High Deductible Medical Plan Review

I have just finished the first four months of a High Deductible Medical Plan. Since there is always a lot of discussion around this type of plan, I thought I would share my thoughts with you

To give you some information, Dear Son is covered under a High Deductible Medical Plan via my ex-husband’s employer. There were two plan options to pick from: Option A-a medical plan with minimal benefits or Option B-a High Deductible Medical Plan with more benefits. We chose Option B. I should also tell you that despite all the handouts from the employer promoting this plan, once he was enrolled in the plan, it has been virtually impossible to get information; it’s hard to get information from the employer, the insurance company and just about the plan in general. I admit I don’t know much about these plans however I should tell you, that I probably have more experience than a lot of people with medical benefit plans, for reasons I won’t explain here. I should also tell you that my ex-husband helps out a lot with supporting Dear Son but the medical expenses of the last few years have left us both struggling.

Dear Son’s medical needs include: six seizure meds (he has intractable seizures and a VNS implanted), two GI meds, uses a thickener for liquids to prevent aspiration (he aspirates liquids when he drinks), has a feeding tube, wheelchair, AFO’s (leg braces) and is incontinent. He can not walk, sit up, roll over, talk, go to the bathroom, feed himself and his hands/arms do not work so he can not get himself a drink or hold a glass. He is dependent on me for all daily needs.

Here’s what I have learned and experienced so far:

• High Deductible Medical Plan-The concept sounded o.k. The plan was the employer and employee would both donate money into a Healthcare Savings Account, also known as an HSA. The money they would both donate would cover your “high deductible” and after that was met, the plan would pay 90%.

• Reality: Yes, the employer donates money however in his case, they don’t donate it all at once. The employer staggers the donation. Also, the employee is allowed to withdraw money up to the amount that he has contributed to date. If your expenses go over this amount, you can write yourself a check for the amount you coughed up when the money is available. Follow along and I’ll explain when I get to pharmacy, how this is a problem.

• Benefit-Durable Medical Equipment-The new limit is $2,000 a year. In his prior plans, there was not a limit for DME.

• Reality#1: Dear Son needs a new tilt wheelchair at a cost of approximately $10,000. The plan doesn’t come close to meeting his needs.

• Reality #2: Dear Son’s leg braces (AFO’s) cost approximately $2,200/year.

• Benefit-Private Duty Nursing-In the past, we have had Private Duty Nursing, up to $1,000 per month as a benefit.

• Reality-There is no coverage at all. Who can help me with Dear Son’s needs as they get more demanding?

• Pharmacy-This was by far my biggest headache to date. The materials state that you can use a mail order pharmacy to get a discount on the prescription drugs. They also give prescription drug calculator to figure out the costs and show you how much it would cost for a prescription. For example, if you want to look up a drug, you need to know the name, strength, and quantity per month.

Under the PPO plan, I paid $20 for a one month supply at a local retail pharmacy OR $20 for a “three” month’s supply via the mail order plan. This is how all of the mail order plans have worked in the last ten or more years that I have been using them. You pay a one month co-pay for a three month supply of medicine.

So, let’s illustrate what happened to me using one of Dear Son’s seizure drugs, Keppra as an example. When I did the prescription drug, estimator, I typed in Keppra, 500 mg, 120 pills and the cost was $355.53 for a “one” month supply at a “retail” pharmacy OR $253.90 via the mail order program.

So, what I thought would happen was that my cost would go from $20 to $253.90 with the mail order plan for a 3 month supply OR I would pay $355.53 for a 1 month supply at the local pharmacy.

• Reality: What really happens is that you pay for all three month’s worth of medicine. So the cost for this one medicine was really $830.24. What they don’t tell you in the brochure, is that with the new High Deductible Medical Plan, you pay for “three” months worth of meds at a “discounted” price.

To illustrate, in 2005, I paid $141.00 for three month’s worth of all nine medicines. In 2006, those same medicines cost, $3,193.07.

This was quite a surprise. I thought they were going to cost, $995.79 and they were really going to cost $3,193.07. My actual costs were actually a little higher due to some increases in the medicines. I also learned, that it was cheaper when you used the correct strength of a medicine. Let’s say you were using a 500 mg tablet but your doctor increased that amount over time and you were taking 1000 mg in the morning and 1500 mg in the evening. It would be cheaper to purchase 1000 mg tablets and then cut one of the pills for the 1500 mg.

Now, once I figured out how much these were going to cost, I had to go back and re-calculate all of the meds based on the amount of money that was going to be AVAILABLE in the plan.

What I ended up doing, was counting out pills for each of the medicines and staggering when I submitted them. Ped Neuro Doc also generously helped out by giving me samples of two of the most expensive drugs.

It also affected how the physician did his job. When Dear Son was having more seizures, we had to work together, to figure out which meds he could increase based on which ones I could afford. I don’t want to start getting in the way from how he practices medicine. I want him to recommend what is best for Dear Son, not have to second guess every medicine change based on this health plan.

What I learned:

1) If you can avoid the High Deductible Plan, do it. Pick any other plan, if you can.
2) Watch out for the pharmacy.
3) HAS’s really benefit the employer. Flexible Spending Accounts work much better but those are not an option under the High Deductible Medical Plans. The reason that I prefer FSA’s is because when you put money into your account, you can deduct the entire amount on the very first day of the plan. Let’s say, for example, you donate $2000 of your wages in an FSA that will be deducted in 26 pay periods. On January 20th, you have an bill come in and you owe $1800. With an FSA, you can pay $1800 out of your FSA on that day. With an HAS, you can only withdraw the amount that has been deposited in your plan.
4) The benefits are a LOT less, at least in my case.
5) This plan is better than no plan but it does not in any way that I could tell, benefit the employee or consumer. This is strictly, employer driven.

I should also mention that proponents of these plans say that the purpose of these plans or insurance in general, is to protect against catastrophe and yet I am not convinced that these plans do this at all. These plans are also very different than the PPOs we have had previously. This plan BARELY meets Dear Son’s needs. If it doesn’t meet his needs, then who exactly is this plan designed to cover? I mean, the plan has ZERO private duty nursing. Does that sound like a plan that will cover catastrophic illness? The plan has a $2000 limit on DME? Does that sound like a plan that will cover catastrophic illness? And what about pharmacy? In a catastrophic illness, chances are you will need drugs and a lot of them. They will be expensive, there won't be generics and you will need them now. So how, will this plan benefit these people? Yes, once the deductible is met, then you pay your portion until you hit the stop loss, but really, how do you pay for that if you are on disability due to a catastrophic illness and you are getting only 40 or 60% of your salary?


So, my question is, why should people choose this plan? How can we pay for all of these services? Yes, I do have a secondary medical plan that is helping with some of these expenses however THEY contacted me and told me I should consider Medicaid because it offers private duty nursing, wheelchairs and prescription drugs have no co-pays.

So, who is this plan designed for? Someone who doesn’t have a medical condition, or are we just trying to drive people to Medicaid?

"Dream Mom" named Blog of the Week at Genetics and Health

In case you missed it, Dr. Hsien-Hsien Lei of Genetics and Health , named Dream Mom, blog of the week. Her blog is focused on helping you take advantage of the genomic revolution.

In the post, “About Dear Son”, I describe Dear Son’s diagnosis, and more importantly, the Aristaless gene, or ARX for short, that was responsible for his disabilities. Dear Son, was the first person in the world, to be diagnosed with one of the three patterns of the gene. I talk about how it was diagnosed, and include links to the geneticist, testing labs, and the original paper that was published in published in the November, 2002 issue of Nature Genetics. I hope this post raises the awareness for medical professionals, particularly pediatricians and neonatalogists, since they are at the front end of process, about the Aristaless gene or ARX as it is known. My post also defines the types of children, that should be tested for the gene.

I can’t begin to express my gratitude for this. I wrote the post, “About Dear Son” to illustrate how important it is to the parents, to finally know what caused their child’s disabilities. We live in a world where people are quick to take credit for all of the brilliant things that their child does and when a child is born with severe disabilities, you can’t help but take it personally, even if you did nothing to contribute to them. As a parent, your life is forever changed by this child and yet, your love for them knows no boundaries. I know first hand what a huge burden was lifted off my shoulders, when I found out what caused my son’s disabilities, and also when I found out it occurred at random, which is not always the case. I hope you will share this link with whomever you think would benefit.

Thank you, Dr. Hsien Lei, for all that you do.

Magazine Envy

My heart beat a little faster today after I went to the mailbox. Enclosed, was the May/June issue of Veranda. It was the first issue of my subscription but more importantly was the beautiful cover, done in creams, whites and pink, my favorite color.

I have always been fascinated with houses. I am not sure where this obsession came from, but it’s been there for as long as I can remember. I was a young teenager when I spent the summer building our house with my father. The whole family would take a six week vacation to Idaho; most of the family stayed with my Aunt and Uncle at their home and my father and I used to stay at the house we were building. Dad had spent twenty some years in the army and had been out for a few years now and was building this house for us. He drew the blueprints up himself and had done just about everything except the electrical work. We would never live there though-he died a short time later and the house was sold.

I have a couple of homes in my dreams. I designed all of them and each have certain things that love. There’s the City Home that looks over Lake Michigan, high in the sky. This home would have a southern exposure which would give me great view of the lake plus some of the city’s skyline. The drapes in my living room would be done in a deep orange silk taffeta, the color of rich coral, and would puddle on the floor. The color, would be a perfect contrast to the aqua blue color of the lake and make it pop. It would have a cream sofa, done in a textured fabric, along with maple hardwood floors and a custom patterned rug. It would have Waterford crystal lamps, with the pineapple base, that would flank the sofa. The highlight of this home would be the deck or outdoor space. It would be loaded with all kinds of white and peach geraniums, along with white furniture with a blue and white ticking for the covers. There would be other beach momentos out there, perhaps some old country signs and a table for those cool summer drinks. There would of course, be some kind of chair that rocked, even if it wasn’t a rocking chair, and of course an ottoman, to put up your feet. There would be seating for two and that’s it. Just enough to have some conversation, but not too many chairs that you attract the whole neighborhood. One of the highlights of the summer would be the fireworks over the lake, only to be outdone by Venetian Night, which is where all the sailboats are decorated in lights for the evening, and circle the lake. I would spend my days watching all of the brightly colored sailboats out over the water, doing nothing mostly, and then fall asleep dreaming of spending a romantic evening walking along the sand with someone I love.

The Country Home would have lots of acreage. It would have a name of course, on a wrought iron sign at the far end of the property. You would drive up a long winding road to the main house. Along the driveway, there would be giant lilac bushes that would ambush your senses with the magnificent color and sweet scent drawing you closer to the main house. It would include wide expanses of a perfectly manicured yard that looked out as far as the eye could see. Throughout the property, would be the flowering crab apple trees, some with white and others with pink blossoms. On the far outskirts of the property would be a white railed country type fence, the kind with three long horizontal beams that go across between posts. At the end of the yard, there would be some large weeping willows, trimmed straight across, which would surround a beautiful pond, that was only visible, if you walked out that far. There would be a cutting garden of course, filled with row after row of roses, my favorite flower, all ready for me to cut and place in every room of my home, but especially on the dressers near the bed, so that I could smell them every morning, as soon as I woke up. There would be an organic vegetable garden too, so that there would be nothing but fresh vegetables, an herb garden and some pumpkins too, so I could have a spectacular fall harvest display. A lap pool would grace the south side of the house, for the occasional visitor that swimmed. A brick paver pathway would meander throughout the property making it accessible for Dear Son, and on the one side, a large wooden swingset, for him to swing on. A large pink Rose of Sharon bush would sit next to the swing set.

You would be enticed to come indoors by the sweet smell of hot baked bread or fresh tollhouse cookies, all baked in my AGA stove. With several ovens, I could make some or all of them, along with fruit pies or fruit crisps, all made with the organic fruit from my own trees in the orchard, that also resides on the property. The kitchen would feature painted cabinets and lots of bead board, and of course a farmhouse sink that overlooked the large yard. The drapes above the sink, might be done in a toile fabric, complete with children or flowers in the scenes. It would include a huge pantry, for all my canning jars and supplies, as well as for my canned goods.

The Country Home would also include 5 inch wide plank wooden floors, in a light stain that would contrast with the white covered furniture that would be throughout the house. There would be a large fireplace, used every day in the winter, and home made quilts, one of which the cat would curl up on, and make the house look real cozy. There would be large windows in every room that would let in lots of light during the day and those cool summer breezes at night. The bedrooms would be simple in design, most likely white walls, with beautiful simple fabrics covering the windows, all of which were washable. The guest bedrooms, would be covered in brightly colored pastel fabrics, like the pink and white room, shown above. The bathroom, would have a claw foot tub and a pine three drawer chest or armoire, to store the all white terry cloth towels as well as hold the candles and the pastel colored bath salts, all requirements for a wonderful soak in the tub, which would look out over the property. The highlight of the Country House, would be it’s large porch. There would be a large front porch, complete with a bead board ceiling, a painted front porch floor, a ceiling fan and a porch swing. There would be French doors from both the living and dining rooms, that would open up onto the porch. White rocking chairs would sit on both the front and back porch and of course, pots and pots of gorgeous flowers. Near the back porch, would be all of the herbs, so that they would be close to the kitchen, for cooking.

Of course, I would have a Main House too, located in the suburbs, but that will have to be a topic for another post. For the time being though, unless I win the lottery, I will have to just look at the magazines.

There’s No Place Like Home

I was sitting in Dear Son’s hospital room as he lie sleeping in bed. It was approximately 11:20 a.m. and I was just getting ready to go down to the restaurant, which was located on the second floor of the adult hospital, to get a salad, when I heard the little boy go by. The little boy appeared to be about eight years old, was black, with a cute face and big brown eyes. He was sitting fully dressed on one of the hospital beds and was being wheeled down the hall by two uniformed men. His plastic bag, with the children’s hospital name on it, was at the end of the bed and contained all of his belongings. “You need to call my Momma,” he said. “Please, just call my Momma and she will come and get me.” “Where are you taking me?” “I want to go home.” His eyes were filling with tears and he could sense something was terribly wrong, but his Momma would fix it if they would just call her. His cries became more urgent and quicker and the two men pulled the bed down the hallway even faster, so as not to disturb the other patients, or children as they were, in the hospital rooms. “Please, just call my Momma!" he cried, “She will come and get me.” The little boy pleaded and pleaded with the men but they refused to look at him and said nothing.

It was quite disturbing to witness and I couldn’t get him off of my mind. A minute later, one of the sitters came in to relieve me, so I could go down to get my lunch. She sat with Dear Son on many hospitalizations, as was required, for the 24 hour video EEG monitoring, when I needed to get something to eat or to run home to do a load of laundry. I asked her what she knew about the little boy that just went by.

She told me his mother had signed papers this morning and he was being taken to a group home of some kind. I don’t remember her exact words because I was so shocked by the situation. It appears that he was mildly disabled and his mother couldn’t care for him. Apparently, there were both physical and mental disabilities, neither of which were apparent to me, as they wheeled him by. He was definitely not going home today, or tomorrow, or ever. Then she said something, that I will never forget. She said, “his mother didn’t tell him”. As hard as I could, I could not forgive her for this. I would like to believe that he was going to a better place but somehow, when your mother doesn’t want you and she breaks your heart, I don’t think that any place will ever do, no matter how nice it is. And not telling him, well it just doesn’t get any worse than that. I knew deep down, that this boy would re-play this scene over and over again in his mind, for the rest of his life, wondering, what he could have possibly done wrong, for his Momma to give him away.

So it happened again yesterday, at the grocery store. I was shopping with Dear Son as I occasionally do, pushing his wheelchair with my left hand and pulling the shopping cart with my right hand. When I was checking out, the cashier, who has seen me before, asks me again, “What are you going to do with him when he gets older?” It’s a question that is asked often when I am out in public and more frequently when they view me lifting him in/our of the car and into the wheelchair. They notice that not only can’t he walk, but that he can’t help me at all.

I am never quite sure what the quick answer to the question should be. In fact, I am not even sure I know the answer to the question. The fact is, I don’t know how I will manage him as he gets bigger but I do want to care for him for the rest of his life. I also pray a lot at night. I pray for the mental strength to handle whatever comes my way and the physical strength to lift him. I pray for a lot of other things but those two are usually at the top of my list.

I also know that these are well meaning people that are more curious than critical. If I were speaking with them one on one, I would ask them if they could give up their child. Most people could not do that. But it’s ironic how often we ask mother’s or parents of disabled children, this very question. It’s ironic how often the first thing to come into people’s minds, is to give these children away, or put them somewhere, as if they are disposable. They are not disposable because they have handicaps. They are not disposable because their parents are poor. They should not be given up because it’s hard. But the reality is that it is very hard to care for them. And exhausting.

What we should do, is work on making things easier for disabled children and the people who care for them. This benefits everyone. Here’s what we can do:

• We need to have daycare facilities that take all children, regardless of their disabilities. While legally, they can not discriminate, they often won’t take them. They don’t make money on kids like that, even if they had employees trained to care for them. Daycare for disabled children, is practically non-existant. We need to do this so these parents can work and take good care of their children and themselves.
• We need more Respite care so when their parents are tired, they get a break.
• We need to require hospitals or medical centers that have specialty physicians who care for these children, have suitable rest rooms so we can change them on a bed instead of on the bathroom floors.
• We need to have assistants located in the parking lots of our medical centers, so they can help us lift the children in/out of the car, making it easier, instead of paying people to say hello to us when we come for an outpatient visit.
• We need to allow parents to save tax free in a 401(k) for their disabled children’s retirement, in addition to their own retirement, so the children/adults will be less dependent on Medicaid, Medicare and other government programs. We also need to provide for medical withdrawals, based on need, for these 401(k) plans, in case of catastrophic medical bills. We could do this very easily, by using our current Social Security definitions of a disability, as a requirement for the new 401(k).

There are lots of other things that we can do, but if we start with these, then maybe, just maybe, the kids can go home, and sleep in their own beds tonight.

I’ll be home for Christmas…

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 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 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.

Word Cloud

Thanks to Fat Doctor for the nice link to the Word Cloud. My Word Cloud is pictured here.

About Dear Son

We had many discussions around the children. Not all at once of course, but peppered throughout our three and one half year courtship, conversations of children would come up. We had both wanted children and had talked about how we would get married, get a house and then start our family. I was a June bride and we lived in a duplex after we were married. Eleven months later we bought our first home. We worked together for a few years after that waiting until we had enough money, or so we thought, to start our family. Five years after we were married, I was pregnant with Dear Son.

Dear Son was born via C-section due to his large size. He was the product of a full term birth with Apgar scores of nine and nine. This was the first and last time he would score well on any standardized test. Over the next year and one half, Dear Son battled seizures and a host of issues that came along with them. I replayed the pregnancy over and over in my mind, to try to figure out what went wrong or how this could have happened. Interestingly enough, there were two other babies within a ten mile radius of us who had baby boys with severe seizures. I know this because the hospital where Dear Son was being treated, shared the names of these parents with me, both of whom were patients of Ped Neuro Doc. At times, I wondered if there could possibly be environmental factors that may have contributed to his issue. Other times, I would replay everything I ate during the pregnancy, wondering what could have caused Dear Son’s issues. I never drank during any part of the pregnancy, and if the truth be told, I rarely if ever drank. I had never taken recreational drugs in my entire life so I know that wasn’t a factor however wondering what caused Dear Son’s disabilities would often hover in my brain like a dark cloud over a beautiful garden.

When Dear Son was a year and half, I had my tubes tied. Not knowing what caused his disabilities, I was not willing to take a risk with a second child. We had genetic counseling and since Dear Son’s condition was of unknown etiology and there was no family history, that the odds of having another child with a disability was very small, although a little higher than the average population.

Perhaps one of the things that bothered me the most was “not knowing” what caused Dear Son’s issues. I prayed for answers.

In December of 2002, when Dear Son was eleven years old, my prayers were answered. One of the geneticists, who had recently discovered mutations in the Aristaless Gene, also known as ARX, was doing rounds during one of Dear Son’s extended hospitalizations. His research paper, “Mutation of ARX causes abnormal development of forebrain and testes in mice and X-linked lissencephaly with abnormal genetalia in humans”, had just been published in the November, 2002 issue of Nature Genetics, Volume 32. Upon a review of the health history, he noted that Dear Son had infantile spasms in the neonatal period of unknown etiology. He asked a few more questions, reviewed the clinic notes from Ped Neuro Doc and asked if he could test Dear Son. Dear Son was tested and tested positive for one of the three patterns of the gene.

Dear Son has Partington’s Syndrome, which is characterized by seizures, dystonia (movement disorder) and mental retardation (Dear Son is severely retarded.) While Partington’s Syndrome is not rare, his was caused by a mutation of the Aristaless gene or “ARX” gene for short. There are three patterns of the gene and Dear Son was the first person in the world to be identified with the first protein pattern, which is one of the three patterns of the gene. People with ARX are also born without any GABA. After his testing was completed, a Dear Son mouse was created to learn more about this gene pattern. The ARX gene expresses itself in vitro and while it is considered a “mild” gene defect as genes go, it can cause some of the most “severe” disabilities. This gene discovery was considered a major gene discovery and initially was thought to rival Fragile X Syndrome. Dear Son was tested for a mutation of the ARX gene because he had infantile spasms of unknown etiology, myoclonic seizures, mental retardation and dystonia, so they thought he might have ARX. Since this gene is X-linked, I was tested, but I did not have the gene; hence Dear Son’s ARX mutation occurred at random.

At the present time, Dear Son has intractable seizures, a Vagus Nerve Stimulator (VNS), is on six seizure medicines which I administer four times a day, and two GI meds. The ARX gene appears to have a GI component to it, but not much is known at this time. He has a feeding tube that is used primarily for meds at this point. He has no language and is not toilet trained.

Dear Son has endured numerous hospitalizations, including many in 2004 at which time he never fully recovered. In August of 2005, his pediatric neurologist, who has followed Dear Son since he was two months old, informed me that he has a degenerative condition. At his peak, Dear Son could walk with a gait trainer or on his knees. At the present time, he can not sit, stand, walk and for the most part, is bedridden.

Since the gene was discovered, they have identified additional cases. Unfortunately, the bulk of the new cases fall into the other other two patterns of the gene and only four to five additional cases are known that are identical to Dear Son.

If you would like more information on the Aristaless gene, or ARX as it is known, it can be found on Pub Med. I have yet to find this information anywhere else.

As a Public Service Announcement, I have asked the geneticist for some additional questions that you may find helpful:

Who should be tested for ARX?
“Infant boys with (1) infantile spasms, (2) atypical spasm-like seizures in infancy plus mental retardation(MR), or (3) MR with involuntary movements from early infancy. Older boys with (4) MR and involuntary movements, (5) older boys with MR and seizures, (6) girls with agenesis of the corpus callosum and seizures, and (7) boys with the XLAG syndrome (XLAG = X-linked lissencephaly with abnormal genitalia).”

How many boys have been identified with ARX to date (all three patterns)? Of that number, how many have been identified for each of the three gene patterns?
“More like two gene pattens. For the severe malformation (XLAG), it is about 30. For the infantile spasm and related group with no apparent birth defects, we are putting a paper with ~7-8 together, which when added to maybe 20 in the literature is also ~30. But this is growing fast. We are putting a paper together of ~5-6 boys with the identical mutation as Dear Son.”

*Note: If you would like any additional information, please e-mail me with your information at dreammom90@yahoo.com and I will respond to your request.

Photo is of Dear Son, age 11.

*On 10/26/06 I met with the geneticist. The Partington's Syndrome was dropped from his diagnosis and the new diagnosis is simply called, "Cryptogenic Infantile Spasms caused by the ARX mutation". You can read more about his visit here.

Once Is Not Enough

I was still sleeping when I heard his voice. At first, I couldn’t believe it. Was I still dreaming? It was the kind of voice that is forever embedded in your memory. It was soft, sweet and yet from the heart, the kind you never forget. Kind of like hearing a beautiful aria for the first time, the kind that sends chills down your spine. The kind where you desperately hope for an encore but it never comes. I waited quietly to see if I would hear it again, however it was not to be.

I remember the first time I heard his voice. It was years ago. He never talked at first. It seemed like I was talking to myself for the longest time however I knew deep inside, he understood. Our conversations, if you call them that, took place round the clock. Always one sided of course, but you could tell by his smile that he “got” it.

So today was wonderful. His voice was much deeper now, more manly. But oh, so sweet. It was only one word though, “Hi”. I called out to him and asked him to repeat it but I heard nothing. I waited some more and then asked again. Still nothing.

I got up and went to his room. There in his bed, was my son, smiling. He’s fourteen now. It’s been years since I’ve heard his voice. But this morning I woke to the most beautiful sound, “Hi”. I kissed him on the cheek and said the same words that I say every morning, “Good morning, beautiful doll”. I thanked him for saying “hi” not knowing how much time would pass before I would hear it again, if at all. Our days are growing longer and much quieter now since he sleeps most of the time.

His Dad and I speak daily. Sometimes we have the conversation on which life skills we wish he could have, if we had to choose only one. Talking and walking always come to the top of the list, but we can never figure out which one is more important. Would it be more important for dear son to tell us what he needs and wants or more important for him to run and play with the other boys? Our conversation is the type you have when the lottery stakes get really high and the news people ask people what they would do with the money if they won. Only it’s not a lottery and we are never going to win.

Sometimes, I dream of the conversation that my son and I will never have. I would love to hear about his day in the first person instead of reading the day’s events in the spiral notebook attached to the back of the wheelchair. Sometimes, when I am out somewhere, I envy sometimes the excitement of boys talking to their parents telling them about their day. I envy them when they are arguing too because some language is better than none. They don’t know it of course, because they are blessed. As it should be.


*Note-This is a rerun of a previous post and my personal favorite. Dear Son has been having a lot of seizures lately and I haven't had much sleep. Rather than leave you with nothing, I chose to rerun this one for those who may not have seen it the first time. A new post will return on Sunday.

Spring Hopes Eternal

Dear Son was only ten weeks old when we were referred to the Big Prestigious Academic Medical Center. I had finally asked for a referral there, after his condition kept getting worse and his arms were no longer moving. If I were to be quite honest, I didn’t have a clue what I was doing; I just knew I wasn't in the right place. I simply said that I wanted a referral to a “Children’s Hospital”. Heck, if the truth be told, I didn’t even know one existed. At about the same time, the nurse had been on the phone with the insurance company arranging for transport of Dear Son to the new hospital and the equally prestigious pediatric neurologists.

It was the first of what would be many visits. Dear Son had been admitted and we would spend three weeks there before they could give us a diagnosis and get some handle on the seizures. Within two days of the admission, he was started on ACTH therapy to stop them.

Upon release, I would visit this hospital every few days with Dear Son and after a period of time, his follow up visits went down to once a week and after several months, he would be scheduled every eight weeks or so. All of Dear Son’s visits would require walking down this one particular hallway that overlooked the courtyard. The courtyard, was nothing particularly special, except for the Red Bud tree that looked to be over a hundred years old. The Red Bud tree was enormous and dwarfed the courtyard. It provided beautiful contrast against the Gothic architecture of the buildings and did nothing for the grass trying to grow beneath it, which always looked patchy at best. Every spring, the tree would provide a spectacular purple color that would be hard to miss, no matter what your ailment. The hallway, had floor to ceiling glass windows that overlooked the courtyard. I always made certain to walk that way when taking Dear Son to the see Ped Neuro Doc.

Over the years, the hospital and the tree were like old friends to me. The bathroom, located on a lower level, had a window that sat on ground level, even with the courtyard. In the summer, it was always open and without a screen, well, you can imagine what might come in. I made certain never to leave my purse on the floor, in case there would be a “visitor”.

Dear Son had many ups and downs over the years but the tree somehow was reassuring to me. It always gave me hope when I had none. In the fall, the tree would lose it’s leaves and look dead in the winter and then in the spring, the tree would bud and these beautiful blooms would occur giving us spectacular color. I was always pleased when Dear Son’s visits coincided with the blooming of the tree. For some reason, the tree was something to look forward to and knowing that it bloomed every year, kind of reassured me, in an odd kind of way, that everything was going to be o.k. It also marked the passage of time.

Then, they built the new Children’s Hospital. The new hospital is fancy and nice. It has every amenity that you could imagine. As hospitals go, I must say that I love it. I have slept in enough hospitals with Dear Son that I feel I qualify as an “expert”. I stay with Dear Son during all of his hospitalizations, frequently sleeping on a piece of furniture that sometimes resembles a chair, sometimes resembles a cot but most of the time resembles what it is, a broken down piece of furniture that no longer unfolds into a bed. The new hospital had a nice bench that would open up into a bed and a bin to store the linens so the room could remain neat. The old hospital had a closet with a toilet, a sink and a bifold door along with a toilet paper dispenser that dispensed the tissue sheet by sheet; this was the washroom I used when I stayed with him. The bad news was that sometimes a cleaning person opened the door or the doctor would be standing outside the door while you were in the room. The new rooms have a refrigerator in every room, big flat screen televisions and a nice large washroom with a shower, complete with room to store your toiletries. This means that you don’t have to pack and unpack your bag a million times or parade down the hall at 5 a.m. without your make up to take a shower. But there is no tree.

The hospital faces another building so there is nothing to look out on. There is landscaping around the building however it can not be seen from the children’s room. Most of the time when you are in a hospital, things get better. For some children, they will never get better. And that’s where the tree comes in. The tree assures you that life goes on. It tells you that there will be a spring again. It signals a rebirth or a new beginning. And sometimes, that is precisely what you need to see. If I want bad news, I can get it on the big screen.

Grand Rounds is up!

Thank you to Big Mama Doc for hosting Grand Rounds, Volume II, No. 30 this week. Your hard work is appreciated! Grand Rounds is here.

Welcome oncRN!

Cathy posted a comment today telling me about a new medical blog that she discovered this weekend called, oncRN. As you may have figured out, this blog is about a woman who explores her life shaped by oncology nursing. She writes very eloquently; if you have a chance, check her out. oncRN is here.

Fast Forward

I remember the conversation as if it occurred yesterday. The physician, with his dark thick hair, freshly starched white coat that had his name embroidered in the standard maroon stitching, was in the hall of the Big Prestigious Academic Medical Center talking to a young couple. The mother, a young Hispanic woman, was holding her baby in this car seat type baby holder, that detaches for carrying. The physician recognized her and had stopped her in the hallway to ask how it was going with her Dear Son. The mother was all smiles and told him that things were going well. The physician, much wiser, knelt down by the baby, looked the mother in the eyes and spoke with her. He nodded while she told him how well things were going, but sat there quietly, intently listening, and ever so kind. The father sat quietly behind the mother, never saying a word. I was with Dear Son, adjusting him in his wheelchair, while finishing up one of Dear Son’s many tests. I was within earshot of the exchange.

The mother thought she was handling it quite well, I am sure, despite the fact that her son would have many disabilities, from what I could gather from the conversation. The baby, her son, looked pretty normal to a casual observer since the disabilities don’t become apparent to the outside world until you pick the baby up or they see that he can’t do something. That’s the beauty of the seizure babies, they can look so beautiful and so normal. Dear Son was a few years old at the time, and I distinctly remember the physician’s words while identifying whole heartedly with the mother. I could tell she was in love with her son, like I was with mine. I had also been in her shoes. You think you are handling it well, because you love your son and because there is not much else you can do. And yet, I understood that this conversation was much more than a “How are you doing?” The physician was looking at her life some twenty years down the road and knew full well all the hardships and bumps that would come along the way. I thought I knew too, but in hindsight, I had only touched the tip of the iceberg. Their conversation, would be stored in the back of my mind, and re-played from time to time, like it did on Saturday.

Saturday, was to be an exciting day. The Lions Club, as they do every year, invite all of the disabled children and adults in surrounding communities to a play at the local theater followed by a luncheon in the Grand Ballroom. All of the fees for the luncheon and the play are paid for by donations to the Lions Club. The event is pretty successful and is very nice. The Lions Club does a fantastic job of preparing for the event and making it a fun day for us. It is always appreciated. It is probably one of the few times that I go to an event with Dear Son, where it is “easy”. Easy, by definition, because they have a lot of volunteers that offer to push Dear Son in his wheelchair, up and down the steep ramp to the theater. The theater seats have been removed for wheelchairs. Children in wheelchairs, compromise only about 10% of the attendees, from what I could tell. The rest of disabled children and adults, had some stage of physical or mental disability. What was nice, was that this was a family event, so everyone in the immediate family was invited.

We get to the event and are welcomed by the Medinah Shrine Clowns and the Easter Bunny. The Lions President, works the room, as he does every year, making everyone feel welcome. But perhaps most striking on this particular day were the families. It was the first time that I actually saw the lives that they were living. It was just like the image of the physician talking to the young mother. I saw all of these families living the life with a disabled child and then as a disabled adult. I saw the children, I saw the struggles, and it was all the same. This was in striking contrast to the extremely elegant surroundings where eight five foot round chandeliers hung above us and ten smaller ones lit up the sides of the theatre. It was the type of surroundings that normally wouldn’t allow, anything but the “beautiful” people inside.

The play was a success, and just about the right amount of time, only one hour long, perfect for this audience, since many couldn’t sit still much longer. Lunch followed in the Grand Ballroom, which was filled with red, blue and yellow balloons commemorating this happy occasion. Lunch was served and the issues began. I attempt to feed Dear Son a hamburger knowing full well that he probably won’t chew it and the texture will be too much for him. He holds it in his mouth and refuses to chew, making a face and then holding the hamburger in his mouth for fifteen minutes before spitting it out. He refuses to eat anything there or even the yogurt and juice that I brought along. The little girl next to me, is dressed in a beautiful black and white top, with black beads hanging from the bottom of her top and her pants. She is all dressed in her finest, and looked beautiful. Her mother feeds her too and tells me how she needs a new “tilt” wheelchair but the insurance won’t allow it. She asks me how I lift Dear Son, since her ten year old, the one in the wheelchair, is now 85 pounds and getting heavy. The beautiful little girl was proud though, because she got to wear her “pretty” sandals, the ones she can’t wear every day because she has to wear the leg braces. The little boy sits across the table in his wheelchair, while his father feeds him, his leg braces hidden under the table. So all in all, same issues, different families to be repeated throughout the Grand Ballroom. There are many days were life is hard, but today was great. Great, because you get to relax and talk to other parents and children and great because the children are having fun and being normal. As it should be.

An Easter Egg Hunt, of Sorts

I thought it would be appropriate to celebrate Easter with a very inspirational story. This is the story about a young developmentally disabled young man, Phillip Reyes, 20, who is given a project at school, stuffing small pink and blue Easter bags with minature candy and bright yellow grass. According to the paper, due to his disabilities, his arms and hands often ignore his brain’s instructions, making every movement a struggle. The project was intended to be a one day project that would help him with basic motor skills and counting. He liked the project so much however, that he maneuvered his wheelchair over to the desk and with a grunt demanded more. As the bags began to pile up…well, you’ll have to read the rest of the story, here. See if you can find the “good egg” in this story.

Happy Easter!

If You Could Read My Mind

I had been avoiding her call for weeks. Yesterday, as I typed up my “To Do” list for the week, or my “Basic Weekly Plan” as I call it, her name reappeared. The issue that is causing this procrastination, are the transition plans for Dear Son after high school. The transition plan, documents the family’s wishes for their child’s future, when they leave the school system. She wants to know about my “vision” for my child’s future and specifically, “What do I want my child’s day to look like, when he exits the public school system?” From there, they will spend the next four years, developing his high school goals, around that vision.

It’s not that I don’t think it’s a good idea, but at fourteen, it’s a little late to ask me what my “vision” for this child will be. My dreams for Dear Son were buried a long time ago when I was picked up like Dorothy in the Wizard of Oz and tossed into the wonderful world of healthcare. As Dear Son lie bedridden, I find the calls for his future planning quite heartbreaking. But the breaking of a mother’s dream, was insulted by the school system, long before now. When Dear Son was in elementary school, I had to endure every school handout of fall football tryouts, along with basketball, baseball, soccer and every other sport you could imagine. In the meantime, I was still waiting for Dear Son to take his first steps, “alone”. Dear Son’s notebook, that was attached to the back of his wheelchair, was filled with these daily reminders, of what was never to be. I asked repeatedly for these not to be sent home to the Physically Disabled classroom or even just to Dear Son, however my request fell on deaf ears. It seems it would be “discriminatory” to “not” give each child the same information. Sometimes, it’s more important to be kind, than to be right.

My dreams for Dear Son are like a lot of Moms. To see their son grow up, date beautiful girls, have his first kiss, go to college, watch him get married in a church and have a family of his own. And in that order. I dream of my son doing what he loves and seeing the joy in his face. I want to be there when he buys his first home or has his first son or daughter. I want to be a Grandmother, of course. I want to see my son in my grandchildren’s eyes and see the world through their rose colored glasses as we make play dates in the park.

Instead, I will watch him deteriorate, doing less and less as the days goes by, instead of more. I will see the fire in his eyes slowly fade away and eventually burn out. I will be left with the ashes where a grand fire once was. I will watch his eyes when we are out somewhere, when he looks at other girls his age, and they ignore him like the plague. As handsome as he is, the normal girls have no time for him due to a nasty twist of the gene. If he was normal, these same girls would be tying up my phone lines, at all hours of the day and night. I will watch him on our daily walks around the golf course, on the jogging trail, as the other teenage boys run past him as they get in shape for their high school sports, never looking down at him in his wheelchair, but staring straight ahead. I will watch his eyes look up to them as they run by, imagining himself running beside them.

My dreams are different now and have been for some time. I want to take care of him at home, for the rest of his life. I want him to be comfortable in a sea of love and know that regardless of what parts of his body no longer work, that in his mother’s eyes, he’s everything she ever wanted in a son and that he will forever be the light of my life. I want him to know that there is no where else I would rather be, than taking care of him.

So tomorrow, I will make that call and tell her my wishes. And when I do that, a little song will play softly in the background, to the old Gordon Lightfoot song called, “If You Could Read My Mind” with the some of the words changed for my son. It would go like this,

If you could read my mind, Son,
What tale my thoughts could tell,
Just like a super hero story,
That all the young boys love.
And when you get to the part, where you can walk,
And you could then be free,
Then you would run and play.
And if you could, then I would cry,
Because my son, I’d be so glad for you.
But it is, not to be.

If I could read your mind, Son,
What a tale your heart could tell,
Just like a super hero story,
That all the toy stores sell.
And when you reach the part, where the heartaches come,
The hero would be me,
But heroes often fail.
And you won’t read that book again,
Because the ending’s just too hard to take.

Grand Rounds is up!

Grand Rounds is up today at Anxiety, Addiction and Depression Treatments. Thank you Jon for hosting us this week. The post you are looking for is here.

If you like that post, be sure to check out the “Good Reads” section. Thank you for stopping by.

Here For The Party!

Valentine’s Day was quickly approaching and I was running out of time. I had been looking for a gift for Dear Son but to no avail. I had been racking my brain for ideas but could think of nothing. Dear Son, does not like candy and most toys are out of the question due to his disabilities. At fourteen, he was growing up fast, but somehow I was having a hard time acknowledging that he was indeed turning into a man. Until Gretchen showed up.

I got him off the little yellow school bus, as I do every day, as precisely 3:00 p.m. Every day, attached to the back of his wheelchair, is his notebook from school where his teacher will typically write a few lines as to the activities that transpired that day at school. I read them every day at 3:00, right after I get Dear Son off the school bus. Our routine usually begins with removing his leg braces, taking off his shoes, giving him some juice, and then playing a few games of Silly Six Pins Bowling. It’s a bowling game with bowling pins that talk. Once you set the game up, the pins "talk" and "tease" you to get you to knock them down. When you knock them down and get a strike, a victory song plays. Dear Son loves this game and likes to knock them down with his head. He loves the victory song the most because they yell out the word, “Strike” and then proceed with lots of whistles and cheers. I give him some kisses on the shoulder and a pat on the back and he gets all excited. Normally, since he only knocks a few pins down, I will cheat a bit and knock the remaining pins down without him seeing me, so that he gets a strike and the victory song plays. After a few games of that, he lies down for a nap. Lately though, he hasn’t wanted to bowl and the strike song has not been working it’s magic. So I had to come up with a Plan B. Today, when reading his note, was something that I had seen a few times now, and had peaked my curiousity.

Dear Son had not been eating lately and it was becoming a problem. He had been having issues managing his saliva and would choke often when he eats or drinks. In the few months prior, a swallowing study had indicated that he was aspirating small amounts of food or liquid at meal time. I immediately added a thickener per the therapist's instructions. So the note at school, was more of the same. Dear Son would refuse to eat or eat a small amount and then stop. He seemed upset and they would lie him down and hook up this music to his switch, which was located near his head. When he turned his face, the switch would be activated and the music would play. The teacher stated that once he heard the music, he quickly forgot about the problems at lunch, and was all smiles.

After a few notes from his teacher regarding this music, I was dying to find out what it was they were playing, that made him so happy. I called his teacher and she remarked to me that she didn’t know that he liked Country Music so much. “Yes, I said’, vaguely remembering how much he liked it. I asked her what it was that he liked so much. “Gretchen Wilson”, she replied. “The CD is called, “Here For The Party”.” I laughed when I heard it because it seemed to fit perfectly with Dear Son. As a huge extrovert, there is nothing he likes more than a good party, specifically a birthday party, filled with lots of people and lots of celebration. I rushed out to buy the CD.

I got to the music department and located the CD quickly. The CD was filled with such gems such as, “Here For The Party”, “Redneck Woman”, “When I Think About Cheatin’”, “Homewrecker” and “The Bed”. I quickly put the CD down. These did not seem to emulate family values or at least, my family values. And definitely, not appropriate for a teenager.

Over the next few weeks, I would pass by the music department again and think about Gretchen. I would pick up the CD, read the song titles and place it back in the slot. Dear Son was doing poorly by now and had not been smiling. It was breaking my heart and I was searching desperately for something to cheer him up. So, I stopped by the store and paid $12.88 for Gretchen.

Dear Son came home from school and we did our little routine. I set him on the bed for his nap and put on Gretchen to cheer him up. The CD came on and she began singing, “Here For The Party”. Dear Son’s face lights up, he squeals as loud as can be, and he's smiling ear to ear. I haven’t seen him this animated in years. He continues to scream louder. I cringe as I hear the lyrics. Gretchen belts out Redneck Woman and is soon singing the chorus:

“Well, I’m red-neck woman, I ain’t no high class broad,
I’m just a product of my raisin’ I say hey ya’ll and hee haw,
And I keep my Christmas lights on,
On my front porch all year long,
And I know all the words to every Tanya Tucker song,
So here’s to all my sisters out there keeping it coun-try,
Let me get a big hell yeah from the redneck girls like me.”

As for Gretchen, will we keep her?

Hell yeah!

Match.com

It was a few weeks ago, just before Valentine’s Day that I was getting Dear Son off the school bus when I happened to ask Patrick about his plans for the weekend. Patrick , as you many of you know, is the young man who rides the little yellow school bus with Dear Son and with whom I talk to briefly, every day, while waiting for the bus driver to get Dear Son off the school bus. He informed me that he was going to see, “Disney Stars on Ice” on Saturday evening. I told him that sounded great and asked who he was going with. I expected him to tell me that he was going with his mother and father however I was wrong. Patrick said, “I am going with my girlfriend”. His words hit me like a lightening bolt. I am not sure if I was more surprised that he had a girlfriend or the fact that I don’t have a boyfriend or what. I suppose if I were to be truthful, it bothered me because it means these kids are old enough for “dating”. At 14, I was just getting used to putting deodorant on Dear Son before school and shaving his face every three weeks. And now, these kids are “dating”?

My first hint that I might have something to worry about came when Dear Son was just three years old or so. By that time, he had outgrown a stroller and was in a wheelchair. I would walk him along the Riverwalk in our neighborhood, which was a paved walking trail that ran along side the River, that meandered on the edge of our subdivision. It was a beautiful area, full of trees, where the little boys would often go fishing. Inevitably, I would run into a neighbor and start chatting. Dear Son, if he found the woman attractive, would flip off his right tennis shoe. He could not talk of course, but that did not make a difference. He would look at her with those big blue eyes and smile. My neighbor, would then comment that he lost his shoe and proceed to put the shoe on Dear Son. Dear Son would delight in this phenomenon, so much so, that he would repeat the shoe toss, about ten more times, each time delighting in the fact, that the woman would give him her undivided attention and dote all over him. He was very selective however, and it was not all of my neighbors. Only the women who wore perfume or were blond. I had soon learned that the shoe toss, was his “pick up” line.

Then there was “R”. He was only ten for goodness sakes when his teacher informed me over a parent teacher conference that Dear Son had a girlfriend. Thank goodness I was sitting down. She was the little girl with the crooked bangs in Santa’s Workshop which I referenced in yesterday’s post. She was a small little thing and when I came to the classroom, she quickly grabbed my hand to hold onto it. It was so tiny but even more amazing was how soft her skin was. It was the softest skin I have ever felt. The teacher informed me, that “she” played matchmaker after seeing the kids enjoy each other’s company. I was not sure that I thought that matchmaking was such a great idea at that age, but I soon decided that if Dear Son was happy, I could live with it. After all, I was pretty safe since Dear Son couldn’t walk, use his hands or talk. Right? It wasn’t until they had a Going Away Party for Dear Son at school when I learned that the relationship with “R” was more serious than I initially thought. They created a photo album with memories for Dear Son. Here was Dear Son with “R” at his birthday party in November, here was Dear Son with “R” for Valentine’s Day (pictured above along with their classroom aide) and here was “R” sitting on his lap for St. Patrick’s Day, etc, etc. Apparently, this relationship had gone on for some time.

Currently, there’s “J”. “J” is a quiet young woman with doe like eyes and long light brown hair, in his classroom. She rides the little yellow school bus with Dear Son and always watches him get on and off the bus. The wheelchair ramp is located in the rear of the bus, which is behind her seat. Most days, Dear Son’s head hangs down when he's sitting in the wheelchair, because he can no longer support it, and because he needs the new “tilt” wheelchair for support. However, that does not seem to deter “J”. In the morning, when she sees him, her eyes “lock” into position and she never takes her eyes off of him until he is on the bus. I always call her the exorcist, because her head spins around to stay focused on Dear Son, while the bus backs up into the driveway. She never says a word though, and I am not sure if she even speaks. I was getting him off the school bus the other day though, when the bus driver informed me, that “J” was making eyes at Dear Son. He was quick to point out though, that Dear Son was giving her the “eyes” right back. I was glad it was a short bus ride home.

What is most amazing about these teenagers though is that they “have” girlfriends. I see the ads for eHarmony all the time on television and for Match.com on my pc and they are always trying to help you find a mate or even better, a “soulmate”. Dr. Phil has now hooked up with Match.com to help us. We are able bodied people, we can talk, we can walk, we can do everything and yet we are so handicapped when it comes to relationships.

These kids, have some or none of these things. They can’t talk, they can’t walk, their hands don’t work, they can’t feed themselves and yet they are happy. You love them because they delight over the smallest things. When they are happy, you feel their joy in every part of your being. When they are sad, their tears will break your heart. But they live every day, “in the moment”. Their relationships, are based on who they are and trust. There are no false pretenses, no games, nothing. Their relationships do not have any boundaries because they don’t understand boundaries. They have found a way to connect with each other and to enjoy each other’s company. They live every day from the heart. Hmmm...maybe that’s the secret.

Christmas Blessings

Fat Doctor's post the other day, where she referenced attending her nephew’s school to see his program, The Little Red Hen, reminded me of one of Dear Son’s school programs.

Every December, his 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.

The Hole

Dear Son was ten years old when he attended his first daycare. I came to pick him up on this summer day, like I always do, just minutes before 6:00 o’clock, which was closing time. The daycare center was located in a strip mall near our home, however behind the strip mall, was a huge grassy area where they would take the children to play on sunny days like today. All of the kids would be running around, playing and having a ball. Dear Son had a wheelchair however, which they used to transport him to the grassy field. At that time, he could maintain a sitting position and walk on his knees. While he could not walk upright, he could be quite fast on his knees.

The sun was bright and the kids were yelling outside and having a good time. At one end of the grassy area were a few trees and a huge dirt hole. Dear Son liked to walk on his knees and sit in the dirt hole. The dirt hole or hole, as I liked to call it, was really just a large circle of dirt approximately 5 feet in circumference with a slight indention in the center. Every day, when it was nice, they would bring the kids outside, take Dear Son out of his wheelchair and he would head for the “hole”. When he arrived at the hole, he would sit on his knees in it. Sometimes, he would lick the dirt and if I saw it, I would have a heart attack and ask him why he was in the dirt. Other days, I would pick him up and he would have some mud on his face; evidence of the dirt pie he just ate. But he was happy. He would sit there in his aqua blue cotton shirt and the sun would hit his blue eyes and they looked as blue as the water at Bora, Bora. His eyes were beautiful against his skin which was slightly tan from the sun providing a beautiful contrast next to his nearly jet black hair. He would beam from ear to ear when he heard my voice and would spin around in the dirt to look at me and then race as fast as he could on his knees in the other direction, teasing me. I would come up to him and throw my arms around him, kiss his head and he would give me a big belly laugh. The women who owned the daycare center would apologize every day that he got dirty since his clothes always looked so nice. I told them that it’s o.k. that he gets dirty, because he’s having fun. I am not sure they believed me, but it was true. As for eating the dirt pies, no, now that I didn’t like.

This was the first time in his life that he got dirty playing. They didn’t know that of course, because they had never been around kids like Dear Son. When you can’t run or walk, there isn’t much opportunity to get your feet dirty or wear out the knees in your pants, so your clothes always look nice. The worse thing you could do was to run over a mud puddle in your wheelchair however that would not be of Dear Son’s doing because his hands did not work so there was no need for an electric wheelchair when a manual one would do. Because he has no use of his hands, it’s not like he could run cars over in the dirt and crash them, as other boys do. There’s also no baseball to throw, no dirty hands and no dirt on his pants from sliding into home base, like I used to do. So eating the dirt pie, is nothing more than doing what the other kids do, playing.

Fast forward four years to today. Dear Son can no longer sit, stand, walk on his knees or do much of anything else. He is bedridden and spends nearly all of his time lying down watching t.v. or will listen to music that I put on. I have to wonder though, if he remembers the dirt hole, the feel of the dirt on his knees, the taste of dirt in his mouth, the sound of the kids yelling. When adults get old, they remember the good times but what happens to kids when they are dying? What do they remember? The dirt holes? And for that, I am glad I let him get dirty. The dirt hole, that was the good old days.

Grand Rounds is up!

Grand Rounds is up today at UroStream in a very creative format. Thanks to Keagirl for hosting this week. Tip: When you click on the phrase, "in a wheelchair" it will bring you here.

If you liked that post, be sure to check out similar posts in the "Good Read" section on the side.

Finally, if you get a chance, be sure to check out the new "Scarecrow" photo attached to the "Not So Scary" post. It will make you smile.

Spring Cleaning

I picked up the latest issue of Country Home yesterday and just inside the cover were tips on “Spring Cleaning”. This, for those of you who don’t know, is an annual ritual, developed by our Grandmother’s and passed down to our Mother’s, of a non-stop cleaning marathon where you wash and clean every nook and cranny in your home. This was a great thing until the Women’s Movement. I call it the Women’s Movement because growing up our Mother’s didn’t work or most of them didn’t anyways. It wasn’t until the Women’s Movement that women began to work full time. Young women today, are probably scratching their heads wondering what the heck I am talking about because they are most likely the product of “working” mothers.

So enter Spring Cleaning. If a working woman doesn’t have enough to do, she has to do Spring Cleaning. Apparently, it’s not enough that a woman work, be a wife, be a mother, pick up kids from daycare, get their meals, take the kids to their extracurricular activities, keep a good house, make time for friends, exercise, take care of themselves, make time for Husband, keep up their education, keep up on technology and of course, network, in case they should ever lose their job in this topsy turvy corporate world. But they get to Spring Clean. Yes, many women have maid service today but that’s not Spring Cleaning.

I don’t Spring Clean anymore. It’s not that I don’t have a clean home because I do. Not only do I have a very clean home, I have a very organized home, with a place for everything and everything in its place. I don’t have to Spring Clean anymore because I found the Fly Lady. If you don’t know who she is, you can check her out at http://www.flylady.net/pages/FlightPlan.asp

I found the Fly Lady last summer when I was on the internet looking for a “cleaning system”. What I was looking for was none other than a “cleaning schedule”. It’s not that I couldn’t make my own, but the Martha Stewart in me kept crying out for a schedule. The Fly Lady has it down.

The Fly Lady’s system has you do four things: 1) Shine your sink. 2) The Home Blessing Hour 3) The Basic Weekly Cleaning and 4) Zone Cleaning. Shining your sink is her starting point. She has you start by cleaning your kitchen sink and making it shiny. You do this daily. Next is the Home Blessing Hour which consists of six tasks you do once a week, preferably on Monday. The Basic Weekly Cleaning are tasks that you do in each room weekly. I have separated these tasks by the days of the week. For example, Monday is the bedrooms-change sheets, polish mirror, dust and vacuum. Tuesday is the bathroom, etc, etc….Your Zone Cleaning are your “Spring Cleaning” tasks except that you do all of them monthly. She designates each week to a different zone which are on her web site. I have all of my lists in a spreadsheet that I print off every month and place in my Control Journal or Home Organization Notebook as I like to call it. We just finished the Living Room this week. These are your deep cleaning tasks. You supplement all of this with your morning and evening routines. Your morning routine consists of all of the things you normally do in the morning, plus the basics like the “swish and swipe” (toilet cleaning). She also has umpteen de-cluttering missions but I never had to do those since I was already organized and don’t have any clutter. You also have your “Basic Weekly Plan” which is your weekly “to do” list. What I love about this is that she groups your tasks into days. Mine looks like this: Monday is Home Blessing Day, Tuesday is Medical Day (ordering med supplies, making medical appointments, working on medical bills, emergency tasks and other appointments), Wednesday is Errand Day, Thursday is Zone Cleaning Day and Friday is PC/Paperwork (home office not work) Day. This is of course, in addition to working.

Why on earth would you do all of this? Because in doing so, you “bless” your family; you also do it because of the weekends. The large carrot in this case is Saturday and Sunday. The Fly Lady does not clean on Saturdays. EVER. Saturday is Family Fun Day where you do your morning routine and then spend time with your kids. This is totally awesome. Sunday is Renew Your Spirit Day. This is where you go to church or do any activity that nurtures your soul, as I like to call it. I can’t tell you how I wish I would have found her years ago. I used to spend Saturday’s cleaning and I have never spent another one again. It’s great because I get to spend every weekend doing fun stuff with Dear Son. Imagine all the great memories I might have missed out on. Even if we do nothing, we still are relaxing by taking a great walk on one of the walking trails or rocking on our porch.

Don’t Hate Me Because I Am Beautiful

It was Super Bowl Sunday and Dear Son was dressed in his football outfit ready for the big game. At ten weeks old, he was quite the handsome fellow. Dear Son, his Dad and I were invited over to my brother's house to see the game on the big screen television. I sang in the church choir, like I did every Sunday back then, and was discussing a somewhat disturbing thing that Dear Son had been doing. His arms would shake and he had some odd positioning. One of the ladies in the choir had suggested that I call the doctor and let him know what had transpired. Dear Son had just had his two month check up at the pediatrician’s office two weeks prior and I had mentioned it to him, however he did not comment on it. We were all set to leave when it began happening again. Suddenly, it became more violent, and we rushed Dear Son to the emergency room, all dressed in his football outfit. Little did we know, but Dear Son was having a seizure, and a pretty bad one at that.

Dear Son was a full term baby born weighing 8 pounds, 12 oz. with Apgar scores of 9 and 9. Prior to his birth, I had no indication that this child would be anything less than normal. He had breathing issues in the first twenty fours hours and the doctors were called. Soon, they notified me that he had turned blue and they needed my permission to send him to another facility. He also had episodes, which they described as seizures. He remained there for a week and had many tests, including an EEG and was released. They said the EEG was normal. I took him home.

At his two week appointment, I asked the pediatrician about him. Dear Son didn’t like rattles and not only didn’t he like them, they annoyed him to no end. In addition, he did not follow any items with his eyes. I asked if this was a problem and he said that kids do things as different rates and not to be concerned.

At his two month appointment, I explained these odd movements again. The pediatrician said nothing about seizures but did mention his admission at birth. I hardly remembered the part about the seizures.

So today, we were in the ER. They treated Dear Son with Phenobarbital and told us to follow up with our pediatrician. I did that, however Dear Son continued to have problems the next day, the day after that and so on. Finally, I asked for a referral to a children’s hospital.

Dear Son was transported immediately. He spent the next three weeks at a major academic medical center. It was there that they determined he was seizing nearly twenty four hours a day. They did everything they could to stop it and started him on ACTH therapy a few days into our visit. This began my wild and unintended visit into healthcare. His entire first year was a mumbo jumbo of doctor visit after doctor visit, tons of ER visits and endless phone calls. In July of that first year, in addition to all of his other disabilities, was his vision-his Visual Evoked Potential was done and it was determined he was “cortically blind”. (He later regained his vision a few months later through an odd quirk of fate.)

There wasn’t any one issue that was difficult. Heck, it all happened so fast. The doctor visits were so fast and furious that I could hardly enjoy my new bundle of joy, that I had waited for nine months to see. One of the issues that was difficult however, was the baby book. While other new mothers were busy writing down their baby’s first smile, the first time they rolled over, their first word, their first step, I had nothing. Absolutely, stinkin’ nothing to write in that book. I would come home from the doctor visits reeling with new information and wondering what Dear Son’s life would be like. I would hold that little baby in my arms and kiss his beautiful head. I thought, what the heck do I have? I looked at him with those beautiful blue eyes and Dear Son looked right back at me. I thought, yes, I do have something. He is absolutely the most beautiful little boy in the world. That’s what I have. So, as the old commercial said, “Don’t hate me because I am beautiful”......Dear Son would say, “Just love me because I am”.