The Boy in the Moon

I wrote my last post, Gifts and Gratitude, after listening to part of an NPR author interview with Ian Brown. Brown discusses life with his disabled son, Walker, and his book, 'The Boy In the Moon'.

The interview stirred up a lot of feelings within the disability community because of a comment he made about "disability masochists", which he defined as people who make their disabled child the most important, indeed the only important thing in their lives. He also said that he hesitated to write his book since he'd been turned off by some of the "misery memoirs" he'd read over the years.

After listening to part of the interview, I read some of the blogging going on about his comments. I found some wonderful, intelligent, very outspoken people out there who are raising severely disabled children. They weren't letting Brown get off easily for those unfortunate labels! I'm glad they were able to succinctly say what I was thinking.

I also turned to my Nouwen library to try and clarify my own thoughts about the worth of a life lived with severe limitations. I blogged a little about L'Arche, and what that philosophy means. It was a tiny touch of what it means, by the way. I'm so busy with day to day things that I don't have the luxury of writing as much as I'd like to.

Finally, I ordered my own copy of Brown's book so that I could put it all in context. Wow. What a cool find!

There is an entire section on his experience with L'Arche, including time spent with the founder of the movement, Jean Vanier. I don't know if he spoke of this in the NPR interview, because I never found time to listen to the entire thing. I had no idea that Brown was influenced by this community of people who live together, disabled and non-disabled. It was fascinating for me to read, although I must admit that I only got the book in the mail yesterday, and sped through it as fast as I could last night, due to very tired eyes and body. (Geez, I'm sounding pretty attention-challenged. I didn't listen to the entire NPR interview, and I skimmed the book. I plan to remedy both during my summer break. Being a school nurse has it's advantages!)

When I first read the term "disability masochist",  my honest fear was that I might fit his definition. It's not a nice label, no one wants the word "masochist" applied to them (no one I know, anyway). It didn't take me long to realize that there is nothing masochistic about my love for Daniel and the enjoyment I get from living with him and caring for him. If someone doesn't find this life fulfilling, then perhaps it could be seen as self-torture to continue on out of duty alone. Not in this home, though. 

In the end, I think it's an unfortunate term. His book is good. It's very thought provoking and well written. Brown is a writer by profession, and he tells a fine story.

Disability masochism is not really the important conversation to keep going. And for the record, I have never met anyone who fits the description. The parents I've encountered balance their lives the best they can. Having a child with extraordinary needs does make a huge difference in how you are able to organize your time, but it doesn't always have to be as limiting as might be imagined. I'm only speaking from my biased personal experience.

There are more compelling discussions that his book can and should bring about.

I love Brown's words on page 270.
     "These days I have a fantasy of my own. In my fantasy, Walker and people like him live in a  L'Arche-like community, with the help of assistants. It's a beautiful place, in a beautiful spot, with a view of the sea or the mountains, because for once, in this place, it isn't just those who can afford them who have access to the best views, but people who might need beauty even more, because they live with so much less. In my fantasy, this village is owned and inhabited by the disabled, on their schedule, at their pace, according to their standards of what is successful--not money or results, but friendship, and fellow feeling, and companionship. In my fantasy, it is the rest of us, the normals, who have to be "integrated" into their society, who have to adapt to their pace and their place. I can leave, I can go back to my more pressing and ambitious and even more interesting life, but I can also return to live with Walker, as Walker lives--slowly, and without much of an agenda beyond merely being himself."

Now, on to read Brown's book more slowly on this Saturday morning, and indulge a few of my own fantasies for the future. After all, nothing happens unless you first dream it.

Gifts and Gratitude

     I read Henri Nouwen's book, 'Adam: God's Beloved', when Daniel was about three years old. I'm the type of person who tries to make sense of things. I tend to live in my head, sometimes driving myself crazy with questions that don't have answers. The story of Adam is well-told by Nouwen, and it helped me make peace with disability.
     Nouwen was a priest and academic for most of his life. He wrote books, did theological research, and in general lived a life that placed intelligence in pretty high esteem. In 1986 he left university life to go and live with the mentally disabled in a L'Arche community in Canada called Daybreak. He would be their pastor for the next ten years.
     Part of his first assignment was to work with Adam, one of the most disabled in the community. He was taught to help him with the very basic tasks of bathing, dressing and eating. It scared him. He didn't think he had what it took to help someone with such severe limitations. He was afraid he might not do the job right, or that he would somehow hurt Adam. That was not the case. In fact, he later wrote that the friendship that developed with this very disabled, non-verbal man was one of the most transformative of his life.
      In Nouwen's book he wrote, "Speaking about 'Adam's Gift' is not romanticizing an otherwise quite demanding and unrewarding life situation. Adam's gift was a reality of everyday living...Amid all the planning of meals, cleanups, visits to the doctor, shopping, repairs, and countless other things to do, that question of the gifts of Adam, Roy, Michael, Rosie and John (other disabled core members) always remained central. Everyone knew that they would not remain good L'Arche assistants for long if they weren't richly rewarded--by the spiritual gifts of people like Rosie and John. They were discovering that true care is mutual care. If their only reward had been the small salary, their care would soon have become little more than human maintenance."
      Once, a pastor friend who taught theology visited him at L'Arche Daybreak. He felt that Nouwen was wasting his time and talent working with Adam.
     His friend asked, "Why spend so much time and money on people with severe disabilities while so many capable people can hardly survive? Why should such people be allowed to take time and energy which should be given to solving the real problems humanity is facing?" (A question that some still have, and one that reminds me of Judas objections when Mary used expensive oil to wash Jesus' feet.)
     Nouwen didn't feel the need to debate with his friend. He did later write in response to that conversation that the real questions of God are "Can you let Adam lead you into prayer? Can you believe that I am in deep communion with Adam and that his life is a prayer? Can you let Adam  be a living prayer at your table? Can you see my face in the face of Adam?"
     At the end of the book, Nouwen writes, "From a worldly perspective telling about our relationship makes no sense at all. But I, Henri, Adam's friend, decided to write it down. I didn't embellish it. I didn't soften or sweeten it. I tried to write it as simply and directly as I could. I am a witness of Adam's truth."
     It's a truth that many parents of  profoundly disabled children know, but find difficult to put into words without sounding sentimental. We're not superhuman. Our kids aren't angels. They're human beings made in the image of God, and we can recognize their gifts and offer ours in return if we choose to.
    
    

Recovery Time

Over the years, the main physical trouble that Daniel has dealt with is coughing and congestion that linger on. When I hear the first sniffles, I know that we'll soon be getting the nebulizer out to tackle his cough. He's never been hospitalized because of it, and it's never progressed to pneumonia. The trajectory it follows is familiar territory.

Friday night the sneezing from the night before turned into a croupy cough. We used our typical arsenal of Zycam, nasal saline spray, Vicks rub, Guaifenesin and a little castor oil tummy rub thrown in for good measure (thank you, Edgar Cayce). Unfortunately, this time he experienced fevers and cough induced vomiting of a worrisome color. A trip to the ER later, we have confirmation that there's blood coming from somewhere in his GI tract. Now we've added Zantac and an antibiotic to the mix, and are set up for a consultation with the specialists.

Through it all, he's a trooper. When he's sick like this, I spend a lot of time holding him and taking him for walks. The beach stroller soothes him, and it's especially nice outside right now. This morning during our walk he started laughing really big belly laughs over something. I'm not sure what tickled him, but it was good to see him so happy.

For awhile before this, I had spent some time in my mind worrying about stuff that needs to be done around the house. So many times my hands are tied when Daniel is having one of these episodes. I can look around and see that I need to dust and mop, but I can't get to it. It can frustrate me if I let it. The to-do list grew in my head this morning until he started to laugh. I remembered how insignificant my list really is. I will either get to it, or I won't. If I don't, it's really not a big deal.

Days like these help me keep my perspective. When I decide to look around at the spring flowers, smell the honeysuckle in the air, and watch Daniel happily playing with the strap on the side of the stroller, I experience peace. Just being able to take a day off from work to help him get back to normal again is a gift. Why does my mind want to spoil it by making up a list of "shoulds" that need to be done? Well, it didn't win today.

I did manage to get a few Easter decorations out of the garage and do a little dusting. But that's as far as I'm going with my "to-do's" today! 

Bring on the buffet!

Yesterday I got a call from Daniel's school nurse. He started middle school this year, so everyone is still getting to know him. She asked if it were ok for him to have "table food". Sounds like a strange question to ask about a twelve year old, but Daniel has had an aversion to solid food for years. He mostly likes to drink his meals! I send in things like sweet potatoes, oatmeal, stuff that the occupational therapist helps him eat. Some days are better than others, but he's always done much better for the school staff than me.

I said, sure, absolutely! If he's willing to try it, he can have it. She was pretty excited to tell me that he polished off an entire school lunch (he must've been REALLY hungry, lol). I started envisioning a weekend of real food for my guy-- baked potatoes and steak! Hell, whatever he wants! It's only Saturday morning, so we have yet to see how far he'll take this, or if it was just a fluke.

This little variation in Daniel's behavior made me philosophical. We don't see a lot of changes year to year. Growth is slow. It's always been so. We're old hats at this twelve years down the line. I don't burn out (I have days of frustration, but that's not the same to me as full-fledged burn-out), and I don't think he's often discouraged either. Why is that?

Something that helped me early on is a little book called 'Changed By a Child' by Barbara Gill. Here's a passage that is always with me, imprinted on my heart.
      
     There are days when we think we cannot do another feeding or give one more bath. And then there are those moments when we give ourselves completely in response to our child's need. We turn ourselves over to our child and what we are doing. We know the intimacy of placing food in another person's mouth; of sitting by a child's side in the dark, singing, so that he can sleep. We are not just putting on a shirt; we are consciously touching another person with love. When we surrender ourselves to these acts of physical caring, we experience love; we are healed and made strong. Our tasks are our opportunities. (Changed by a Child p.71)

Enjoying a sip of water from a straw.

Ignoring oatmeal in preference to his hand.

Then it's on to ya-ya-ing hand to mouth, and playing with some favorite toys.

I'm sure that from the outside looking in, it's hard to imagine how we deal with the day to day sameness that slow development means. Gill probably helped me out there, too.

     Living with our children every day, seeing them "conduct themselves naturally in their own spontaneous way," we see how they are people according to the capacities they have. We see their souls. Let us hold, always, this picture of our child in her completeness, even-especially-in the face of those who see her as decomposed, a collection of deficits. (Changed by a Child, p. 33)

Yeah, it might seem strange to celebrate a twelve year old boy deciding it's time to move from liquids to solids. For us, it's just a natural part of this ride we're on. 

Back to School

Today was our last day of spring break. We had ten days off and managed to divide it pretty evenly between time alone and time together. Melody and I shopped and had lunch on the first day of break. The following week Daniel took a trip downtown with me to pick out a new walker.

All of us attended a local acoustic night and heard some good music. Daniel yelled out his appreciation during one woman's rendition of 'Black Velvet.' He has good musical taste! We met a teenager there with similar issues as Daniel. We introduced ourselves as soon as we spotted her wheelchair stroller, and spent a lot of time talking. 

We managed to add some getaways to the mix, too. Melody flew to Virginia Beach to spend time with her cousins and their new baby girl and two boys, and Rich and I drove to Cedar Key for two nights. Daniel had his own private caregiver here to take him places without me, including the park and the mall. That's very unusual for him. The report was that he had a good time until the second morning when his mood started to turn a little fussy. When we pulled up in the drive he was outside in his beach stroller. I rolled down the window, called out to him, and he smiled. He was definitely happy I was home, and gave me the kisses to prove it.

The balance of it all was really nice. We ended it today with church, followed by some long walks and time in the shade. Tomorrow the kids will be back in school and I'll be back at my job as a school nurse, dreaming of lazy mornings and beautiful sunsets on the Gulf of Mexico.



Now I'm counting down the days until Easter!

Walking Tall

Wednesday we met with a new doctor for Daniel, a pediatric physiatrist at UNF, and got her input on his  AFO's (leg braces). On hand was his hippotherapy PT, aka the Queen of AFO's. I'm so glad we did this, because they were able to spend a lot of time with him, watching him walk, debating on the best brace for him, and also checking for any tightness in his muscles (he has very little, and treating it would most likely make him crumple over).

The verdict is that he needs a more flexible AFO. The Queen says his current ones are like ski boots. They don't allow him the movement he needs when he's walking. Both she and the doc also want to see him using his walker more, but we need an updated model since the one we have is seven years old and way too small for him. We haven't bothered with a new one because our PT at school transitioned him to hand-held walking several years ago. The problem is, he has way too much of a drunken swagger at times.

Since he was casted and measured just a couple of weeks ago by the orthotist who visits the school, I had to race to see if I could change the prescription before the new AFO's were made. In a rare stroke of perfect timing, I arrived at 4 p.m. while they were still open and available to recast him and make the changes to the script. We scored!

This is a parade of the AFO's he's had over the years. Our new PT, the Queen, feels that he might even be able to walk with a pair that end at the ankle. We're going to try some off-the-shelf shorter ones that we can buy reasonably cheap. Go Dan!

This is a video taken last June when he graduated from fifth grade. He's doing pretty well with the hand-held walking, here. He often tends to pull down on our arm when he walks like this, though. I think he knows better than to try that with his aide!

Another cool thing about this visit was that the physiatrist mentioned how much he resembles someone with Rett Syndrome. That's always been the closest diagnosis I could come up with to match Daniel's list of characteristics. Years ago he tested negative for it, which isn't surprising since it mostly affects girls, and boys with the deletion generally don't live long. I'm wondering if the missing piece of his genetic puzzle lies somewhere close to the MCEP gene, just not exactly the same as the one that causes Retts. We see our geneticist next summer, so maybe we'll get some insights there.

All in all, a good visit, good connections with new people, and hopes for improved mobility for my boy!

Another First

Until very recently we haven't had any outside help with Daniel's care. My parents are like a second mom and dad, but they live 900 miles away and we only get to see them twice a year. Daniel was placed on the Florida Medwaiver waitlist in the spring of 2003, and finally stopped waiting in September 2010. He only earned his rightful place through a crisis waiver after I was in a car accident and my lifting was curtailed.

The most important services we have now are respite and personal care for Daniel. This is huge. I usually get him up and out of bed, dressed, fed and ready for school before I leave for work at 7:20. After that my husband takes over and puts the finishing touches on his hair, brushes his teeth and gets his afo's on before transferring him into his wheelchair and rolling him out to the bus.

Today, Miss Rita came at 6:30 to help. We had coffee together until Daniel woke up, then I kissed him and got a few of his early morning smiles. I told him she'd help him a little more slowly than mom usually does. He's used to her because she's been coming over to provide respite since November, and even stayed two nights with him while I went out of town to celebrate my birthday. This was the first time I've been replaced for the morning school routine, though.

I love taking care of him, dressing him, feeding him. To me, it's a privilege to be that close to someone this far along in their lives. He's twelve, after all. But the whole point of the home and community based waiver is to give me enough help so that I don't have to turn to any sort of institution when it comes to his care. I'm forty-nine. I want to preserve my back muscles as long as possible so that I can do what I love, which is take care of my son.

My husband, his step-father, is able to get him to do things that I can't, like nod his head for yes. Daniel and I have had our own unspoken language for so long that he sees no need for that with me. So, Rich works and plays with him in the morning after I'm gone. He talks, Daniel listens. They have a great rapport. Rich broke his back in 1994, and lifting is difficult for him. So, we have a system where I have him up so that the only heavy lifting he does is transferring him into his chair.

To me this is a big step towards independence for all of us. It's time for me to share!

Looking Back

Since I'm now blogging for free, I'm going through the old website and making sure I have a hard copy of things before I shut it down permanently. I won't miss spending the yearly fee to keep it going, especially since it hasn't been "going" for several years.

I had to open the site builder to view pages that aren't published anymore, and I read Melody's poems (all two of them, she now tells me she HATES poetry--how is it we're related, again??) I love the picture we took for her editorial section.

There she is, writing one of her two poems, Mystical Magic:

Mystical Magic

I love the day

I love the nite

I love how the lake sparkles

I love the mist in the morning when I wake up for school

I love when the rain comes down

I love when it is nite and the flame of a candle shines

I love the first day of school

By Melody Murray, age 7

Here's the other of the two poems she wrote, this one for Daniel:

Angel of Love

by Melody Murray 2003

I love the way he smiles

I love the way he sleeps

I love the way he giggles

I love the way he sees

He always sees beautifully

He is cute and cuddly

He is my baby

I took the poetry sections down several years ago, so I'm going to have to do a lot of printing to save them. It's kinda bitter sweet taking the site apart. It was a great outlet for me for a long time. It helped me connect with other moms way before Facebook. I write more than I talk, so it was therapeutic and fun. The blogging forum is more immediate and less formal, though, and I'm looking forward to diving in.

I'm grateful Daniel was born in the computer age. It would have been very lonely without the micro listserv, the first that I joined when he was only a few months old. Later there was Angelbabymoms, and then Molehill Moms. I've met some incredible people through the internet, learned a whole lot that helps me navigate through the disability world, and just been able to be a more social version of my introverted self without having to leave home.

Here's to change!

Welcome!

This is my first blog. For a few years I kept up a website, danielsgift.com, and wrote essays and interviewed other parents of kids with special needs for a section I called, appropriately, Parent Profiles. My last note was in May 2007 when I wrote about trying to get a communication program going for Daniel. It's hard to believe that four years have passed, and even harder to imagine that he's twelve years old!
 
In true synchronistic timing, I started this blog the day that Daniel's first communication book came home from school with him. I don't know why it took so long. Between workshops on communication techniques, many emails between myself and assistive technology, SLPs and teachers, there has been a lot of communicating about communication. We finally have what is essentially a picture exchange system (PECS).

Looks like both Daniel and I will be communicating differently. I'm finally moving over to the blogosphere, and he has a handy dandy workbook. We're in sync, at least!