Wednesday, May 31, 2006

Part II-The Rescue

The Air Team arrives. There are four of them-a pilot, an attending and two residents. Just guessing, of course. Still not sure I have done the right thing, one of the residents takes one look at Dear Son and turns white. He comments on how hard he is breathing and administers an oxgen face mask immediately. They also require that one of his antibiotics be changed prior to transport. I am relieved already and begin to relax. This is Dear Son’s fourth air transfer and I know how good this team is. I am always impressed with the way they take over immediately and manage the crisis. I breathe a sigh of relief. This is the stuff the commercials should be made of. Skip the best hospitals stuff-this is when it “really” matters. I can’t begin to tell you what a sense of relief that comes over me when they arrive. It’s the same feeling I get when Dear Son’s in deep trouble and Ped Neuro Doc takes over. These people are good. No, these people are great at what they do.

I leave the hospital to meet them there. I don’t have enough gas to get me downtown so I’ll have to stop or I won’t make it. I leave the hospital and am driving towards the highway when I look up and see the helicopter overhead. This is totally weird. It’s like the scene in a movie, the kind that never happen in real life, but they put it in there to demonstrate the emergency. I can’t believe it’s Dear Son in that helicopter. I feel like I’ve just dodged a bullet. I pull into the gas station, pay cash for my gas and grab a bag of chips while I am there. I get peeved at myself and tell myself that this is nothing more than emotional eating and that I need to put the chips back. I’ve worked too hard to blow it on a bag of chips. I decide that there will be other days to work on this issue and buy the chips anyways. I don’t even like chips. Go figure.

I arrive at the Pediatric Intensive Care Unit (PICU). It’s now 8 o’clock p.m. There are some twenty people working on Dear Son. They have done more in the last hour than the previous hospital did in three days. I still don’t know what’s wrong but I do know this. More people, bigger problem. I’ve seen it one too many times before. I stay in the background offering information only as needed, letting them do their job. They have him hooked up to the Bi-PAP machine, I believe. I don’t really know what a Bi-PAP machine is, however they have it at 100%. They continue to work on him throughout the night. I am getting worried now.

It’s Saturday morning and the furor continues. He’s got IV’s in both feet, a central line in his hip, a catheter, his g tube, an arterial line in his left wrist, monitors on his right hand, an NG tube and they just vented him at 100%. The syringe pumps are stacked so high it looks like a condo tower. I have never seen that many before. It’s not even noon. They work their tails off until 5 p.m. I thank one of the day nurses at she leaves to go home at the end of her shift. I tell her that she did a great job today and thank her for working so hard. She appreciates the fact that I noticed, but she is downright exhausted. They have been working hard since 8 p.m. last night. I look at Dear Son and he’s motionless in bed. They have given him paralyzing medicine to keep him still. I wonder if I have done the right thing. Ironically, I think back to Neonatal’s Docs post earlier this year where we discussed putting plans in place for times like these. I wonder if my decision or lack thereof, is the right one for Dear Son. Am I keeping him alive because I selfishly love him and want him to be around and by the same token prolonging his suffering? I decide I can’t think clearly right now and look at Dear Son and want to kiss his cheek and see his beautiful smile again. I start praying some more that I see it again. I can’t stand looking at him like this.

They approach me again and tell me Dear Son needs a blood transfusion. I am exhausted and overwhelmed and deny their request. I am feeling uncomfortable again. I just need to see a familiar face to ask them about these transfusions. Are they safe? I picture myself forever checking off the box that he’s had a blood transfusion and wonder if it’s really necessary. I try calling our Pediatrician but can’t get in touch with him. Ped Neuro Doc is still on vacation and Ped Neuro Nurse won’t answer her page. I just want to see someone I know. I decide to leave a voice mail message on Ped Neuro Doc’s home phone. I know he’s on vacation but it’s the least I can do.

The nurses come in to suction Dear Son often. I can’t bear to listen to this or watch this. I have to leave the room. I suck at medical stuff-I am much better at the business end of healthcare, meeting with healthcare CEO’s, CIO’s than this stuff. Actually, this stuff makes me nauseous. I ask them to be careful to keep Dear Son on his sides since he can’t roll over and he chokes on his saliva normally. The PICU nurses are great here-smart and hardworking.

I look over at Dear Son again. My mind wanders back to last summer. Ever since Ped Neuro Doc told me he was dying, my life with him has never been the same. I am always wanting one more day, one more smile and one more day to love him. Today’s no different.

Continued... The MRSA Pneumonia: Part III-A Mother's Day to Remember

Monday, May 29, 2006

Part I-How It Began

It was Wednesday and I had just called Ped Neuro Doc about Dear Son. He woke up yesterday with a high fever and although I was concerned, I thought I’d manage it at home first and see if I could get it under control. I usually do that now, try to manage the situation first, then call later. After all, Dear Son is much older now and it’s not as urgent, or so I’d like to think.

We had done our normal morning routine yesterday, where Dear Son wakes up at the crack of dawn, I get up and put my contacts in and then go in his room to give him a big bear hug and some kisses on the cheek. Dear Son laughs when I do this and pushes me away when he’s finished. I then get his meds and breakfast ready, to get him off to school. This morning was different though. I wrapped my arms around him and his body was so hot that it took my breath away. I was alarmed and shocked. I stepped back and gave him a quick once over. He was not seizing, looked fine and everything appeared to be normal, except for the fact he was burning up. I took his temperature and it registered at 104.3. I figured it must be a mistake so I try taking it again but I keep getting these high numbers. I haven’t had numbers this high since he had his ear infections as a little boy and even then, they might only by 103.5. I decide maybe the thermometer needs new batteries. Since everything seems to be o.k. looking at him, I decide to give him Motrin with his breakfast and call him off school. His teacher informed me previously that some of the kids were sick with some colds but to date it hadn’t affected Dear Son.

Other than seizures, Dear Son is rarely sick anymore. In the last few years, we have only seen the pediatrician for wellness checks. Ped Neuro Doc handles most of our emergencies now in part because they are mostly seizure related and partly because of Dear Son’s special needs. Dear Son has a Vagus Nerve Stimulator implanted and has intractable seizures. He’s a great Neuro Doc and a great Pediatrician to boot.

I had decided to manage Dear Son’s fever myself for a day however when I can’t get control of the fever, I decide to place the call to Ped Neuro Doc. Dear Son is breathing more rapidly now and I am concerned. Concerned about the breathing and the fact that this fever will lower the seizure threshold and I could be in trouble soon. I ask him how he wants me to handle this: go to the nearest ER, go to Big Academic Medical Center or follow up with our Pediatrician, Dr. A. He says to go to the nearest ER. His answer surprises me. Although it’s not a neuro issue, he usually handles all of Dear Son’s emergencies these past few years. I follow his advice. I finish putting on my make up and pack a few things, however Dear Son’s breathing is more rapid. He takes one breath every second. I know this is unusual for him because I go to sleep many nights counting in between his breaths I hear on the monitor-one one thousand, two one thousand, three one thousand, four one thousand, five one thousand, “breathe dammit”, goes through my mind and then suddenly he’ll take a breath and I catch my own. I repeat this scenario most nights so I know for a fact that the one one thousand breaths are not normal. I never sleep until I know that he is fine and breathing normally and not seizing.

I end up calling 911 because he begins to look poor. The paramedics arrive and immediately give him an oxygen mask. They take his history and I hand them the Emergency Information Sheet that I made up several years ago. Ironically, I just updated it yesterday. It includes his primary and secondary diagnosis, all the meds he’s on, what his baseline mental and physical abilities are, how he feeds and just about anything you’d ever need to know, if I wasn’t there or if he was in a school bus accident. I created the sheet many years ago after a severe school bus crash in Fox River Grove, a suburb in our state.

They start an IV and we head for the hospital. We arrive at our local ER, a hospital known for it’s cardiology, since most of the patients here are well paid Corporate Executives with stress related issues due to their job. Dear Son’s placed on oxygen and they start him on Motrin with Tylenol given two hours later, to control the fever. They run labs, including seizure meds and start him on two antibiotics. We assume it’s an aspiration pneumonia at this point. I tell them about the Methicillin-resistant Staphylococcus Aureus (MRSA) and they put him on contact isolation. Ironically, I ask them to run a MRSA test because I keep hoping this MRSA thing will go away so I don’t have to go through this isolation stuff any more. Dear Son was diagnosed with MRSA in 2004, probably as a result of his forty plus hospitalizations, throughout his fourteen years. I won’t know for a few days that asking for this MRSA screen, will be like a bad foreshadowing in a novel. Only it’s not a novel, it’s the real thing.

Dear Son is admitted asap. The Peds floor is dead. I check things out and look at their patient board. Only four patients in here right now. I can’t believe it-only four patients. At the Big Academic Medical Center, you have to wait sometimes up to thirty hours to get a bed on the floor. Usually Ped Neuro Doc gets us in there so we don’t have to wait, but other families aren’t so lucky. I see a beta fish in the fishbowl. It reminds me of home but this fish isn’t as friendly as mine. I remember the salt water fish tanks in the lobby and know they have a service for those but the beta fish? That means that someone has way too much time on their hands to take care of this fish. I ask and find out one of the nurses takes care of it. Proof they have too much time on their hands. I enjoy the fish nonetheless.

It’s now Friday and Dear Son has not improved. He’s still breathing as fast as when he came in and I am concerned. His fever is not under control and goes down only if the Motrin/Tylenol combination is administered precisely on schedule. The antibiotics are not working. The night nurses have suctioned him for five hours straight each night. Because they have a low census, they have time to do this. I am thankful for that. Regardless, this isn’t normal.

I decide to start making some phone calls. Something isn’t right and I don’t like it. I don’t have a very good feeling here and I am beginning to get really uncomfortable. I tend to follow my intuition. They admit him to the Intensive Care Unit today. The ICU at this hospital just means that they hook up a few more monitors, but you stay in the same room. The heart rate monitor is on now. WTF! At the Big Academic Medical Center, they have all of the monitors on all the time, not just in the ICU. I talk to the ICU doctor. He’s nice but has no answers. I don’t need nice, I need to figure out what’s wrong. This Hospitalist system stinks; a new doc comes on board every twelve hours. God, I just hate it. My mind wanders back to Dear Son. He is too weak to continue breathing like this.

I close the door and start my calls. It’s one of those days where I can’t get in touch with anyone. Everything from busy signals to getting disconnected. I finally get in touch with my former mother-in-law, who is now 84 years old. She was an ortho nurse for many years. She reads between the lines and tells me that she knows I am not comfortable there. I tell her that she’s right. I’ve got a gut feeling something is really wrong, I just don’t know what. I call the secondary insurance Case Manager. She’s a nurse who’s worked with me a few years now and knows Dear Son’s case real well. She hears the concern in my voice and decides to make a visit to the hospital. Ironically, Dear Son perks up for her visit and then crashes the minute she leaves. He smiles when she says hello to him but his eyes remain closed. That’s Dear Son for you, always the extrovert. He loves people.

I call our Pediatrician (We had moved out of his service area a few years back but I kept going to him Dear Son had mostly seizures and kept the Ped Doc for wellness visits and lab work.) and explain what is going on. I tell him what they are doing and ask his advice. He says the treatment plan is appropriate however we probably need to have a Pediatric Infectious Disease Specialist at a Children’s Hospital look at him. He said most adult hospitals, including the ones he admits too, can’t handle kids like Dear Son. I hang up the phone and call Ped Neuro Doc’s nurse since Ped Neuro Doc is on vacation. She’s out of the office for two days. Crap. I find out who’s covering for Ped Neuro Doc and call his nurse, “P”. “P” used to be Ped Neuro Doc’s old nurse until the last Department Head stole her away. At least that’s what the rumor mill says. She’s a great nurse, the best Ped Neuro Doc ever had and more importantly she knows Dear Son and I. I explain the situation and tell her that if we get into trouble and need him vented, I want it to be at the Big Academic Medical Center and not here. She tells me we need to get him here now if he’s as bad as I say he is. I don’t know if that’s the case but I just know that I am really uncomfortable and growing more uncomfortable by the minute. It’s now 4:35 p.m. on a Friday night and Mother’s Day weekend. She offers to try to find a doc that will accept a transfer. Because it’s not a Neurology issue, she has to find a Pediatric Doc who will do this. Bless her. A while goes by and Dear Son is breathing even harder. She calls back and found a Peds resident who would accept him but I have to get the ICU doc to agree to initiate the transfer. Without missing a beat, I call him in. I try to think quickly about what I’ll tell him being careful not to upset him. My real thoughts are that we need to get out of here asap because they don’t know what’s going on but I choose to tell him that I’d be more comfortable at Big Academic Medical Center because they know him, blah, blah, blah……He agrees to call them but will only agree to transfer him “if” they have a bed available in the Peds ICU. Dang. I doubt this will be the case but pray nonetheless. Nothing has gone right today so far. I also know that you have to wait thirty plus hours for a regular room, this probably won’t happen. I give him the resident’s pager number and he calls her. He comes back to the room and tells me the Air Transport Team will be here in exactly twenty eight minutes. I pack all our stuff in under five minutes. I can’t believe they had a room but I am ready. I am still not sure if I am doing the right thing but I know that they aren’t moving fast enough for Dear Son and he’s having a really hard time.

To be continued...This is Part I of IV Parts. Part II, the Rescue, is next.

Saturday, May 27, 2006

Home


Dear Son was released from the hospital today. He is breathing on his own and appears to be doing quite well. He will continue g tube feeds for a while until it is safe for him to eat via mouth. I will perform the respiratory therapy and physical therapy will be scheduled soon in our home. I still can't believe that he survived this ordeal. I am a very lucky woman.

I am happy to be at home and even happier to sleep in my own bed tonight after sleeping on hospital chairs/beds for almost three weeks now.

Thank you for all of your prayers and continued support. I am certain it made a difference in his recovery. After some much needed rest, I should be back to my regular blogging early next week.

Friday, May 26, 2006

Update

Dear Son is recovering nicely. They removed all of the oxygen last night and he is breathing on his own. His chest x-ray continues to improve. The left lung is still partially collapsed. They continue to feed him via the g-tube and it appears that he will need to continue these feeds until it is safe for him to eat. Ped Neuro Doc says we will be here a few more days. There has been some discussion of transferring him to a rehab facility but I don't have any more information at this time. Thank you for your concern and for all of your prayers.

Tuesday, May 23, 2006

Update

It's been a long hospitalization. Dear Son is recovering nicely and was extubated on Sunday. Initially it was a little rough but he is doing better. He was moved out of the ICU last night around 11 p.m. and is now on a pediatric floor. I was hopelessly optimistic that we might be leaving in a few days or so, since we are on day 11/14 of our last antibiotic but that is not the case.

Ped Neuro Doc came in today to discuss the hospitalization. He said Dear Son is lucky to be alive because most people don't recover from a staph infection like this one. Dear Son is highly unusual because he didn't get an abscess formation in the chest. The typical hospitalization for this is four weeks and recovery is two to three months. We will probably be here another two weeks. The EEG looked good and other than the fact that we are not going home for a while, things are o.k. Dear Son is easily exhausted as expected and feeding through the g tube. I am not sure when he will be able to feed orally. He is happy though and so am I. He loved listening to Gretchen Wilson today and laughed when her song, "Here For The Party" played. I kissed him a million times on the cheek today which I couldn't do when he had the vent on.

I miss being home.

Saturday, May 20, 2006

Update

Dear Son woke up early this morning and was alert and smiling with the nurse when I came back from my shower. She said she was glad to finally get to "meet" Dear Son. She said he had the most beautiful blue eyes and a great smile.

I spoke with Dear Son and played the music on one of the toys that he likes. He smiled and even laughed until he choked on the ventilator tubing. The rest of the day was pretty rough for him.

The Rounds went fine today. Overall, I have been really pleased with they way they have taken care of Dear Son. I can't believe it's been a week since we arrived at the Big Academic Medical Center and I couldn't help but remember how close he was to dying last weekend. I was thankful we made it to today. Today's chest x-ray finally looked a little better. They removed his catheter, one of his two central lines out and they stopped the sedative, insulin and the morphine. The morphine for pain is now as needed. I thanked them at the end of the rounds today for helping get my son back. The fact that he was alert and smiling this morning meant the world to me. I was worried that even if he recovered, he may not be very responsive. They also brought down the vent settings so if he does well today they make extubate him tomorrow. That's the good news.

Overall though, he had an extremely rough day. He cried a lot and kept choking on the tubing today any time we moved him. We had to move him a lot to change the bed, for a chest x ray and to hook up the extended EEG monitoring. There was one scary moment when he choked on the tubing and started to throw up while we were trying turn him on his side. It's a difficult move with the ventilator tubing, IV's, central line, g tube and catheter hooked up. I am hoping he didn't aspirate any of it-there's just no good way to tell since it happened so fast. He was scheduled for the extended monitoring prior to this hospitalization however now it appears that he may be having some seizures. He was exhausted from the slightest movement today.

Dear Son's Dad is staying with him tonight so I can do some laundry and get some rest. I will return to the hospital tomorrow night.

Thank you for your support through this difficult time. It means a lot to me and to Dear Son.

Thursday, May 18, 2006

Update III

Things are starting to improve. While the chest x ray is still pretty white, the labs look good. The vent settings were reduced yesterday and Dear Son is breathing over the vent. Both the pain and the sedation meds were reduced as expected with the decrease in the vent settings. It looks like we are on our way in terms of extubating although it is probably still a few days away. He has completed two of the three antibiotics and we are on day 7 of a 14 day course on the third one. He remains on insulin for the time being. He is tolerating feeds through the g tube and the breathing treatments have been reduced a second time and are now every four hours. They have told me that we are still not out of the woods yet, but things are looking good. Dear Son opened his eyes for one second a few times yesterday but nothing yet today. Your prayers are working and are appreciated.

Interestingly enough, there was a special segment on our local news last night about MRSA. They interviewed the Section Chief here at the Big Academic Medical Center. They showed a boy who had recovered from a MRSA pneumonia last year-he was in a coma for two months and hospitalized for five months. Of the twelve cases they had here, seven died. I am a very lucky woman.

During the rounds today, I also asked about the lack of the local hospital to make an appropriate referral here. I actually initiated the referral here because I didn't feel Dear Son was improving and he was struggling really hard with his breathing at the local hospital's ICU. Since Ped Neuro Doc (who works at the Big Academic Medical Center) was on vacation, I ended up speaking the doc's nurse who was covering for him. I explained that I was very uncomfortable at the local hospital, that Dear Son's breathing was extremely labored, that he wasn't getting better, etc, etc. It was late on Friday night and she managed to find a pediatric resident who would agree to take the transfer "only" if the Ped ICU Doc would initiate the transfer. I spoke with him and he said he would agree but only if the Big Academic Medical Center had a bed available in the PICU. I gave him the pager number of the pediatric resident and 28 minutes later the Air Team arrived from the Big Academic Medical Center and saw Dear Son. They changed one of the antibiotics immediately and said he was in distress. By the time Dear Son had arrived at the Big Academic Medical Center he was in respiratory distress/failure and in septic shock. I wanted to know why the ICU at the local hospital didn't make an appropriate referral. The local hospital uses a hospitalist system; there are hospitalists in the ER and also on the Peds floor. At the local hosptial, they have a different hospitalist every twelve hours. I do not like the hospitalist system nor do I belive they are good. When I am sick or Dear Son is sick, I want "our" doctor, not someone who doesn't have any history. The attending physician answered my question by saying that a lot of the local hospitals don't think that MRSA happens in their area and think it's only an inner city issue. The area where I live is one of the wealthiest suburbs which is probably part of the problem-they probably don't think MRSA exists there. I would hope that more hospitals begin to understand MRSA so that appropriate referrals can be made. Dear Son arrived here in the nick of time and I would hope that more hospitals would understand the important health issue that MRSA has become so that this situation doesn't happen again to some other child.

Tuesday, May 16, 2006

Update

Thank you for all the prayers and comments. It is great to read them throughout the day and very uplifting. They have a pc hooked up to a big plasma screen in the room but it's difficult to use for anything other than viewing things on the pc.

On Saturday and Sunday, they had a lot of issues attempting to control Dear Son's blood pressure, despite adding a medicine to control it. He was so unstable on Saturday that I was rather worried he was going to die on Mother's Day and was relieved to make it through the day. Mother's Day started out o.k. until they did a power check at the hospital and the power was shut off briefly for testing. I wish they would have told me that. My heart skipped a few beats as the power went off and I quickly looked at Dear Son who was still breathing on the ventilator. It took me a minute to realize that it probably had a battery back up. The second thought that entered my mind was what it must have been like when Hurricane Katrina hit with the power going out in the hospitals. I later confirmed with a staff member that I know that it was indeed a valid test of the power.

On Sunday evening, they did a blood transfusion due to the low hemoglobin (7.5). I had many reservations about authorizing this; I don't do this every day and was concerned about the safety of it. The blood transfusion appeared to have stabalized the blood pressure however the chest x ray continues to get worse. Yesterday, the lungs were not visible at all on the xray (they showed it to me) and he was considered a bad stable so to speak. Today's x-ray was unchanged.

During the rounds today, they indicated that this is a MRSA pneumonia. (The MRSA is not surprising-Dear Son has had over 50 hospitalizations in his life and the MRSA was diagnosed back in 2004). From what I am told, this makes it more problematic since he was so sick when he presented and because the MRSA pneumonia will make it more difficult to wean him from the ventilator since Dear Son is not very active (he is bedridden normally). The ventilator settings remain unchanged. They also indicated that we will remain in the PICU for some time. He has also become hyperglycemic as a result of the steroid so they will be keeping insulin at the bedside.

That is all for now. The doctors and nurses here have really done a great job and I am thankful for that.

Saturday, May 13, 2006

Dear Son Update

It's been a long twenty fours hours. As I mentioned previously, Dear Son was rushed to a local hospital with breathing difficulties, a high fever and suspected aspiration pneumonia. Dear Son continued to decline, they couldn't keep the fever down and the lungs were getting worse. On Friday afternoon he was admitted to the Intensive Care Unit at the local hospital. Dear Son had been working pretty hard breathing, had not eaten since Tuesday and had been pretty unresponsive. Last night, he was airlifted to the Big Academic Medical Center. The air transport team did a great job and took good care of him. He was admitted to the Pediatric Intensive Care Unit where they have worked on him non-stop ever since. His lungs continued to decline and he was diagnosed with pneumonia in both lungs and Acute Respiratory Distress Syndrome. He began failing despite being put on the BiPap (forgive me I am not a medical professional) and 100% oxygen since his arrival last night. At around noon today he was intubated and put on a ventilator at 100% oxygen. He has three IVs currently (one in each foot, one in his wrist)and a central line was added in his hip this afternoon. His blood pressure was declining and unstable this afternoon. They worked hard until 5 p.m. this evening until they could get him somewhat stable. His Dad is at the hospital now and I came home to get some clothes and will return shortly. I do not have access to a pc there so I will try and update you every few days or sooner if I can.

Thank you for all of the nice comments, thoughts and prayers. Your heartfelt concern was much appreciated.

Wednesday, May 10, 2006

About Dear Son

Dear Son has aspiration pneumonia and is in the hospital. We will probably be there for a few days. They do not have internet access so I will not be posting anything until he is able to come home. Thank you for understanding.

Sunday, May 07, 2006

A Picture Paints a Thousand Words


“You’re different”, I said. Lonnie, responded quickly and urgently, “Nooooo, I am not” he said, as he talked out of the side of his mouth, his speech slurring and the slobber running down his face. “Yes, you are”, I said. And the conversation trailed off and quickly changed. The only difference was that the conversation didn’t have an ending. We didn’t fight over whether it was true or not; I had merely made an observation, as school kids do, and he denied it and that was the end of it. We kept playing some more and soon finished our game, Sorry.

Lonnie was our next door neighbor and a few years older. He had a slim build, blond hair and glasses. His body was all twisted and never straight when he stood. At the end of his legs were these huge metal braces which kept his feet straight and these worn, brown, high top leather boots of some kind that fit over the brace. There were scuff marks on the toes where he would scrap the ground as he dragged his shoes when he tried to walk. He walked with two metal crutches that fit over his arms. The arms were padded so it didn’t hurt. His speech was slurred and he seemed to talk out of one side of his mouth. He slobbered too when he talked. We didn’t really care, I guess. He was just our neighbor.

We placed softball in the street every night. I never seemed to notice that he wasn’t there or that he was never outside. The little yellow school bus picked him up every morning for school and yet, it never once occurred to me as to why he didn’t go to school with us. We thought of him as a cripple, as I recall. That was not derogatory though, it was just the only term we knew of that fit and the only term that was used at the time, almost forty years ago, to describe kids like Lonnie. We never said it aloud to him nor did we spend a whole lot of time thinking about it. It was just the way it was.

Looking back, we really didn’t know anything different. I say we, as in my sister and I, and the other neighborhood kids. We would occasionally go over to his house and play and it really wasn’t any different than what we did at anyone else’s house. I do remember the van though and there was a wheelchair for him. The wheelchair wasn’t used very often, just for transport, and the rest of the time, he used those crutches.

When Dear Son was born, I never gave it much thought. I had no idea of how to care for him really, in terms of the special chairs or devices that would make caring for him easier. Things like a feeding chair would make it a lot easier, but I wouldn’t learn about most of these things until a few years later. Dear Son was three when he got his first wheelchair. I used it for transport and feeding but quickly decided that I wasn’t going to use it much in my home, since having him sit in the chair like a vegetable, seemed like a pretty boring way to spend the day. It also upset me. I liked to let Dear Son play on his back or on his belly and then he would be smiling. I decided early on that whenever he was happy, we were going to do more of that activity, regardless of whether the therapists thought it was good for him or not. He couldn’t roll over so he’d play one way or the other, on a mat or a blanket, or simply in his playpen. His favorite spot, was the French door that opened to the back yard. He would lie there and look out at the pond and listen to the ducks and birdies, that frequented our bird feeder or just catch the breeze that went over his head. Frequently, he would scoot around the floor on his back, using one leg to propel his body forward. It wasn’t that I didn’t like the wheelchair but it just seemed like when he was in it, he looked disabled. Also, when he would sit there, he wasn’t living, he was existing.

I decided early on that I wasn’t going to take pictures of him in his wheelchair. I remember throughout the years, seeing a picture of someone in a wheelchair on a co-worker’s desk, and I always saw the disability and never the child. That is why, in all my pictures of Dear Son, you will never see a wheelchair, unless the picture was taken at school. I learned to get very creative in my pictures, such as taking them in the wagon or a chair or anything with some back support. I wanted people to see Dear Son, not his disabilities. In the last few years, I have had to change though. He’s getting too big and he can’t support himself well enough to sit in a different type of chair and I can’t dead lift him off the ground, so I now use the wheelchair a lot. It’s funny though, because I no longer see the wheelchair, I just see my son. Amazing, how things have changed.

Friday, May 05, 2006

The Silent Champ


We had just started our evening walk, as we always did, with Dear Son in his Red Flyer wagon and me, pulling him throughout the neighborhood. The wagon, was a gift from Uncle Mike, for Dear Son’s birthday, a few months back. The wagon was perfect for Dear Son, because it had a tall back that supported him, since he couldn’t sit up on his own. There aren’t many toys that do this, so this was a wonderful gift. We were heading towards the Riverwalk, which was a blacktop path that ran along the river, that flowed at the far end of our subdivision. The Riverwalk, was the place were the neighborhood boys would fish on the hot summer days and we would sometime pass them on our daily walks. My neighbor, who lived across the street, decided to join us. It would make the time pass quickly and make it more pleasurable as well.

We started walking and soon I became engrossed in our conversation. My neighbor, was telling the story of her mother who had recently come to live with them, because of her mental health issues, which she had all her life. They had become worse recently when her father died, so she took her mother in to live with them. Dear Son sat quietly in the wagon as I pulled him. He loved our walks as much as I did, and loved even more, getting outside. Every evening, he would scream with glee when I opened the door and the fresh air hit his face. By the time we got to the Riverwalk, he would be all smiles and mellow, enjoying the fresh air. He loved the wagon and tonight was no different. At some point, he would get tired of trying to sit upright and slide down into the wagon and laugh a big belly laugh. Then he might toss his foot over the side, secretly hoping his shoe would fly up into the air and I would make a mad dash to catch it. If it fell on the ground, he would let out a big laugh, as he liked to see things crash to the ground. I would laugh with him, teasing him as I would pick it up, knowing full well, he would repeat this game, several more times on our walk.

We had been walking a while when he began to slide down into the wagon. Tonight, he was trying to pull himself into a sitting position, as he sometimes tried, on his own. He had never been able to do this, in all the years of physical therapy, but it wasn’t because they didn’t work hard with him or that he didn’t try. It just never happened.

We were nearing the end of our walk, when suddenly, Dear Son had managed to pull himself up into a sitting position. It was the first time he had ever done this and I couldn’t believe my eyes. I stopped mid-sentence and applauded Dear Son, gave him some hugs and kisses and told him what a great job he had done. Dear Son was beaming ear to ear, he knew he had done a great job and something really special at that.

We finished our walk just in time for one of the Chicago Bulls Championship games. It was a time when the Bulls were in their heyday and Michael Jordan, #23, was their star. It was an exciting time for all of Chicago, seeing the basketball extraodinaire, in action. The newspapers were full of descriptions describing his extraordinary talent as if he were the only person on the team. I must admit I was in awe of him too, since he was so exciting to watch, especially when he would soar through the air as “Air” Jordan. You couldn’t turn on the television without someone talking about his extraordinary talent, making just average, seem like a bad word. I thought about his talent and was made him a champion. He certainly was beyond ordinary and possessed a special drive to be the best. His work ethic and his talent, were unmatched. I thought about what it meant to be a champion and how his talent was extraordinary, far beyond what most people were capable of and far, far beyond the ordinary. He was a champion. After the games, there would be the press conference where undoubtedly someone would ask him about the game and he would answer their questions, sometimes indulging us all with the glorious details. It was a really exciting time.

And then I thought about Dear Son, where it takes an extraordinary effort to do ordinary things. He too was a champion tonight, but it’s not the kind of thing that you’ll ever read in the paper, no matter how extraordinary it was. It’s not the kind of thing he can talk about, because he doesn’t speak. It’s not the kind of thing I can brag about, because no one cares. Their sons and daughters have done this for years and they checked off that box in the baby book, a long time ago.

But somewhere, out there, are lots of little boys like Dear Son, where it takes a monumental effort to do ordinary things. And yet, after three years of hard work, there is no party, no hoopla, no press conference and certainly no newspaper articles. The effort was the same, if not more extraordinary, but the glory was unmatched.

As the years have passed, I saw too, that these were the good times for Michael Jordan, the pinnacle of his career. One on which he can forever look back and be proud, one of the stellar moments of his career. I wondered if he was replaying those moments tonight as the Bulls play in their playoff game. My mind quickly shifted to Dear Son, who is now bedridden, and I wonder if sometimes, he thinks about the good ole days, where he worked for three years and finally was able to sit up in the wagon like a man, a champion. Extraordinary, for sure. Dear Son, the champ.

Wednesday, May 03, 2006

Eighty

The cards were standing neatly on the large breakfast bar. My mother had read each card to me over the phone as she received it and yet, she wanted me to see each card in person, and read every word again, as proof that she mattered. It was not about the fact that she mattered, really, but the fact that she was remembered. Remembered, by all of her good friends. At eighty, this is what you have.

It was a year ago that she made the big move. She sold her house and moved to the big city. Big Brother, as in my older brother, had purchased a weekend condo downtown a few years back and now owned a few of them; two he rented out and one was strictly for the weekends, when he wanted to get away from the suburbs. Her condo, is a one bedroom and faces south, giving her direct view of the lake, at all times. The floor to ceiling windows in the living room, provide a spectacular view year round, but especially in the summer when all of the sailboats are on the water. The Yacht Club is further down, but still visible, as is the large fountain, that our city is known for. The view, was what sold her on the place. After all, if she couldn’t do anything else, she could sit and look out the window, at this gorgeous view. Big Brother had many conversations with her over the last few years, on how she should downsize and give up her house for something that was smaller. Moving to the city, she would have all of the amenities she needs, under one roof. This would make it easier for her as she got older. We had many conversations around this and she loved the city. She now rents the condo from Big Brother who has a weekend condo several floors above her.

The transition has been hard on her. My mother has been widowed some twenty plus years, since my father died of a massive heart attack, when he was forty-six and I was only thirteen. She’s lonely now, having left all of her neighbors in the suburb and her friends from church. Her friends, many of whom are elderly, can’t get around, and coming to the city, is pretty much out of the question. When she moved, she got rid of her car and her dog so the transition has not been much fun. She misses her flowers, her yard and the birds, whom she used to feed daily. The cardinals were her favorite. None of these things are here though. The closest thing she gets to a cardinal is to view the ceramic birds in her display case or listen to the chirping sounds from her bird clock, that hangs on the wall. Her hands are crippled from arthritis and her fingers point North, East and West when she holds her hand upright. Her feet are a mess and have been for years. She refuses surgery however, which would improve her ability to walk. Other than that, she remains relatively healthy, after having recovered from a Stage 3 colon cancer and several skin cancers within the last five years.

She was excited to see me. I baked a cake and brought several gifts with me, that I thought she would like. I brought Dear Son along too and as a special surprise, my ex-husband, who the family still loves because he continues to take good care of Dear Son and me.

My brother and sisters however, were busy with their own lives, and hadn’t called or made arrangements for the big day. At eighty, you don’t know how many days you have left, so every birthday becomes important. Every time someone dies, I listen for their age and when it’s seventy five or more, I cringe because I know that one of these days, I won’t be so lucky. My mother is not worried about her impending death. She tells me her mother lived well into her nineties, so she is content she will do the same.

My free weekends, or the weekends that Dear Son spends with his Dad, are typically spent with Mom. I take her out to the grocery store and we go to lunch mostly. If the truth be told, I would love to do much more however she can’t walk and getting out at all, is becoming more difficult. She can’t walk and is adamant about not using a wheelchair. She uses a cane which does not provide the support that she needs. Our visits usually begin when I pick her up to take her grocery shopping. I take care to open the car door for her and our ride to the grocery store is not more than fifteen minutes. Once we arrive at the grocery store, she stops at the bank and then begins to shop. Typically, about thirty minutes into the visit, her feet begin to hurt and she had trouble standing. When this happens, it means that she’s going to be cranky to everyone because her feet are hurting. I hate this part. She checks out her groceries and attempts to use her debit card. Without fail, she can not slide it through the machine because her fingers are so crippled that she can’t grip the card evenly. The cashier, trying to be helpful, will give her some verbal tips which do nothing but upset her even more. She wants to be independent and yet, there are some things she can no longer do. The cashier continues to give her tips before taking the card and running it through herself. We repeat this exercise every two weeks or so.

I learned more about my mother in these fifteen minute rides than I have in the last forty seven years. These weekends though, I have come to enjoy. While I often hear the same stories, it’s the background or what’s behind them that makes them interesting now. I also have a good dose of reality of what it is really like to get old. She is quite lonely, as many of the people that are her age. It seems to me that most people can get around pretty well in their seventies, but once you hit eighty, the world takes on a whole different scene. Even the smallest tasks, require monumental effort.

So, today, was her 80th birthday. We spent a few hours with her and then it was time to leave. We said our goodbyes and she moved back to the sofa, where she would sit and stare at the lake, until the next time, I would come to visit.
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