On Columbus Day, my husband and I spent a wonderful day just driving around and enjoying the autumn scenery. I don’t know about you, but I seem to have an unusual sensitivity to the beauty in nature, and was once again overwhelmed by the beauty of the bright white and yellow streaks of sun streaming down through the white puffy clouds. Such a sight always encourages me as if reinforcing the fact that yes, there are clouds, and yes there may be rain, but that sun is still up there in the sky, overseeing it all, just waiting to break through and make things better. As an added visual treat, the sun shone so brightly on the tapestry of peak autumn leaves: oranges, reds and yellows, that I felt a need to wear my sunglasses, but with them on I would not be able to fully appreciate the effect of the over-the-top, gasp inducing colors. No photo, piece of artwork or beautifully sung song could have replicated the intensity of happiness that brought tears to my eyes and joy to my heart.
My husband and I sat, holding hands as he drove. There was no need to say anything. We were at peace, pleased to have such a respite after a hectic week of raising children and dealing with problems. We were in our own beautiful bubble, cell phones turned off so as not to ruin the interlude. It was a wonderful day!
Upon pulling into the driveway of our home, I spotted the two small maple trees which Marie had planted a few years ago. She had excitedly dug them up when they were fragile saplings with broken branches, and planted one on each side of the driveway. She had added gravel at the base of each, and attached a tall, straight, thin stick to keep them growing upright. I don’t know why I hadn’t noticed them before. I had NOTICED them, of course, but I had never really SEEN them. They had grown to be about four feet tall, straight and strong. My breath stuck in my throat as the brilliant, bright yellow leaves danced happily in the gentle breeze. They were a growing metaphor for my daughter, blossoming and beautiful and holding the promise of a bright future in their little yellow leaves. Despite once being fragile and broken, they would grow tall and amazing and fit perfectly in this world, reassuring me that my daughter, who was also once fragile and broken, would grow tall and amazing and fit perfectly in this world.
Archive for the ‘disabled’ Category
I suppose I am prejudiced, because I picked him, but Raymond is a wonderful dad! I am sure when we dated and eventually married sooooooo many years ago, he didn’t have a clue about the roller coaster ride we were in for. Sweet little marriage with 2.5 kids, growing old together, holding hands and walking on the beach….forget that! As the parent or foster parent to 19 children, we have spent our marriage trying to have a positive, loving impact on the the children who have passed through or are in our lives. I am the flakier, impulsive, eternally optimist slob. He is the more grounded parent, making sure we have enough money to pay the bills, the house is somewhat clean, and the meals are on the table. He is like a big kid himself with the children…enjoying playing with them and gently bopping them on their beans when he tells them he loves them. He despises the lime light, and has asked me never to write about him in my blog…hopefully he will forgive me for this post.
During a recent visit to the grocery store, he demonstrated everything I love about him:
The store we shopped at was one in which the discounts are great, but the ambiance is lacking, as are the shopping bags. This was his domain, as he does the shopping weekly. This is his life…no frills, just get down to business.
Filling the cart with basics, (pasta, spaghetti sauce, bread, cheese, eggs and milk,) he purchased enough to provide for our home as well as for our 2 young adult children who are struggling financially. Because I do not generally go grocery shopping with him, I did not know he did that. His sense of support for his children extends into adulthood. Even though they are out of the house, he is still their “go to” person for flat tires and a listening ear. When he listens, he takes things more serious than I do…for me, there is always a silver lining. I will try to cheer my child up, make her/him happy. However, sometimes children just want to bitch that sometimes life just SUCKS! He listens, commiserates, and gives them that affirmation.
Because he was shopping with a budgeted amount, I was playfully reprimanded more than once for putting something in the cart that was not absolutely necessary. However, he DID justify the expense to put in one special thing for each of our children; Cracker Jacks for Steven, fresh oranges for Dinora, pasta salad mix for Angel and Lay’s Salt and Vinegar chips for me to bring on the weekend visit with Marie. Most importantly, while getting in line at the cash register, he reached over into a bucket of flower bouquets and spent time picking out the best one for me. (Yes, he DOES buy me flower every week.) Practical, loving and romantic. Isn’t he great?
After filling our cart at the grocery store, despite a long line at the cash register, Raymond was patient. So patient, in fact, that he let a woman with only a few items pass in front of him. Smiling, he said “Go ahead of me, please. I’m in no hurry”. He chatted with the cashier, expressing genuine interest, and he assisted an elderly woman in carrying her groceries to the car. He cares about others, strangers, anyone in need. Is it any wonder he has been a great father to our children?
Any set of parents will experience difficulties of varying degrees. Raising children with disabilities magnifies those difficulties. It is a huge financial strain, and any thought of retiring and spending our days walking on the beach holding hands is for naught. Potential retirement savings have been spent on the care of our children, funding therapists who do not take our insurance, taking time out of work when they are hospitalized, transportation to hospitals and therapists out of state, and other expenses many parents would never dream of having. Quality time between Raymond and myself can’t be spontaneous, but needs to be scheduled. (Rest assured that romance is alive and well with us!) Family and friends are often not our best cheerleaders. (Is that a polite way to put it?) The challenges have been huge, but Raymond’s support has never been greater. He has rolled with the punches, as though having a screaming child rescued by paramedics from the side of ferris wheel during a PTSD episode, having a child with twelve personalities (and trying to get along with all twelve), spending the whole day at Disney World in a quiet cove of trees while our son who is autistic collects bugs and worms, never knowing whether to buy girl clothes or boy clothes for your daughter are normal parts of parenthood. It’s is just normal family life to him. And I thank GOD for that…because I could never do this alone…
To read more about our life, here is a link to my book:
Link to the Readers Digest review of my book: http://www.rd.com/recommends/what-to-read-after-a-hurricane/
My husband and I took a little “romantic trip for two” last weekend, so I did not get my usual laundry done. This week, being school vacation, saw me working 60 hours coordinating an educational and recreational program for children with disabilities. It was an awesome, fun week, and the kiddos were a joy! However, by the time I dragged myself into the house in the early evening, I had no energy to do any type of cooking/cleaning/thinking/talking or moving. The only movement I could muster up was my index finger on the TV remote…
Getting dressed this morning, there was not a piece of clean underwear to be found. Not in my underwear drawer, in the dryer, under the bed, on the floor of the bathroom, in the puppies bed, or in the refrigerator. (You never know…) What was I to do? It briefly crossed my mind to not wear any, but that idea was quickly tossed aside. In “my” generation, we just didn’t DO that. So, I dug up the only pair of underwear left…the unworn g-string bikini bottom to a baby doll negligee I had brought on our romantic weekend. (I always optimistically pack several “outfits”…) Slipping the bikini on, it was immediately apparent that it were not going to adequately cover all of my “private areas”, but it was either that pair or nothing, and nothing was not an option. The thought of getting into an accident and having the paramedics see a woman my age wearing a g-string bikini did seem horrifying, so I promised myself I would drive very carefully and walk very slowly all day so as not to get into an accident or trip and fall…
Finding a bra was almost as difficult, but in the back corner of the drawer was one bra that had eluded trash day. The straps were so old and loose that it did not properly support my breasts in the manner to which they are accustomed. Other than going braless, which would surely have traumatized a few people, I put on the saggy resemblance of a bra. To say that my breasts came within inches of my waistline is not an exaggeration. But it was better than down to my knees…
Finding a shirt was almost as difficult, but way in the back of my closet was a “beautifully” flowered shirt that I used to wear when I was two sizes larger. For some reason I’d always loved that shirt because it was “comfy”, so on it went. At least with all of the bold flowers, my sagging breasts were not so apparent.
For pants, I wore the same pair of jeans I had worn earlier in the week. Jeans seem to be the one item that do not have to be washed every time they are worn. Of course, when you wear them a little more than you should, they DO get baggy in all the wrong places, which resulted in a bigger rear end than I would normally sport. Fortunately, the flowered shirt was so large that it completely covered this area anyway.
The biggest challenge, even when I DO the laundry, was finding a pair of matching socks. I looked ALL OVER….and I was thrilled when I finally found a pair of matching red and white striped socks. Of course, the stripes were on candy canes, and big red Santas graced the top band of the socks, but at least they matched!
My Dansko shoes, (the only type I can wear comfortably,) were on the porch where I had taken them off. Unfortunately, Jody, our new puppy, had decided they made great chew toys, and she had chewed the decorative leather band around the top of them. Fortunately, she had chewed them both equally so they at least matched…
I quickly tried to fix my unruly hair, which can usually be coaxed into a semblance of curls and puffiness. Not today. Today it refused to be tamed. My hair is longer than usual because there has been no time to get a haircut, so it is super fluffy and frizzy, and standing on end all around my head like a wild lion mane. Better than that….like Phil Spector…
Looking in the mirror, I assessed my appearance. Hair unruly enough to scare Frankenstein. Saggy breasts under a garden explosion of a shirt that was so large my daughter could have fit in it with me. Saggy jeans, which are somewhat of a relief because they do not fit tightly enough to force the bikini bottom to slide up into my butt. Shoes missing the decorative strap, but otherwise presentable. And white and red striped socks…not too bad if you don’t look at the top of them. I was “passable” as long as I stood up all day lest people see the Santas on the top of my socks. Then I would look REALLY ridicules….
PS. I have recently been honored with a special award from http://lyricsonthelake.wordpress.com/2013/04/29/because-why-not/:
I would love to come and speak for your group or at your conference. I would do it for free, but would need the price of travel. For functions in the North East, that would be only gas money. I do promise to dress properly…
Link to my book
Link to the Readers Digest review of my book: http://www.rd.com/recommends/what-to-read-after-a-hurricane/
I admit it… I LOVE to gamble; to play the slot machines at the casino. It is one of my wicked vices. (I’ll bet you are all shocked to hear such an admission, which I have been consciously keeping from you so as not to tarnish my good image.)
It goes back to the days when I was a young adult. My mother and my brother loved it when I took them to a casino in a nearby state. We would take a day trip sponsored by a local bus company, and for a mere $25 fee, we would get a coupon for a free buffet and a coupon for $25 in gambling money. As my mother was extremely frugal, this deal was enticing to her, and it allowed the three of us to have a nice day together. My brother, who was severely developmentally delayed, legally blind, deaf, and schizophrenic, loved the long ride on the bus, to eat at the buffet where he could choose all of his favorite foods, and to enjoy all of the bright lights. But his favorite thing to do was to play a martian slot machine. In his schizophrenic haze, he thought of himself as an alien, so he felt somewhat vindicated to see a slot machine “of his people.” His $25 in free gambling money would last for hours as he would always bid the minimum, 5 cents. Every time the symbols on the machine matched, aliens would swoop down to bring them into their spaceship. With his eyes pressed close to the machine to see, my brother joyfully whooped and hollered every time that happened.The money he won was secondary. He was in his “element”, something which he rarely felt elsewhere. Plus,my brother loved Diet Coke,and he could get all of the Diet Coke he wanted free. (We had purchased a refillable plastic cup one time, and my mother held onto it like gold…washing it and bringing it to every visit to the casino….for years my brother was thrilled to get free soda!)
My mom would always cash in her $25 gambling voucher. She did not believe in gambling and preferred to take the money in cash, which to her meant a great day out with a free trip and buffet. Her joy over a great bargain was greater than her playful spirit. She was certain that the machines were fixed, and that they “let you win” in the beginning, and then, when your money was gone, you would put in more and more, never winning again. Although I thought this idea was ludicrous, I have to admit that, over the years, I have seen this happen time and time again…those crafty slot machines!!!! Regardless, I LOVED to play the slots. I would have to sneak away from my mom because when my $25 voucher ran out, (as it ALWAYS did,) I would play my own money.
And so it was yesterday, when I took a similar bus trip with the recreation group of adults with disabilities that I coordinate. (After all, just because they have a disability doesn’t mean they should be excluded from loosing their money at the casino like the rest of us!) It was during that trip that I lost all of my money. As the last few cents dwindled away in the slot machine, I felt a sick feeling in my stomach. I was so sure I was going to win! It was FATE for me to win, because I really needed the money and therefore God could work his “magic” and allow my machine to his the jackpot, therefore getting me out of debt. Isn’t that the way God works? Unfortunately not…
As my money ran out, I sat there sad, disappointed, and frantic. What would you all THINK of me? How was I going to buy lunch for the rest of the week? How could I have been so STUPID?!?!?! All my money was gone…
It is a good thing I only brought $20 with which to gamble…
Easter. Ham. Easter Eggs. Jelly Beans. Marshmallow peeps. Chocolate Easter Bunnies, (see picture.) AND the EASTER BUNNY!!
(Spoiler Alert: Do not let anyone under the age of 7? 9? 12? read any further.)
I am sure that most of us of a Christian faith believed in the light, magical myths of the Easter Bunny, the Tooth Fairy, and Santa Claus. Bah Humbug!
My realization that there was no Santa Claus happened on the day before Easter when I was seven years old. Friends and I were playing hide and seek in our house, and my hiding space of choice was my mother’s closet. I opened the door and plopped in…right on top of a cellophane wrapped Easter basket! I could feel the jelly beans fall out, trickling down my legs, and the weight of my body squishing the basket with a sickening sound. As the marshmallow peeps were flattened, my childhood fantasies vanished before my eyes! It was only reasonable to assume if my mom pretended to be the Easter Bunny, then the Tooth Fairy and Santa Claus were also non-existent.
This was actually a good realization for me. For many years I had questioned Santa’s fairness. If he was omnipresent, then how did he not know what I wanted to Christmas? Even when I sat on his lap and told him…repeatedly…and wrote letters…repeatedly…he still did not bring me that all important, desperately desired, Barbie Doll for which I had asked. The Santa who came to my house had always disappointed me. Having parents who were obsessively frugal, Santa would bring me unexciting gifts…a new toothbrush, a t-shirt, hair ribbons, and small bottles of shampoo (which I later learned came from the times my father traveled for work and stayed in hotels.) One year I even got 3 pairs of underwear that were much too big, but, judging from the price tag which Santa had neglected to remove, they were on sale for an unbelievably low price! As a child, I could never understand why my friends and classmates received wonderful gifts of not only Barbie Dolls, but Barbie houses, Barbie cars and tons of Barbie accessories. They would receive many, and I longed to own just one… but it was not meant to be. When playing with my friends, they were always kind enough to share “Midge”, Barbie’s “best friend”. While I appreciated this, I still felt resentful of their good fortune.
It wasn’t until I realized that Santa Claus did not exist that I understood that my parents had purchased all of those “gifts”. As my childhood revolved around my dad’s “crazy” obsessions, I suddenly understood the significance of the gifts. It wasn’t that Santa didn’t love me, or that I was somehow less worthy than my friends, or even because my good behavior wasn’t appreciated, it was because our family life was very different than most other families. And I took some solace in the fact that my dad, on his work trips, was thinking of me when he brought home the shampoos.
The whole concept of “Santa” has been a difficult one with my children. My oldest son, Francis, who is blind, hated the thought of having a stranger he could not see come into his house on Christmas Eve. It was the one night of the year that I let him lock his bedroom door.
One year, I made the huge mistake of hiding the gift of a Little Mermaid comforter set underneath Dinora’s bed. When she discovered it, she became hysterical, screaming that Santa had been in her room and he could have hurt her! (She was going through a particularly rough phase with PTSD where she was seeing apparitions of “Bloody Mary”, so her sensitivities to having Santa in her room were heightened.) She was only five at the time, and the only way I could calm her down was to admit that Santa did not exist, which caused her to cry even harder at the loss of this icon.
Steven, with his autistic tendencies, never did admit that Santa existed. He was used to his strict schedule, and gifts from a stranger were not a welcome change. He would wake up every Christmas morning, walk by the Christmas tree under which the gifts sat, go down to the kitchen to grab breakfast, and sit in the family room to watch The Animal Planet on television. It was his familiar routine…he never did acknowledge or look at his gifts. (In fact, to this day I have the SAME bag of gifts. I bring them out every Christmas Eve, and pack them up every Christmas Day, only to be brought out again the following Christmas. It is very selfish to say, but I have saved a LOT of money by not buying him gifts!)
Angel, my son with Dissociative Identity Disorder, (multiple personality disorder) had a great time each year developing his very eclectic request for gifts to satisfy his many “parts”, male, female, baby, toddler and his appropriate age. I am sure that not many other boys asked for a complete manicure set along with baby rattles, Superman and Spiderman toys, and a complete bow and arrow set, (don’t ask…) The problem that developed was that Angel had finally begun to trust me, a conviction he had previously not held in his four other foster placements. Everyone else had lied to him and let him down. But here he was in our family with a family he could finally trust, a family that would not lie to him, a family in which he felt safe. When he found out that Santa Claus was a lie, he felt devastated, furious, betrayed, conned, tricked and misled. This lie has left an indelible mark on his life, one which he continues to discuss with a counselor. Every single time I have gone into a therapy session with him, the fact that I am a liar comes up, and that lie is always about Santa Claus. While it is easy for us to say “just get over it”, for him, it has been impossible. If only I knew then what I know now, I would have done things very differently.
Marie, I am embarrassed to admit, was a young teenager who STILL believed in Santa Claus. Learning from my experience with Angel, I have never perpetuated this myth on her, but she came to live with us with this belief. Because Marie is deaf and developmentally delayed, she had few opportunities to “heard” or learn that Santa is not real. This became very apparent to me last Christmas. On Christmas Eve I put out the individual bags of gifts from “Santa”, which included one expensive item for each child, (a DVD player, Gameboy, camera and so forth.) On Christmas morning, Marie woke up before all of us and deftly went through the bags, taking out all of the expensive items and putting them in her bag, leaving the other children with only minor items. She excitedly showed me the wonderful bag of gifts Santa had brought; HER gifts, along with the valuable gifts from everyone else’s bag. I was mortified to think she would be so selfish, and I told her so! I told her that there was no Santa Claus and that I had bought the items and they were not all for her. She tried in vain to argue with me that Santa left them all to her because she had been good, but both of us knew better…
So, this has been a long winded way of saying I DISLIKE SANTA!!! While he may be a wonderful myth to many, for me and my children, he has been nothing but trouble. BAH HUMBUG!!!!!
The Easter Bunny? Hey, SHE’S okay…
Link to my book
Link to the Readers Digest review of my book: http://www.rd.com/recommends/what-to-read-after-a-hurricane/
I received a wonderfully insightful comment from nancyaruegg.com at “From the Inside Out”that I would like to share:
“Your attitude about your life-calling is an inspiration in itself. You don’t consider yourself a martyr. Instead, you see your background as preparation for what God has called you to do, and you take pleasure in the fulfillment it provides. No accolades necessary. My takeaway: Each of us has been formed and prepared by God for a unique purpose. We can each embrace our own. Thank you for your inspiration!”
To which I responded:
THANK YOU! THANK YOU! THANK YOU! You have great insight into the way I feel. I really love raising my kiddos, and I think I am pretty good at it. However, I am no more remarkable at it than the friendly waitress who served us, carrying that huge tray of food without spilling a drop, pre-eminently bringing us extra napkins and salad dressing on the side, pleasantly refilling my glass of Diet Coke ten times, and splitting our dessert on two different plates each filled with its own whipped cream.
No more remarkable than the truck driver who hauls the oranges up here from Florida, going for days without seeing his family, stopping to take cat naps at the rest stops; I would have gone bonkers with loneliness after the first half hour, would have had to stop every 50 miles to pee, and would have fallen asleep at the wheel after three hours.
No more remarkable than the individual with a developmental disability who works as a bagger at the grocery store, who carefully puts the heavy items on the bottom of the bag where I would have thrown the cans of tomatoes right on top of the bread and the carton of eggs in upside down.
No more remarkable than the dental hygienist who cleans my teeth while I whine like a baby, offering calming words and a smile I can see by the crinkling of her eyes, because her mouth is covered in a mask, (or is she really laughing at me?)
No more remarkable than the computer designer who works magic in the computer world, enabling me to play games, use e-mail, research projects, make the print larger, (for my older eyes which refuse to accept glasses,) and BLOG!
No more remarkable than the pastor who preaches, imparting words of wisdom and hope to his congregation, of which I am a humble part.
No more remarkable than the bus driver for public transportation, who cheerfully stops to pick up strangers, dropping them safely at their destinations, (when I would have surely clipped a few mailboxes, and maybe a few pedestrians, and I sure would have shut the automatic door too quickly on someone’s butt.)
Yes, the waitress, the teacher, the truck driver, the grocery bagger, the dental hygienist, the computer designer, the pastor, the bus driver and any other profession where you know someone loves his/her job, we all have one thing in common; we are good at our chosen jobs. No accolades necessary, success is the feeling of a job well done.
This is the life we choose to lead, all on equal grounds.
Link to my book