Happy 4th of July...A Lazy Summer Day

Dear Son and I enjoy taking walks in our area. I thought I might show you the walking trail near our apartment. It was one of the reasons I moved here. I think it's important to have a nice trail close to home, so it's easy to use. We walk this most days from June through October. I took the photos in order along the trail. Walking across the street, we start at the clubhouse of our apartment complex.

Going around the clubhouse is the swing (not pictured) which overlooks the river that runs along the apartment complex and golf course. The trail runs parallel to the clubhouse swimming pool, which is in the background. Our pool is quite nice, complete with fountains and pretty landscaping.

It's always relaxing walking along the trail and looking out over the river. We see a lot of ducks here and the red winged blackbirds are his favorite; they sing to him all of the time.



The bunnies come out here. We also see some beautiful butterflies in this area. These are the townhomes next to our apartment complex.

Passing more luxury townhomes.

I always love the look of paths in an area.

We see the blue herons in this area along the riverbank.

There are many bridges over the river. We are standing on one looking over the river and golf course. We've walked about a quarter of a mile at this point, not very far.

On the opposite side of the golf course are the homes that back up to the golf course. We love the pretty flowers here.

This is one of my favorite areas.

A nice picture of Dear Son and his pretty blue eyes. He is always quiet for most of our walks but he really loves them. It's getting a bit hard to push him though. The trail is not quite level; something you wouldn't notice if you were walking alone but something that is quite noticeable if you are trying to balance and push a hundred pound wheelchair with a young man in it!

Looking across the golf course. Our apartment complex in on the left in the rear of the picture.

More views of the golf course and nature area.

We are at the one mile mark about now. The entire trail is about 2.85 miles, or at least that is what we typically walk.

We walked to the end and are heading back home now.

I love this area here. Very secluded and tranquil. We see lots of squirrels and hear some beautiful song birds in this area.

Only 1/4 of a mile from home now. I love these bushes.

Almost home. Dear Son loves the sounds of the fountains in the front of our clubhouse. He always looks at them when we pass them.

Done! Time for a nap in the chair. Wiggles, our cat is eyeing the top of the chair, his favorite spot.
Notice his short legs!

We hope you enjoyed our little walk. I hope you get some time to get out and enjoy the weather and take some time to relax.

As for Dear Son, he's been having a hard time these past few days. He had another big seizure on Wednesday and couldn't go to school. Ped Neuro Doc increased one of his meds however it may take a bit for us to see the effect. Dear Son continues to have seizures, along with some severe choking episodes at night. I haven't slept much in the last two days and neither has he. Typically, I see more choking episodes as the seizures increase. Last night was a bit better than the night before and I am hoping we get some sleep tonight. He continues to be agitated and restless at times, which I suspect are also seizure related.

Have a wonderful holiday.

Organization Friday-Putting Things Away, The Stumbling Block

Fringe Lace Glass Plate

Recently, while watching the reality show “Kendra” on E!, Kendra stands in her the living room of her house with clothes all over the living room floor. Lots of them. She wants to get the place cleaned up before her fiancé comes over. She looks at the clothes and she says that she wants to get the place cleaned up so he really doesn’t see the real “her”. And that’s when it gets interesting. She has this look on her face that I have seen many times before. It’s a look of total frustration and total honesty. She really does want to get the place cleaned up but she has absolutely no clue on how to get there. It’s probably one of the most honest moments in the show and one I see a lot.

More often than not, most of the people I work with have no clue how to get there. They know what they want: a clean and organized space. We look at the magazines and they are filled with beautiful pictures of beautiful spaces. They make it look so easy. And then they say things like, “A place for everything and everything in it’s place.” But the truth of the matter, it’s not always easy if you don’t know what you are doing. Add to that, all of the messages that you have programmed in over the years from your mother, your family and whoever, it’s no wonder people get depressed when they think about getting organized.

Kendra’s situation is not unlike many of the people I work with. It doesn’t matter if it’s clothes or paper and more often than not, most of my projects start with the home office. But at some point, regardless of whatever project we start, we get the space organized and at that time, I put a routine in place for the client. A routine is a series of steps that is the absolute shortest way to get from point A to point B. We all want everything fast and easy today but it’s surprising how many people get caught up in one simple step: putting things away. So often, many women are so used to not knowing where to put anything that once they have a spot, they don’t follow through with the last step of putting items away. It is the single obstacle that must be overcome or you will always be spending more time and energy trying to keep up your home. If you are not in the habit and don’t make it a priority, you will never maintain your space. Any space.

Probably the one time of day where I see a lot of homes drop the ball, is the after work or after school routine. During those times, everyone is tired and most things are just dropped right inside the door, the nearest counter or the nearest flat surface. On top of that, add the mail and all of those papers from school, all of the electronic devices and you have one big mess. Once that is done, everyone is hungry, dinner is started or picked up on the way home, and another mess is underway.

But it doesn’t have to be that way. With a few simple changes, you can keep your space organized and beautiful. And here’s how. I’ll talk about my own routine to illustrate the concept.

The first step once you get in the door is to put your keys away. I place mine in a pretty wrought iron, nature inspired dish. You can use a dish, like the one in the photo, a plate or simply a gorgeous hook. Whatever it is, make it both functional and beautiful. By making it beautiful, you are more often to use it and keep it nice. Now you know where your keys are for tomorrow. If you have multiple drivers, create a space near the door for each person. I might suggest a chest of drawers near the entry giving each person their special place in a drawer for keys and such or something on the wall that can handle multiple sets of keys.

Hang up your coat and remove your shoes. I have a series of hooks near the door to hang our coats however notice I didn’t say hang “all” of your coats. Just the coat you wear. I place gloves in the foyer closet near the door so they don’t sit out. Ditto for shoes.

As you create your space near the door, I would like you to think of this as a bit of a sanctuary. When you come home, it’s the first thing you see. Keep it uncluttered and beautiful. You don’t need to see every coat and every pair of shoes the family has. This is especially important if you want to feel peace and serenity when you walk through the door.

Next, remove your electronic devices and charge them. You should have a special place to charge them, preferably near your keys however if there isn’t room for a charging station, select another spot. Just make it consistent.

Unpack your bags. If you carry a bag of sorts, empty everything in your bag and put it away. I carry a bag with my business supplies and a client notebook. I put the notebook in the office and file the bag. At this time, I stock the bag with anything that is needed so I can get out the door easily the next time. If I worked that day, I take a moment to record any income and expenses for that day, add items to my supply list and add any clients tasks to my weekly planner (to do list).

If you have groceries, put all of the groceries away. Do this before you do anything else.

Next, check for phone messages. I keep a spiral notebook for all phone messages near the phone. It doesn’t have to be formal, just pick one spot. I try to return my calls right away or if it’s late, the next morning. I delete the message immediately. You can also check your voice mail on-line. If you do, then make the call or add it to your to do list, whatever that might be.

For mail, I open it all and toss out the envelopes and extras. Bills are place in the bill notebook in the file drawer. Invitations are noted on the calendar and rsvp noted on the to-do list as well as dates to get gifts/cards, etc. I file the invitation in my HOME manual (Home Organization Manual for Efficiency-this is a Dream Organizer product/concept.). (When the time comes, I just pull the invitation.) If there are action items, I put them in my in box and try to manage them that evening or early the next morning. I try to keep my desk free of any paper.

Once Dear Son arrives, I unpack his wheelchair-his lunch pack, his backpack and his clothes. I re-pack his backpack and lunch pack for the next morning. This takes all of five minutes. He is now ready for the next day. I sign any papers and put them in his backpack for the next day. Since he needs a feeding pump that is sent to school, and since I need to use it that evening and the next morning, I place a reminder sheet that I have in plastic on the seat of his wheelchair as a visual reminder to place it in his backpack.

And that’s it. The key here is putting things away before starting another project or before starting dinner. You can’t expect to keep your home clean and organized if you never put things away. And you also may not be able to find things when you need it. I thought of a silly analogy to drive the point home. Imagine for a moment that instead of parking your car in the garage every evening, where it belongs, that you parked it in any one of a dozen spots near your home instead. Say, one day, you had a meeting at school so your parked it there. Another day, you watched a soccer game so you parked it at the field. If I told you to do that, you would tell me I am absolutely insane. You would tell me that it doesn’t make any sense. You would argue that the best place to park would be your garage where it would be every morning making it easy for your to leave home. You would tell me that you waste a lot of time every morning trying to remember where you left your car or that it took too much time to get there.

And that is why you need to make it a habit to put things away. It’s the shortest and fastest way to find anything you need the next day. So the next time you are tempted to leave your stuff out, just remember the garage analogy. If nothing else, you’ll get a laugh.

Note: I am a Professional Organizer and Home Stager. I own my own business called, “Dream Organizers”. My motto is: “Keep it simple. Get organized. Make it beautiful.”

...The "Organization Friday" feature is back by popular request!

Aspiring to Give Great Care, Taking Parenting to the Next Level

"It is not how much we give, but how much love we put into giving." ~Mother Teresa

I remember the Individual Education Plans (IEPs) at school. Once a year, I would receive the invitation to attend and every year I would attend. The IEPs is where the education planning for a special needs child would take place. During that time, the goals would be discussed and whatever accommodations that were required, would be included so the education plan could be carried out. It was a bit intimidating at first. I would walk into the room, with twelve other people. The principal would often attend at those times, plus the Special Education Administrator for the district, all of the therapists-physical, occupational and speech, along with his teachers. It was intimidating because I wasn’t certain of this process and how it worked and I wanted to make sure I did my best. I didn’t have any training in these IEPs but I knew they were important. It was also challenging because whatever accommodations needed to be made, often cost money, something that any school district, never had enough of. For example, when your child required a one on one aide to assist them in the classroom, well, that cost money. My job was to secure the aide, their job was to conserve their dollars. I needed to attend these meetings, be present, and be fully prepared to state my case, so that I could negotiate the absolute best education for Dear Son. The key word here is “negotiate” because that is what you had to do.

It was difficult for me in those early days, having to learn the whole IEP system and to negotiate for Dear Son. I would make sure on the day of the IEP, that I was impeccably groomed, my hair and nails were perfect and that I always wore a suit. This was the early nineties and that is what professional women did. I wore a suit to these IEPs not because I had to, but because I wanted to send a message that I expected the best for Dear Son and I would take nothing less. The other thing that made it easier for me, was not to view myself at Dear Son’s mother, who was negotiating his education, but to view Dear Son as my “client”. When I was at work and working with clients, I always wanted to give my best to them. And who should I advocate more for, than Dear Son? Once I viewed Dear Son as my “client” it was a lot easier for me to go into these meetings and negotiate his education since it took a little of the emotion out of the equation and made it easier for me to be firm with them on what I wanted. And they did take me seriously.

I remember taking the time weeks before the IEP, to create some good goals for Dear Son and then created a list of what I wanted for him that year. His physical and mental disabilities were so profound that he required a one on one aide. For that, I would get a letter from his physician detailing his need for the aide. Some years, I would sit at the table in the meeting for a long time, because I would refuse to budge on an issue for Dear Son. In order for an IEP to work, everyone in the room had to come to an agreement. Meaning the district would agree to pay for the services before they would put it in writing. And with the plethora of special needs children and a limited number of dollars, their goals were to conserve dollars whenever they could. My goal, as Dear Son’s mother, was to negotiate the absolute best education that I could for him, to give him the best chance at maximizing potential. They learned that we could work out an agreement ahead of time, or we’d be sitting at that table, a very long while.

It wasn’t long before the district coordinator would contact me a few weeks prior to our IEP. At that time, she would ask me for my goals and what I was looking for in terms of Dear Son’s education. I would know in my head what I wanted for Dear Son so I would ask for the moon, knowing that I would negotiate from there, giving up some things and then ultimately sealing the deal with precisely what I felt was best for Dear Son. Some years, I had to hire an attorney to get some input on the law to back up my case.These meetings/calls were tense at first but over the years, we became good friends. She knew that I wanted the best for Dear Son and I knew that her job was to conserve dollars. To negotiate the best for him, meant understanding the state laws, understanding the IEP process and knowing what could and could not be done.

But the IEP was just one example of giving my best to Dear Son. I made it my goal a long time ago, to give him the best care that I possibly could. That means, negotiating for the best education, getting him the best medical care and most important giving him my best every day.

Every time, he is released from the hospital, I am grateful. I view the fact that he recovered and that I have more days to spend with him as a gift. Each time, I know we are closer to the end. And because of that, every day is precious. I am so thankful that I get the opportunity to care for him. I try to show that in my actions. Not just giving him his meds on time or changing all of his diapers, but in my attitude. It’s starting every day with a smile and kisses. It’s being excited to see him. It’s taking the time to write up the instructions for summer school so that everyone has what they need and that Dear Son gets his feeding on time. It’s making the extra calls so that he receives the air conditioned bus since he can’t sweat and can overheat easily. It’s taking the time every day after school to read the note together about what happened that day and talking to him about it. It’s constantly raising the bar for myself and for others so that he has the best care that he can and the best life. It’s what I would want for my most cherished possession, my Dear Son.

And that brings me to how we spend our time. I was thinking today that as a nation, we don’t put enough time into our children. I mean, how often do we google things on the internet like, how to improve our diets, how to improve our health, how to save money or how to do just about anything. Or when we look at continuing education…how often are we taking classes to stay competitive in our field? But where are the classes on how to be a good mother or father or how to be a better parent? Who googles that when the kids are ten years old?

And how many of us can define our neighbors by their hobbies? We know the neighbor that is passionate about their yard or their flowers or the man is always washing and detailing his car and parks it at an angle in their own garage, as if it were a showroom. But which one is the neighbor that gives their children the best “care” every day or who puts their children first? You have to think hard about that one.

We see parenting examples all the time, not all of them good. We have the whole Jon and Kate Plus Eight saga of a family in crisis and yet, the show, I mean money, must go on. Talk about selling out for your children. I don’t think airing the family’s crisis and dirty laundry for millions to watch is giving the best to your children. I never thought Kate was the best parent and her total lack of disrespect for her husband, for all of the children to see, along with her controlling ways, is a train wreck. Certainly Jon plays a part in this but the mental abuse of Jon is over the top. I stopped watching that show many years ago. I can’t figure out for a minute why this woman isn’t in therapy. The children never seem happy and are always crying and yet she goes out on speaking tours. Is this something we want any parent to emulate?

And then we have the Duggar family with eighteen children. You have wonderful parents, with great values who live their religion and who give their time to them. You see that difference and yet, those people are wonderful parents and yet, the Jon and Kate, gets more press.

I often see parents of children spend a lot of time saving for college or working on getting material things for their children, yet are too busy texting on their blackberry to be fully present in the moment with their kids at the park. Dear Son and I walk a lot and I can’t tell you the number of times the parent is on the phone while out with the kids on a walk.

Giving great care to our children, and especially special needs children, is a goal we need to aspire to. And great care means not only what we can provide, but how we interact with them and giving our time to them. It’s making them our first priority and not our last.

I remember teaching a class on organizing for special needs children last year. I was talking to one of the parents and she had an issue at school with her daughter not wanting to eat for the staff and the staff not understanding how to feed her. As a result, the child didn’t eat all day and then consume a ton of calories when she got home at 3:30 p.m. I talked to the mother on how that wasn’t o.k. and that no child should go to school and not eat all day. We wouldn’t do it and we shouldn’t allow it to happen for our kids. Instead, I talked to her and gave her some suggestions on how she could include certain things in the IEP so that her daughter could get help with the feeding and then going to school to make sure that the staff understood how to feed her daughter and that it was getting done. It was difficult for this mother to speak up so that factored in to the issue as well. These things are the important things in life.

Caring for special needs children is time consuming, monotonous and very often boring. There are days when I used to think if I have to change another diaper, I was going to scream. But what changed all of that was Dear Son’s hospitalizations. Each time he pulled through, I would be thankful for my “gift”. I would treat every day thereafter as something special, another day that I got to spend my Dear Son. Every day became an opportunity to get in some more memories, to see him grow or to see him smile. I learned to change those diapers happily for changing them was always better than not having one to change.

But where is the reward in good care? Where is the reward in making your children’s life better? I was changing Dear Son’s fourth diaper yesterday in just over two hours. He managed to have his bowel movements separate from his urinations making for a lot of work. Changing a diaper for a 185 pound man who can’t roll over on his own, is a lot more work than for a one year old child. I changed diaper after diaper, among other things. It seemed like the morning would never end and yet it was only 8:30 a.m. As I finished the fourth diaper, Dear Son moved his left elbow up in the air slightly. Dear Son has never had any control of his arms and hands his whole life. Just this last year, through a lot of hard work by his teacher, he has gained some control of them. Each day, I check his left arm, if it’s loose and not tense, I know he can give me a hug. I wrap it around my neck and I give Dear Son a hug back and kiss his neck repeatedly. He smiles the whole time and has a sparkle in his eye. So when he raised his arm up, I took it and tried to wrap it around my neck for a hug, but it was too tight and he couldn’t do it. Instead, I wrapped my arms around him to kiss his neck. When I leaned over he gave me a big lick on my cheek, which is how he gives a kiss. I thought to myself that this is the reward for great care. A giant lick. And that is something to aspire to.

Note: Dear Son is seventeen years old and suffers from a progressive neurological disease and intractable seizures as a result of a random mutation of the ARX gene. This mutation causes infantile spasms, dystonia and severe mental retardation. You can read more about Dear Son and his mutation in the Journal of Neurology. The link is in my sidebar.

Photo Credits: The above photo is of my living room.

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FYI-The other day I had a problem posting in blogger because I could not copy from Microsoft Word and paste into blogger. The problem was due to my recent upgrade to Internet Explorer 8; I uninstalled IE8 last night and I no longer have the issue. I am still having an issue getting my feeds to update. If anyone has a solution for that, I'd love to hear it.

Make a Wish Update and Other Stuff

Last week, volunteers from the Make a Wish Foundation came to our home to talk about our wish. Thankfully, I printed off all of the lovely suggestions everyone gave me when I asked for suggestions for our wish. That was really helpful. The volunteers were so gracious and even brought Dear Son a gift! Dear Son had been having some medical issues in the days preceding their visit so I wasn't certain that he would be awake for their visit since they came at 7 p.m. I managed to get him up and into the rocking chair and he laid his head on a pillow on the table while we talked about the trip. After a while, Dad transitioned him to the new swivel recliner and he fell alseep. We talked to them about Dear Son's favorite things-Barney, listening to country music, his love of animals and swimming and tried to build around that. I also talked to them about his medical needs for the trip. We need a hoyer lift and IV pole for the room as well as some other things. As for other wishes, we asked them for suggestions however they didn't really give us any ideas. The only request I gave them was that I need things to be easy since it can be hard getting around with Dear Son.

They asked us a ton of questions and basically filled out a bunch of forms. We had to show proof of our driver's license, auto insurance and give them a copy of Dear Son's birth certificate. They asked us all kinds of questions-did we have our own luggage, what kind of camera we had and then specifically, how much storage on the camera. It was an interesting experience. They also gave us a choice on publicity, you either agree to it and refuse it. We agreed to it since I feel if someone is nice enough to grant you a wish, you should be gracious enough to allow them to photograph that.

The next step is the trip needs to be approved. Once that is done, they'll check with his physician to see if Dear Son can manage the trip. This should take around thirty days or so. If the trip is denied, then you or they come up with a different wish. We are open to suggestions and are simply appreciative that they would even grant Dear Son a wish!

Trips take three to six months to plan, according to the foundation. We are hoping to take the trip in early November, when Dear Son turns eighteen. I think that would be a lot of fun to do this trip on his birthday and then we'll always have these memories. My dream is that I see Dear Son's smiling face the entire time. If we can do things that make him happy, I will be excited. We have to take the trip during cooler months since Dear Son can't sweat, with the patch he wears (He wears a scopolamine patch to dry up secretions in his throat since he can't manage them. As a result of the patch, it does not allow him to sweat so he can overheat easily, hence the trip must be made when the temperature is cooler.)

We are really looking forward to this. After his last hospitalization, I knew that we needed to do something fun. I don't think Dear Son will survive another pneumonia. I can see Dear Son is getting weaker and is losing his ability to sit up. I hope he can endure the plane ride since he won't have a supportive seat, like we do for his wheelchair. I also don't know if he can physically sit up that long, without leaning on anything. And then there is the issue of trying to get him into an airplane seat. Currently, I use a hoyer lift to get him into his wheelchair. If Dad lifts him into the seat, then he is going to need some room in order to lift him.

We also have to figure out what we will do in terms of changing him. We need to lie Dear Son down to change him so we'll have to figure out how to do all of this at the airport since we can't do it on the plane. I really don't want to do a Texas catheter for the trip. Once we get approved, we'll have to check into the weight restrictions on the luggage and may need to have his formula shipped ahead of time. The Make a Wish Foundation has a travel coordinator that will get in touch with us once the trip is approved. They do this every day so hopefully they can make things easier for us.

Other than the trip, it's been a busy week. Prior to Father's Day, Dear Son began having more seizures and then some other medical issues. His feet started swelling, his legs turned blue and cold and the bottom of his foot was burning up. In addition to the seizures, he began sleeping excessively, around 20 plus hours a day and I could not arouse him. The day after Father's Day, he woke up at 5:30 in the morning with a seizure that last twenty five minutes. I tried using his vagus nerve stimulator but it didn't stop the seizure. I then administered his morning meds and the seizure kept getting worse. Finally, I had to administer Diastat, a rectal valium, and the seizure finally subsided. It took a few days for him to get back to normal but I think he's starting to feel better. I am finally getting some rest as well.

After that, summer school started and it's been a lot of work getting everything together. While I keep a template on my pc of last year's instructions for school, it still takes a while for everyone to get on board. Probably the biggest issue I had last week was the school bus. Due to Dear Son's inability to sweat and his weak lungs, he requires an air conditioned bus. It's in the Individual Education Plan (IEP) however for some reason, the school failed to notify the bus company that he required an air conditioned bus. I had to make several calls and after four days, they were able to get the bus issue resolved. The school apologized saying it was their error and the bus company had apologized as well, saying they didn't receive any notice. I understand those things happen however I was worried that he might have an emergency in the interim.

Dear Son is enjoying himself however. Every Tuesday and Thursday, the special education recreation organization offers extended days with extra activities. On Tuesdays, they stay in house but do various projects with art or music. Our cat Wiggles likes the art projects best, because he likes to play with them. When he does, it makes Dear Son laugh so it's extra enjoyable. On Thursdays, they go on field trips. These extended days allow me to work without hiring a sitter. His favorite days are Wednesdays and Fridays because he's down at the pool. His high school teacher saw him last week and said he was just glowing; he was so happy to be at the pool!

Finally, I am having some issues with blogger. Recently, I upgraded to IE8 and some people are experiencing the same issue that I am, being unable to copy and paste from Word into blogger. I typically write my stories in Word and then cut and paste them into blogger so this is a major issue! I don' t know of a work around. Posts like this I can write in blogger however my stories I like to write in Word.

I will try to post more often, now that summer school is underway. Oh, the bills for the May hospitalization have arrived. The billed charges, before discounts, were $254k; 92k was for the vagus nerve stimulator surgery to replace the battery (actually they put in a newer model) and $162k was for the ICU and the rest of the stay. Year to date billed charges are in excess of $330,000. Hospital bills arrive daily however thankfully, we have now met our stop loss.

Delay

I am sorry about the delay in posting. I wrote a post this morning in Microsoft Word and I can't get the "paste" function to work. I will try again later this evening.

Thank you for your patience.

Happy Father's Day

Dear Son's Dad

Happy Father's Day to Dear Son's Dad and all of the fathers today. Dear Son has been blessed with a great Dad who is always there to help. As Dear Son weakens, we rely on Dad more. Now that I can no longer lift Dear Son in and out of the car, Dad needs to accompany us on all doctor visits, along with all other visits. The list of his visits seems to grow longer every day. In August alone, we have senior portraits, a visit to the orthotics place, the pulmonary doc and the pediatric neurologist among other things.

Here is Dear Son's new recliner/rocker we got on Craigslist for $150.

Dad helps out financially too, without my asking. In May, when Dear Son was hospitalized for weeks, he paid for all of my parking at the hospital, which was a few hundred dollars; then there was the summer school after school program, another couple hundred dollars, along with all of the medical co-pays, another $500 plus dollars and today, we are getting a new (to us) leather recliner for Dear Son from Craigslist, since Dear Son is losing his ability to sit up in his rocker. I could never do all of this working part time plus taking care of Dear Son 24/7.

But it's not just physical and financial help that he gives Dear Son. He brings a great attitude when he comes over and tries to make Dear Son laugh. He worries about the little things with Dear Son and takes good care of him when it's his weekend. I can rest easy at those times and not worry about Dear Son.

Taking care of Dear Son is not an easy task, especially now that he has grown so much and continues to grow! Raising a child, and especially a special needs child, is not a one person task. I could never provide the good care that I do without the support and assistance from Dad. He works with me to help provide the best care we can for our son, even though we are divorced. And for that, I am thankful. So today, we'll honor Dad on his special day. We only wish all special needs children were as lucky. For they could use a father like him.

Dear Son Approved for the "Make a Wish"

Photo of Dear Son at summer school last July. He loves the pool or rather, he just lies in the water and floats for 45 minutes while his aide holds him the entire time. He zones out the entire time. He can't wait to get in the water though and as soon as he gets to his "spot" in the water, he closes his eyes and doesn't open them until it's time to get out.

While Dear Son was in the Intensive Care Unit last month, I had plenty of time to reflect on his life. As time goes on, his lungs are getting progressively weaker. He can no longer sustain either the Bi-Pap or C-Pap machines and there was much discussion as to whether he could survive an extubation, had he been placed on a ventilator. His throat muscles have deteriorated that he hasn't been able to process his secretions for some time now. In 2004, he got the g-tube, in 2006, he went on g-tube feedings and hasn't been able to eat anything by mouth since then. In addition, they tell me that they think he aspirates all the time. I have known for some time now that he has a progressive condition and that he will not recover. It is my understanding that he will most likely die from pneumonia so every hospitalization is like a race against time. As he lie in the bed, I felt that life for him, just hadn't been very fair. Any mother wants her child to have a good life, wants her child to be happy and to have it all. Dear Son however, has had almost sixty hospitalizations in his seventeen years. Far too many, if you ask me. Each time, we get a little closer to the end and I worry that one of these times, it will be over. I decided when he was there that I wanted to make sure that we would do something really fun while he could still enjoy it.

Last Sunday evening, I decided to check out the, "Make a Wish Foundation". I read the requirements and Dear Son easily met them so I completed the online form. On Monday, the local office called and on Tuesday I returned the call to the foundation. They asked me a few questions including his diagnosis and his doctor's name. They faxed a form and called his pediatric neurologist and by 10 a.m. on Wednesday morning, Dear Son had been approved for a wish.

While the other kids splash in the pool, Dear Son just floats the entire time.

Volunteers for the, "Make a Wish" foundation will come here within the next thirty days to discuss his wish and it will take three to six months for a wish to be granted. Now comes the hard part, picking a wish that he will love. And that's where I could use your help.

Dear Son loves people, animals and loves the outdoors. He loves swimming (o.k. maybe just floating in the pool) and country music. I think I would like to take a trip somewhere with him (his father will go on the trip as well) since the only place I usually pack for is the hospital. Also, since it's so hard to get around, it would be great to have someone make the trip easier for us. I have thought it might be fun for him to swim with the dolphins or to go to Nashville or some country music place. I'd also love it if he could get a therapeutic massage. I'd like him to have a lot of fun and to be pampered. If you know of someone who had a trip or if you have any ideas for him, I'd love to hear them. Dear Son has no real use of his hands or arms, can not speak, is not toilet trained and can not stand or weight bear at all. Keep that in mind as you think about things that he may enjoy.

Finally, Dear Son will be out of school until summer school starts on June 22nd. I probably won't be posting as much since I will be caring for him 24/7 on most days, along with work and doctor appointments. I'll do the best I can. On Monday, he'll receive a $3,000 custom back to his wheelchair that will better support him now that he can no longer sit up without falling over to the side.

Note: Dear Son is seventeen years old and suffers from a progressive neurological disease and intractable seizures as a result of a random mutation of the ARX gene. This mutation causes infantile spasms, dystonia and severe mental retardation. He also appeared in the Journal of Neurology a few years ago.

This is Not Your Father's Hospital Bed-Part III: Looking Forward Instead of Looking Back

Before Photo: This is what a typical standard hospital bed looks like when they ship it to you. Note the universal headboard and footboard.

After Photo: This is Dear Son's new Tendercare Bed. The Tendercare bed features a patented "slip over" headboard and footboard; the headboard and footboard just slip over the hospital bed. The hospital bed remains fully functional.

I remember being the in the Pediatric Intensive Care Unit (PICU) with Dear Son, just a few weeks ago, wondering if I would get to take him home. We are getting to the point, where one of these times, he is not going to make it. I was hoping and praying that this would not be the time, knowing full well, that all of his time is currently “borrowed”. As the chest x-rays flip flopped, I became more worried, one day they would be worse, the next day no change and then the following day, it would be a little worse. One tell tale clue that things are generally not going well, is how long you stay in the PICU; I usually will ask how long Dear Son will be there, so I can schedule my work around it. When I asked this time, they said two weeks. Today, hospitals move you in and move you out so when you stay in the PICU you, you know you are in serious trouble.

A close up of the nightstand. I made the lampshade.

Luckily, Dear Son made it through. Once he was transferred to the Pediatric floor, I began to think about going home. Once you have been there long enough, you know the steps: PICU first, Step Down, pediatric floor then home. But there was something different this time, Dear Son was getting his new hospital bed and we had been waiting for it to be shipped. We had something to look forward to.

Looking forward to something, is not something that happens very often when you care for someone chronically ill. Your life somehow changes over the years, as his needs increase, my life as I used to know it, disappears. My life and his life become melded into one where survival for both of us, is the only goal.

Before Photo: This is what a standard hospital bed looks like when they ship it to you. Most are used and nearly all come in this awful brown color. In the first photo above, I painted the headboard and footboard black.

I remember many years back, when they recommended a hospital bed. It was very depressing. The hospital beds, most of them used, are shipped to your house. More often than not, they bill the insurance for the bed as a rental, until the purchase price is met, then it becomes yours. Yippee. Not. No one wants an ugly, used, hospital bed as their bed. And what’s worse is that the worse the patient gets, the more time you get to spend there. Not only are they ugly, but your bedroom begins to look more like a hospital room and less like a home. And that is where our new bed comes in.

Gary Owens, started Tendercare Beds, a short time ago. As a woodworker, he created a bed for his wife, Gina, who had a hospital bed of her own. With his slip on, slip off, headboards and footboards, he changed an industry. No longer are hospital beds something to be avoided, but now they are something you can have, and be proud of. It no longer matters if the insurance company only pays for a used hospital bed, because you can make it new with a Tendercare bed. You no longer have to be ashamed to get a hospital bed for your loved one. You no longer have to be ashamed to let someone see your bedroom. But most of all, you don’t have take away your kid’s bed, and replace it a hospital bed. Can you really look your child in the eye, and tell them they are going to get better, when you bring in a used hospital bed? And who looks forward to that?

But with our Tendercare bed, we were definitely looking forward to that. We had placed our order for a black, raised panel bed. It would look perfect in Dear Son’s bedroom. More important than that, he would have a “real” headboard. Not a fake, bamboo blind headboard that I made, so he would have something, but a real one. And we all know that having a “real” headboard on your bed, is good feng shui. And when you are sick, it’s important to pay attention to that.

Here is Dear Son's Tendercare bed with the side rail up. The bed remains fully functional with the slip-on headboards and footboards.

On Monday, our headboard arrived and it did not disappoint. It was absolutely beautiful and brought tears to my eyes. Dear Son had a real bed. A real bed that still met his needs. I could still operate the hospital bed, raise and lower the bed, pull up the side rails, raise the head or the foot of the bed and no matter what I did, it would still look beautiful!

But the best part of all, was seeing Dear Son’s face. We had been talking about the bed for some time now. When he got the hospital bed the first time, from the durable medical equipment supplier, there was nothing to talk about. I had talked to the DME about getting him a brand new hospital bed, so we didn’t have to have an ugly used one, but that was just to make the idea of a hospital bed palatable. But this time, I could get excited about the bed and Dear Son could too! He came home from school and I wheeled his wheelchair straight into the bedroom. He looked right at his new bed and broke out in a big smile. His eyes lit up and he couldn’t stop smiling. Later, when I layed him in the bed for the first time, he looked straight up at the headboard with a big grin on his face. You could see it in his eyes, that he was happy. And that was the best part!

I called Gary to thank him for making this lovely bed for Dear Son. Gary had contacted me when he first started his business, asking me what I thought of his bed. I told him it was a fantastic idea and I thought many retailers would be happy to sell his beds. I told him that I imagined Pottery Barn and Nieman Marcus would want to carry his beds. After all, they are really nice. He made this bed especially for Dear Son and it’s the first time he used the third panel in the raised panel design. You can see this third panel on top of the raised panels on the headboard. I think this bed is just beautiful.

Note the third panel. This is the piece that is above the pillow sham. The raised panels sit behind the pillow sham.Here is a view of the headboard. You can see the two raised panels and then the third panel above. Can you believe it's a hospital bed?

Here is a picture of the head of the bed in the "raised" position. As you can see, the bed remains fully functional.

But what’s really amazing, is that he’s changed an industry. No longer do the Durable Medical Equipment (DME) providers have to sit back and wait for people to call them when they need a hospital bed. No, they can actually tell people that they have a hospital bed they will want. And therein lies the beauty of a Tendercare Bed. A Tendercare Bed is not only a bed that meets your needs, but a bed you will want. You don’t have to be ashamed to get your child this bed, or your wife this bed or your brother or sister this bed. You can order this bed and be proud. But the best part of this bed, is that when they get it, they will cry with tears of joy, not tears of sadness. Because when you get a hospital bed, that’s what used to happen, you would cry. You would cry because you lost your own bed, you would cry for what was coming ahead and you would cry for the life you were leaving behind. If you know of anyone who got a hospital bed, you will know that is true. They not only cry, they will beg you not to put them in a hospital bed. But this time is really different. Now you can cry for joy. And that’s exactly what I did when I saw Dear Son’s bed. I cried. It was beautiful.

Note: Dear Son suffers from a progressive neurological disease and intractable seizures as a result of a random mutation of the ARX gene. This mutation causes infantile spasms, dystonia and severe mental retardation.

Gary Owens is the owner of Tendercare Beds. If you would like more information or to purchase a Tendercare Bed, you can contact Tendercare Beds here.

Sneak Peek! A Child's Playroom Makeover

This is the valence that I made from a single drapery panel. I cut the panel, hemmed it with mending tape and then added black trim with black crystals.

I thought you might enjoy a sneak peek at a child's playroom makeover I am working on. I am in the final stages of the makeover and will showcase the complete before and after pictures in a few weeks. The bookshelf is on backorder and won't be delivered until June 24th. The floor has yet to be installed and I am waiting on shipment on the rug. In the meantime, here are the details:

This is the area rug I chose. I use this black rug to anchor all of the pattern I used in the room and to give the eye a place to rest.

• Color scheme is lime green, black and white. Walls are lime green with black and white furniture and accessories. I chose black and white instead of pink since I feel that pink is so overdone for a young girl. I thought the black and white would be sophisticated but not overdone for seven years old.
• The room is 10 x 10 and there will be a vanity area, a desk for homework and art, a reading area and a play area.
• I made the valence using one drapery panel and then purchased some trim with some black crystals that will shine when the light comes through the window. I used the same fabric to upholster the desk chair.
• The vanity area includes a small child's desk that I created into a vanity. It will have everything she needs to sit and do her hair, nails or make-up (just for play). I have used a common object in a new way to store her headbands. I am saving that as a surprise for you! All of the drawers are labeled. Her favorite part to date is the drawer to store her hairbrush! She said she never had a place for that before!
• The desk area includes containers for markers, pens and pencils and overlooks the white flowering crab apple tree in the back yard. It was just magnificent a few weeks ago and looked beautiful against the lime green walls.
  

A narrow bookshelf will hold some books and a few knick knacks.

• The reading area includes an upholstered chair that is also a recliner. The bookshelf will hold a few books and knick knacks.
• The room will get a new maple laminate floor and I'll use a black area rug with white leaves on it.
• The closet has been customized with wire shelving that is adjustable. That way the room can grow with her.

The chair is actually black and white although it looks cream in this picture. It's also pretty comfortable.

The little girl has seen the progress to date and loves it. Her mother says that she invites all of her friends over now to see her room. She tells them on the phone that, "It's not Hannah Montana but it's black and white". The other day she came home and I had just finished putting on the black and white stickers on some of the decorative objects and she called her Dad up to show him all of the items. She showed him how the desk is just perfect to do her homework and then showed him how she can read in the chair. What is great is that she takes great pride in keeping the room fairly neat and organized. Since the room was done over several visits, I made a rule that once something was organized, she had to keep it that way. She's done a great job.

I found these packages in the scrapbook aisle at Target. They were approximately $1 each. I used these to decorate some wall decor. I used the "clipboard alphas" and spelled out her name. I sealed all of the wall decor with Modge Podge. I wasn't too sure about this idea however it was the little girl's favorite. I used the rub ons and transparencies on top of her dressing table. It has a glass top and I simply cut and placed these items on the top beneath the glass.

I used two of these chest of drawers on either side of the desk. I ordered them in white. We had glass tops made to keep them from scratching and I topped each of them with some black and white paper.

While checking out black and white items, I found this blog devoted solely to black and white. It is called, "Black and White Delight".

*To see the finished playroom and the rest of the playroom makeover, click on the "Playroom Makeover" label in the sidebar or click here.

Note: I am a Professional Organizer and Home Stager. I run a business called, "Dream Organizers"; my motto is, "Keep it simple. Get organized. Make it beautiful."

Tablescape Thursday-Ladies Who Lunch!

A simple and pretty pink tablescape.

After spending most of March in the Intensive Care Unit with Dear Son, it feels good to get back to doing something fun and creative. At the hospital, my tablescape consisted of a waterproof pad for a tablecloth, that I placed on the rolling hospital tray, mainly to prevent any germs from getting on my plastic (gasp!) dinnerware that I take to the hospital for such events. I have found over the years that it's better to take my own silverware, cups and plates than to scrounge around in the hospital break rooms looking for plates. I don't own nor do I like paper plates, foam plates or anything plastic to be used at a dinner table. That's just me.

So this week, I have decided to have lunch with a friend of mine. I found these beautiful pink tulips at Trader Joe's while picking up some Ahi tuna for lunch. Lunch today will be salads with romaine lettuce, mandarin oranges, toasted walnuts and some marinated Ahi tuna steaks with a slice of garlic toast. Pink, green and cream have long been the colors in my home so it was only fitting that I create a pink, green and white tablescape for this week's lunch.

Pink tulips, a cherub and a pretty vase.


Covers from my favorite magazine, Veranda, repeat the tablescape colors.


A white tablecloth, a few candles and a simple lunch.

I hope you have enjoyed my ladies tablescape. For more beautiful tablescapes, please visit Susan's blog at, "Between Naps on the Porch".

Note: I work part time as a Home Stager and Professional Organizer. I run a business called, "Dream Organizers"; my motto is, "Keep it simple. Get organized. Make it beautiful".

Concerned

Dear Son spent most of the weekend sleeping although we managed to get in one small walk on Saturday and two on Sunday. Yesterday, he had a lot of choking issues-he seemed to choke on his saliva all day. I tried just about everything I could, making certain he was on his side, raising the hospital bed up high and sitting him up in the rocker. I worry he is getting sick again. It's not only the choking but the fact that he was extremely heavy yesterday, all dead weight. That's usually a telltale sign he's getting sick. At 180 pounds, that means that he is extremely hard to move. He can't roll over when he's well and when he's like that, it just about does me in. He also felt like he had a fever last night however I checked and he was fine. The ICU docs told me that they think Dear Son chronically aspirates any time he is lying down so I am concerned when I heard all of this choking. Last night, he yelled out many times during the night and there didn't seem to be anything I could do to console him. I hardly slept all night and neither did he.

In addition, he was supposed to have some labs drawn on Friday by a home health nurse. At discharge, they didn't tell me the agency name and while I could have called, sometimes, you hope things go just as they have set up, without my prompting every bit of the way. I have a friend who is a home health nurse and tried to have her draw them on Saturday however she didn't have any luck finding a good vein. Dear Son is pretty marked up from the hospitalizations and then add to that, the Scopolamine patch that dries up his secretions (also makes it hard to draw blood), it makes for a difficult draw. Dad will have to come over today and we'll have to take him to Big Academic Medical Center for the draws. He needs quite a few labs-5 seizure levels, plus CBC with differential, BMP and liver enzymes.

I finally finished nearly all of my medical paperwork from the hospital and in general for the last two weeks. There is always so much to do when I return home. Not only do I disinfect everything that was taken to the hospital and do all of the laundry but all emergency sheets are updated with the medicine changes, emergency bag is restocked, all medical records are updated with the surgery and hospitalization dates, everything gets filed, etc., etc. I have about five or six medical bills left that require some action but other than that, most of my paperwork is done. I probably did around twenty hours of paperwork alone over these past few days. That is my least favorite part!

I sent Dear Son to school today and hope things will improve.