Thursday, May 22, 2008

Sometimes Less Really Isn’t More…


I remember the first time Dear Son took a walk without any assistance in the gait trainer in elementary school. He had been working on that for some time in physical therapy, however this would be the first time they would show me that he could operate the gait trainer on his own, without anyone physically touching or guiding the gait trainer. I remember how happy he was, to navigate the gait trainer a few steps in the hall of the school and how odd it was that he didn’t need me at all. He didn’t need me to hold on to the gait trainer, to steady the gait trainer or anything like that. I remember being pretty excited on the one hand and on the other, not really knowing what to do with myself. I didn’t know what to do with my hands. Usually, I would have to help him with everything and well, he just didn’t need my help. It was such an odd feeling and a good feeling at the same time. After all, it wasn’t very often that there was anything Dear Son could do on his own, without my assistance. He couldn’t stand on his own, eat, use his hands or roll over and yet, here he was taking a few steps on his own, in the gait trainer. I remember the big thing at that time, was wondering if he was going to walk or hoping that he would someday walk on his own.

I think back to those times now and find myself wanting more. I guess maybe wanting more isn’t a good way to put it, but rather, I don’t want anything less.

I remember a few years back when he lost his ability to weight bear. Then he lost his ability to roll over. Then he lost his ability to eat. And then, he lost his ability to go on long walks with me because he couldn’t keep his head up very well. We used to take long walks around the golf course where we live and we’d stop briefly at the beginning of the walk and swing a bit on the double swing overlooking the water and then again at the end of our walk. At some point, he got too heavy for me to lift into the swing and I wondered what we’d do. Fortunately, I found that he was just as happy sitting in the rocker at home after our walk.

Soon, we moved inside and he liked to sit in his rocker and look out the window after school. As he began to weaken, he’d begin to fall over to his right side and nearly tumble out of the rocker. He has no use of his hands or arms so it’s not like he can catch himself or anything like that, so he really needs to be watched carefully. Soon, it was no longer safe to let him sit there and look out the window. When he could no longer do that, I moved the rocker over near the dining room table, where he’d sit and listen to the country music on his iPOD with his head lying on the table. When he’d get tired, I’d take the hoyer lift and take him into his bedroom. But some days, he’s not even able to do that. Today, he tried to lie his head on the table, but he couldn’t sustain it. After a few attempts, I took the hoyer lift and moved him into his hospital bed, where he could lie down and listen to his music. He was asleep in less than five seconds.

Sometimes in life, we want too much and we find out that less is more. And sometimes, less is well, just less. I feel like I am stuck in a long goodbye and I don’t like it. I want more. A lot more.

Note: Dear Son is sixteen and suffers from a progressive neurological disorder and intractable seizures due to a random mutation of the ARX gene.

Thursday, May 15, 2008

Dream Mom Appears on Reuters.com

I just found out that my post, "When Good Manners Go a Long Way: In Support of Etiquette- Based Medicine" was published on Reuters.com yesterday in the Health Section. I am very excited. You can view the link here:

http://www.reuters.com/article/blogBurst/health?bbPostId=B7rkpR7712nbCzD2wfQWdJF3GCz9CpgnL17JavCzAxsMd1gq0GL

In 2006, I was invited to be part of Blogburst, the world's largest blog syndication network in the world. Blogburst is operated by Pluck Corporation, who formed a strategic alliance with Reuters in 2006 to syndicate all third party blogs as part of their news and information service. It has taken some time, however as part of my agreement, my blog posts are now getting published at least once a month in major media outlets.

Wednesday, May 14, 2008

When Good Manners Go A Long Way: In Support of Etiquette-Based Medicine


I was reading the Grand Rounds today, when I came across this post written by, “In Sickness and in Health.” This blogger wrote a post in response to an article she read in the May 8, 2008 New England Journal of Medicine titled, Etiquette-Based Medicine by Michael W. Kahn, M.D.

“The article opens with the question: "Patients ideally deserve to have a compassionate doctor, but might they be satisfied with one who is simply well-behaved?" The author goes on to say, "A doctor who has trouble feeling compassion for or even recognizing a patient's suffering can nevertheless behave in certain specified ways that will result in the patient's feeling well treated.”

The author goes on and outlines a checklist of physician etiquette for the clinical encounter and gives a possible checklist for the first meeting with a hospitalized patient.

"The basic manners include:

1. Ask permission to enter the room; wait for an answer.
2. Introduce yourself, showing ID badge.
3. Shake hands (wear glove if needed).
4. Sit down. Smile if appropriate.
5. Briefly explain your role on the team.
6. Ask the patient how he or she is feeling about being in the hospital.”

The blogger, “In Sickness and in Health” argues that etiquette is not quite enough. I am not going to argue with that, but rather, I’d like to offer a different perspective in support of the article. In the article, the author states that perhaps “patients may care less about whether their doctors are reflective and empathic than whether they are respectful and attentive.”

----


Dear Son has had over fifty hospitalizations since he was born. Most have occurred at Big Academic Medical Center, a large teaching hospital twenty five miles from our home. Over the years, we have had a few hospitalizations that have spanned over thirty days. One in particular was quite stressful and happened a few years back. At that time, Dear Son was vomiting severely and they couldn’t determine what was causing his issues. He had a new g-tube installed in May of that year and had hospitalizations for vomiting in September, October, November and finally December/January of that year.

During that time, several specialties were called into see Dear Son, many of whom I had never met. In addition to the attending physicians, I might have other physician specialties consulted and see them along with the residents and fellows as well for each of them. I stayed with Dear Son twenty four hours a day and the number of hospital personnel that entered my room on a daily basis was over fifty. During that time, I spoke with the Pediatric Attending Physician and told him that each of the residents/fellows needed to identify themselves and their specialty when they came into the room. He agreed and said that he had the conversation with them on several occasions however they still didn’t comply. They didn’t seem to grasp the importance of it. More often than not, they also incorrectly assumed that if they identified themselves once, that I would remember each of them and their specialty no matter what time of the day it was. As the days wore on, and the lack of a definitive diagnosis went on, I became weary. I soon began asking each and every person, their name and their specialty and asked for them to identify themselves when they came into the room. Only then would I answer their questions. (The reason is that once I knew what their specialty was, I could frame my response and better answer their questions.) It would have been an easier hospitalization for me if they had done that.

It’s amazing how those small acts would have had a positive effect on that hospitalization. In addition, I think it’s just good manners for any hospital personnel to do that. During this hospitalization, I was “on” twenty four hours a day. It was hard. Two of the things that were particularly hard for me were: 1) having to talk to someone the minute I woke up and 2) not having fifteen minutes to eat uninterrupted. On one occasion in particular, prior to building the new hospital, they had showers in the room that had a curtain that went around you. I was taking a shower when a nurse came in and asked me several questions regarding Dear Son. I was “in” the shower for goodness sakes! I also remember one day, asking for fifteen minutes to be by myself to eat. Normally, it’s not a big deal when I am there to talk to physicians or anyone, even if I am eating. However, when you are there for weeks at a time, it can be very challenging to be “on” twenty four hours a day. I remember asking a nurse for just fifteen minutes by myself “once” in thirty days. I think the reason it was so hard was because I am not an extroverted person. If I would tell most people that, especially those that know me, they would laugh however it’s true. I am friendly and speak to people however on a scale of 1 to 10, with 10 being extroverted and 1 being introverted, I am about a 6. I need some time to myself every day without anyone around. I crave it. Not having any for weeks, well, that was very uncomfortable.

That hospitalization cost $172,000 and the total for all of them that year exceeded $250,000. The hospitalizations were a result of a medical error by a surgical nurse placing a too large feeding tube in him that not only blocked the stomach opening (hence the vomiting) but caused a ton of abrasions. He had a Vagus Nerve Stimulator implanted at that time and the surgical risk was increased due to the risk of vomiting during the operation. He lost over 10% of his bodyweight and became comatose. On top of that, there was confusion over the hospitalization and our normal doc thought he had been released and I couldn’t get nutrition to authorize a feeding over the Christmas holidays. It was a disaster and the worst hospitalization to date. The repeated hospitalizations weakened Dear Son. He was not able to go to school for nine months following that hospitalization and the tenth month could only attend part time. I could not work during this time since I needed to care for him. He slept almost twenty four hours a day. He lost his ability to weight bear and never was able to weight bear again. He walked on his knees prior to that hospitalization and never walked again after that. I lost a lot of him during that year and never regained it. Today, people assume that since he isn’t hospitalized a lot, that he’s doing well. I remind them that he’s lost a lot of skills over the last few years. If they had asked me how I felt about the hospitalizations, I could have told them.

Etiquette isn’t only nice, sometimes it means a lot. I have learned a lot from Dear Son and over the years, when the lifestyle of caring for disabled individual has worn me down, simple acts of kindness mean a lot. Somehow, stating your name and your specialty and title doesn’t seem like a lot to ask. And that hospitalization, it happened in 2004; I still remember the fact that they didn’t introduce themselves and how I was treated. That’s four years after the hospitalization occurred. Maybe Dr. Kahn is on to something. Thank you Dr.Kahn, for thinking of me.


Note: Time to celebrate-this is my 250th post as Dream Mom!
The picture is of Dear Son at the playhouse last month when we saw the children's play, "The Wizard of Oz" hosted by the local Lions club.

Sunday, May 11, 2008

A Mother's Day to Remember


I remember my first Mother's Day, standing in church holding Dear Son close to my heart. The choir was singing, "On this Day O Beautiful Mother." Tears were welling up in my eyes. Dear Son, nearly six months old at the time, had already been through two hospitalizations, one, the first week of life and the second, nearly a month long at Big Academic Medical Center. It was there that they diagnosed the seizures and started him on ACTH therapy. ACTH therapy was a type of steroid injections that were given into his little thigh on a daily basis, as I recall. The home health agency had made a mistake and sent adult needles to our home. We had been through so much in such a short amount of time and yet, it was just the beginning. What never changed was my love for Dear Son. Although my life for him has been different than what I had dreamed for him, and also for me, it has been no less rewarding, maybe even more.
In 2006, he suffered not one but two MRSA pneumonias and nearly died. After the second one, he was no longer allowed to eat by mouth and has remained on g tube feeds ever since. I've fed him on holidays every so often but the reality is that he can no longer tolerate any food by mouth, even then. I miss cooking for him. I hear mothers complain about not wanting to cook or not having time to cook for their families and I envy them. If only....

And yet, I could go on and on about what he can't do, the fact that he can't walk, the fact that he can't sit up on his own, or use his hands, or talk to me. I wish just once, he could magically talk and I could hear his voice and hear what is on his mind. We fantasize about that sometimes. I'll tell him I wish he could talk for just one day and he smiles. I tell him I probably wouldn't say anything since I'd hate to miss a even a second of hearing his lovely voice, if for just a day. His eyes light up as he envisions the fantasy. I always end up telling him that even if he can't speak, it would never change my love for him. He knows that deep in his heart. I have no doubt about that.

And yet, I am enormously blessed. I have his beautiful face to kiss every morning, I have his spirit and his smile. To know he is happy, means a lot to me. He has matured over the years and I am blessed to have seen him do that. If he were not disabled, I might not know that all of the things we normally expect, like walking and talking are blessings.

I know my time with him is limited. I know that it won't be long before the ravages of his progressive neurological disease take over and yet, I am thoroughly enjoying today. I remember when I was thirteen and my father died. I remember how it felt and how everyone in our house cried for three weeks. Every night, I would hear my mother, my sister and I cry over the loss of my father. I know that when I lose my son, it will be worse.

And yet, I came awfully close to losing him to the MRSA pneumonia in 2006. And today, I'll reprint the post of that frightful day. That day, will always be a reminder to cherish each and every moment with him, no matter how small or insignificant those moments may be.

To remember that time, I bought the tea set you see in this picture. I purchased it in the gift shop at Big Academic Medical Center as a reminder of that event. It reminds me of the hardship and the blessing of that Mother's Day, when I came so close to losing him. I also decided to start a collection of tea sets after that.

Today, Dear Son and I will go to a family cookout and celebrate all of the mothers in our family. It will be a great day, because I have my son. And before I eat, I will say a prayer for all of the mother's who lost their sons and daughters this year, for they will need it.

God Bless you all. Have a Happy Mother's Day.

-----
Part III-A Mother’s Day to Remember (Originally published June 1, 2006)

Today’s chest x ray is worse, as if that were an option. I have never seen a chest x ray like this one before. It consists of his head and then it’s solid white from the neck down. There are no ribs or anything on the x ray. It looks like a mistake but it’s not. They have diagnosed him with a MRSA pneumonia and Acute Respiratory Distress Syndrome. I’ll learn in a day or so that he was in septic shock as well. His blood pressure is unstable. They have tried to control it with blood pressure meds but it’s not working. Dear Son’s blood pressure continues to drop. He desperately needs a transfusion. They ask me again, or pressure me rather, and I decline. I have lots of questions and I don’t feel comfortable asking them with ten of them (there is one attending and multiple residents) and one of me. I feel like I am being bullied. I just want a familiar face or at least a one on one with someone. I don’t begin to understand the seriousness of this issue and won’t until a few days from now. If they had presented it to me differently, I might have responded much quicker. In the meantime, they continue the blood pressure meds. His glucose is now unstable as well. They have started him on insulin. His body is retaining fluids in all the tissues. They add the pressure boots to his legs to reduce the swelling. He doesn’t look much like Dear Son anymore. I think his face or jowls, that he has now, make him look more like John McCain. I hate John McCain.

It’s Mother’s Day today. The sun is shining in on Dear Son’s hospital bed and it looks to be a glorious day. Dear Son however looks horrible. He is hooked up from one end to the other. If I were to be truthful, he looks like a corpse with a bunch of attachments hooked up to him. I think to myself that this is not really living and wonder if I am being selfish in wanting him to live or if it’s right that they are saving him. I really don’t know the answer to this. I desperately want to kiss him but am scared of the vent tubing. It reminds me of when he was in the hospital when he was a little boy. I could never hold him in my arms to my chest with the IVs in him and the very first thing I would do when they took them out was to give him a full body hug. I look at him up and down and try to find an open spot to kiss him. He’s got IVs in both feet, the boots on his legs, a catheter, his g tube, a central line in his hip, an arterial line in the other wrist, a blood pressure cuff on his bicep, multiple monitors on his fingers and hands, a ng tube out his nose and the ventilator tubing taped across his face. I kiss him on his knee and tell him I love him. I love him so much. It’s really hard to see him this way. In a way, it seems like he’s already gone.

Good Morning America, the weekend edition, is on television. They show a female soldier’s two sons and have the camera on the sons so they can see their mother. The little boy, who appears to be around five or six, is supposed to wish his mother a happy Mother’s Day. Instead, he begins to cry because he misses his mother. The Pediatric Intensive Care Unit (PICU) nurse sees this part while attending to Dear Son and asks why the little boy on t.v. is crying. I tell her he’s crying because he missed his Mamma and hadn’t seen her since Christmas. I mention that it’s Mother’s Day and suddenly Dear Son’s eyes squinted a bit as if he were trying to open them and finally one eye partially opens and he looked at me. Dear Son’s eyes had been closed for a few days now. I remember the calendar that was sent home from school each day in May where it summarized the highlights for this month. Mother’s Day was on the sheet so I knew Dear Son remembered it. They would always send home these little gifts, that supposedly Dear Son made for me. I would open them and be excited about them and tell him how much I loved them. He would beam ear to ear when I did this. He had an excitement about him that was absolutely contagious. He had been learning about Mother’s Day at school these last few weeks so I know he purposefully opened his one eye to wish me a Happy Mother’s Day. That was the kind of son Dear Son is. He’s very loving and adores his mother. He makes my day.

The PICU Attending Doc arrives in the lobby of the PICU. She has lots of bright yellow and pink tulips in vases for someone. One of the staff delivers one of the vases to me and tells me it’s from the Attending Doc. She bought them for all of the mothers on the floor for Mother’s Day. God bless her heart. I am almost in tears now. I have told Dear Son for years that my two favorite things are flowers and little boys. He would always laugh at me. I find the doc and thank her. She says, “I am sorry you have to be here on Mother’s Day but I wanted to bring you some flowers and wish you a happy Mother’s Day”. I couldn’t think of a nicer thing to say to a mother today. This woman hit the nail on the head.

I spend the day praying. Actually, it was more like begging. I begged the Lord not to take Dear Son on Mother’s Day. Of all the days to take him, this would be the worst. I decide that this would be the absolute cruelest thing in the world that would ever happen to me and pray that it won’t come true. I would forever have Mother’s Day as the death of my only son.

I easily remember my first Mother’s Day when Dear Son was only six months old. He had spent three weeks at this same Big Academic Medical Center when he was only eight weeks old and Ped Neuro Doc had taken care of him. He started on ACTH therapy and had improved. I was so grateful for that. I held him in church on that Mother’s Day and tears streamed down my face as they played “On This Day O Beautiful Mother”. I loved being a mother and was thankful that he was alive. I had never felt more beautiful than I did on that day.

The Rounds occur. They tell me it’s a MRSA pneumonia. Not only that, they tell me the x ray looks worse than yesterday. I can’t imagine how much worse it can look, but take their word for it. I’ll learn later in the week that they had twelve MRSA pneumonias here last year. Seven died. Enough said. I think back to my first day at the local hospital when I asked for the MRSA screen. Why couldn’t they have put this together and figured out it was a MRSA pneumonia? Or at the very least, that they were in trouble? I am angry but let it go. Dear Son is still in big trouble.

The Attending Doc comes in to meet me and asks for the transfusion. She tells me the hemoglobin is 7.5 and they can’t stabilize the blood pressure. I tell her that I wonder how safe they are. She says they are safe but I need more information that that. I ask her if I can donate. She says that would take a few days to test the blood and we don’t have time for that. She says there is only a very, very small risk of contracting Hepatitis C or HIV from the transfusion and that they are safe. I tell her that I won the gene lottery with Dear Son and that if there was a minute chance he would get this gene mutation too. I explain that there are only four children to date in the world with Dear Son’s gene pattern. I tell her that I am not a lucky woman when it comes to this kind of thing. I ask where the blood comes from and she doesn’t know. She says she checks the box off to order the blood and it arrives. I think she should know the answer to this question, meaning what blood bank they use, etc, etc, but I don’t butt heads with her. She is trying to help Dear Son. She explains that in her country, the doctors can just do what they feel is needed for the patients, and don’t have to ask the parents permission. In America, she says, it’s different. I explain to her that it would help if the pc was working in the room. I could have googled transfusions and had a lot of my questions answered and not wasted her time. I wasn’t trying to be difficult, it was more that I wondered if a transfusion was really necessary. I tell her I will think about it.

Hours pass and I decide that it’s not worth it to debate this transfusion. I tell her that I’ll sign off on the transfusion and to have someone bring me the consent papers. I decide that it’s more important for him to live than to worry about the transfusion. Also, I really don’t want him to die today. Not on Mother’s Day.


The entire series on the MRSA Pneumonia is here:

Sunday, May 04, 2008

The Purpose Driven Life

The home sat off the side of the road, it’s well manicured lawn fresh from a recent mowing and by all appearances, this was a nice place. The morning was crisp and I was early, all good by my own accounts. This was my first visit to a potential day program for Dear Son and I wanted to make certain I wasn’t late. I debated taking the tollway but decided upon the back roads to get to the place. Nothing against the toll road but sometimes the back roads are really pretty in the spring and it gives me a good idea of the road the bus might take to bring him here. Or not. I have to remember, the school doesn’t transport him here, that would be my responsibility.

I waited for the Vocational Counselor to arrive. At Dear Son’s last IEP (Individual Education Plan) they pushed for me to pursue a day program for Dear Son. Legally, he can stay in high school until he is 21, and they would have to provide transportation for him as well as all expenses for his therapies, as they do now. They are pushing for all of the special needs teenagers to leave high school after four years and pursue a day program or vocational training. I reminded them that unless I found a program that Dear Son would thrive in, that he would remain in school.

I stayed in my car and looked a little closer at the facility. On one end was the residential program, where the children and adults lived and the other end was the day program for the adults. I had heard of this program from Dear Son’s Orthopedic Surgeon, who serviced these children’s needs for the last nine years via the clinic. He felt the children were very well cared for compared to other places he’s been.

I looked at the windows, the white blinds all closed. As I peered up and down the large horizontal structure, every blind was closed. Somehow, that didn’t seem friendly to me. The building sat next to large radio towers, another negative. I wouldn’t buy a home near them and it didn’t seem safe to have them within fifty feet of the structure. As I looked over the lawn, I wondered what the backyard looked like. That would be important as that would be where the children would go when they went outside. I was hoping they might have a wheelchair swing. Dear Son would like that.

The Vocational Counselor arrived and we went inside. We signed in and waited for a while before someone arrived to greet us. I looked at the signature page and counted the signatures for April-only six so far this month. I looked back at February and March and saw that there were only a few every month. Apparently, no one visits much. We waited in the lobby and watched the reception desk, which appeared to be part of the medical clinic. A young woman sat in a tilt wheelchair, her feet bundled up in an odd type of cloth shoe that looked more like a slipper, as if to cover some sort of casting. I imagined it was Dear Son sitting there and wondered how long they would let her sit there alone, staring into space. I tried to peer into the room, to determine if it was a medical room or if it was a residential room. I saw what appeared to be a dresser of sorts which made me think it was her room. But no one came. Finally, after ten minutes or so, we were greeted by a nurse’s aide who phoned the woman we were scheduled to see.

She came to greet us and and walked us down the long corridor to her office. I peered into the residential rooms as we walked by to get a closer look. There were three beds to a room, each with it’s own dresser. There weren’t any sheets on the bed, but there were comforters strewn at the bottom of the beds. There was a single four drawer chest next to each of the beds. Most had no personal effects of any kind. I saw one boom box. I imagined that without any personal effects, there weren’t many visitors.

We chatted briefly with the woman as she asked for Dear Son’s information. She informed me that he was by far the largest teenager here, including the adults. At 164 pounds, well, they didn’t have anyone that size. I explained that I was here to visit the day program and was not looking for residential placement. This would actually be the first residential home I had ever visited in person, so I was certainly curious.

We walked down the hall and the first place I saw was the living/family room. It looked nothing like the pictures on the website. The website showed a bright, cheery, light filled room that looked like a nice place to live. The family room as I saw it, looked like it was rarely used. There wasn’t any seating of any kind however there was a large screen t.v. and some bookshelves on the other side. The woman told us that this was where the kids were every night. They watched t.v., got massages, played games, etc. Her words clashed with the surroundings because I couldn’t figure out where anyone would sit.

We walked down the hall and to the right was a small room with a sign outside the door that said, “Family.” I asked what the room was for and she said it was so the family could visit with the residents and have some privacy. I asked why they couldn’t visit in their rooms and she said they could. I didn’t believe her for a minute. Something just wasn’t quite right.

As we walked down the hall, I peered into the other rooms. No sheets on the beds. We stopped at this one room and she described all of the activities that took place there, when I interrupted her to ask some questions. To me, I needed to understand just who lived there and how they took care of them. There were 57 people there-1/3 were peds and the rest were adult residents over the age of 18. None were ambulatory. I wanted to know who placed them there-the family or the state. Secretly, I hoped the state had placed them there since it seemed so dismal that a family would do that to them, however I would be wrong. Of the fifty seven, fifty four were placed by their family and 3 by the state. Only one had behavioral issues. That was important to me since I was trying to find a Day program that had kids similar to Dear Son-lots of physical and mental disabilities but no behavioral issues. As I asked more questions, it appeared they were 99% public aid funded and hadn’t had a funding increase in eleven years. They did however had a group that financially supported them and helped them pay their bills.

We talked some more and as she continued the tour, we saw the bathrooms. She explained they were bathed every evening and had a sponge bath every morning. I thought that was a lot of work. As she talked some more, I began to wonder how many aides they had to assist them with their tasks. Turns out they have one aide for every seven children. That’s a lot of work to bathe them, get them dressed, feed them and get them off to the Day program every morning. I am tired just taking care of Dear Son! And to change diapers on top of all of that, that seemed enormous. The Vocational Counselor chimed in that most places had one aide to every ten to twelve adults as if that should make me think better of this place. I didn’t. And then I asked about the sheets, and why there weren’t any on the beds. She said it was housekeeping responsibility and pointed the workers out, as we walked down the long corridors. The only problem is that there weren’t any linens in sight. Anywhere. As we continued the tour, I was getting physically ill thinking about this place. I just wanted to sit down before I fainted. Fortunately, there were handrails. I couldn’t imagine Dear Son having to live here. It seemed so very cold and impersonal. I didn’t buy the fact that one person could take great care of seven kids/adults with these kinds of needs. I know I couldn’t.

We saw the day program which was more of the same. Thirty adults in a room, every wheelchair tilted back, all of them expressionless while three adults tried to conduct a lesson of sorts. I knew then that her comment about the visiting room for “families” was a lie because none of these kids knew what was going on so there’d be no reason for a special room for privacy. All of the adults in the wheelchairs, were all the same size, the same height and almost the same weight. I don’t think any of them exceeded 100 pounds. I didn’t think it seemed normal that none of them would have grown to a normal adult height and weight. I can see now that Dear Son would have been a giant of sorts. But he’s not a giant, he’s just a normal, healthy, adult teenager. As I looked around the room, I saw every adult, tilted back in their wheelchair, expressionless with nothing to live for. I imagined to myself that if Dear Son were here, he would be like that in less than six weeks. If you don’t nurture these children, they will die, first in spirit and then in the physical. I knew then that he would never come here. We walked back to her office and she told me about the waiting list for the program. I took the application and left, knowing I would never fill it out. I felt guilty for wasting paper.

I left the house, feeling physically ill. It was such a stressful day, seeing them like that. To make matters worse, I knew that there were residential facilities far worse than that. And here I was just looking for a day program! The whole experience just solidified what I always knew, that Dear Son would never, ever, step foot in a residential facility.

Later that day, I got Dear Son off the school bus. The bus aide asked me how the tour went. I described it to her and told her what I saw as Dear Son listened. After she left, I told Dear Son that I was just looking for a school type program for him after high school and that he was always going to live with me. Dear Son leaned over and gave me a lick (kiss) on the hand. It was a warm and sunny day, so we sat outside, talking and listening to the birdies, him in his wheelchair and myself in the rocker. As we sat there, we talked about the beautiful birdies and the songs they sing for him. While I talked to him, he continued lean his head over so I would kiss it, which is his way of giving me a kiss. Between that and licking my hand, he must have given me thirty kisses. You can’t tell me these kids don’t get it. As I came inside, I felt intense pride in what I do for him on a daily basis. His bed is always made, his sheets are fresh, he gets his meds on time and he starts and ends every day a happy kid. He is loved and he knows it. I am blessed. And it’s Dear Son who blesses me. He is my purpose. And when you live your life with the right purpose, you live a life with no regrets and a life of immense pleasure.
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