In the meantime, I’ll say a prayer, that they’ll all be home soon.

I’ll Be Home for Christmas

Post Description: This post describes the Christmas of 2004, where Dear Son spent thirty two days in the hospital. It was that hospitalization, when I was reminded about what a blessing it is, to spend it at home.


This post is dedicated to all of the children that are in hospitals on Christmas Day and throughout the holidays. May we remember to pray for them and always remember that every holiday we spend at home with our families is truly a blessing.

It was 10:42 a.m. on Monday morning and I had just received another call from school regarding Dear Son. He had been vomiting again and I needed to pick him up. Just last week, I had just been called by the school for the same issue however they had taken him by ambulance to the nearest hospital and he was later released. Here it was, only 72 hours later, and the issue was repeating itself for the umpteen time this year. I wondered how I could continue to work until this issue was resolved, but more importantly, how much longer Dear Son could endure all of the vomiting.

Dear Son had been hospitalized nine times this year, four of which were for vomiting. The year had started with uncontrollable seizures that were difficult to stop. I woke one morning hearing Dear Son gasping, only to find him seizing. It was 5:30 a.m. and the seizure was escalating fast. I carried him into the kitchen and set him on the floor while I called 911. There was no time to do anything else and I needed to hold him to keep him from choking on his tongue. I called 911 and tried to give them the information as quickly as possible however the seizures began to get more and more violent. Soon Dear Son’s arms and legs were bouncing off the floor and I struggled to remain calm and give them the information. I already knew the routine. The security at the apartment complex would unlock the secured access allowing the fire trucks and ambulance to access my building. The paramedics would arrive, take Dear Son in the ambulance, start an IV and then transport him to the nearest Emergency Room (ER). At the ER, they would give him some seizure meds to stop them or if the seizure had subsided, run labs and then administer the seizure meds. There was no time for that. I needed seizure meds stat. I began to cry while I waited for them. It was the first time I had done that, in all these years.

The paramedics arrived and took Dear Son to the local hospital. He was still seizing violently so they administered the seizure meds stat without installing the breathing tube first and the airways collapsed. It was now a Code Blue and a crowd of people had gathered to watch this life saving event. Only, it wasn’t an episode of ER, it was my son. I prayed for him but couldn’t watch. Soon the transport team arrived and he would be airlifted to the Big Prestigious Academic Medical Center.

That was how the year started. After that event, I would be given Diastat (a kind of rectal Valium) to administer at home, in case of such emergencies. In May, we would implant a feeding tube to make administering the seizure meds easier and from September on, he would be hospitalized on and off for this vomiting.

It was now early December and Ped Neuro Doc had just admitted Dear Son for his tenth hospitalization this year. It was critical to locate the source of this vomiting because he had just been re-scheduled for his surgery to implant a Vagus Nerve Stimulator (VNS) due to the intractable seizures. The surgery had been cancelled once, due to the vomiting, and time was running out. Dear Son had met his stop loss for the year and the surgery, if it was done by the end of the month, would be paid at 100%.

The vomiting continued at the hospital. Several specialities were called in to diagnose Dear Son. We had Neurology, Pediatrics and GI to name a few but we were not making any progress. Each morning, I would feed Dear Son his oatmeal, and some time later, he would vomit his breakfast. This would continue over and over until he no longer wanted to eat. Dear Son was getting weaker by the day and losing weight rapidly. Each week, a new attending would come on service and there would be a new plan of attack. I was getting frustrated with the physicians since each specialty had their own plan, none of which made much sense.

Dear Son had stopped eating. It was now only a few days from the new VNS surgery date. I stayed with Dear Son 24 hours a day, as I always did. I worried he was hungry. He was getting terribly thin; he was slim to begin with so losing more weight was troublesome.

A new plan was agreed to and soon the Neurosurgeon agreed to implant the VNS. The surgery went well and the Neurosurgeon came by daily, long after he needed to, to check on Dear Son. The vomiting issue had not been resolved however Dear Son had stopped eating several days ago and I now had a bigger issue on my hands. Pediatrics wanted to release Dear Son so we could go home for Christmas. They had not solved the cause of his vomiting, Dear Son wasn’t eating, he had lost 10% of his body weight and he hadn’t had any food in ten days. I told them it was irresponsible and that we weren’t leaving until they knew the cause of the vomiting and until Dear Son could eat. Frantic, I asked the nurse to page Ped Neuro Doc but got no response.

All the physicians had left for Christmas and only the residents remained. I had been coming here for years with Dear Son and knew we were in trouble. Dear Son was fighting for his life and nearly comatose, in my opinion. I demanded they start some IV nutrition. It was Friday night and with everyone gone, there was no one there to determine how much nutrition he should get. I fought with them and they stalled. Christmas morning arrived. I called my church, crying once again, and asked them to pray for Dear Son. Dear Son lay still on the bed, looking helpless and frail. I prayed for him some more. Tired and hungry, I left the room briefly in search of something to eat. The restaurants were closed for the day, so I quietly chose a ham sandwich out of the vending machine, because it was the only one left. My memories of every Christmas would re-play over and over in my head, along with all the memories of Dear Son. I had hoped he would make it through.

Christmas and New Year’s passed and I continued to pray for answers. It wasn’t until early January, that a radiologist would locate the cause of the vomiting. A surgical nurse had installed a too large feeding tube just three months ago that had blocked Dear Son’s stomach opening hence the vomiting. Not only did it block the tube, but it had scratched the back of the stomach thus irritating his poor stomach, that much more. My heart ached for my son and all he had been through. Finally, 32 days after he was admitted, we came home.

*Note: The picture is of Dear Son just a few days after being released from the hospital.

Changes

You may notice a change in my posts from this point forward. Each post will now include a "Post Description" to make it easier for syndication pick up, since I am now part of the Blogburst Network. In case you missed it, you can read about it here.

Full Tilt II-The Wheels are in!

Post Description: The post showcases the new wheelchair and is a follow up to the "Full Tilt" post, which was originally posted in late March, and is posted below. In that post, I describe how the excitement for the new wheelchair was quickly diminished with the realization that Dear Son will never walk again.



In late March I met with the wheelchair vendor to order Dear Son's "new" wheelchair. We accepted delivery around Thanksgiving. I've had a few weeks to test out the new chair and overall, it's been great! As you can see from the photo, it's quite large, more like a Hummer wheelchair. This wheelchair is manufactured by Gunnell, Inc. and the model is the "Rehab TNT". As in any wheelchairs, there has been a lot of modifications added for Dear Son.

The new chair fits Dear Son much better and offers the "tilt" feature he needs which allows for better positioning and better head control since it can be tilted back to support him. The manufacturer was gracious and made some accomodations to the frame to allow me to lift it into the car a little easier.

Some of the features that work well for Dear Son are:

1) The oversize headrest-With his previous wheelchair, his head would often fall behind the headrest due to his lack of support and lack of control. With the new one, it's impossible for his head to slip behind.

2) The arm rests-The arm rests are wide enough to support Dear Son's arms and give him some leverage. While he has no real use of his hands or arms, placing them on the arm rests help support him better.

3) The calf supports-Previously, his feet would fall behind the foot rests and drag on the ground or get caught up in the wheels. Most of the time, it was because he didn't want to be in the chair any longer. Sometimes, it was because he didn't have much control. While certainly, I could strap his feet in the chair, I have always preferred to allow Dear Son the freedom to be able to move his feet and be comfortable.

Some of the features I would like to see are:

1) Instructions on how to assemble and disassemble the wheelchair-By the time most people are ready for a "tilt" chair, they typically have a wheelchair van. I can't afford one so I needed a wheelchair that I could take apart and put into my car. Gunnell, Inc. was one of the few manufacturers of "tilt" wheelchairs, if not the only one, that we could find that did that. On the down side, there weren't any instructions on how to take it apart and put it back together. While the vendor did show me how, I am not very good at putting things together. I have since written up my own instructions. Regardless of whether other people have a van, I am certain there will be times when a person needs to take the wheelchair apart, hence the instructions would be needed.

2) There are push pins that lock the seating mechanism to the frame and push pins to lock the back support into the frame. It can be difficult to remember which holes the pins need to lock into. My suggestion would be to color code the push pins and color code the appropriate holes so all that would be required is to match up the colors.

In case you missed it, here is the original post.

....

"Full Tilt"

I was very excited all week. Friday would be the day that the wheelchair vendor would show us the new “tilt” wheelchair. The problem we had, was finding an “adult” tilt wheelchair that could be taken apart easily and transported in the trunk of my car, versus taking it in a wheelchair van which I neither had nor could afford. The wheelchair vendor had found a manufacturer that had a chair that met these requirements. The manufacturer offered to send the chair via Next Day Air to the school so we could see it.

Every day, I spoke to Dear Son on how exciting it would be. The plan, was that the vendor would come to Dear Son’s school and meet with his Dad and I, along with the physical and occupational therapist, to discuss Dear Son’s needs. He would show us three chairs. Of particular interest, was one of the wheelchairs, which could be taken apart easily and transported in the trunk of my car. Dear Son neither smiled nor shared my excitement for the new chair. I explained to him how great it would be that we could continue our walks this summer and it would be more comfortable for him. But he never wavered and stared straight ahead.

The visit went well and the new chair was selected. Unfortunately, it wouldn’t be ready for months, due to insurance approval and all the customizations required. We were just finishing up when the physical therapist asked me about Dear Son’s gait trainer which was sitting in the school hallway. She explained to me that the school could no longer store his gait trainer and asked if I would like to donate it to the school’s Special Needs Program since Dear Son doesn’t use it anymore. “No”, I said quickly. I immediately dropped my head hoping she didn’t notice the flush in my face. She explained that I would need to pick it up and take it home as soon as possible because they no longer had room to store it. I looked up again and said, “O.K.”

Inside, I was dying. I was not prepared for this moment. The excitement of the new chair quickly vanished with the mention of the gait trainer. Dear Son had not used the gait trainer since early 2004, almost two years ago. Back then, Dear Son could walk on his knees but could walk on his feet with the aid of the gait trainer that he used daily at school. He was quite good in the gait trainer providing he had his AFOs (leg braces) on. He could actually run in it and the physical therapist always had to tell him to stop or slow down because he liked to run to the windows to look outside. He also liked to come to a “crashing” halt where he would bang into the window or wall and then grin with delight. He thought that was particularly funny. We had to make one of his IEP (Individual Education Plan) goals to listen and not run into the walls; they called this “planning”. There was a fine line between teaching him to be respectful of the property and containing his excitement of being mobile and able to walk. His turquoise blue eyes would light up like they were on fire and his face would glow. The image was quite striking against his nearly jet black hair. He was so proud to be able to walk; it was like he was a different man although he was only a boy at the time.

Dear Son wanted to walk more than anything for as long as I could remember. Of the three therapists-physical, occupational and speech, the physical therapist was always his favorite because they would work on walking. The other therapists at school used to get depressed because he was so excited to see the PT but never them. Dear Son endured endless physical therapy sessions and hated doing all the required exercises but loved it when the word “walk” would be mentioned. We had the hardest time finding a gait trainer initially because Dear Son has no use of his hands/arms so a traditional walker (gait trainer) would never work. The therapist finally located one with a torso strap and Dear Son was on his way.

I remember the first time I actually saw him walk in the gait trainer. He was about 8 years old I believe. It was the oddest thing because it was the first time he ever did anything on his own, without my help. I kept wanting to help him but I knew by the smile on his face that I needed to leave him alone and let him show me how he could do it. He was so proud.

After his multiple hospitalizations in 2004, Dear Son never walked again. Not only hasn’t he walked, he never stood up again, nor will he ever. It was last summer when his pediatric neurologist had “the talk” with me about Dear Son’s deterioration and explained that he had a degenerative condition related to his gene defect and that he was never coming back. I have learned to accept that but I was not prepared to deal with the gait trainer. Getting rid of the gait trainer, is admitting that Dear Son will never walk again. It means I will never see the fire in his eyes, the smile on his face or the glow when he runs to me in his gait trainer.

“No, I said.” “I will take it home”. So with a tear in my eye and a lump in my throat, I made arrangements to take it home.

Another Christmas Meme

I was reading Dr. Anonymous blog and saw this and couldn’t resist. No, I was not tagged for a change, but I do love Christmas. So here goes:

1. Hot Chocolate or Egg Nog? Absolutely, hot chocolate. I like to make my own lately with a little cocoa, sugar, milk, vanilla and of course, whipped cream. I saw a new recipe for a white chocolate hot cocoa with candy cane pieces in it on the internet last night that I might like to try.
2. Does Santa wrap presents or just sit them under the tree? Santa wraps presents, usually in color coded wrapping paper to coordinate with the Christmas tree decorations. A lot of care goes into each present, since Santa loves to wrap. Santa extends her, I mean his, offer to other family members, like Grandmas, who need help with holiday wrapping by spending an entire evening wraping gifts for whoever needs them.
3. Colored lights on tree/house or white? White lights on the tree and each tree has a theme. The tree has between 1000 and 1500 white lights, depending on Santa’s time. When I had a house, there were many white lights on the house, as in over 5,000 lights. This doesn’t count the lights that are on the “inside” windows. I can be very, very competitive, and creative, in the lights arena. I actually needed to hire an electrician to take it to the next level. At some point, I would love to create new themes for the house for each year. But I’ll need someone who is good at workworking to make it work. For example, one year I could create a “gingerbread” theme house and then another year something totally different.
4. Do you hang mistletoe? Of course. And lots of it.
5. When do you put your decorations up? Right around Thanksgiving, depending on when I have a day off.
6. What is your favorite holiday dish? Hmm…I’m not sure. It used to be fudge but one of my relatives makes the most amazing desserts and many of them are delicious. I don't care as much for sweets anymore so I can't say that I have a favorite.
7. Favorite Holiday memory? I guess it would be at Midnight Mass when Dear Son was only six weeks old. He had on a bib that looked like a Santa outfit-with white yarn for a beard and little black boots. His little face was tucked down into the beard and he was just the most beautiful little Santa.
8. When and how did you learn the truth about Santa? Very early on, I knew, but I still fake it to this day.
9. Do you open a gift on Christmas Eve? Personally, I open them up as soon as the house is clear and take a look. Then I very carefully, re-tape them and wrap them right back up. I have done this for years so why break with tradition. I can’t stand the suspense.
10. How do you decorate your Christmas Tree? I have several trees, but since I sold my house, I only put up one tree now. All my trees have a color theme and the one I put up now is burgundy and gold, very formal, very traditional. It has crystal and gold ornaments on it, lots of gold Santa’s and victorian type ornaments and lots of ribbons. I have special decorations for the coffee table along with replacing all of the candles in the wall sconces to match. When the lights are on the tree, the candles and all of the wall sconces are lit, it’s absolutely beautiful. It looks like it belongs on the cover of Traditional Home magazine. I used to have a separate tree for the family room and then one for the kitchen, guest bedroom and Dear Son’s room. Whenever I get another idea for a theme that I would like, I buy a new tree. I am very creative when it comes to decorating.
11. Snow! Love it or Dread it? Love it! I find falling snow very romantic. I don't mind driving in it either.
12. Can you ice skate? Yes, when I was younger and I was quite good at it. I tried it a few years back and didn’t do as well.
13. Do you remember your favorite gift? Yes, the first year I got married was my favorite gift. I received some of my formal china from my husband. He had it gift wrapped in this green foil paper and it had a shiny red ornament and big red bow on it. I remember how pretty it looked and was glad he took the time to have it wrapped.
14. What's the most important thing? The most important thing is to give of yourself, to go out of your way to make the season nice for others. There is so much need in this world and doing something for someone who has nothing or is really in need is more rewarding than anything I might ever receive. When you see the joy in their faces or the tears in their eyes, you know you have made a difference for that family.
15. What is your favorite Holiday Dessert? I don’t have a favorite.
16. What is your favorite holiday tradition? My favorite holiday tradition is decorating the house and putting up Dear Son’s favorite decoration. It’s a Mr. Christmas Twas the Night Before Christmas House that plays the story and as the story plays each window of the house lights up. I must have hit the play button over 200 times a day during the Christmas season for many years and now it’s worn out. I can’t find a replacement but it’s still my favorite tradition and favorite memory. Dear Son would sit and listen to the story over and over again until he would fall asleep. He never got tired of it.
17. What tops your tree? A large burgundy ribbon with tiny gold french horns on it. I purchased all the ribbons for the trees years ago when I was in a specialty shop. I saw this tree and fell in love with it.
18. Which do you prefer giving or receiving? Giving. I love to pick out the perfect gift for someone.
19. What is your favorite Christmas Song? The Messiah.
20. Candy canes, Yuck or Yum! Yuck, unless they are crushed up and put in White Chocolate for a decadent dessert.

The Little Boy's Christmas Dream

It was Christmas time when I went to pick Dear Son up at the daycare center. Actually, it was only a few days prior to the big day and traffic was busy. The rules were you had to be there by 6 p.m. or it was $10 for every minute after that. I worked about twenty five minutes away from the daycare center but closer to Christmas time, you never could predict how long it would take to get here. Some days, it might take twenty minutes just to go through a stop light, making the 6 p.m. rule a lot more difficult.

Dear Son was ten at the time, a tall thin child with a big smile. To say he was slim, was almost an overstatement, since most slim pants would fall right off, but his slight frame made him easier to lift. The woman who owned the daycare center, was very stylish, and very nice. She was always dressed to the nines and it was hard to believe that she ran the center, let alone take care of the children, but she did just that. And she did it extremely well. She had a very warm personality that was felt by everyone who came into the center, most importantly the children.

I had moved here six months ago, after selling my home, to live closer to work. I had been having difficulty in hiring sitters to come to my home and I thought if I moved closer to work, I could find a daycare center that might take Dear Son, and it would solve the problem. She had agreed to meet Dear Son and try it for one week, to see if she could handle a disabled child at the daycare. While legally they can’t exclude disabled children, most daycare centers will not take them, since they don’t have the adult to child ratios to support their care, even if they had the knowledge to care for them, and or their medical issues. I had been getting a bit desperate in my search to find a place, since I had been turned down by three daycare facilities so far. Most were so busy and disorganized, that I am not certain I would have felt comfortable at any of them, but I had to keep trying. She on the other hand, met with me and agreed to meet with Dear Son. I had told her that he was in a wheelchair and could not walk or talk and was still in diapers. I said he was very easy going and that I was looking for some daycare for two hours or so after school. The bus would drop him off at 3:30 p.m. and I would pick him up around a quarter to six. She agreed to try it for one week. I was ecstatic.

Dear Son was there one day when I came to pick him up. She told me it was not a problem and that they wouldn’t need the one week trial since he was just fine; he could stay. He was the only disabled child in the daycare, and the only one they ever had to this day. She was very hands on with the children. In addition to herself, her two daughters worked there along with several other caregivers. The daughters would tell me stories of how the kids would fight over who gets to feed Dear Son, stories I had a hard time believing, until I saw it for myself. I walked into the daycare center one day and there was Dear Son, sitting in his stroller, with one leg crossed over the other, and a pretty little girl sitting next to him, holding his snack cookies. Dear Son would open his mouth and she’d drop one in and then eat one herself. No words were exchanged between the two, but both were happy. I marveled at how Dear Son was able to get people to help him.

So on this particular night, I rushed in to get Dear Son prior to the 6 p.m. closing. I was exchanging pleasantries with the owner when a small young boy, around five years old, came up to me. He had thick, light brown hair, big blue eyes and a beautiful complexion. He touched my hand to get my attention and I looked down at him. He said, “I had a dream last night about Dear Son”. “You did,” I exclaimed. Before I could say anything more, he replied, “I had a dream he could walk.” Suddenly, my heart melted and nothing else seemed to matter. I knelt down by him and looked into his eyes. Tears welled up in my eyes and I told him that was a beautiful dream. I said, “I wished Dear Son could walk too.” With that, he went on to tell me all of the details but for some reason, I didn’t hear anything after that. At that moment, I knew that Christmas had indeed arrived.

Christmas Blessings

Every December, Dear Son's school would put on a Christmas program for the parents. I always attended these programs even though it required me to leave work in the middle of the day, which I didn’t like to do due to a heavy work schedule. I would come to these programs to see Dear Son, although rarely was it anything different. There would be the Christmas Program with the typical holiday songs like “Rudolph The Red Nose Reindeer” where they would dress the kids in red turtlenecks and put antlers on all the kids, while singing the song. Typically, any child wearing antlers, or any other animal parts (pig noses come to mind), does not tug at my heartstrings in any way.

So this particular year, I expected more of the same. The big difference however, was the mix of students in Dear Son’s classroom. Of all the years, this one was different because nearly every student in the classroom could not talk or was in a wheelchair or both. Technically, it was called the “Physically Handicapped” classroom since that was their primary disability and because they didn’t classify the mental disabilities until much later. In addition to the physical and mental disabilities, there was one girl who was deaf. Singing was definitely out of the question because most couldn’t speak and one couldn’t hear. Even if they could talk, you would be asking quite a lot for them to be able to put enough together for singing. On the way over, I tried to think of what they might do, however I couldn’t think of anything based on the children’s abilities. I must admit, I was quite intrigued to see what his teacher, Mrs. B., would come up with.

They started with the first grade and worked their way up. The first grade came out and performed. The curtain closed, a Christmas song played, then the curtain re-opened for the second graders. After the second graders were finished, the curtains closed, a Christmas song played and the curtain re-opened. The Physically Disabled Classroom was next. The curtain closed. A Christmas song played. Then a second one played. Then another one played. Then another. Then another. I knew it was going to take a little while to assemble them, since the wheelchairs had to be carried up the stairs to the stage, and each child had to be carried to their places. It was so long however, that I was beginning to think there might be a medical emergency. Finally, the curtain opened.

It was the most amazing program you have ever seen. The theme was Santa’s Workshop. In the workshop, were all the children from Dear Son’s classroom, all dressed in red and green, like little elves. More importantly, were the children themselves. The one little girl with cerebral palsy sat in the middle. Her head was moving side to side, just like it does in the classroom, because she could not hold it still. She had a toy in her lap, that she supposedly was working on, as one of Santa’s elves. The next boy, was beating on a drum of some kind. Normally, he’s hitting something or putting beans down the radiator in the classroom. The next boy, was a Jack-In-The-Box. His eyes were crossed and I wondered how on earth he could make it through his day like that. He was busy jumping up and down inside the box they created especially for him. He was so animated and hands down, my favorite. Then there was Rachel, a tiny little thing, with jet black hair and extremely short bangs, cut at an angle, which made it look like she did it herself. She sat cross legged at the back of the stage. As you went around the room, you saw each child as they were, with their disabilities highlighted in Santa’s Workshop, however that is precisely what made them the perfect elves for the program. The boy in the Jack-In-The-Box, could never sit still in the classroom. He was a perfect Jack-In-The-Box since he looked like he had springs attached to him causing him to pop out of the box. I would later learn, that they had to have two adults standing at the edge of the stage because he couldn’t stop jumping and they were afraid he would fall off. Dear Son was Santa. They sat him in his wheelchair and added construction paper to it so it would look like wood. They attached a beard to his face, which he did not like, since he didn’t want anything touching his face. He was quite the grumpy Santa, if you were to ask me, but that just made him all the more lovable. He had on a red sweater, as requested by his teacher. I later learned that he got the starring role in the program because he had a red sweater, which they wanted for the program.

The best part of the program was really the children. Their disabilities were what made each of the elves so animated. It was so animated in fact, that it looked like a Christmas cartoon, the kind they have on television, that had come to life. Normal children would not have been able to pull this off because it was their handicaps: their jerking movements, their lack of tone and slouchiness, that made them so real. Their faces were beautiful and fresh. Their lack of perfection, as evidenced by the normal children’s fancy hairdos, were absent. Their eyes were big and their smiles were imperfect, but their joy was real. Their hearts were glowing, and so were ours. It was a beautiful performance and I must say, that I have never seen a performance as magnificent as that. The curtain closed to a standing ovation, only to open again to celebrate the children once more, as if they could do an encore. Soon the curtain closed, the music returned, and the first Christmas song started up. Then another. Then another. Then another. And another...until all of the children were off the stage.

Deal or No Deal

We were sitting in the hospital room a few years back when he got the page. The Physician excused himself and made the call. “She should have been a DNR (Do Not Resusitate) a long time ago”, he said. And his voice trailed off. His words would remain in my head as I wondered what the scenario was that would have him respond in this manner. These were words I would not forget.

I remembered them today at a holiday party for special needs children which was held at a local university. Dear Son and I were invited guests, as were many of the children who had stayed at this particular facility, at one time or another. The facility, was not in any way affiliated with any academic medical center or even the university, but rather provided hospital type care days for sick and technologically dependent children, namely those on ventilators.

As a result, many of the children today, were severely disabled and in wheelchairs; the older ones had g-tubes with their feeding bags hanging behind their heads, their feeding alarms going off like one big symphony. The younger ones, in all kinds of colored wheelchairs, some motorized and some not, like Santa’s workshop on wheels. It was a sad but interesting group.

There was one boy in particular, that was sitting at our table. He looked to be about five, I suppose, give or take a year or so. He had blondish hair and beautiful eyes. He was leaning back in his tilt wheelchair, his small frail body much too light for his chair. His jeans were too large, probably to make them easier to put on. His ventilator tubing hung down over his stomach and along the sides of the wheelchair snaking around to the back, like a giant octopus had attacked his chair. The boy had a trach, hidden behind a terry cloth towel, every wheelchair mother’s best friend. His neck was long, twisted, and supported, in an odd kind of way, like someone had pulled up too hard to the right, broken his neck, and left it that way. I couldn’t help but notice it while trying to see his name tag. I asked his mother his name. “Adam” she said, and I began to talk to him. I could see his pupils responding to my voice, but he refused to look at me, assuming I would quit talking to him soon. His body lay in the chair and the only movement I could see were his fingers, from time to time.

The ventilator tubing upset me. It had only been a couple of months since Dear Son had been attached to one himself. The images of Dear Son lying in the hospital bed dying were too close for me yet; I wanted to turn away. Then all of a sudden, chaos erupted and the mother quickly stood up, whipped out the suction device and started suctioning him. I nearly vomited. It was always stressful for me, hearing the droan of that machine, while Dear Son’s face turned red, as he choked, gasping for air, while they took their time to suction him. I always had to leave the room for that since it was so stressful. I felt like a horrible mother when I did that, not staying by his side to hurry them along but instead leaving the room, while that machine sucked the life out of him and out of me. Dear Son would get so upset and yet to them, it was just another day at the office, and for me, well, they couldn’t do it fast enough.

My mind quickly shifted back to the party and Dear Son.

His response, was much different. He turned his head when he heard that sound, frantically trying to place the noise, unable to attach it to anything. I asked him if he remembered the sound when he was on the ventilator. Dear Son smiled, thankful I made the connection for him. I knew he didn’t forget but I had made a promise to him after we left the hospital and got home; a promise that we’d never do that again. It was a promise, I had hoped I could keep.

Another woman sat down at our table and Adam’s mother began to chat with her. I would continue to talk to the boy, finally earning his trust. He began to gaze over at me, in my direction when I spoke.

An older man stopped by my table. He would tell me about an organization for the mentally disabled that he worked with many years ago. He talked about a friend of his, who would get mad if anyone called the kids disabled, he instead, referred to them as “God’s Chosen Children”. It was a sweet thought but I had trouble wrapping my brain around that statement. I wouldn’t wish this on anyone.

As the party went on, I would watch Adam out of corner of my eye, as I attended to Dear Son, and talked to other people. This was no kind of life for a child I thought. No kind of life. This was not living, hooked up to a ventilator, unable to move anything but your fingers and your eyes. What kind of life did this child have? What kind of life would he have ten years from now, when he was much bigger and his mother could no longer lift him? She already looked exhausted and hadn’t sat still in her chair for more than five minutes at a time, constantly jumping up to adjust his tubing or to suction him.

All of this would bring me back to the conversation with the Physician only a few weeks ago. A simple question regarding the ventilator led to a discussion on DNR. He made his case asking me if Dear Son was suffering. I said yes. How could I not think that he was suffering when night after night, he would choke on his saliva? I would lie there and listen, as if I were a mother, listening to her child being beaten. He was trying to convince me that a DNR would be appropriate, if a child was suffering. He went on to explain that many physicians at Big Academic Medical Center were against DNR and were pro life, a position I couldn’t really argue with, being a pro lifer myself. He was challenging my beliefs, not in a bad way, but opening my eyes to a different point of view. He asked me to make the same decisions for Dear Son that I would make for myself. I drew the line quickly since that was not a decision I could ever make. I explained to him that if Dear Son were gone and I learned I had cancer, and it was curable with chemo and radiation, that I would not take any action. I explained to him that I have spent too much time in hospitals and that I never wanted to go through any of this medical stuff again. He continued on and was all set to write the letter, saying that he would write Ped Neuro Doc and tell him, when I stopped him and told him I needed more time. I am certain he knew it would never occur since he started the conversation saying that our “mothering” style is set in our child’s first year of life. I don’t think I could be a good mother, if I chose anything but life for my child.

But the argument reared it’s ugly head today with this boy. I saw the suffering. I didn’t think it was right. I didn’t think it was worth it. I mean, what kind of life did this boy have? It was beyond the fact that he wasn’t physically able to do anything. Here was a boy who clearly understood things, and yet, was trapped in his own body. The day went on and no one stopped to talk to him, at least, anything more than a greeting or two. He sat there, as if cemented in his chair, immobile and unable to communicate with anyone. This was some holiday party for him, I thought. My mind quickly wandered and the voice in my head grew louder, “who gets to choose, who gets to choose what’s right for this child?” The children’s choir started and they began to sing. I thought back to the statement from the old man’s friend, that these were God’s chosen ones. Then I got it, I finally got it…that’s who gets to choose.

But what happens when he makes the decision and we don’t listen, and we continue to pull out all of the stops to make him live? Perhaps that’s were the suffering comes in. We get greedy and don’t know when to stop, kind of like the show Deal or No Deal. We know when the contestants should stop, take home the money, but instead, they go on and play, always looking for a better deal, and getting burned in the end. But in the game of life, it’s not always so easy, especially when it’s God’s chosen ones. Deal or No Deal, that’s the question. I wish I knew. But if I were to look in my own son’s eyes, I know what would be true, is that I would always wish for, “one more day with you”. I love you Dear Son.

Best Toy & Gift Ideas for Special Needs Children

I
remember it very distinctly. I was standing in the Toys R Us store trying to find “one” toy that I could buy Dear Son for Christmas. It wasn’t that I couldn’t afford more than one toy, it was rather that with his disabilities, there weren’t any toys that he could do himself, that we didn’t already have. I walked around for quite some time, when I got stuck in one of the aisles behind two young boys fighting over all their toys. They had an entire cart full of toys and were begging for more. Somehow, at that moment, life didn’t seem too fair. I just needed one toy, that didn’t require the use of your hands, your fingers, that didn’t require you to be able to sit, to be able to roll over or to use your voice. I needed something that didn’t flash or vibrate (since he had seizures and these could bring them on). I wanted to surprise him, to make him smile. I was, after all, Santa.

Many of the toys I saw, didn’t work for one reason or another, or I had already purchased them. Most of my family, preferred to give me money, so I could select the toys. Typically, this would mean a two hour shopping trip, only to come home with a few five dollar toys, but nothing exciting or of any consequence. I should also explain that some of the challenges parents of special needs children face, is finding toys that match their “developmental” age especially when their “chronological” age is much larger.

I decided to put together a list of Dear Son’s favorite toys over the years, in hopes that I might be able to assist other parents of children with severe disabilities, in finding toys for Christmas. I will also show you a picture when I can and tell you what types of things you should look for or what made this particular toy a favorite.

To give you a little history, Dear Son is severely developmentally delayed (retarded), has no use of his hands or arms, is non-verbal, can not walk, can not talk, can not feed himself and is totally dependent on someone. For many years, Dear Son could not roll over. As time passed, he was able to walk on his knees and roll over. Today, he can do neither.

Wooden Rocking Chair- We purchased a wood rocker at a furniture store many years ago. We happened to find this rocker while we were looking to purchase some dining room chairs. Dear Son was getting fussy in his wheelchair so I put him in this child's maple rocker while we purchased our chairs. The rocking chair worked so well, we purchased it for Dear Son. What was great about this rocker was that it had a tall back, which supported his trunk and the back of his head. This rocker was made of maple, but was still light enough for him to scoot around the house on the carpet with it. He took his feet and scooted side to side to move it and then loved to lean forward and look out the window. I liked it because he could get around the house easily and independently. It was much better than sitting in a wheelchair all day or lying on the floor. We’d take this rocker to family outings or simply when we went somewhere, like to see fireworks on the fourth of July. It’s the only seat he was able to stay in. A regular chair didn’t work because he would fall off the chair and because he couldn’t move the chair around the room. Many physical therapists have never heard of a child using a rocker to get around in like this, but once they saw him, they agreed it worked. From a therapeutic standpoint, the rocker also helped his balance. He still uses a rocker today, only he can’t get around in it like he once did and it’s now much larger. I found some child rockers at this website. I like the one pictured Dear Son was that he could use his mouth and bite on Barney’s hands to get them to work. If Dear Son was sitting, he would take his left foot and step on Barney’s feet and he would talk. This toy was worth every penny. We have had about six of these in his life. There are so many severely disabled children who love this particular Barney, that it’s truly amazing. None of the newer type Barney’s work as well as this one. Here is an newer ones are plastic but should work just as well.

Train-The best train we ever got was one from Walgreen’s. It was a battery operated small train that had a 36 inch round track that fit on the coffee table in the family room. Dear Son loved to sit on the floor and lean against the coffee table to watch and listen to the train. He loved it even more when he could take his arm and de-rail the train. This might take twenty tries and an awfully long time but he could do it. And when he did, he would laugh some big belly laughs. This toy was great from a therapeutic standpoint to encourage use of his arms. I purchased more expensive trains from Lionel but they didn’t work as well since the track was too sensitive. A tunnel is a great idea too if you can find one for the train. What to look for: Look for a train with a small track, unless you have a lot of room. I like the battery operated ones best. Make sure you can access the batteries easily. Most of these cheaper trains work best however access to the batteries are difficult due to the small screws used.

Mr. Christmas Musical Carousels-Mr. Christmas makes a great line of musical carousels. What is great about Mr. Christmas items is that they have a lot of songs, both Christmas and non-Christmas on the carousels and they have a volume control. The volume control is a big deal since many of the cheaper carousels you buy don’t have a volume control and they volume is too loud. Also, the quality of the music is great on them. When you listen to a cheaper carousel, the music quality is scratchy. Dear Son loved to listen and watch the carousel. He especially loved one with horses. I have tried other musical toys/carousels but the Mr. Christmas ones are the absolute best. Do not bother with any other brand. This year, I purchased the Mr. Christmas Symphony Surprise-Santa's Workshop. Four windows open in the house to reveal musical animated Gingerbread musicians. It plays fifty songs in four part harmony, 25 Christmas and 25 non-Christmas favorites and includes a real clock. The web site will give available stores however I was able to find this one at our local Meijer store even though the web site only gave the Grand Rapids Michigan Meijer store as one of the available locations.

Swing-An outdoor swing is essential for them. What you want is a swing with a tall back to support them. You can find them for several hundred dollars in a therapy catalog however I suspect you can now find them in a toy store or on-line much cheaper. Every child loves the tall back, not just children with disabilities. You can often see examples of this type of swing in many parks across the country. They are most often in red, have a high back and nearly every child and adult will use them, disabled or not.

Television near their bed.-One of the most surprising things that Dear Son loved was a television he had in one of the rehabilitation hospitals he frequented. This particular hospital had a small t.v. right next to his bed. He loved it. A television across the room was of less interest to him. The small size is important too-I am guessing this one was around a 13 inch screen which is just about right.

Videos- His absolute favorite movie was, “A Very Goofy Christmas”. He would laugh big belly laughs over this one movie.

Silly Six Pins-This is a bowling game where the bowling pins talk. We never used the bowling ball but instead set up the pins on our kitchen table on a placemat. I would pull Dear Son up to the table in his wheelchair, with only his lap strap fastened, and he would lean forward and use his head to knock the pins down. The bowling pins would talk to him to help encourage this action. This activity helped strengthen his trunk control and he loved it. As a reminder, the age of destruction preceeds the age of construction so developmentally, things that crash will always be a better choice than things for them to build.

IPOD-My son loves to listen to music so any of the IPODs would be an excellent choice. You do have to be careful that you watch the volume control since they can’t turn the volume up or down themselves.

Musical Mat- This is a musical mat that is about two feet wide and two feet tall that lies on the floor. When you press on the mat, it plays music. This is a great toy for an infant or toddler who is having difficulty in learning to roll over. You can practice helping them roll over and when they roll, they will be rewarded with music. Dear Son enjoyed this toy.

Musical toothbrush-Disney and several other manufacturers make a musical toothbrush that is great. I never used them for brushing teeth though. I used it to occupy Dear Son when he was getting a lab test or a shot. The song usually lasts three to five minutes or so, just long enough to keep his attention on the music and by the time the song is done, they have completed the shot without any crying. For Dear Son, he loved music and attended to things he heard vs. things he saw. The small size of the toothbrush made it great for taking along, as opposed to the size of a regular musical toy. These can also be used for tooth brushing however I tended to prefer the Oral B types for that.

Stocking Stuffers- Some great stocking stuffers include:

-Slinky-because it doesn’t take much hand control to get it to roll over.
-Bubble bath.
-Bath paints-you can squirt it on the child and write his name or “I love you” on his chest when you give them a bath. The color makes it fun.
-Other fun gifts ideas include movie gift cards, museum gift cards or in our state, we have a wonderful Arboretum with some fantastic trails. A membership card is a great gift.
-Babysitting coupons so the parents can go out to dinner is always appreciated. So often with Special Needs children, none of the family wants to babysit since they are afraid or it’s too much work. While that may be true, there is often a time when the child is sleeping, that the parents can go out for a quick dinner.

And the best gift of all-a note from Santa! When my son didn’t hit any milestones his first year, I was devasted. I had nothing to write in his baby book. I decided to write him a letter from Santa every year and include in it, the two or three things that he did accomplish. Santa would tell Dear Son how proud he was that he was able to work so hard and accomplish these things. The letter would be written on construction paper, in crayon and end the same way, “All my love, Santa”. I would roll up the letter and put it in his stocking. He loved to sit on my lap while I would read the letter.

These are my absolute best toy/gift ideas for Special Needs Children.

12/20/10-Recently, I compiled a list of toys/gifts for special needs children. Click here to see them. I will also tell you why I think a particular toy is good for these kids as well as tell you how the child will play with it and/or what to look for in a particular toy. I have included links to Amazon so you can order it and have it delivered to save you time from having to go out. I will be adding additional items throughout the year, that I think would work for these kids. Please be sure to save this link for all future gifts (both birthday, Christmas and otherwise).

Living a Nightmare, Hoping for a Dream

Dear Son was in elementary school when I think it was the hardest. I would look out across the street at my neighbor’s children, the oldest which was about the same age as Dear Son. His white blond hair would catch the light as he played about the yard. He was 100% All American boy. I remember as a toddler, he’d be taking the ball and passing it through the basketball hoop. As he got older, he’d think nothing of jumping in a pile of landscape dirt, in his white t-shirt, jean shorts and gym shoes. I remember laughing to myself thinking that his mother was going to be so peeved when she saw that shirt; I know I would just die if Dear Son did that and messed up his clothes. Not really, of course. It was the kind of thing you would say if that was the worst thing that your child did and you prided yourself in keeping your kids looking nice. I would be thrilled if Dear Son could have played sports and jumped in the dirt pile. My own Dear Son would oblige me a few years later when he’d sit in the “dirt hole” and play. I never complained about his clothes.

My neighbor’s son would go on to play soccer, at a young age. He and some of the other boys in the neighborhood would play and the parents would come to watch the games on Saturday morning. My other next door neighbor was a coach and his son played as well so there was an instant bonding of all the parents of the kids who played soccer. That was only normal. I couldn’t help but be a little envious when I went to the neighborhood’s party, and the conversation would turn to soccer or to the other sports; I would soon be quiet, pretending to hone my listening skills, as the other parents would tell the sports stories. I wished how Dear Son could play. I have no doubt he’d be an All Star sports player, if only….. They didn’t know it but when he was sitting, he had a mean kick that would have scored a goal that the best goalie couldn’t block. He’d sit on the floor, with his left leg bent in, and some unsuspecting person would sit a few feet away and roll the ball his way, to be nice of course. Dear Son would kick that ball so hard that the impact of that ball would not only test their reflexes but take their breath away as it knocked them out when it landed in the pit of their stomach. I’d warn them but they wouldn’t listen until they were gasping for breath. My son had a mean left foot, for soccer that is, but the running part of his game, left a lot to be desired.

In elementary school, they continued to send the flyers home. They’d send flyers home every spring for Little League tryouts and during the year, we’d get soccer tryouts and just about every other sport imaginable. I tried asking them nicely not to send them home and even begged them at the annual IEP (Individual Education Plan) meeting to stop however they explained that it would be discriminatory to exclude the Special Needs children from getting the sports notices. Sometimes, it’s more important to be kind than to be nice.

Over the years, I got used to the fact that things would never be the way I wished or I had hoped for Dear Son. It takes time though. Dear Son was only two or so when one of the pediatrician’s was nice enough to tell me that Dear Son was never going to do more than a one year old, even as an adult. He is fifteen now, takes PediaSure via a g-tube and is still in diapers. He wasn’t that far off.

So the problem started with this blog. I began to see several referrals from an infantile spasm web site and decided to investigate. I joined the site, curious to find out where these referrals were coming from. What I found were many mothers, all parents of infants with infantile spasms, looking for answers to their child’s seizures. There were all different kinds of threads, some looking for answers on the best medications for their child, some looking for advice on what kind of diapers to get, and other mothers sharing their suggestions and tales of woe to help each other. When I say tales of woe, it’s not that they were exaggerating, but I couldn’t help but feel such grief and sadness when reading their stories. They really were tales of woe. I was instantly transported when I read their posts, instantly transported back in time to my days with Dear Son. It was the same feeling you get when you walk into a junior high school in any part of the country. No matter how well your life is going, when you walk into that junior high, you are instantly taken back to your junior high days, whether you want to or not. It doesn’t matter if your days in junior high were good or bad, it’s just the growing pains of being a teenager, days any adult would like to forget. You leave the building and you are back in reality, and glad too.

Then there were the e-mails. I began to get some e-mails from some of the parents asking me for answers. One of the parents said it was killing him and his wife thinking about their child’s future and wanted to know what I could tell them. I suddenly felt very inadequate and very protective at the same time. While I wasn’t an expert, I knew in my heart that nothing much would change. I thought back to what I wanted to hear when I was in their shoes and it was honesty. But my heart kept pulling me back. I remember too clearly the frustration of looking for answers in the early years and wanting the pediatric neurologist to put things in black and white which he would never do, just giving me shades of gray. I suddenly cut him enormous slack.

Then there was another e-mail from a mother begging for answers for her son who was having uncontrollable seizures, none of which could be stopped. She didn’t have access to the kinds of medical care we take for granted in our big cities, but she certainly would get four stars for trying to get answers. She even traveled out of state for answers, but they sent her son home to die, since there was nothing they could do for him. I asked a few questions, like how often they performed the EEGs and she said they were doing it every six months. I nearly choked. I wanted to tell her to pack every bag and get to the nearest big academic medical center and to move if she had to rather than lose that child. But I didn’t.

What was most striking though about all of these posts, was the love these parents had for their children. They were all looking for answers, willing to do whatever it takes to stop the seizures. The hardest part though, was the emotional part, seeing these parents grieve for the life that their children would never have, more often than not, the lives of their sons. They were in fact, living a nightmare and hoping for a dream. I remember those days too, when the only way out was a miracle. ‘Tis the season, for miracles. I’ll pray that they all come true.

The Last Thanksgiving?

You never really know if it’s the last Thanksgiving. For many years, I’d celebrate Thanksgiving with my family by either cooking a turkey or going to someone else’s home for the big day. The day would be filled with turkey of course, then lots of delicious food, too much to eat on any one day.

This year of course is different. Dear Son has made it through the MRSA pneumonia in May, lived through a relapse in June and celebrated his 8th grade graduation and his birthday last week. I have a lot to be thankful for.

I spent the last week thinking about his days in the Pediatric Intensive Care Unit (PICU) at Big Academic Medical Center and the hard work of Dr. B, who saved his life the day he was airlifted to Big Academic Medical Center from Local Hospital. I thought about how tirelessly the whole team worked for twelve hours straight to save Dear Son’s life. I thought about how she saved him, and kept him from dying on Mother’s Day and how she brought tulips in for all of the mothers in the PICU, on that day. It was at that moment, that I thought that perhaps there was hope, that my prayers were going to be answered on that day. And they were. Dear Son lived.

He lived to attend his eighth grade graduation just a week after he was dismissed from the hospital, only to suffer a suspected relapse of the MRSA pneumonia a week later.

He made it through the summer, and was able to attend high school in the fall. Imagine that, high school.

He made it through the fall to celebrate his 15th birthday last week.

He made it through yesterday, to get his fancy new tilt wheelchair, so he can sit up better and we can enjoy our walks.

Yes, I have a lot to be thankful for this Thanksgiving, even if he can’t eat turkey anymore. I suppose I can just say a prayer right before I pour the PediaSure into the feeding bag. I’ll thank the Lord for another minute, another hour and another day with Dear Son. I’ll kiss his beautiful face and get down on my knees and say thanks. Thanks for another holiday with the one I love. It could have been worse…if he died, I’d be remembering my last Thanksgiving with Dear Son and instead I am enjoying this one, turkey or no turkey. I think that is cause for a celebration.

News

Recently, I have received several invitations from various organizations regarding publication of my blog. This post is to notify you that I have recently accepted an invitation from the lead editor at Pluck Corporation to become part of BlogBurst, the world’s largest blog syndication network. Pluck Corporation operates BlogBurst, and distributes the content to media sites and newspapers around the world. Recently, Reuters has formed a strategic alliance with Pluck Corporation, to syndicate third party blog content as part of Reuters news and information service. Under the terms of this agreement, Reuters will offer BlogBurst’s syndication service to thousands of its media customers worldwide including The Washington Post and the Gannett newspaper chains, among others. You can read more about Reuter’s and Pluck Corporation’s agreement here and here. Here is an example from the Reuter’s website. I am excited about this new opportunity and would like to thank you all for your support and your interest in Dear Son.

Happy 15th Birthday to Dear Son!

Today is Dear Son’s birthday. To celebrate his birthday, here are fifteen things he would like to tell you about himself:

1) I love a party.
2) I am happiest when I am in a room full of people.
3) Most people compliment me on my blue eyes or my smile.
4) I love country music but my Mom doesn’t care for it. Gretchen Wilson is my favorite country singer. One of my teacher’s introduced me to her music.
5) My best friend in my talking Barney. He keeps me company.
6) I love going for a walk and swinging.
7) I enjoy sitting in my rocking chair.
8) I like it when people get in trouble. It really makes me laugh. I laugh really hard and loud and sometimes people think I am having a seizure.
9) I look exactly like my father but people tell me I have my mother's personality.
10) I love beautiful girls.
11) I am very extroverted.
12) I like it when my cat gets in trouble.
13) I smile when I meet new people.
14) I like listening to music on my headphones.
15) Animals love me.

*This is my favorite picture of Dear Son. It was taken when he was 13.5 years old when he could still sit up and hold his head up.

Killing Me Softly With His Song

We had been sitting there waiting for the doctor to come in. Dear Son, head down, hanging to the left as it always does now, as if his left ear were somehow sewn to his chest; he is quiet, ready to lie down, as he always is, after just a few minutes in the chair. My body was aching, my back throbbing and every square inch of my body hurting, like I had been in a terrible car crash, only there was no crash. Instead, it was as if all of my insides had been torn out from lifting Dear Son, just another casualty of his disease, kind of like a two for one deal.

The progress report had come home from school the other day. They described how Dear Son would fuss after just four to five minutes in his chair, when they wanted him to attend to something. I knew it had nothing to do with attending to the object or lesson; he was fussing because he desperately needed to lie down, unable to sit up any longer. It was just another sign, that things were never going to get better. I looked over the IEP (Individual Education Plan) and saw that none of the goals we had created last year, would ever be attained. I had no idea of what we should do. I knew really, that there could be no goals, because we were on the downside of the hill, so to speak, and just coasting to the finish line, the kind you never want to cross.

It was just yesterday morning, when he boarded the school bus, head down while the aide gently secured him in. Once boarded, the school bus drives around the bend, turns around, then passes me once again as it heads towards school. I usually wait, because I like to get another glimpse of Dear Son and wave to him as he passes by. It is doubtful he sees me though, because his head lies down on his chest, like a broken dolly, that a child has loved too much. The kind of dolly that is ready for the trash, but that no little girl, will ever part with.

The progress report, along with his ailing body, were just two of the examples I would talk to the doctor about. His seizures, were fairly well controlled with the medications, however his night breathing was another story. Night after night, I would lie on my bed, listening to the watery breathing, as the saliva settles in his throat and he tries to breathe through it. The breathing is loud and cuts through the night, easily heard, by ears of any age. I wait until he can breathe easily again; sometimes, I wait a long time. He is unable to control his own saliva anymore and it often backs up in his throat. I spray the Atrovent into his mouth, to decrease the secretions, but I am never convinced, it does much good. The breathing rages on, and I listen night after night, with the same uneasiness like a mother hearing her newborn crying in another room in the hospital, unable to save him from the spinal tap he is receiving. You never forget that cry, or the pit in your stomach, when you hear your baby cry. I remember that cry too, it’s all there, still fresh, as if sitting on the edge of my brain, waiting for a recall. Some nights, he and I get lucky, but other nights, it’s terrible and neither one of us sleeps very well.

The nurse comes in and sees Dear Son. She speaks softly and gently strokes his hair with her hand. She asks how he’s doing and I look away, avoiding any eye contact, so as not to cry, as I tell her he’s not doing so well. She knows this of course, but she’s being polite. I tell her about his birthday on Sunday, hoping to get a smile out of Dear Son. He loves a party and loves his birthday. He’ll be fifteen then, all but ten weeks of those, spent at Big Academic Medical Center, and with Ped Neuro Doc, who’s seen him from the beginning. It’s hard to believe, it’s been that long.

The visit begins and soon thereafter, they are checking the readings on his Vagus Nerve Stimulator. When it was implanted, Dear Son was so thin, that the device stuck out under his armpit, easy enough for a child to find. Today, the only telltale sign, is the scar that remains from the surgery. The nurse tries to hold the device, Ped Neuro Doc holds Dear Son’s arm up and away and I hold his head to the opposite side, to assist in the reading. I had offered to lift him onto the table however the doc thought we could manage by leaving him in the chair. The nurse drops the device and tries again repeatedly only she can’t get a reading and then can’t find her pen. I look at the doc and tell him it’s like a bad neurology joke. With that, Dear Son erupts in laughter immediately, his belly laughs only adding to chaos of trying to get a reading. Next the doctor starts laughing and soon we all are laughing, Dear Son leading the way. That’s the essence of Dear Son, always loving a good laugh and with a laugh that’s so contagious, you can’t help yourself. It’s the kind of story, you would tell at a funeral, at least that’s what flashed through my head.

The visit ends with a discussion of the surgeries. Tonsils and adenoids removed, to open the throat for breathing and a Nissen, to help with the reflux. I ask if it can all be performed before the end of the year, since we’ve met our stop loss. Our stop loss, is met every year now, as a formality. That’s when you know, the disease has you.

We leave the visit, my hands full with the required prescriptions and I get in the car for the long drive home. I wonder now, with all of the suffering, how much is too much. When do we stop? When does it end? It’s like trying to make your ride last longer at the amusement park. Somehow, it’s never as good when you do that. But when do you stop, that’s the question. When is enough finally enough? I look back at Dear Son, head on the pillow that’s become mandatory in the back seat, and see his gorgeous face. He’s quiet and sad, as he is most of the time now. I start talking about his birthday and the small party we will have on Sunday. I tell him that we will all be singing “Happy Birthday” to him and he begins to perk up. He just loves a party. I sing the song to him and when I get to the last line, I add on the “and many more” as if saying it will somehow increase his lifespan. After all, it’s only a matter of time, before the last candle will go out.

The Clothes Make the Man

I was driving around the block, in this new neighborhood, waiting to meet a friend when I came upon the stop sign. To my right, was the new high school. It was several stories high, all brick, and quite imposing. What I noticed most were all the steps to get in. The kids were all walking towards the school since it would be starting soon. It was a cool fall day and the boys were dressed mostly in jeans and short sleeved t-shirts or jeans a sweat jacket of some sort, unzipped and open. Many did not have on closed toe shoes. The girls were dressed similarly only the jeans were tighter and the t-shirts were smaller. They too, had a thin jacket, unzipped and open. The temperature was less than thirty degrees on this day. I thought about the clothes that I dressed Dear Son in today, a heavy fall jacket, long sleeve shirt and sweat pants. I looked around and couldn’t find any of the teenagers, dressed this warm.

I was taking in everything I could, as I slowly drove down the street. I was thankful I was in a school zone so I could absorb all of their actions. This was after all, the high school in our district, the one he should have gone to. I say should, because they denied his admission, even within the Special Education Cooperative, since they did not have the facilities to care for him. What they really meant was that he was too “disabled” for their school. Secretly, I was happy. I had been afraid to send him here, because none of the kids in his classroom would be here, nor any of his aides, nor any of the teachers that knew him. Heck, even the bus company changed. There would be no one that would know anything about Dear Son.

You can’t imagine how that would be. Some of the kids in his classroom could at least speak, and they could have provided some information about him but with no one, I worried about what might happen. Even with a new aide, you always wonder if they will be good to him and also if the school kids would be good. Most often, they just ignore these kids.

I was curious especially about their clothes. One of the advantages of special needs children, is that you can buy them whatever you like, at least if they can’t speak or express their wants or needs. With Dear Son, I could buy whatever I liked and did. I never had to worry about what the trends were at school and usually, he was one of the best dressed. He still fit in of course, but he looked great. I had a rule though, from the very beginning. I made sure never to buy any sweat pants of any kind. That was what disabled people wore and I certainly didn’t want him to “look” disabled. I returned every gift that he ever got, that included sweat pants. I was never ashamed of Dear Son but I loved to dress him well to not only celebrate him but also as a reminder that someone was at home who cared about him and that I was paying attention. Paying attention, meaning, if they were going to mess with him, I was going to find out and then they would have to deal with me. That’s always the fear of the parent of a disabled child, that someone will mess with them.

Dear Son is almost fifteen now and the past year or so hasn’t been kind to him. Not only has he gone through puberty and put on some weight with one of his meds, he can’t move much. This makes dressing particularly problematic since he can’t seem to help at all. I have had some training by the occupational therapists, but it’s still pretty difficult. It was this past year, that I finally broke down and purchased some elastic waist sweat pants. He has other pants certainly, some jeans and some khakis, however the easiest ones to put on and off are the sweat pants. I have to roll him from side to side to get on his pants and it’s nearly impossible to lift his hips off the bed to put on his pants. If I am trying to put on jeans or khakis, by the time I get them up on him, the zipper may be crooked and it’s hard to line everything up, which is where the sweat pants come in. Also, since he’s still in diapers, this is a major issue.

This clothing issue, is why I was so fascinated to watch the other teenagers walking to high school. Did Dear Son fit in anymore? How would he be perceived if he were “normal”? Not a fair statement at all since if he were normal, then he’d be wearing more fitted jeans, in different washes, like the ones that hang in his closet, but that he never wears. He’d also be dressing himself, buying some of his own clothes and certainly wouldn’t need any “extra” room in his jeans for his diaper or for his leg braces. It’s pretty hard at fifteen to buy jeans for him, since most of them are fitted, and don’t allow extra room for these things.

The clothing issue, is what prompted an e-mail from a friend of mine in another state. Her daughter is severely mentally and physically disabled and is extremely small for her age. She is eleven and size of a five year old. She participates in an online group and came across a message post one day where someone randomly asked why all disabled people were dressed like babies. She was crushed. They weren’t asking her, mind you, just asking a general question. She was in tears. She had just purchased a Disney t-shirt that she thought her daughter would love but after seeing the post, refused to dress her in it, because it might appear too “babyish”. Her daughter, wears a full body brace and requires elastic pants. She also wears a onesie cotton t-shirt with snaps, under her brace, to make it more comfortable, when she sweats. She e-mailed me to get my thoughts on this matter.

I find it ironic that mothers of disabled children worry so much about their clothing. We just want our kids to fit in and to be kids. It’s ironic because in Dear Son’s case, many of his high school peers wear pull on nylon sweat pants, and they aren’t disabled. Many normal girls also wear yoga pants so to dress them in pull up elastic pants, isn’t so horrible. I doubt normal teenagers worry they look disabled in sweat pants. Maybe we shouldn’t care so much either.

I thought about this as I dressed him for school today. In a defiant mood, I took his Lucky Brand jeans out of the closet and put them on. After several minutes, they were up. I reached in for the zipper to pull it up and there was the hang tag sewn next to the zipper. It said, “Lucky You”.

*Photo was taken in August of 2005 at age 13.5 years old. This is my favorite picture of Dear Son and is the last photo I have of him, where he was able to sit up straight, even if only briefly.

Pediatric Grand Rounds is up!

A special thanks to ex utero for hosting the 15th Edition of the Pediatric Grand Rounds this week. He did an excellent job. If you get a chance, you can check it out here. I'd also like to thank him for including me in this edition.

Dear Son Diagnosis Update

I met with Dear Son's geneticist last week. Previously, as I reported here, he had listed Dear Son's diagnosis as Partington's Syndrome which was caused by a mutation of the ARX gene. Since that time, they have learned a little bit more and they have dropped the Partington's Syndrome from his diagnosis. His diagnosis is "Cryptogenic Infantile Spasms caused by the ARX Mutation"; they do not have a formal name for it as of yet so this is simply how they have described the diagnosis. As he explained, the reason for the cryptogenic part is that frequently the seizures do not initially show up on the EEGs however at some point, the EEGs will get progressively worse until it will show that they are seizing all the time. The reason for dropping the Partington's Syndrome had to do in part with the dystonia-upon further examination, the hand movements are not dystonic in nature but different. I can't recall the precise term that he used however it he described it to the other two physicians that were present in our visit as a twisting backward of the hand/wrist. The picture above is an example of the unusual positioning of his hands and when his arms are down, the left wrist will remain flexed as positioned above but twist backward. Two years ago, we met with the geneticist and a movement expert and they videotaped Dear Son at Big Academic Medical Center to document the hand movements in particular that are unique to the ARX mutation. This videotape is still used today to educate other physicians on this disorder. I signed a new consent form so that this could continue to be shared and distributed.

He has also shared with me that in the total knockout cases of the gene, those boys are born without any testosterone. At the present time, there are only two places in the U.S. testing for ARX at the present time, Boston and Chicago. See the link above for more information on where you can get tested.

As I recall, there are still less than 80 cases total that the geneticist is aware of with the ARX gene however eight of the last ten cases tested positive with the same gene pattern as Dear Son. This brings the total number of cases for Dear Son's gene pattern to 13 or 14 cases.

Happy Halloween

In case you missed it, here are some photos of Dear Son’s Halloween costumes through the years:

Age 1-M & M

Age 4.5- The Scarecrow

Age 5.5- The Cat in the Hat

Age 6.5- The Chef

Age 9.5- The Tin Man

Age 10.5- The Jack in the Box
There are some gaps through the years, when he was sick.

I am not back to blogging but just an occasional post here and there. A new post, “The Swing” is below.

The Swing

Dear Son was quite young when we moved into our new house. He was three at the time and our backyard looked out over the pond. The back yard was empty, devoid of landscaping, devoid of anything, other than the new sod that had just been layed. But the view was spectacular. The aerators were located in the middle and far ends of the pond and our house was directly even with the center of the pond, so we could see the water rising up high into the air and even better, hear it settle back down into the pond. It was beautiful and tranquil at the same time. You could see the pond from nearly every room in the house, which I loved. The bay windows in the kitchen allowed for a panoramic view when you sat at the kitchen table, regardless of where you were sitting.

Over the next year or so, I purchased a rather large sugar maple, that had to be planted, because it was so big we could not do it ourselves. The sugar maple sat half way between the back of the house and the pond, so it would grow and provide some much needed shade to protect us from the hot west sun. The tree would come to be one of my favorite trees, especially in the fall, when the sun would rise in the east and shine down on the bright orange colored leaves.

At the back of the yard, was the new swing set. It consisted of very large chunks of cedar bolted together. We decided to make it a little wider than most, so that one part could hold a double swing and the other side would be for a special swing that was just for Dear Son. The swing was expensive, as most pieces of orthopedic equipment are, and was $600. It had a high back which he needed for support and a safety strap to hold him him. But it was worth every penny, to see Dear Son laugh and smile as he would swing.

I’d take him out to the swing every day after work. He’d start yelling and laughing, getting louder the closer we got to the swing. Once I positioned him in the swing, he’d quickly proceed to make quick work of his gym shoes, flipping one off followed by the next one in rapid succession, flying high in the air, and watching them fall. Then he’d shuffle his feet as fast as he could, until his socks would fly off of his feet, then his mission was accomplished. A huge grin would settle in over his face, almost as a punctuation mark, emphasizing his glee.

I would push him forever and he would laugh. Sometimes, I would sneak over the Rose of Sharon, located directly south of the swingset, and pull off the large pink blossoms, or dead head them, in between the pushes. When he’d get tired of swinging, I’d take him out and he’d sit next to me on the double swing, me with my arm around him for support, so that he wouldn’t fall. I would sing to him or whisper sweet nothings into his hair kissing his head in between the words.

His birdie, Blackie, a red winged blackbird, sat on the swing set every day. This bird took a liking to Dear Son and would sit on his swing set every day, some times for hours on end. He’d fly over to the triple French door where Dear Son would sit every morning, then fly back and sit on the swing set, once Dear Son left for school. Sometimes, when Dear Son would swing, he would sit on the top of the swing set and sing a song for him. At least that’s what I would tell him.

I remember too the conversation with the physical therapist at about this time. When she heard I let him swing, she quickly scolded me and told me that “swinging would not be good for Dear Son” and then gave me her “medical” reason. I can’t quite remember the words she used, but only the fact that I dismissed her words in a heartbeat and told her so. I told her that Dear Son is happy and smiling when he swings and that anything that makes him happy or makes him laugh, we are going to do “more of” not less of. It was the last time, we went to her.

I sold the house a few years back and moved closer to my job. Our new apartment was located on a golf course and had a clubhouse and double swing that looks over the pond. We quickly made use of the new swing.

We walk six months out of the year, from March through October typically, and all of our walks would start and end with a stint on the swing. Typically, we’d sit there and swing and then after five minutes, Dear Son would start to scoot off the swing, letting me know it was time to go. I’d put him back in the wheelchair and we’d walk a few miles and then finish our walk on the swing. He’s swing for five minutes or so, then try and scoot off, to let me know it was time to go home.

Over the last year, we didn’t walk very often. He didn’t have much physical strength to sit up in the wheelchair and without a tilt wheelchair, I couldn’t tilt him back for more support. He also grew a lot this past year and has gotten quite heavy. Last Saturday, I took him out for our usual walk. As we got closer to the swing, he began to smile and then to vocalize. I pushed the wheelchair over the fresh mulch and attempted to lift him. With his down coat on, I could hardly get my arms around him. The weight of his coat and shoes put it over the edge and I barely managed to lift his 145 pounds into the swing.
With that lift, I sat him on the wooden swing, tucked my arm around him for support and told him that this was the last time. This would be the last time that we could swing because I could no longer lift him into the swing. I told him I loved him and that I was sorry, sorry that we would no longer be able to do the one thing that he loved so much. He looked me in the eye and wouldn’t break the stare. I knew he understood.

We left the swing that day and didn’t look back. The days are getting colder now and there aren’t too many days left that we can walk anymore. I wonder though, how many more things, he’ll have to give up because he can’t do them or because I can’t do it. There’s not much left.

When Dear Son was a young boy, I used to write him a letter from Santa every Christmas. In that letter, I would write about the two or three things that he was able to do that year. Those would be the highlights of the letter. While other mothers were checking off all of the boxes in the baby book, I decided to pitch the book and record his milestones differently. I would write this note on a sheet of construction paper, always in crayon, and always rolled up in his stocking. I would pull out this letter and read it to him every year, while he would sit on my lap. He loved that note. Every note was signed the same way, “All my love, Santa”. I continued this tradition every year, and he always looks forward to it.

So this year, he’s lost his ability to eat by mouth and must be fed through his feeding tube. He is physically weak and now he can no longer swing. What more does he have to give up before it’s just too much? And now that he’s doing less, and giving these things up, what on earth will I write to him? Somehow, saying, “remember when” just won’t cut it in the letter.