The Memory Box

It’s hard to decide what kinds of things should go in a memory box. I have one for Dear Son and one for myself. The objective of a memory box is so you’ll keep just your favorite things and not keep lots of stuff to make your home cluttered. I am highly organized so that’s not really an issue, but I do try to edit fairly well.

Typically, you have just one memory box to store all of those important momentos. When the box gets full, you edit, making choices on what objects to keep or rather, what objects are more important to you than others. Over time, you’ll look back and then you will have all of the keepsakes from the highlights of your life. And therein lies the dilemma.

For most people, you simply keep a finite amount of things. You don’t worry so much about tossing out too much, since there are always new events or things coming into your life. Life marches on and so do the memories.

But what about when life is, well, more finite. I have some things for Dear Son that I don’t want to part with. The question is, how much is too much? What if I get rid of some things and then he passes? Will I regret having eliminated some stuff?

I saved his AFOs. AFOs are leg braces that he wore as a toddler. He started wearing them when he was three and got a new pair every year. He never wore shoes much before then. He didn’t walk and well, his feet were kind of balled up and lacking tone so putting on shoes was an exercise in futility for the most part. Shoes were just for looks. But the AFOs were important. Some mothers save their baby’s first shoes but I saved his AFOs. I used to save all of them up to the present. That means one new pair every year. It was cool to see how much he has grown. The plastic braces fit around his foot and halfway up his leg, so it gave you a good impression of his little legs. What mother wouldn’t love that? But did I need to save them all? No, of course not. I got rid of quite a few some time ago and saved the others.

But what do I save? Or rather, what should I get rid of? I have a small maple rocker that he loved for many years. Ten years of rocking in that chair. I love it and I can still see his happy face sitting in the rocker or his face leaning up against the window as he would look out.

Or what about his Red Flyer Wagon? That was cute too. I thought about making it into a storage chest of sorts. Adding new legs to it and then adding a maple top to it. In the center of the top, adding picture frame molding and putting a picture of him in his red wagon on top. What a wonderful reminder of Dear Son as a little boy. I thought I could store all of his scrapbooks in there; the ones I’ll make when he’s gone, when I have lots of free time on my hands.

And then there are all of the school projects. I don’t keep any of the ones he didn’t make himself, well, not really anyway. If I were to be truthful, he didn’t make any of them himself, but there are some of them that they made with his hands, so a turkey for Thanksgiving might have a picture of Dear Son’s hand dipped in paint. Those are keepers for sure.

But what about all of the Barney’s? I have a half of a dozen Barney’s that he loved so much. All of them, dog eared and loved a lot by Dear Son. How do I throw those away?

And what should I do with all of these things? If I throw them away and he dies, I have nothing. If I keep a few of them, will I wish I had saved more? I have fewer things to save, since he can’t do as much. So that makes what he does have and what he used to do, all that much more important. What do you do when they don’t make memories anymore? You look in the memory box. You open it up and remember the good times. I am certain when the time comes, I am going to need all of these things. And I bet I’ll be glad that I kept them.

Something to Makes You Think...and then...the Thogger Awards

"BATHROOM-PAINTED FLOOR"

*IMAGINE YOU ARE AT A PARTY....*

*YOU'VE BEEN DRINKING......*

*(not that you would...)*

*AND THEN YOU HAVE TO VISIT THE BATHROOM.... *

*You open the door.... *

NOW, REMEMBER,*

*THE FLOOR IS JUST*

*A PAINTED FLOOR!*

* KINDA TAKES YOUR BREATH AWAY.....*

*DOESN'T IT?*

This would mess your mind up!

*****

And certainly make you think...And on that note, I'd like to thank Neonatal Doc, who has nominated me for a Thogger, or a Thinking Blog Award. This award was originally started here. It was just a little over a year ago, when we both started blogging. That was back in the days when he didn't get 78 comments on a post. I can say that I knew him when.

It has been over a year now since I started blogging and it’s pretty amazing how many new blogs have come along. Some are really terrific and unfortunately don’t have the volume or the applause they deserve. Overall, I think the best part about blogging is getting to see a situation from the “inside out” versus the “outside in”. Having Dear Son in my life certainly opened my eyes up to the challenges and issues that face the disabled, all through the eyes of a once little boy. I was humbled by the enormity of it all. I am still amazed and impressed by the actions of those who don’t have anyone disabled in their immediate family and yet, are so caring and so aware of the challenges special needs children face. No child deserves a life of disabilities but those children do deserve to live. A commenter on my blog once said to me, that she didn’t think I was the. “type of woman who would measure her life by what she has lost but by what you were given.” I am fortunate to have been given a Dear Son, who always makes me think. In addition to him, there are a few blogs that I find particularly noteworthy. These are the blogs that make me think, and also make me thankful that they blog, so that their voices can be heard.

So in keeping with tradition, I must nominate five blogs, that haven't been tagged. I'll nominate the following five blogs:

1. The Wheelie Catholic- The Wheelie Catholic is, "A blog about inclusion of Catholics with disabilities, providing information and resources, with humorous anecdotes written by a Catholic quadriplegic.”

If you haven’t had a chance to read it, you might want to check it out. Always first class, always top notch and it always makes you think. Recently she wrote a post titled, “The Spiritual Experience of Disability”. In that she writes,

“I've been asked many questions over the years about my disability. But I'm always surprised by how infrequently I'm asked this question even in religious settings: what is your spiritual experience of disability?The answer to this , of course, is different for everyone with a disability. In my case, the experience of living with a disability has deepened my faith as a cradle Catholic. I pray more, feel the presence of God more and have been led on a journey that I never anticipated…”

You can read more here. It’s no wonder “The Wheelie Catholic” was nominated for, “Best Individual Catholic Blog” in the 2007 Catholic Blog Awards.

2. OncRN-I started reading this blog and was utterly fascinated. It was fascinating being so "up close and personal" reading about the death of her patients and yet, it was like watching a train wreck. You know you shouldn't look but you couldn't help but do it. OncRN writes so beautifully and so eloquently about death. I find her posts about her dying patients, so touching and fascinating at the same time. I can only think of how lucky her patients are, to have her by their side.

3. Micro Preemie Twins: The Story of Holland & Eden. Another favorite blog. What I love about this blog, is watching these two parents, really step up to the plate and do an amazing job with their girls. Their daughters, were both born premature and have cerebral palsy. I can't fathom having to care for two children with disabilities at the same time. And yet, I am amazed by everything they do to help their daughters enjoy every day and how hard they work with their daughters, so they will have every opportunity to go as far as they can.

4. Growing Up With A Disability David is a 21 year old man with cerebral palsy. I enjoy reading David’s blog, because when he describes his physical challenges, of what it’s like to have someone help him, it gives me a glimpse into what my own Dear Son might be thinking. He’s the closest thing I have to wondering what goes on in Dear Son’s mind. But I would be short changing him immensely if that were the only reason for reading his blog. He writes very eloquently about many of the challenges facing the disabled that it’s definitely worth checking out. He is someone I admire.

5. The Wait and The Wonder- Moreena is a stay at home mother who writes a great blog. Sheis the mother to "6-year-old Annika, who is currently waiting for her third liver transplant, and 3-year old Frankie. She lives in Normal, Illinois, where she gardens avidly (but badly)." "Annika has had two liver transplants (at 12 months and 15 months of age), and is currently re-listed for a third transplant due to internal bleeding issues. Medical crises have become the stuff of normal life around here, and we worry every day about Anni's future. But we also do our best to give Anni a regular childhood, and appreciate the joys of every day not spent in the hospital. And, well, even the days spent in the hospital." What I love about her blog is how she instantly takes you inside their lives and talks about not only the challenges her children face, but the dynamics between her and her husband. I find it interesting to read. She is an excellent writer and has quite the following.

So those are the blogs that make me think. According to the rules, now that you have been nominated, you need to nominate five other bloggers who make you think, and who have not been nominated before. You need to attach a link to the original post of how it all started. You should also include the Thinking Blog Award.

Red Rover, Red Rover, Let My Friends Come Over

Dear Son was getting ready for school, when I told him about our company. His physical and occupational therapists would be coming by after school, to assist me in working with his Hoyer Lift, as I had been having trouble in my attempts to use it. His Occupational Therapist had contacted me two weeks ago, to answer some questions for me about a therapy form and had offered their services. Dear Son was quite excited, that someone he knew, was visiting our home. He smiled when I told him they would be coming over after school and I knew he was excited.

I got him off the bus and the Physical Therapist was just arriving. Dear Son smiled at her and got really excited as she followed us inside. The Occupational Therapist arrived minutes later. Once inside, I showed them his normal after school routine as I placed him in his rocker. He was so excited to “show off” and rocked for them as well as demonstrated the transition to the rocker. I explained to them I supported him for the transition into the rocker and how he communicated to me that he was done. I said that I have to sit right by him because once he’s tired, he can just slide right out of the chair in a second and crash to the ground. When he gets tired, he gives me a “flick” of the hip. That’s where he takes his hip and moves it slightly, as if to say he’s done. You have to “get it” and then remove him promptly otherwise, it’s not safe. I explained the hip “flick” as I call it and Dear Son did it right on cue. The Physical Therapist commented on Dear Son’s receptive language and how he understands so much of what goes on. We then showed them Dear Son’s room, and the space challenges of using the Hoyer Lift to get him out of bed and into the wheelchair. (It was determined the mesh piece to lift him was too small and unsafe to use so we need to order a different one that provides more support.) Dear Son was just so proud. You could see he was happy to have someone over and happy to show them his home.

One of the issues for him, and I am sure other children like him, are friends. It’s not that Dear Son doesn’t make friends easily, because he does. He’s the type of kid in the class that they would probably vote as “most popular” among both the kids and the staff, if that were possible. He has an easy going smile, a good laugh that makes everyone laugh, a handsome face and is the first one to get everyone on their way to a good time. The real issue is doing things with friends, and having friends come over to the house.

Many of Dear Son’s friends and classmates, are in wheelchairs and many don’t speak. Even for those that do, they have other issues that warrant inclusion in his particular classroom. His classroom, is typically one that has exclusively special needs students, as their needs are typically best met in this type of classroom as opposed to be included in a regular classroom (Certainly this is a big issue and there are pros and cons regarding inclusion; I won’t expand on that here but in Dear Son’s case, this has worked best.) The problem comes in that more often than not, they don’t have their friends come over. There are many reasons for this, most boil down to the fact that it’s just plain too hard. It’s hard to get them from place to place, they have special needs that make it difficult (maybe they have meds or g tubes that require feeding at certain times, etc.) and that’s if someone is available to take them there and back. It’s compounded by the fact that if you don’t know a child, it can be hard to watch two of them. Heck it’s a lot of work just taking care of him. It’s also challenging because many of these children, have different communication methods, especially if they are nonverbal. You have to learn how each child communicates his needs-eye gaze, equipment and body language to name a few. As a result of all of these issues, more often than not, their friends just don’t come over, making school their number one place for social interaction.

Taking them on an outing is a lot of work as well. It’s not easy going to a restaurant, some can’t eat, some are g tube fed, some can’t handle the noise in there, etc. Or they have other issues, like the one child who is autistic I believe, and goes to the grocery store with the classroom and wants a “particular” apple, like the one someone else is purchasing that is already in “their” cart, and no other apple will do. It’s a whole different world than one most of us are accustomed to. It’s also hard handling one child, let alone more than one, unless their parent goes along.

The bottom line is that Dear Son doesn’t have friends over and because he can’t speak, he doesn’t get to talk to his classmates on the phone, or instant message or via e-mail. We take for granted our social interactions and they are a big part of our lives. Heck, we don’t even consider them as blessings, because we take them for granted. But for these children, they have nothing. If they don’t have siblings, their lives can be quite boring at times. I always think that is why they enjoy disaster so much or when things go wrong. At least it’s exciting.

I also have to wonder how they comfort themselves when they feel fear or when new things happen at school that make the phones ring off the hook for regular kids. How do they handle these things? Certainly Dear Son thinks about things. I know that because when I talk to him about things he is worried about, he gives me a kiss on the hand when I hit the nail on the head.

And what about prayer? The Wheelie Catholic, one of my favorite bloggers, had a post recently about how her disability affected her spirituality. I commented on how I wondered what Dear Son did when he was afraid. For many of us, we pray. What do they do? How do we teach them about prayer and comfort in times of need? Certainly I pray with Dear Son but I don’t know that Dear Son knows his prayers.

There are so many issues at times in caring for the disabled that we forget about the “normal” things, the things that are important in our lives, the things that bring pleasure to us. And as they grow, and the physical challenges of managing him get exponentially harder, it becomes an even larger challenge.

And therein lies the power of Barney. I wrote a post a long time ago titled, “A Letter to Bill Gates” about the power of the Acti-Mates Barney and how it became Dear Son’s best friend and is a friend to many Special Needs children. Even at fifteen, he still talks to Barney, just not as much. I am reminded of this every time I take him to the Pediatric Neurology Clinic at Big Academic Medical Center. There is a picture in the examining room of the Velveteen Rabbit. Under the picture is the phrase, “When someone loves you long enough, you become real.” I often think of Dear Son and Barney when I read that as I am waiting for the doctor to come in the room. Maybe someday, we can do a better job of providing for disabled children, first by having daycare to allow parents to work and daycare for the social interaction, and then resolving other challenges to the disabled, that we can focus on ways we can make their lives truly better, not just in terms of functionally better, but enriching their lives. Enriching their lives by making it easier for them to do the things that we do, going out with our friends or having them over and having a good time. Maybe that’s why they are called Special Needs children; they just don’t get what we take for granted.

Rainy

We had stopped by the mall on our way home. It had been raining outside and I had just taken the wheelchair out of the trunk. Dear Son was six years old at the time and did not want to get into his wheelchair. Granted, we were just there to pick up some make up I had ordered at the department store, and it wouldn’t be long, but he wouldn’t cooperate. He had just started this thing, as I call it, where he would bear down the minute I lifted him out of the car and want to sit on the ground. It had been going on for a few weeks now, at random, but was clearly becoming a trend. It didn’t seem to matter if it was raining, snowing or anything else, or even if the ground was still wet, he just wanted to sit down, on the ground and he refused to get in his wheelchair. Where was this coming from? I had no idea, I just wanted it to stop and to stop now.

I admit I had been pretty spoiled up to that time. I can’t recall that I ever had any behavorial issues with Dear Son and I was thankful for that. He was always a happy go lucky kid and a huge extrovert. The minute he saw anyone, he had a big smile for them and was his old charming self. But this behavior, this had to stop.

I picked him up off the ground and finally got him in his wheelchair. We picked up the make up and then went home. As I was going home, I thought about what had been happening these past few weeks and what might be causing this behavior. I had also noticed that he was fussy when I got home from work. This was unusual for Dear Son and I couldn’t put my finger on it. I began to reflect on everything that happened over the last few weeks and realized that I had just started back working full time and hired a babysitter. Granted, it was only for three to four hours a day, and was a Grandma type he loved, but still, something wasn’t right. I watched his behavior closely when I came home from work and soon began to put things together.

I made a few simple changes to our day. First, when I came home from work, I would sit Dear Son on my lap and give him tons of hugs and kisses and talk to him. I began to do this the minute I came in. He would smile and give me these big old belly laughs and when he couldn’t stand it anymore, he’d scoot off my lap and onto the floor. From there he would go about his business and began to play. Then I could relax, change my clothes and get myself some dinner.

Next, I began to spend more time with him after work. I started taking him for long walks again or taking him out to swing out back. They were simple things but I gave him my time, even though I was tired.

The behaviors disappeared almost overnight. It was nothing more than Dear Son needing more attention from me right after work. After all, I had been gone all day and even though his Dad got him off to school and got him off the bus, he still missed his Mom. It wasn’t as though I wasn’t paying attention to him when I got home, I was. It was just that I was tired after working a full day, and would change my clothes, get some dinner and then give him all of the hugs and kisses and play with him. I just needed to do these things in a different order.

It’s amazing how little things go a long way. I learned after that, that it was easier to change my behavior than to change his. I continued to use this technique today, always looking for ways to change what I am doing, to affect Dear Son’s behavior. So often, we spend a lot of our times trying to change others, when it’s so much easier to change ourselves. The result sometimes, make everyone a lot happier.

Reminder

It has come to my attention that some of my post titles and some of the writing from my posts are being used by another medical blogger as their own. The writings on my site are my own and if you'd like to site my blog, that would be appreciated. Please note the copyright on the header.

Thank you.

Coming Full Circle

He comes home from school every day and we have this little routine. Little Cat is waiting by the door for him to come in. I wonder sometimes why Little Cat does it. Yes, he comes around when I get home but not always. But for Dear Son, he waits by the door for him to come in, as if he knows. Dear Son smiles the minute he sees his kitty and once we’re inside, we take off his coat and work on getting into the rocker, his favorite thing.

It’s hard sometimes, as he’s winding down. There aren’t too many things left he can do; the rocker is one of them. I take the wheelchair over near the rocker and tilt it all the way forward until the foot rests hit the ground, while he is strapped in the chair. Once that is done, I go to the front and remove the foot rests entirely until his feet touch the ground. His feet will do nothing more than touch the ground. They don’t support his body any longer and there isn’t much tone. The legs are mere appendages, almost as if a decoration on his body, since they have long outlived the function. I maneuver my arms underneath his to dead lift him, holding him close to my body for maximum support and then spin him around real quick to the rocker which is facing the wheelchair, with minimum distance between the two. He doesn’t have any strength in his legs at this point, to help me even briefly for the exchange.

Once in the rocker, the ritual begins. We usually talk about his day, but his eyes are on the cat. I sit to his right in the upholstered chair and to my right is his wheelchair, which is now empty. He watches the cat as he climbs up onto his chair smelling every bit of Dear Son’s essence. The cat then settles down sitting on his arm rest, purring all the way. As the purring gets louder, I hit the “mute” button on the television and Dear Son’s ears are filled with the purring of the cat. He loves to listen to him purr and I tell him that purring are a kitty’s way of saying, “I love you”. He smiles and rocks even faster. Sometimes we listen for the ducks that eat the birdseed out on the patio. Dear Son’s ears take it all in. I switch back to the television and let him rock until his body can take no more, then do the transition once again with the wheelchair next to his feet for his legs that no longer work. Once he’s done with the rocker, we move to his bed for his after school nap.

The day takes a lot out of him. School, the bus ride home and finally the rocker, like the icing on the cake. He’ll sleep until dinner, if you want to call it that. I am still not sure that I’d call two cans of Pedia Sure and a can of water through the g tube dinner, but whatever. I still deeply miss cooking him dinner and seeing his face smash into the food, his sign to me to hurry it up and get the food in faster. He loved eating supper and I remember so much how he loved my home cooking, so much in fact, he refused any other food they made in the classroom or any food that they would have on their community outings. What mother wouldn’t love that? That was just the way he was.

He wakes up in the morning, happy and smiling every day. He always has. I think of every day as a gift. I am thankful getting to spend another day with him. My days are full, taking care of him. It’s really a lot sometimes, giving the meds four times a day, ordering meds, ordering supplies, the doctor appointments, getting him dressed, physically lifting him and just about everything else. I try to have some balance in my life but when you take care of a child like him, your eggs are always in one basket. And therein lies the problem.

He goes to his father’s house, one night every other weekend. It’s nice to have a break, to be able to go to bed whenever and not have to get the midnight meds, to not have to get up in the middle of the night to change him, to reposition him, or to get up at four in the morning to start his g tube feeding so he’ll be done in time for school. But on the other hand, it’s pretty lonely. I almost always hate those nights. I don’t hear him breathing in the other room and sometimes, I can’t get to sleep because it’s just too quiet. I don’t see his beautiful face when I get up in the morning and it always makes me wonder what on earth I am going to do when he’s gone.

The CD plays in the background and the song comes on called,”How Could An Angel Break My Heart?” It’s one of my favorite songs and I often think it’s how I’ll feel when Dear Son passes, with the words changed of course. Dear Son took my heart the day he was born. I doubt that will ever change. I wish sometimes, that it didn’t have to be an all or nothing with him. You invest your life so fully with these children and yet, it’s never enough. There are never enough minutes in a day to suck it all in.

I wonder when and how it will all end. Will I wake up one day and he’ll be gone? And what will I do when I have to get up in the morning and there is no one to greet me with a big smile and those beautiful eyes that lock into mine? And what will I do when I don’t have his beautiful face to kiss? I think back to those early years when he was born and I wondered how I was going to live with his disabilities and what it would mean. I thought back to all of the things that I thought I would be missing out, that he would be missing out on and how it wasn’t fair and how I wished it was different. None of those things ever really mattered. In the end, my joy as a mother was never about what he “could do” or what he “couldn’t do” but about who he is.

We are on our way back from the longest and hardest walk of our lives. I spent a lot of time wishing we were on the other path. While we may have started in the forest, we gradually made our way to the other side, with the sun dappling through the leaves on our way and finally into the open where the sunshine beams bright. The sun will set soon. And when the sun finally sets, I’ll kiss him one last time and know that he is finally at peace. A new song will start playing in my soul called, “Un-Break My Heart” … and it will be a long time until the sun will rise again.

The Big Test

Earlier this week, I had the opportunity to babysit for my niece’s first child, a three month old girl. She had a corporate meeting in the area and had just returned to work two weeks ago. It was an exciting opportunity to get to enjoy this baby and take care of her, even if only for a short time. I say exciting because, not only haven’t there been any babies in the family since Dear Son, but with everything that went on from the day Dear Son was born, it was as if I never really got the opportunity to simply enjoy my baby.

I was amazed at how easy things came for her. Looking in the direction of a sound, smiling and interacting in general with everyone who was there. The Grandma came by, the Great Grandma stopped by along with several other relatives. She was happy and interactive. I couldn’t help but contrast this with my own Dear Son. Nothing came easy for him. Not only didn’t anything come easy for him but he really didn't achieve any milestones in his first year of life. His first year was spent in the hospital, having multiple EEGs, on steroids to control the seizures as well as a variety of medications. Other than when he was on the ACTH therapy, he never really cried. (You can read more about his first year here in a post called, "Don't Hate Me Because I Am Beautiful.")

I spoke with Dear Son about the arrival of the baby the day before they came to visit. I told him that when he got home from school, the baby would be here. I was curious as to how he would react with another child in the house, specifically a baby. Would he be jealous? Would he be worried in some way? After last week’s incident with the hospital bed, I just wasn’t sure.

He arrived home from school and loved seeing the baby. He was excited everyone was there. His Grandma, who is the baby’s Great Grandma was there, as were his Aunt and Cousin. He was happy to see everyone. I put him in his rocker after school and asked if he wanted to hold the baby. Of course, he can’t really hold the baby but I held the baby on top of his arms. He looked at the baby and gave her his best grin. I asked if he wanted to kiss the baby (Dear Son can’t really kiss-he simply gives you a quick lick with his tongue due to his issues.) He couldn’t reach her face so he gave her a soft head bump for a kiss. I was surprised at how gentle he was although I did tell him to be gentle. I told him how proud I was that he gave her a kiss. They left soon after that.

Later that evening, when I tucked him into bed, I told him what a great thing he did that day. I told him he would have made a great “big brother”. I explained that his father and I loved kids and that we wanted to have more children however I thought that he (Dear Son) was going to need his Mommy’s help and that I didn’t think it would be a good idea. I said I needed to take care of him and what a pleasure it was to do so. I told him how proud I was of him today for taking such good care of the baby and kissing her. Dear Son smiled and I kissed and hugged him good night.

As I left the room, I realized that I had succeeded. Many years ago, when Dear Son was quite young, I was asked what I wanted for his future. I said that I wanted him to feel good about who he was, to be able to give and receive love. I thought this was especially important in light of his disabilities.

For most parents, the test of how well they did comes when their child hits a major milestone: graduates from college, marries a nice person, etc. But for me, the test came this week. And Dear Son, he passed with flying colors. Sometimes your children surprise you. And today, my Dear Son made me proud.

Character

I was channel surfing the other day when I came across an interview between two women. It had to do with eating disorders and the interviewer was asking the woman, who I believe was a formal model, some tough questions with regards to the choices she had made. This woman was currently being treated in a rehabilitation center for bulimia. I think, but what caught my eye was not the conversation around the eating disorder, but her comment about character. She said something to the effect that in Hollywood (and elsewhere) all of the emphasis is placed on how you look and the emphasis is never upon your character. People don’t seem to care who you are, or what you are about. It doesn’t matter anymore whether you have good character or if you are a bad person, it all boils down to how you look. She went on to say that even as you get older, the focus continues on appearance; it doesn’t matter what you have been through in life, or what you’ve learned or who you are, it’s just about your looks.

I thought about what she said and then I remembered the kids in Dear Son’s classroom last year. They had just started to stand out among their peers. Not for their disabilities as much as their looks. The girls, more so than the boys. At around junior high, you can’t help but notice the beautiful hair on the young girls-their hair washed every morning and styled with a straight iron to get that long lush look as well as the golden highlights in their hair. But the Special Needs girls aren’t like that. There hair might be combed in the morning, but more often than not, it’s a bit messy. And their aren’t any highlights. It’s not that their Mom’s didn’t make the effort, it’s just that they aren’t washing and styling their hair every morning and the girls hair gets messed up from sleeping on it or from their lack of head control. They don’t wear thongs on their feet to school in the summer and they don’t get pedicures with pretty polish on their toes. The boys aren’t as dramatic, but there really isn’t any gelled hair among the group. In the summer, the girls wear their short skirts and have beautiful tans, the Special Needs girls, well, they look a little pasty. No tan for these girls. The bottom line is that what is fashionable for regular kids, isn’t fashionable for them.

As they enter high school, it gets a bit more dramatic, as you might imagine. But one thing that doesn’t change is who they are. The Special Needs kids still grown and change but their essence remains the same. Their character remains the same. They still live honestly with no pretense, every day. While their experiences shape them, they don’t change who they are.

My mind switched back to the model and then back to Dear Son. My son will never have to live in that world, or actually, he may live in it, he just doesn’t know it. His character remains the same. He is who he is. He lives every day honestly and from the heart. We don’t place value on that though nor do we as a society, place value on disabled people’s life. If we did, we’d have daycare for them and things would be more accessible.

And then my mind switched back to the model again, and how she said that even as we get older, the focus continues on appearance; it doesn’t matter what you have been through in life, or what you’ve learned or who you are, it’s just about your looks. I thought about Dear Son and what he had been through these last few years, then I thought about his character and then I remembered how his favorite thing to do this year is to go out in the hallway with the therapist and look at the beautiful high school girls as they walk in the hallway to change classes.

Yep. The model was right. No matter what you’ve been through, it still boils down to how you look. Only in this case, I think it’s o.k.

The Hospital Bed-Part II

I had talked to Dear Son all morning about getting the new hospital bed. Today was the day it was going to be delivered. I often talk to him about what is happening that day, or what is going to happen, meaning where we are going, or why things are happening. I can usually tell by the expression on his face, if he gets it, and how he feels about it. But the hospital bed conversations, were going over like a lead balloon.

I try hard, to create some excitement for things that we are doing, especially those things that he really needs or has to do, like getting the new bed. I desperately need it so I can use the Hoyer Lift which does not fit under his current bed. From Dear Son’s standpoint, I was concerned about his comfort. His current mattress was relatively new. He had received it around Christmas time in December of 2004, when he was in the hospital. He had been bedridden for a while at that time and it seemed like the best thing we could do for him. As it turned out, he would sleep for months after that, unable to attend school in August of 2005. It took him ten months to recover from that hospitalization to where he could begin to attend school again.

I had spent the morning, taking apart his current bed, removing the headboard, taking the frame apart and then removing the mattresses to another room, until his father would pick them up and take them to Grandma’s. The delivery men were supposed to deliver the new bed in the afternoon. I had made a call to his father regarding picking up Dear Son’s mattress later that evening.

Dear Son was rocking in his chair as he listened to me talk to his father on the phone. As soon as he heard that his mattress was going to Grandma’s, he seemed relieved. I got off the phone and talked to him. I told him that he could sleep in his old bed when he went there. He suddenly began rocking faster and smiling. I asked him, “Were you worried that you were going away along with your mattress?” He stopped and looked me in the eye. I told him that he wasn’t going anywhere and that he was staying with me. Suddenly, he seemed happier and began rocking.

I thought back to a conversation that I had on the phone just a few weeks back when I was writing the ficticious Baby Toby conclusion. I was talking to a friend of mine and had explained the part about about the disabled twin brother going to an institution. Dear Son has gotten very upset and started to cry when he heard me talk about it and I immediately got off the phone and had to explain to him for twenty minutes that it was just a fake story and had nothing to do with him. So the conversation today about the new hospital bed had him worried that I was giving him up.

As I put him in his new bed that night, I told him how much I loved him and that he was never going away. I told him that he should never worry about that. I kissed him good night and hoped he would sleep well.

I woke up the next morning with the most glorious sound filling the house. It was Dear Son snoring, loud as can be. I think it was the best night’s sleep he’s had in a long time. And mine too.

*It’s been almost a week now since he’s had the new bed. He continues to sleep well since I am able to raise the head of the bed up, to keep him from choking on his saliva.

The Restaurant

The teenagers were sitting at various tables in the restaurant. They were full of life, a little on the loud side, but very excited. I couldn’t help but notice them as I waited for the rest of my friends to arrive for our monthly get together. The chaperones or teenagers with them, were keeping them in line, so to speak, in case they should get too loud or be inappropriate in some way. I couldn’t help but notice their excitement: their wide eyes, their smiles, their eagerness to be not only in the restaurant, but fully listening to every word, as if it were the greatest day of their life. There wasn’t any part of the conversation that didn’t hold their attention. When it was their turn to talk, they did so eagerly, asking questions of the person sitting across from them and enjoying their food.

There was a stark contrast between these teenagers and the other patrons in the restaurant. With the other patrons you could tell, even at a distance, who was engaged in the conversation and who was not. Some people did all of the talking while some people did all of the listening. At times, some of them looked engaged in the conversation and at other times, not so much. There seemed to be no real order to their conversation and no real flow.

But when I looked at these teenagers, there was no doubt that they were interested in the conversation. Not only were they interested, but they were asking a lot of questions, eagerly awaiting their answers. Once they answered the question, it would remind them of another similar experience and they would tell the story with such vigor, as if it were happening for the very first time. You could just feel the energy.

As I watched them, I couldn’t help but think how totally engaged they were in the moment. They were living fully in every second at the restaurant. I thought back to my own life, and how when I was younger, I often fantasized about how it would be to have my first house, then my first "new" house and the list goes on and on. Once I purchased the house, then my thoughts would shift to decorating the house. Of all of the different types of furniture I would like and how I wanted the rooms to feel.

And then a few years ago, when Dear Son started deteriorating, I began to remember what it was like previously, when he could walk with a walker and stand on his knees.

And then I thought back to my wedding day and how as much as I tried to take in every moment of that day, I just couldn’t. It seemed like it went so fast. I couldn’t savor it all. There were just too many things happening on that day that warranted my attention.

As I looked back over the various times in my life, I realized that I was busy anticipating the future or looking over the past, but the present would sometimes escape me. And yet, here were these teenagers in the restaurant, fully engaged in the moment. As you might have guessed by now, these were Special Education students out with other students in the class. They spoke eagerly with the “normal” students. I couldn’t help but think that they got it right. Not just today, but every day. They live absolutely every day, “in the moment”.

My mind shifted to my own Dear Son, later that evening, as he watched the cat put his paws on the fishbowl. He looked at the cat and then looked at me, eagerly waiting for the cat to “get in trouble” for having his paws on the fishbowl and eating the water plant on top. As soon as I said something to the cat, Dear Son was just full of laughter over it all.

It makes me wonder sometimes, how they got it right. Maybe it’s because we spend too much time living with our heads and they live every day from their hearts. Sometimes, it’s good to be Special Needs. After all, sometimes you have to teach the “normal” people a good lesson.

After the Saga...

If you haven’t already, be sure to check out Ex Utero’s post today called Baby Toby-Authors' Notes, which details why we wrote this series and what our plans are for a sequel.

I’d also like to thank him for such a wonderful invitation. We had a blast writing the story and it was a pleasure to work with him. I'd also like to thank everyone who read the story. We hope you enjoyed reading it as much as we enjoyed writing it together.

The Saga of Baby Toby: The Conclusion

----->Click here to start at the beginning.

Start here today at Tales From the Womb.

6 Months Later

“Well, today’s the day they should get their subpoenas,” Tom said to me on the phone. “I can’t wait…those bastards, doing what they did to Toby.” I knew better than to say anything more to Tom, since I didn’t want to incense him in any way. We hadn’t agreed on the lawsuit. I felt it was a simple error and well, let’s just say, Tom didn’t. I just wanted it to be over. My life hadn’t been the same since Toby arrived and Tom and I did nothing but fight since his birth. I was sure it wasn’t good for Toby and it certainly hadn’t been good for me. We had just celebrated our seventh wedding anniversary last week, but somehow, things just weren’t the same. Tom and I talked some more and suddenly, the doorbell rang. I told Tom I had to go. “Tom, you have a good trip now, O.K.” “And a safe flight home.” I always worried about Tom and his business trips. I was always relieved when he walked through that door; and maybe even more now, after I had quit my job to stay at home with Toby. It just gave me more time to worry.

I opened the door and it was Brent. “Hi!” “How’s Toby’s beautiful mother today?” he said. “I am just fine.” Brent was cute like that, always looking out for me, especially when Tom was gone. I think Tom put him up to it really, but it didn’t matter, since he was always welcome. “I was just wondering if you might be up to some lunch?” “Well, Toby’s sleeping, I am not sure it’s a good idea.” “Come on.” “I’m really hungry and I thought you might want to share some dessert with me,” he said with a huge grin. Brent and I always shared dessert when we went out since Tom and Brent’s wife didn’t really care for them. “I guess I could use a break today,” I said. With that, my voice cracked just a bit and Brent picked up on it. He wanted to know what was wrong. I didn’t want to say anything. He knew that Tom and I had it rough these last few months and he felt a little guilty since he was caught in the middle. It was nothing he did actually, but rather, just the fact that I wanted to use a different doctor. Brent understood; it was Tom who wasn’t so keen on the idea.

I finished getting Toby ready and we got in the car. “So, are you going to tell Dr. Brent what is wrong today?” “Us doctors are pretty good listeners you know,” he said with a smile. “Well, I really shouldn’t. It’s just that today’s the day the doctors will get the subpoenas, or so we think.” “I don’t know why we had to sue…it was a mistake…and they were sorry…and Toby’s doing o.k.” With that, I began to cry. Brent put his arm around me to console me. Toby was quiet which was unusual for him lately. He had been so irritable lately that nothing seems to quiet him down. Maybe it was the car ride or maybe, it was the fact that no one was arguing, as Tom and I did frequently now.

“I think it’s time you knew the whole story,” he said. “Story?” “What story?” I said. “About Tom,” he said. I looked up and was very surprised. After all, there wasn’t anything I didn’t know about Tom. We had a long courtship and he was my soul mate. “I am going to tell you this story and I need you to never repeat it to Tom. If he knew I told you, I think he’d kill me,” he said. “O.K.” I said. “Let’s hear it.” I cringed as I said it, not knowing what to expect. I didn’t have a great feeling about this.

“As you know, Tom and I go all the way back to the first grade, that’s when we met. What you don’t know, is that Tom had an identical twin. His twin brother meant everything to him. Tom’s brother was severely disabled at birth, due to oxygen deprivation, and had cerebral palsy due to a physician error. Tom, on the other hand, was the picture of health; good looking, athletic, etc. His brother, who looked exactly like him, would spend his life in a wheelchair. While Tom could run and play sports, his brother could do nothing but lie down all the time. He couldn’t speak, he couldn’t stand, he couldn’t do much of anything. His father, not wanting any part of this, put him in an institution and never told Tom about his twin.”

“When we were in the first grade, Tom got a call at school and his parents came to pick him up. They had to go to the hospital to make arrangements for his twin brother. He had died of aspiration pneumonia. It was the first time that Tom learned that he had a brother. When they got home, he asked his father about his brother and why he never told him. His father said that they were poor and they couldn’t afford to take care of Tom and him too, especially with his disabilities. So they gave him up. Tom was shocked. He asked to see some pictures of his brother and his parents showed him “one”. It was the only one he had, the one that they took at birth. Tom never forgot about his brother and would ask his father questions about his brother, but his father refused to talk about it. Tom was very angry and never understood how his father could do this to his brother.”

“When Tom was in high school, he did some research and found the institution where he brother was raised. He went back and talked to them. One of the people that cared for his brother was still there. She remembered his brother and told Tom all of the stories about him. He asked for pictures and she showed him pictures of his twin brother. As his twin, he looked just like Tom, except that he was much thinner, in a wheelchair and had a buzz cut for a hair cut. He asked her lots of questions and learned that his brother was never able to walk, couldn’t talk and could never stand. Tom was terribly upset and shaken by this and never could forgive his father for giving him up. He also never forgot about it. He went home and asked his mother about his brother one day and why they didn’t sue the hospital for the error. She explained that they were very poor and at that time, couldn’t afford an attorney. Tom never forgave him for that. It was then that Tom really focused at school. He was determined to never be poor again, since he paid a high price for his father being poor. That’s why Tom never misses a sales quota. He never wanted to be in a position like that.”

“Now then, when you delivered Toby, Tom wanted to be there, but his flight was cancelled. He paged me and I assured him that things were going to be o.k. When he found out there were some problems with Toby, he was determined to get to the bottom of it. After the doctors told you two what happened, Tom went ballistic. It brought back all of those memories, of his twin brother, of his father, of the care taker and those pictures of his brother in a wheelchair, the brother he never knew.”

I was so involved in listening to Brent’s story, that I hadn’t paid attention to where we were. Here we were, smack dab, in the middle of a cemetery. “I think it’s time you see this,” he said. We walked over to the tombstone and there was his brother’s name, “Toby A. Riddleton.” I looked at the tombstone and then looked at Brent and I started to cry. Suddenly, it all made sense.