No Rest in Dreams

November 30, 2010

Groggy with sleep, unwilling to disturb my cocoon of blankets even to reach out and turn off the alarm, I lay replaying the dream from which I have just awoken. Dreams are ephemeral. I often struggle to grasp the last wisps of them as sleep drains out of my brain and the reality of the day enters. This morning, for some reason, the dream has stayed with me.

Dreams are, so frequently, just bizarre. Hidden meanings lurk in their depths I’m sure, but how do you attempt to decipher the meaning of elephants blocking a bridge, flying sans airplane, or even years after high school, a struggle to open your locker. Sometimes though, it is all too obvious that a dream is a well-designed metaphor for thoughts that have been lurking in the convolutions of your brain.

In my dream this morning, my husband and I were going to go to a restaurant located on a city street. When we got there, all of the parking spaces on the street were open. The entire street was empty. Yet, we couldn’t find the right parking space - first parking here, then there, or maybe it’s better over there. When we got inside the restaurant, steps and stairways led to all of the dining spaces and we wandered around looking for a ramp. We eventually found one, hidden behind a wall. The dining room was empty, but we couldn’t seem to find the right table, changing our minds several times about where to sit. Why was everything so difficult? Why did all of our choices seem so important? Lauren wasn’t with us....but her wheelchair was  We needed to manage its limitations, make room for it, care for it. Its presence guided our decisions and our actions.

In my dream the wheelchair represented the stress, fear, and worry that are the constant companions of a parent of a child with severe, multiple disabilities.  Lately, I have been thinking about the independence that Lauren having her own home may offer both her and I.  However, my constant companions will always be there.  Neither of us will ever be free to cut the cord that is wrapped around both of our lives forever.  She is my sweet, beautiful angel of a child yet sometimes it feels as though that cord will strangle me.  I get so tired, so very tired of my constant companions that I want to stamp my feet and say, “I just don’t want to do this anymore!”  But that is not an option.  When I grasp for perspective I know that compared to many, many families, we are actually in a very good position – Lauren has services, we can afford to provide her with the things that they do not cover, and we have good people supporting us.  Sometimes, though, I just want to be selfish.  I want to let go of the cord, even if just for awhile....and rest, sleep.  But sleep is full of dreams, and even in my dreams, my constant companions find a way to remind me that they are never very far away.

Thanksgiving 2010

November 25, 2010

All this week I’ve been thinking about what I wanted to write for today – Thanksgiving Day. Thanksgiving and New Year’s are probably the only holidays throughout the year that call not only for celebration, but for reflection (OK, I guess you could include your birthday, but technically, and more so as you get older, it’s not a holiday). I went back and read what I had written last year. I found that much had stayed the same and, one thing had changed significantly. I am sure that if someone had told me that on Thanksgiving 2010 I would be six months from Lauren moving in to her own home, I would not have believed them. It could not be possible!

Too often I forget that life is as full of possibilities as improbabilities. Naysayers and pessimists bombard us daily, about seemingly every facet of our lives, until we feel that we are drowning in doom. Yet, who could have predicted even ten years ago, that we would be reading books from plastic screens, that reality shows would prove that real life truly is stranger than fiction, or that airport screenings would become so invasive that someone would need to invent special underwear to protect personal privacy (a fig leaf design for men, a clasped hands design for women). Who knew?

So today I will give thanks for many of the same wonderful things as last year, but I will be most thankful that Lauren will be settling into her own home in the coming year, with devoted caregivers, in a community to which she is already connected. I am amazed that a tiny seed of an idea blossomed so quickly and beautifully into the answer to Lauren’s need for a home of her own. The worry, the despair, about Lauren’s future, has so colored my days for so long that I am astounded at how much my own life and outlook is changing now. And, I have learned a valuable lesson about staying open to the possibilities, rather than letting improbability enclose my reality.

Lauren - Having it Her Way

November 23, 2010

When a person can’t speak or doesn’t communicate to any great degree in an alternate form, people frequently assume that they must think, feel, or prefer what they do themselves.  Without guidance or stated preferences, we often instill our own likes, dislikes, desires, and inclinations onto the non-expressive person.  You can imagine that when you have three, four, even five or more people providing care for you that this can be not only aggravating to the care recipient, but confusing as well.

Now that Lauren will soon be living in her own home, I have become concerned about protecting her preferences and routines when I will no longer be there to oversee them on a daily basis. As much as I want her to have the opportunity to explore new things and experience variety in her life, she must have the right to a basic routine, personal style, and food preferences. Sure, the acquisition of these preferences in Lauren’s life have, to some extent, developed from my own preferences – it’s a mother’s prerogative. But many of them are also part of Lauren’s world because of the culture of our family. Every family has their own ways of doing things – family traits – so to speak. We like a neat, uncluttered home. We eat our fresh, unprocessed, unboxed, meals on a basic schedule. We don’t turn our outdoor Christmas lights on till Thanksgiving night. We recycle. This is how we’ve chosen to live. Lauren has the right to continue our traditions and way of life in her own home, as well as have her personal opinions and preferences respected.

So how do I make that happen for her? How do I attempt to guarantee that her voice is heard when she has such a limited ability to express herself to her caregivers? Manuals – I’m developing manuals. They will cover a variety of subjects including her food, her clothes, and her personal care. I am hoping they will be informative, succinct, offer guidance, and be easy to use. And, I’m hoping that they will speak for Lauren in a manner that will guarantee that her quality and style of life will be protected.

Next week, I’ll go into exactly which manuals I’m writing and what they will cover.

Wishing for a Good Life

November 18, 2010

After thirty years of marriage, dinner conversation is no longer as lively as it used to be when we were still exploring the wonders of each other. It now revolves around Lauren, frustrations and problems, and the things we need to do but still haven’t gotten around to. The evening news is usually droning on in the background, creating another layer of issues and concerns about the world in general. So, when we have a “date night” my husband and I try to stick to subjects that are more positive, more about ourselves than everyone and everything else. That means that long silences often threaten as we rack our brains for anything scintillating or interesting to discuss. The other night, in desperation, I pulled out the tried and true, “If you had three wishes – what would they be?” For both of us, one of our wishes was that Lauren be happy and well cared for - for the rest of her life. I soon realized that neither one of us had said, “I wish Lauren wasn’t disabled.” Neither one of us had said, “I wish Lauren could speak, or walk, or didn’t have seizures, or anything else.” We simply wanted Lauren to live a good life.

Over the years, it seems that the professional, and not so professional, individuals involved in Lauren’s life either wanted to “fix” Lauren or marginalize her. Very few people in general, approach her, respect her, as simply who she is – challenges and all – a part of their world. If she doesn’t respond typically to them, if she doesn’t meet some kind of norm, she is dismissed. If she could not learn what she needed to learn in her first twenty-one years, then it is determined, that she never will.

But we all are a work in progress. No one on this earth is perfect. Very few couldn’t stand some degree of improvement throughout their lives. Yet, there seems to be some imaginary line beyond which people are judged too wanting, too imperfect to be considered a part of the mainstream of society and are subject to different rules.

I guess if I ever meet the magic genie who will make those three wishes come true, one of my wishes should be, “I wish the world would respect and value Lauren for who she is. ‘ Only then will the world be a place, where she can live a good life.

Goodbye to the Hospital Bed

November 16, 2010

I promise, this is the last of this saga. The hospital bed is no longer in Lauren’s room. Why? I gave up. After two weeks and three phone calls trying to find out the status of the bed rails that the supplier was supposed to be getting us, I called and said, "Come pick up the bed”. Suddenly, the gentleman who was supposed to have called me was - saints be praised - available! He proceeded to tell me that he had to order the split rail…. but they really don’t make a split rail for a “homecare” bed. Ok, which is it? How can you order something that you can’t get?? He said that he’s really never tried to supply a bed to someone who was small enough to roll out from under a standard bed rail. I said, “What do you supply for pediatric patients.” A crib. “You’d supply a crib for a twelve year old?” No answer. Well, Lauren used a split rail bed when she was in pediatrics in the hospital in June. When I told him that he said, “That must have been a specially made bed.” Oh, give me a break! I’m sure hospitals are having custom beds made all the time, don’t you?

About this time I realized that I was fighting a losing battle. This guy (you’ll notice that I’m no longer calling him “gentleman”) had no idea what he was doing. And worse yet, he really didn’t care. They picked up the bed later that day. Now, I’m exploring wedges and other options that will enable us to provide Lauren with position adjustments when needed.

Diaper/Hospital Bed Update - Part Two

November 11, 2010

I had to share this with you. I finally got a call back on the diaper inserts (still no call on the bed). The gentleman that called said, “There is no Medicaid code for inserts, I can’t find one anywhere. You know I don’t make any money on these. I end up doing this at cost.” I asked him how he knew that if he didn’t have a code and thus would not know what his reimbursement would be. He quickly changed the subject to, “This is the last diaper order I’m taking, we can’t make any money on these. How are they working out?” I replied that they were just fine. “Oh, great. I’m glad they’re OK.”

Why does a supplier have to make you feel like they’re doing you a favor by allowing you to use their services? Lauren is entitled to diapers through her Medicaid coverage. If a company does not want to participate with Medicaid – hey, it’s a free country. But don’t give me attitude about providing a product you’ve committed to providing. I would love to pull the diaper order and the hospital bed order from this company and go elsewhere. I won’t for two reasons. One, I’d have to go through the prescription and approval process all over again probably, and I really don’t have any hope that another company would be any more willing, or any more helpful, in meeting Lauren’s needs. Our experience to date with this type of supplier is all negative. - Just another of the roadblocks to enabling an individual with developmental disabilities to live her life in her community.

Diaper/Hospital Bed Update

November 9, 2010

Lauren finally received her first order of diapers and booster inserts last week. And.....they ordered liners (like a Poise pad) not inserts. I called the supplier and told them about the mistake which they promptly blamed on the prescription, and then realized that they had made the mistake. One week and another phone call inquiry from me later – we have no further updates and no inserts. When I called yesterday to inquire about the status of the order I was told that they were waiting for approval from Medicaid. When I reminded them that they already had the approval all I got was a “Oh, yeah. I’ll have to call you back.”  Did they?  No.

The hospital bed was delivered over a week ago. Using Lauren’s existing twin mattress on it seemed to work fine. The problem was that when the back was raised the distance between the bedrail and the mattress was a good twelve inches – not a safe situation. We need a split rail not a single rail. I called the supplier the same day and told them that the single rail would not be safe and we definitely needed the split rail. Since the initial order, they have seemed to have a very hard time grasping Lauren’s needs. They keep talking about my concern that she will “escape”. She’s not going to try to escape; she’s going to roll out of the bed. Once again I was told I’d receive a call back. We’ve had to work around this hospital bed that’s been sitting unused in her room for over a week now. I’m not going to attempt to transition her into a new bed until I’m sure that it’s going to be functional for her. When I called them yesterday I told them to either get back to me or come pick up the bed. Have I heard from them? No.

The Changing Seasons

November 2, 2010

A day of heavy rain last week has stripped the trees of their already short-lived leaves of red and gold. I find myself stopping, staring out windows as I walk through the house, trying to figure out what I’m seeing. Was that there before? It’s a rooftop formerly obscured by leaves, a large rock previously hidden by the bushes encircling it, a car passing on the road across the valley, its bright color now standing out against the brown, leaf strewn hills. We live in the middle of thirty acres of fields and woods. There is a view from every window that changes with the season. Now the barren trees portend the winter that is to come, yet their starkness also reveals sights that have been concealed by leaves since spring.

I am looking forward to spring more than ever this year. Lauren will move into her own home in May. It will be a huge change in her life....and in mine. Our journey to this point has reflected much of the very nature of the seasons we experience in the northeast. Lauren’s early years were our spring. Everything was new and fresh. A new child, a new diagnosis, new direction and trials in our lives, all struggling to rise above the surface like leaves pushing through the dense, snow-hardened earth. The summer was long. Those years of plodding, surviving through the battles to meet Lauren’s physical, medical, educational, and social needs were like the long, sun-scorched days of a particularly, hot, brutal summer. And now, even though she is still so young, it feels like fall is approaching. The leaves that have shrouded our view of what lies beyond the struggle have begun to fall away, and we have a clearer view of the future. The mass of green leaves has now given way to a vivid display of many shades and colors much like Lauren’s life seems to be expanding, ripening, maturing into something far richer than she’s ever known. I hope it is a long time before winter comes. I hope that we are building a life for her that will sustain her for many seasons to come.

A Really Long Night

November 2, 2010

I hope there is a nap in my future today. It wasn’t a good night last night. Lauren was having mood swings and was noticeably uncomfortable yesterday. It was my educated (the calendar seemed to indicate) guess that she probably had cramps. Those of us who have dealt with the discomforts of having that double X chromosome have done our fair share of moaning and groaning. But I wasn’t sure. She could also have a seizure coming on. Or, she could be upset because her weekend caregiver had taken the weekend off. There’s been some changes in her staffing lately and sometimes that can make her unsettled and irritable. So the questions remained, what was the cause and do I medicate or not?

She seemed content as we put her to bed at 10:00, but a half hour later was making noise and sitting up. I laid her down and talked to her while stroking her hair. It didn’t help. I crawled into bed with her and tried to quiet her; she was better for a few minutes but still wanted to get up. So, I put her in her wheelchair and bundled her into a robe and slippers. The nights are getting really chilly now. I took her into the kitchen and gave her two ibuprophen and microwaved a rice bag. Promising her that she’d feel better soon, I settled her into her favorite recliner with a blanket and the warm rice bag on her tummy. As I cuddled next to her, watching a rerun of a very old sitcom, she was calm and seemingly content, but still alert and pale. About an hour later, her eyes started to drift closed. At last, the pills must have helped. Not wanting her to fall asleep in the chair, I put her back in her wheelchair and wheeled down the hall to her bedroom. I had placed a heating pad in her bed when I got her up so that she wouldn’t have to get back into a cold bed. I snuggled her under her fluffy down comforter and as her eyes drifted closed, there was a smile on her lips. Success. I went back to my own bed and lay there listening for awhile. Thankfully, the quiet house remained so, and I finally drifted off to sleep about 1:00 am.

Scritch, scritch, scratch. Scritch, scritch, scratch. What the heck! No, it wasn’t coming from Lauren's monitor. It was over my head. What could possible be making that much noise? It sounded large....really large. It was so loud that it had woken not only me, but my hearing-impaired husband as well. OK, so now I’m fully awake and I realize that, no, it’s not something large – it’s a mouse in the attic. But, this has to be Mighty Mouse...and he’s determined. No amount of wall banging is making him stop. We can’t sleep. It’s 3:00 am. We surrender. We get out of bed, and make a dash through the early morning cold to the spare bedroom. Jumping into the frigid bed, I realize that the monitor is still in the other room. I get back out; run across the hall and grab the monitor. Back in the other bedroom I am uncomfortably aware that.... it is freezing in here! I plug the monitor into the wall socket. No on light. Notoriously finicky, I wiggle the plug. No light. I find another outlet. Wiggle, wiggle, yes! Green light.

Finally under the covers, I realize why those home magazines always tell you to spend a night in your guest room to make sure that visitors will be comfortable. This is a full-size bed – wow, it’s really small for two people. And, for some reason it feels short! It shouldn’t be shorter than a queen size, should it? Well, the clock is creeping toward 3:30 now – and I’m just too tired to care. Of course, my double X chromosome has just kicked in and now and I’m clawing my way out of the covers, thankful for the cold night air. This is turning out to be a really long night.