Try a Sip of Greasy Wine

My usual low level of frustration has been tested this week. Anyone who has an adult child with disabilities can understand fully the parenting that goes beyond the age of eighteen. Steven, my wildly impulsive, curly haired son, who was born addicted to heroin and cocaine to a mom with severe mental health issues, has a brain that does not function quite right, especially in the responsibility and common sense areas. His highly valued license was suspended last year for failure to pay for a ticket. After many prompts, in January I led him to the Licensing Board to pay the fine. He then had to take this paper to the DMV to get his license reinstated. He went at least eight times, both when I took him and when he ventured into the crowds himself alone. The fact is, he does not have the ability to sit still or wait for more than 10 minutes before getting agitated, so he had been unable to get his license back. The DMV has wonderful accommodations for individuals with physical disabilities, but wouldn’t it be great if there were a quicker line for those with severe attention deficit hyperactivity disorder. The only incentive for Steven to delve back into the commotion of DMV came when a police officer pulled him over and dispensed a ticket for driving without a license. Off he went back there, late in the day, to get his license. (He was quite excited that he only had to wait 30 minutes, but because the facility was closing shortly, the workers were all working at warp speed to be able to get out of work on time.)   The most frustrating news came in the mail today; a notice that his license is suspended again because he did not pay the most recent ticket…

My son, Angel, seems to be a very good driver, although he is quite fussy about needing to have his car in perfect working and cosmetic shape. Two years ago, he had borrowed my car and, when stopped at a red light, was hit so hard from the back that he was accordianed right into the car in front of him. His injuries were mostly mental, with our insurance having to pay for the damage to the car in front of him, (is THAT fair?) along with the newly instilled fear that he could be killed at any time. My injury was that the insurance only paid for a fraction of what we had paid for this older car, certainly not enough to purchase a reliable car again. It was so frustrating trying to make the best purchase for a minimal amount of money!

About a year later, when he again borrowed my elderly car, the engine literally blew up on him. Again, not his fault. Again, insurance paid a fraction of what we had paid for the car. We searched and searched and found a very old, one owner who only drove it to the church, mint condition car with all of the bells and whistles. (Heated seats! Sunroof! Stereo surround sound!) It was a miracle to be able to purchase such an awesome car for the amount of money we had, and I had truly enjoyed driving it. I say “had enjoyed” because this car, also, has become one of Angel’s victims. This week, while turning with a green light, another car ran a red light and “T-boned” him. He does have some injuries, especially emotional due to this most recent brush with death. My injury is the loss of this “perfect for the money” dream car, the third one in three years. My driveway is again empty.

So last night, trying to squelch my frustration, hubby and I had wine with dinner. I’m not a big drinker, but somehow the occasion called for it. Sitting back sipping it daintily, the ice chips tinkled on my lips. Half of the glass was gone before I noticed an odd, greasy taste. Looking at the ice, what looked like blobs of butter clung to them. Butter? How could that have happened? Hubby’s eyes shot open wide and he ran to the freezer. Because we had corn on the cob the night before, he had put the butter in the freezer, a technique to keep the butter from melting while putting it on the cob. Unfortunately, he had left the butter in the ice tray where it sunk to the bottom of the ice and was ground up to make the greasy ice chips in my wine. I sighed; couldn’t make this stuff up!

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“If You Look for the Goodness in Your Children, Good Things Will Happen”

My dear friends and readers,

Please excuse this commercial interruption of your regular reading.

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The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane
Authored by Linda Petersen

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Her story begins not with her children but with her own childhood spent traveling the country in the backseat of her parents’ car (her perpetually restless dad had post-traumatic stress disorder from WWII), often with very little money and few provisions. Where someone else might have seen deprivation and isolation, Petersen viewed her unusual childhood with a sense of wonder and gratitude. After marrying young and giving birth to a son who was legally blind (and who went on to earn a PhD on full scholarship), Petersen and her husband adopted four more special needs children and fostered many others. Each child has their own special story about overcoming tremendous physical and emotional difficulties in order to be able to succeed and enjoy life. Her honesty, wit, and terrific storytelling make this a book you want to read rather than one you feel you should read.

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Cup of Coffee, Anyone?

My son, Steven, has somewhat struck out on his own with his infant daughter. He moved far away from home…across the street to the small house my mom used to live in. It is a great use of the house as he has a “convenience store” across the street, OUR house, which is VERY convenient because he has neither money nor car.
Thinking as an adult, Steven bought a used Kuerig coffee maker. Using those little coffee cups to make coffee can be quite expensive for someone who has limited money. He came over the other morning, and looked at me with his puppy dog, young adult trying to be grown up, eyes. He was out of coffee! Could I help? Sure! I had about 10 jars of instant Maxwell House coffee that I’d purchased for $2.50 at the local Walgreens. Each jar made a zillion cups of coffee. He looked at it quizzically; for his Kuerig? Sure! I handed him a little coffee holder for his device, and showed him how to put a spoonful of coffee granules in it. Off he went happy, none the wiser that he could have made the same cup of coffee with boiling water instead! Someday, when I have a lot of money to buy coffee, I will explain the difference to him. In the meantime, grown up Steven can have his cup of coffee in the morning without it breaking the bank!

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The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane
Authored by Linda Petersen
The link to the book:
https://www.createspace.com/5321986?ref=1147694&utm_id=6026

As Peaceful as Falling Snow

My husband and I have the tradition of going to our little cabin in NH at least once a month.  We have had a real challenge raising Marie and Steven lately, so this weekend was especially timely.  Right now I am sitting in a comfy chair, feet up, air warm around me, and a cup of hot chocolate with lots of marshmallows sitting on the table next to me, adding steam to the air.  I am smiling thinking of how this cabin has served us well over the years.

When Steven came to live with us, his obsessive compulsive disorder, extreme hyperactivity and severe sensory integration difficulties were not conducive to family vacations in hotels and such. My father, who adored Steven and saw many of my brother’s mental health traits in him, generously purchased this little vacation home.  He himself had always wanted a house in New Hampshire, and he was proud to be able to give me something that would last a lifetime.  The cabin is full of his carvings, including a sign that says “RELAX!!!”  It might be a reminder to actually relax, except on the sign is a carved eagle with a beak so sharp and long and eyes so wildly life like that it kind of scares me instead.  Fortunately, I have learned to look on this sign with love, a reminder of my dad and his “quirky ways”.

On the wall of the cabin are pictures of the kiddos through the years; Francis water skiing, Dinora standing gloriously in front of Mount Washington, Steven holding up his bucket y.of frogs, one frog in his hand thrust towards the camera looking huge next to his tiny body, Andy wildly waving a sparkler on the Fourth of July and Marie holding up a huge fish she caught ice fishing, almost too heavy for her to hold.  There are other pictures of all of us together, or the kiddos playing in the sand at the beach, cuddling on the deck of the cabin, or hiking in the woods.  The pictures are a nice reminder that we have been parents for a long time, and our children have led full and happy lives with us.

While staying in the cabin is reminiscent, it also serves as a retreat for me and my husband.  It is very quiet here.  No telephone reception. No multitude of cable tv channels.  No internet.  No neighbors. No housework.   No stress.

The weekend is a wonderful interlude to our busy lives, an interlude where we are free to nap all day, laugh at silly things, eat  wonderful concoctions Raymond dreams up, (last night it was shrimp rolled in bacon and topped with cheese,) and spend lots of time loving each other.  While we are loving when at home, we go into overdrive in the secluded cabin. No neighbors can hear our screeching laughs.   No children can walk in on our sexual escapades, and no one cares if I walk around bra-less. We are “free and easy”, and the stress just melts away…

Today, the day we will be packing up to go home, I am sitting here writing this, content watching the snow slowly falling outside; soft, fluffy, amazingly beautiful snow!  Peace surrounds me now.  I am well rested and have laughed and loved my stress away, and I am ready to go home to face whatever challenges may come my way.  Bring it on!

All It Took was a Few Daisies

Things have not been going so well lately. Marie has been in the hospital for trying to swallow a box of staples during a PTSD episode. (The pain of the memories was just too much.) The staples, thankfully, passed through and did no damage, but her recovery from the incident has not passed so easily. She is sad and shaky as she works through her most recent memory, that of a “john” pulling a gun on her mother. She remembers hiding under the bed and watching in terror as his footsteps thumped by, sure he would find her and kill her at any minute.

Steven has had a similar fate. As a young adult, he chose not to take his medication anymore. He didn’t like it because it made him feel “sleepy”…instead he is hyper, agitated, argumentative, obsessed and out of control. When you have a mental illness when you are a child, you are hospitalized and given great care. When the same thing happens when you are an adult, you are arrested for domestic violence and thrown in jail. Not the best situation, and extremely difficult for a parent to handle. (Yes, I am being selfish thinking of how this affects me.) Maybe when he is released he will agree to take his medication again, medication which has enabled him to live a full and relatively happy life. Medication which has calmed his OCD and aggression. Medication which has smoothed out the wrinkles in his brain created by in utero exposure to cocaine, heroine and alcohol. Medication which has made our family life “normal”.

Yesterday, (Thanksgiving) was a solemn day for our family, missing two of our beloved children. In preparation for the day, I had cleaned the house as my husband had shopped and prepared the food. I had hoped to get to the store for a floral centerpiece to add some happiness to our table, but time just didn’t allow. Setting the table, I felt sad, abandoned, and empty inside, unfamiliar feelings for me. Just as I was allowing the despair to set in, there was a knock at my front door. There stood a middle aged woman dressed in a neat, black coat. I didn’t recognize her at first, but as soon as she introduced herself, I remembered that she had a child in the same class as Steven ten years ago. I forced a smile and asked her how she was. She had been thinking of me, she said. She remembered me from all those years ago and she remembered the challenges our children faced. She had made me a beautiful floral centerpiece for our Thanksgiving table! She said she knows how hard it is for her to raise one child with mental illness, and that she has admiration for me raising several. I thanked her and held back tears as I hugged her tight.

This amazing centerpiece is filled with bright orange mums, cheery yellow daisies, and red roses, whimsically arranged with a big Thanksgiving Day bow. Looking at it, I can’t help but smile. It is beautiful! It is hopeful! It is joyful! It was just what I needed to get me out of my despair and realize that this, too, shall pass. And the reminder came from a woman who was almost a stranger to me. I am so thankful for the timing of her thoughts of me.

Literally, God Will Provide…

In my years on earth, miracles have happened that have strengthened my belief in God. Whether it be my daughter, Dinora, gaining hearing after being deaf, or the provision of a wildly disputed passport showing up in our mailbox just in time for her travel to her birth country when she was a teen, I have been blessed. But I’ve never been more surprised about God’s ability to provide until today…

We have to share our cars now that Angel is driving, and today was my turn to take the big family van. Being short on money this week, I fished out a one dollar bill that still clung to life in the bottom of my purse. Victory! When stopping for gas, I could go into the convenience store to get a bi-i-i-i-i-ig drink of Diet Coke to last me the day! Once in the store, I put my la-a-a-a-a-a-a-arge cup under the spigot and filled it to the brim, excited at the prospect of getting such a delight for only 89 cents! Looking up, I suddenly noticed that this was not an all sizes pay same price kind of store, and that a large soda was $1.49! My heart skipped a little bit when I realized I was going to have to go out to the van to dig up some loose change in the carpeting or under the seats to pay for the soda. Just as I was putting the lid on the cup, the store owner struck up a conversation. “That’s a big van for you to drive,” he said. “I have five kiddos and our family all has to fit,” I answered. “Yeh,” he said, “But it must be really difficult to drive that thing.” I just laughed and shrugged. I was just about to tell him that I was going to have to leave my drink on the counter to run out to get more money (hoping to dig up another 3 quarters,) when he said suddenly, unaware of my financial situation, “God bless you! The drink is on me.” I smiled and said an enthusiastic “Thank you!” He could not have understood how much this gesture was seen as a blessing, (especially because when I got back to the car I could only find six pennies, two dimes and a nickel.) God provided a Diet Coke so large that I had enough to drink all day, and I still had a dollar left in my pocket! Maybe no big deal in the scheme of things, but, to me, it was a personal affirmation that God DOES provide!

Similarly, another provision surprised me today. Having recently saved up enough to buy a flat screen television to put on the wall, we have been remodeling our living room. I washed and hemmed some new curtains and shampooed the rug. Without the large, old television cabinet, the room looked much cleaner and brighter EXCEPT for our 25 year old couch that displeasingly hugged the wall, looking like an old walrus, slumpy and bedraggled. (The couch was so old that I could not count the number of stains, or the times the skirt had been super glued back on because one child or another had ripped it off in a PTSD or dissociative fit.) I would buy a few throw pillows to brighten it up, I thought to myself, just as my phone rang. It was a neighbor, one I always wave to but don’t talk to too often. They were getting new furniture, she said, did I want their leather, L shaped couch? It was still in good shape, she explained, and they paid $6,000 for it, but they were looking to redecorate. DID I WANT IT???? DOES POPCORN POP? DO FERRIS WHEELS TURN? Yes, yes YES! Of course I wanted it! What an unexpected surprise! How wonderful is God, who provides even when we don’t ask! That is truly a Being that sees inside our hearts.

A Whole New Meaning to “Swimming with the Fishes”

                                    

 

I have been fortunate in that my mother loved to travel and she often took me and one of my kiddos “along for the ride.”  One of my favorite spots was Discovery Cove, part of Sea World in Orlando.  Discovery Cove offered a make believe coral reef with lots of beautiful fish swimming around and huge stingrays that would swim close and touch you. It was so amazing, and was as close to real snorkeling that I had ever been. With a life jacket, snorkel and mask on, Marie, (my 13 year old daughter who is profoundly deaf and has PTSD) and I spent the day swimming around, amazed at the many varieties of tropical fish. It was like being in another world.  In one spot, there was a glass wall and you could swim next to sharks.  Up until this point in my life, this was as close to real snorkeling, and SHARKS, that I would get! It was awesome!

Near the end of the day, Marie’s medication began to wear off as we had stayed later than I anticipated.  She began to get anxious, but she didn’t want to leave.   I told her one more swim around the coral reef and then we’d head back to the hotel.  As had been happening all day, a stingray came up and touched Marie on her leg.  In fact, she had been petting them for most of the day, calling them her “friends”.  For some reason, this touch was different than the rest.  She became frightened and had a full blown panic attack.  She started SCREAMING her high pitched scream and she was signing (in American sign language,) “The fish is going to eat me!” (Why the fish would think she were any tastier later in the day than earlier, I don’t understand.) To get away from the stingray, she climbed onto my back.  I tried to calm her down, but it was difficult to do sign language while trying to swim with a child on your back, and she was screaming so loud her eyes were shut and she couldn’t see what I was saying anyway!  By this time, we were halfway around the coral reef and as far from the shore as you could possibly get.  Marie decided she was not safe enough on my back because her toes were still in the water,  so she climbed up on my shoulders to get completely out of the water!  Unfortunately, that meant I’d have to sink UNDER the water for her to stay OUT of it.  I started screaming along with her.  (Albeit alternating choking with water and screaming.) She was truly frightened the fish was going to eat her and I was truly frightened I was going to drowned.

They have several life guards there and our dilemma was not hard to miss, with Marie standing upright and me bobbing in and out of the water choking. Because we were so far out, it took the lifeguards what seemed like an eternity to reach us.  When they got to us, Marie refused to let the lifeguards touch her, screaming and kicking at them.  (Good old Post Traumatic Stress Disorder shows up when you least expect it!)  What three of the lifeguards ended up doing was supporting me in the water while she continued to stand on my shoulders and scream. Of course there was a huge crowd of onlookers on the beach, some taking photos.  (We really were quite a sight!) Once on the beach both Marie and I collapsed into the sand.  The life guards asked if we needed to go to the hospital, but I was still breathing and Marie had stopped screaming and was crying quietly, so that meant we had both survived unscathed.  Well, maybe not totally unscathed, I’ve lost my wanderlust  for snorkeling!

 

If you are interested in reading more, I have written an e-book entitled The Apple Tree:  Raising 5 Kids with Disabilities and Remaining Sane  available at I-Books, Amazon, and Barnes and Noble.

I’ve Never Been So Happy to be Sick!!!!

Just like everyone else’s, my life sucks from time to time! This past month has been one catastrophe after another. Marie, my daughter who is deaf, had again been hospitalized due to a dangerous PTSD episode. When in a dissociative state, she downed staples in an effort to kill herself. Ever the optimist, I was hoping against hope that her memories of severe abuse would begin to soften, maybe even heal. Alas, not yet…this will be a lifelong battle.

My son Angel, who had just begun to drive, was involved in a rear end collision. While slowing down for a red light, KAPOWEE! another car hit him in the rear, pushing him into the truck in front of him. He was briefly hospitalized for whiplash, but the emotional impact was even worse. Sleeping is a luxury he no longer enjoys; wild fears and thoughts flood his already befuddled mind. He has stopped doing the things he used to do, clearly depressed that his means of freedom no longer sits in the driveway. Through no fault of his own, his major pride and joy, his ability to drive around and help others all day, has been destroyed. The car, safe and well running, was bought new in 2008. The insurance company only paid the Blue Book value of $4200. Because we do not have additional financial means, trying to find a car for such a small amount of money has been a real challenge, and every day that goes by without a car for Angel pushes him further and further into depression.

Marie’s recent birthday party was ruined when Steven “acted up”…having a full fledge outburst. (He has a severe sensory deficit with which he can not tolerate crowds or things not in his regular schedule. I should have had the foresight to arrange for him to be elsewhere.) Steven punched a hole in the wall and swore obscene obscene obscenities, (I know most obscene obscenities, but he came up with a few that were even more hard core.) As he stormed off down the street to settle himself down, the damage had already been done. Mortified at this behavior that most of our guests had never seen, everyone left, making a bee line for their cars, children in tow. Marie, who in her deafness had not heard the commotion, had been fishing on the dock behind our house. When she turned around, everyone was gone! She was quizzical at first, but not being a real “people person”, she took it in stride, especially because everyone had left their gifts for her!

My own work has been more difficult. The agency has hired a public relations person, and suddenly referrals have been flooding in. With an exponentially increased workload, putting in 50 hours a week has not been uncommon. What HAS been uncommon is the wrenching ache that developed in the pit of my stomach. Food would spew out of my stomach a half hour after I’d eaten. I felt awful, but I trekked on, saltine crackers and ginger ale bottle in tow. All my life, stress did not bother me. I could handle anything! No problem! Que sera sera! A little stress was not going to deter me from my job duties! (Like a mailman, neither ran, nor snow nor dark of night would keep me from my mission.) But as the stomach ache dragged on, my enthusiasm waned. I actually became depressed! My life, as I knew it, was over… or so I thought…..

After two weeks of eating nothing but chicken rice soup and saltines, I dragged my depressed little body to the walk in clinic. Taking one look at me, they sent me to the hospital emergency room where an intravenous was started to alleviate my dehydration. Laying there, I watched several bags of liquid force fed into the little vein in my hand. They did many tests, some to which I may have objected but I was too weak to stand my ground. Lo and behold, I was really sick! It wasn’t stress! It was salmonella poisoning from an egg breakfast at a local diner two weeks previously! Although I lay there on the gurney still feeling ill, happiness filled my heart. I was sick, not stressed! Life would return to “normal”, including all of the small tragedies and heartbreaks and problems associated with having five children with disabilities. But I could handle it! Life would go on!

I Will Not Clean and Feed Them on Mother’s Day!

We traditionally celebrate birthdays and special occasions at our house because our family home has plenty of room for our teen and young adult kiddos and their significant others, plus, well, I’m the MOTHER who is expected to host celebrations. My recent birthday party was well attended, but having to clean the house prior to the party put somewhat of a damper on the occasion for me. Therefor, I declared that my children are old enough that I no longer have to host events where I am the honoree. While I have certainly appreciated all of the home-made artwork, baubles and trinkets, flowers, candy, (especially those Swedish Fish,) gift certificates and sweaters, what I would REALLY like is to have a day off with no work. No cleaning. No cooking. No hosting.
A nice breakfast out would be great. I don’t eat much and I promise to stick to the $2.90 “breakfast special” and not order extra bacon.
Or a lunch at a local family restaurant where others will do the serving and cleaning.
Or even out for an ice cream sundae. Or a shake at Burger King. ANYTHING where I don’t have to do any work!
Better yet, they could chip in and get me a gift certificate for a spa day. I dream of getting a massage or a mani/pedi, and their thoughtfulness could make my dream come true.
Alas, my children do not read my blog. So I will get flowers or candy or gift certificates this Sunday, which I WILL appreciate. Just don’t ask me to clean my house so they can come for lunch. They will have to step around the dust bunnies and join me in the backyard where I’ll be relaxing with a frozen wine cooler in my hand, serenely looking at the gentle waves washing over the jumping fish and turtle heads popping up from the small lake behind our house, marveling that time has flown by and my children have successfully reached young adulthood, and savoring in that reality. Ah…life is good…

I Am a Certain Thomas

My life has been blessed with the certainty of God’s existence. My brother was born multiply disabled with Rubella syndrome, (a warning to those who do not believe in immunizations.) He was almost deaf, blind, severely developmentally disabled and had a cleft palate, along with several other physical anomalies. My mom spent the first few months of his life sobbing on her bed. It was a confusing time for me as a child…my mom was not available to me, this new creature in my house mewed like a kitten for hours on end, and my dad did everything he could to not be home. Then, one sunny, warm day, my mom sat in the sun parlor on a rocking chair, rocking Curtis as he cried his kitten cry. Then a miracle happened…she was visited by the Holy Spirit. He/she came right on in, with a brightness that far surpassed the streaming sunlight, a brightness that would have been blinding were it not for the fact that it wasn’t. With a warmth of all encompassing love and joy. With a deep understanding that was somehow passed along to my mom. My mom stopped crying that day, and never again cried for my brother. Instead, he was raised with love; encouraged to do his best and accepted for what he could do, not what he couldn’t. My young life was so awesome after this experience! I have lived with that spirit in my heart; joyful and loving. Accepting and encouraging. Yet humble and in awe of all that life has to offer.
While that one experience changed my life, it was another experience that cemented my belief in the existence of a higher being. We traveled much during my childhood, and once we stayed atop a mountain, reveling in the views of the valley during the day and surrounded by pitch darkness at night. It was a time I valued having a campfire, sitting next to it with my poking stick, playing with the coals and listening to the gentle sounds of the night. Sleep came easily. I was awakened by an unbelievably loud noise and shaking of the earth, as though the whole mountain had exploded. The sound was so intense and unusual that my first thought was that it was the end of the world. In that instant, as I imagined “the end“ was near, an incredible sense of contentment and love immediately washed over me, with the joy of anticipation of a peaceful after-life. As silly as it sounds, I was actually disappointed to learn that the noise was just the sound of the thunder high in the mountains. What kind of person, especially a child, would have that thought????? I should have been frightened beyond belief, but I wasn’t. While my experience may lack scientific validity and meaning, it affected me deep in my soul and has deeply influenced the way I live my life.
Since that fateful night on the mountain, there have been a few more wisps of God in my life, the most notable being the unexplained healing of my daughter, Dinora’s deafness.
Many Christians heard the Gospel story of Thomas last Sunday. Thomas was one of Jesus’ disciples who would not believe in Jesus’ resurrection until he put his hand in Jesus’ side to feel his wounds. Since has come the term “Doubting Thomas”. I am Certain Thomas because I have so fortunately been given a rare sight into God’s existence, an existence of which I am sure and without doubt. It has been natural to live my life the way I have, and to do it with love and joy and acceptance. I’m not doing anything extraordinary, only what is natural given my knowledge. It is so much more meaningful for those who life similar lives, helping others, raising children, being peacemakers, donating material and monetary possessions, and loving others without qualification. They do so out of faith without proof, an amazing accomplishment for sure!
How would YOU live your life differently if you knew, for sure, of God’s existence?

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For more stories about my childhood, please, read my book. Here is a link:

https://itunes.apple.com/us/book/the-apple-tree/id538572206?mt=11

The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane