Chronic Sorrow~ insight into me

This is a look at a term that lives within me. The first time I heard it was when Katie was a baby and I read the book ANGEL UNAWARE by Dale Evans . The way she described it made relief wash over me. I realized that my feelings were not irrational. That the sadness and grief could co-exist with thankfulness and gratitude. Knowing that the sorrow was chronic and could surface at any time, but especially at times that would usually be times when major milestones would have occurred has helped me to put my devastation into perspective when it happens. I’ve always said there are times that feel like I’ve been hit by a Mack truck, well those times are usually when the chronic sorrow rises up and shows it’s ugly head. I just wanted to share this with you so that you will now have an explanation of all those times you have needed to comfort me and for all of the times that you will in the future. Thanks. lots of love~~~~~~~it truly is my dominant force.Image
I borrowed this description from a newsletter from the Hydrocephalus group…..I liked the way they explained it…….so if you are interested :
“Chronic Sorrow is a term coined by sociologist Simon Olshanshy to describe the long-term reaction of parents who have a child with a disability. This pervasive reaction is often not recognized or understood by those around the parents–professionals, family and friends. These feelings of chronic sorrow are normal and to be expected and accepted, given the life-long implications for the family and child.
Many factors can affect the intensity and exhibition of chronic sorrow: the parent’s personalities, the severity of the disability, the nature of the disability and the adequacy of support and services provided.
Chronic sorrow does not mean that the parents don’t love or feel pride in their child. These feelings, and many other feelings, exist alongside the sadness. It is as if many threads are woven side by side, bright and dark, in the fabric of the parent’s lives. They co-exist; they do not blend into one color, or feeling. Because ours is such a “can do” society, there is pressure on parents to quickly put their feelings of sadness away or deny them. Parents are told to “think positively” and “to get on with your lives.” They are told that God has “selected” them to receive this special child because they are such strong people. These kinds of comments, while well meant, deny the validity or parental long-term grieving. The discomfort of observing pain in those we care about can be part of the reason for such comments from others.
Grieving, however, is a process that takes time, often years. It’s a prickly bush that one must go through, not jump over. However, there are ways to support the process of grieving. Most parents found support in a community of people who understand because they, too have lived the experience. It is lonely to be the only family on the block with a child with a disability. Being part of a support group or organization helps to combat feelings of isolation. Engaging in personal activities that do not center on the family member with a disability can help increase feelings of competency and self-worth. Counseling, especially at times of significant stressful milestones, can be useful.
Chronic sorrow becomes a permanent part of the personality structure of most parents who have a child with a disability. It’s a normal response. It’s thread narrows and widens depending on life situations; most often it is accepted with courage. And, although permanent, if is not the dominant force in interactions with our children. The dominant forces are love and feelings of connectedness to them.”

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For the parents…

 “For the parents who had to wait longer to hear a first word, who spent more time in doctor’s offices with their child than on play dates, who endure countless bad days and the stares from other people…For the parents whose child’s first friend was their therapist….”

 A friend posted this and each of these items fit so accurately, but it made me want to add things like…..

…For the parents who learned early to lean on others, to accept the generosity and kindness of others,

For the parents who found out that there is no reason to try to do it all alone,

For the parents who know that whatever one does as a parent it will never feel like it is enough or correct, but is the best one can do at any given moment,

For the parents who know the value of  an occupational therapist, a speech path, a physical therapist, an appointment scheduler,a  PH ITINERANT TEACHER : ), a “play lady”, a Lekotek leader, a thoughtful caring teacher,a good-natured camp counselor,  a kind peer, a pleasant stranger, a compassionate listener, a hand holder, a good hugger.

For the parents who are repeat offenders of  DWW (Driving While Weeping) because they have found that the car was a place where nobody else would be affected by their tears.

For the parents who have learned and are willing to share the fact that discouragement might put you face down on a closet floor wondering if you will ever be able to stand up again, but that before you are needed to resume your role, you are not only off the floor, out of the closet and standing, but wearing a smile for when that yellow bus pulls up in front of the house.  

For the parents who have experienced more love than they thought possible, more heartache than they ever hoped to know.

For the parents who have been witness to strength to surpass muscle men, perseverance beyond measure, gratitude that touches the heart, smiles that are brighter than sunshine and courage equal to any Purple Heart Hero.

For the parents who are my peers, my supporters, my encouragers, my mentors, my role models, my friends.  

Cheers to you!

Do something good for yourself, you deserve it!Image

Mississippi Valley Fair Concerts- Our First Foray-2007

I am not a fan of live music.I prefer my music on a dance floor (once every 5 years at my high school reunion) or in my backyard while I’m lying on the swing looking at the stars or cranked way up cruisin’ down country roads with the windows open to the warm country air and the farm fresh aromas. The best live concert I ever went to was Harry Chapin, he would act like he was right in your living room playing, I saw him twice and he was great. The other one I liked was Dan Fogelberg, he played the same way, propped on a stool like he was just jammin’. The worst concert I have been to is RUSH, I went with a sweet, funny, curly-haired drummer who ran track and cross country. Anyway RUSH—– oh my goodness, we were up in the balcony and I had my head on the rail with my hands over my ears the whole time-what a rude date I was!! I couldn’t stand the noise. To this day I can’t name a song by RUSH. I also dreaded attending the choir or band concerts at the high school. They were fine if it was a patriotic concert or show tunes or something, but I’m not one for the real music type of songs, opera or ……..??? see I don’t even know what it’s called. As soon as Katie’s class was done, I’d sneak out to the hallway and volunteer to help put out the cookies and punch. During one of Katie’s parent teacher conferences with the choir teacher,  I was so lost I honestly thought he was speaking a foreign language. This brings us to the fact that I am about to embark on a week of concerts. Tuesday, Wednesday, Thursday, Saturday, and Sunday. LONESTAR, GRETCHEN WILSON, CHRIS CAGLE, JOSH TURNER, and BIG & RICH. Katie had her heart set on going to these at the GREAT MISSISSIPPI VALLEY FAIR so she bought me a ticket for my birthday. I, of course, will be very excited and enthusiastic, (I guess I’ll be a better companion to Katie than I was to my drummer date). They sell beer at the fair don’t they? boy, some days I wish I was a drinker!

Concerts: part one:
Well, once again I have Katie to thank for an experience I would not have had if not for her.
Last night I was 30 years older than the average person in the sand pit at the Lonestar concert. If there was any reason I would have been at the concert ( I can’t imagine what that would be) without Katie I am certain that I would have been sitting up in the grandstand. Instead I was just bodies away from the perspiring performers on stage and really, really close to the speaker that was the size of our house. Is it possible for the bass from a speaker to mess with the electrical impulses of a person’s heart? My PVCs seemed extremely erratic and in sync with the bass! Ignoring the cardiac irregularities and the poor old knee standing in the shifting sand, it was fun, I turned myself into the official bodyguard for Katie and these three young couples who were standing near us, it seems the thing to do if you get to a concert late is to simply push past people who are easy targets and park yourself directly in front of them. So I would stand firm and have these opportunists go around us instead of allowing them to shove us out of the way. These young lovers we joined up with were so cute with their cowboy hats perched on top of their braids and their beaus wrapped around them trying not to get poked in the face with the brim of the hat! Unbelievably I knew most of the songs Lonestar sang. The best was when they brought out a grand piano and our companions got a good laugh when I whooped and hollered as they performed “piano man” ! The young man that was latched onto the braided girl, says, “this is a really good song, they didn’t sing the original, though.”  Lonestar played for over an hour and then we traipsed through a sea of beer cans and long plastic glasses that something fruity and slushy had been served in, it kind of looked like a giant water bong. Thankfully we were able to park on site, so we weren’t wandering the dark Davenport streets looking for our car. Did I happen to mention it was rather warm? After seeing those slushy drinks we decided to look for the new Sonic. They have a DIET cherry limeade that we tried in Louisiana, so Katie has been excited that they were building here, we were unable to find it, so I think I’ll look for it online now, and we’ll go there tonight. Katie will be HOT after seeing Josh Turner. Notes on the Josh Turner concert coming tomorrow.

Concert: part two: written Wed. night:
Bear with me, this starts as I am driving over the 280 bridge and get this sick feeling in my stomach and tears start rolling down my cheeks as I think, “doggone it, here’s Katie stuck going to concerts with an old stick in the mud, instead of a bunch of free-spirited young chickies or a hottie in a cowboy hat. She is SO excited and SO happy to be going, shame on me for even thinking (let alone writing) about not wanting to go to these!!!!” Thank God for my allergies that I would have used as an excuse if my tears had been noticed. Mostly, thank God for a girl who is thrilled to go see her heartthrob with me. We went to the 8 o’clock concert at 5, needing a good vantage point (gates don’t open till 7!), but it made her content that “we were doing the best we could to get a good spot”. She thinks we need to be there at 2 on Saturday!!! I carried chairs and drinks this time, figuring that I’ll be a nicer person if I don’t have to stand for four hours straight. The crowd for tonight’s show, or at least the area we have parked ourselves in, has aged 30-40 years. We are pretty much in the same area of the sand pit as last night only a little closer to the stage. The language last night was not nearly as peppered with obscenities as what was coming out of these 40-55 yr. old mouths. I was getting a wee bit nervous about some of my concert neighbors, and held my purse more closely when I noticed the Sheriff was paying very close attention to my area. My trepidation soon was displaced by displeasure when I realized his scrutiny was actually his attempt to make eye contact with a young lady, he beckoned her to the fence by waving a backstage pass. I’m still hoping he was her father or uncle or anyone that would make it look like something other than what it appeared to be.
Josh Turner and his band were a lot of fun, and Katie was right he was very HOT, he left the stage once to towel off, used a blue towel and came back with blue fuzz all over his face. My favorite part was when he introduced his band members, he gave us a quick bio for each, I think I’d rather pay to be in a room with them hearing their life stories, I had questions to ask. I’d prefer to get to know them than be entertained by them. Both nights there was a young man in the audience (I bet you can find him on youtube by now) I guess BUFF(?) is the correct word to use, who had his friends lift him up above the crowd and he’d stand there posing, just displaying his bod, he unbuttoned his shirt and eventually took it off, he had on a cowboy hat and a belt buckle about the size of his hat! He looked like he should have been a Marine. ——-hmmmm, how’d he pop into my mind?!? Females of all ages had their cameras and cameraphones facing his direction.
The goal was totally accomplished, Katie was completely satisfied with the evening, oh, and we found the Sonic. What a way to top off her night. A giant diet cherry lemonade for Kate, and a diet limeade for me, cooled us down quickly.

Concert series: part three: ALL JACKED UP
Thursday, 11:59pm
Tonight’s episode again starts at the 280 bridge. As I was traveling over the Mississippi, I was praying for all of those touched by the collapse of the bridge in Minnesota. wow…….tonight was so filled with stories, I guess I’ll write the Reader’s Digest Condensed Version. We were situated in the same spot in the sand pit, with a mother and her 2 adult daughters and several of their friends behind and next to us. In front of us was the young couple du jour. I didn’t know how sheltered I am, the vulgarity from a teens mouth, I can easily dismiss as immaturity, but I am thoroughly amazed at the things adult women say . In public, in mixed company and usually quite loudly. Perhaps alcohol plays a part, I’ll bet the government would fund a study and I could use the money to go places where people drink and learn about their behavior. I was hoping that the paramedics were on retainer, because I thought that couple du jour was going to need help extricating one from the others tongue stud, I saw way more of their tongues than I really wanted to. neck,ears .. I don’t think you want me to go into this, you get the picture. Well, we were all firmly ensconced in our own square foot, when minutes before the concert was to begin, two very rude women shimmied in and planted themselves on our toes, the other mother politely asked them to move on as this area was fully occupied, their language was not nice and they began squishing forward to try and prove that there was plenty of room, and by doing this they were shoving Katie into the bodies in front of her, Katie kept trying to apologize to the people in front of her, saying she couldn’t help it as she was being pushed and these women became pushier and more irritating and more rude. By then, Katie was feeling so badly because she knew she shouldn’t be pushing the people in front of her and didn’t know what to do about the women behind her, so she just burst into tears. I was so angry I wanted to spit! These $@&%*@ looked at her and said “what’s her problem, we didn’t do anything” Keep in mind these are ADULTS!!! Well, the mother and daughters that were there originally saw all that was going on and decided to crusade for Katie, they made it so uncomfortable for the witchy women to stay, that they finally moved on. Bless their golden little hearts, when the music started they included Katie in their dancing and partying. Golly, I certainly don’t need roller coasters when I have my emotions to take me for a ride, in seconds from anger, sadness and frustration, to pride in the human race, happiness and tears of joy for good conquering evil! Well, this story could end here, but the saga continues. Again I brought chairs and water bottles and it’s a good thing, people were dropping like flies all around us. I didn’t know what was happening when I saw the sheriff (yes, the same one from last night) carry/dragging a girl out, I thought maybe it was for underage drinking or some form of misconduct,
but when they came right back for the second girl, I could tell she was dehydrated.
Male counterpart of couple du jour was screaming “REDNECK WOMAN” from the moment Gretchen Wilson hit the stage and throughout each song thereafter. Come on, I’m not a concert goer, but even I know that her signature song will be sung last as her encore–give it a rest mister, so while he’s yelling he is groovin’ and gyrating with his white wife-beater plastered to his skin and his red/black NY cap on backwards.There was so much action happening in front of me, I thought they would probably name the baby after me, since I was part of its conception! The next thing you know she is shouting unmentionable words into his mouth and off he goes without her, Leaving us with yet another girl in tears.. drama, drama, drama. He could not have even made it as far as the port-a-potties before she was calling him with her cell phone and continued to do so at least twice during every song for the rest of the night.
Our mystery cowboy friend from the last two nights made his appearance again tonight, but he now has a name,  a MHS Sr. football player. Gretchen invited him backstage after the concert, it creeped me out to learn how young he is—————he did look good!
Oh this is the cutest thing, we were driving (well, driving is a stretch of the imagination) actually leaving the parking lot we were stopped for an incredible amount of time in one spot. It was at the edge of the field along a row of trees to our left. Katie is looking to the right and notices one lone tree in the field and says “look at that skinny tree” it really was skinny and it made me laugh, to which she replies “well, I have your brain, it’s always thinking.” and then says, pointing to the trees all along the pathway on the left., “do you think anyone comes out and measures how tall these trees are?” I said, “I don’t think so, why?” and she says with much thoughtfulness, “well, what if they’re like old or rotten and are going to fall down, will they land on us?” Ya think this girl’s got my brain or what?!!

Concert series: part4: POISON
My ears are still buzzing from the bass of those speakers, indicating that I have damaged cilia and need a night off! Tonight I made a real meal of oven-fried tilapia with roasted new potatoes and steamed veggies and then took a bath in luxurious Honey/almond bubbles. MMMMM, wonderful and relaxing. I put on my summer cotton jammies, then we all went to my parents,(Gary questioned the jammies in public, but I convinced him it was like wearing capris, and I was just too comfy to get back into clothes!!). We had to retrieve the cat that my mother felt sorry for earlier in the day. Brother and family are in Florida so Katie and I are taking care of the pool, cat, tropical fish, 8-10 turtles, mail, flowers, and infant weasel(?) (I think it’s a ground squirrel!)The snakes are locked away in the twins bedroom and the shed outside. If not, the critters would go hungry and the pool turn green, because I won’t set foot near those snakes. While Katie, Grandma and I were swimming earlier in the day the cat was very lonely and crying for attention, so that’s why we needed to go get it and take it home. Wig-out, the cat can’t stay at our house because I am very allergic, plus we still have our house guest Jackson (big dog), who has behaved impeccably and seems to have forgotten his fixation with the back windowsill, yeah! So, we deposited the cat and came home to watch t.v. I nabbed the recliner first, so I was able to collapse like a pile of GAK (do you remember that from the eighties?) Katie and I watched Monk and Psych while Gary snored on the old bumpy sofa. Oh, the pleasures of home. Katie went to bed after Psych and Jackson and I went outside. He doesn’t quite understand the concept of a tie-out. He has a fenced in yard at home, so every time he’d hear something at the park he’d run as hard as he could like he was headed to get it, then- whoosh the tie-out would stop him abruptly and pull him back. I was lying on the swing, no stars tonight, and I’m pretty sure I dozed off as it was almost eleven and the fountain in the pond was off when we came in to go to bed.. Ahhhh peace.

Concert series: part 5: LOST IN THIS MOMENT WITH YOU
I should really probably shower after the night that just transpired, but I decided to slip into my nightie instead. As I removed my white cami, multi-colored confetti floated to the bathroom floor. What a show!! We arrived at 5, I held Katie off three hours from her original goal of 2pm! We entered the gate that leads to the dirt track entrance to the grandstand and there were only about 40-50 people in line, we set up our chairs and played a couple hours worth of word games. Katie was extremely nervous when they let the V.I.P. ticket holders in, because it seemed like there were an awful lot of them. Earlier in the day she had told Gary there was a 1 % chance she’d get a good seat. As it turns out we were almost in the same spot as every other night only CLOSER to the stage. I think Katie had forgotten that Cowboy Troy was coming with Big and Rich as their opening act. She had been counting down the minutes until 8:00 since 8:00 last night and when the show started Big and Rich were nowhere on stage, her face was crestfallen as she turned to me and said “where are they?” Well, it wasn’t long before Cowboy Troy was finished and her dream came true.
The woman next to me was from Vegas and has been to 56, yes that’s FIFTY-SIX Big and Rich concerts THIS year. She has been following them around the United States and going to all of the concerts. She is a member of their fan club-surprised?- and won the opportunity to go to John Rich’s house and play Blackjack with him, she said that she won 457 dollars from him and he asked her how she was able to afford to attend all these concerts and she said she couldn’t, it was all credit card debt and she’d probably be dead before paying it off!
Anyone know a good financial planner for this woman? She was thrilled to tell us that they always acknowledge her presence from the stage. When asked how ,she said they point right at her and smile. So while she is jumping up and down during a song, John Rich points and smiles, she becomes so ecstatic that she must miss what he does next. He goes center stage, points out into the crowd while smiling, then moves to the opposite side of the stage and does the same thing. I think all performers do that, don’t they? She knew every word that was going to be said on stage and when everything would happen, so why was she taking 10 pictures during every song? Surely, pictures from the sand pit with a normal camera are going to look the same at all of the 56 concerts.
Big and Rich sing about coming to your city, passing out $100 bills, so they threw handfuls of bills from the stage periodically throughout the concert. Many in the audience were scrambling for these, a little girl at the end of the night had a handful of them and gave one to Katie, It has a picture of Big and Rich on it, it’ll go on her bulletin board along with the sticker pictures of the other performers from this week.
A guy with a big beer belly hanging over the belt that was trying to hold his jeans up over his boxer elastic was trying to get out of the crowd and I was about to step out of his way, when “flump” he collapsed over the back of my chair. His head was down in the seat, so a girl next to me helped me pull him up, we grabbed him by his shoulders, thinking that was the least repulsive chunk of wet, exposed flesh. He stumbled around, we pointed him in the opposite direction and he meandered away, tripping over his feet. When I turned back from this unpleasant site there were big strips of multi-colored confetti floating through the air. The spotlights were shimmering through the bright colors as they drifted down landing all around us and being caught in cowboy hats, masses of curls and obviously white cami tops!!
A little boy and a little girl each sporting cowboy hats were pulled up on stage and interviewed by Big Kenny. He looks like my cousin Jeff and had a mad hatter type hat with LOVE EVERYBODY written on it perched atop his long bushy hair. He had these kids sing with the band and gave them each a guitar. It was about this time that I noticed a sickening sweet smell that I remember from an infamous raided party during high school and from the Parkway theater. When I went to see FANTASIA my date had to explain to me what the smell was and that the whole row of people in front of us was getting high. Also, shortly after we moved into our current home, there was a Hemp fest at Prospect, I walked over to the park and the police officer told me to go home, keep the children inside and lock my doors. That day there were people dealing, peeing and smoking in my backyard!! OK, back to the concert. I looked at the girl behind me to see if she smelled it too and the questioning look in her eyes told me yes. She pointed at the guy in front of me with a “is it him? look”, so I leaned into him to sniff, but couldn’t pinpoint it there. When I turned back to her, we both burst out laughing as we saw it was the girl standing right next to her and she was passing it back to her boyfriend, who took a toke and passed it up to the guy we first suspected. It traveled through several more people before she lit up a new one. The sheriff appeared along the fence. we were only six people in from the fence, he had to have smelled it, but just kept strolling along the fence. It was funny to watch the crowd around us as the aroma wafted through, heads were turning trying to locate the origin. the female counterpart of the couple du jour from the other night was about 8 people to my left and when she got a whiff she looked like a bloodhound on a trail, oh the boyfriend was with her so she must have finally reached him by cell phone!! My favorite part of the night, was of course when they sang 8TH OF NOVEMBER, a soldier that has been there every night in his camos was lifted up above the crowd and he stood at attention during the song. When they were done singing it they had him come up on stage and gave him a t-shirt that said something like “if you don’t like this country get the hell out” I think it was Rich who said his grandfather was a WWII vet and that was his favorite saying. They got the whole crowd shouting USA! USA! Do anything patriotic and I’m a fan for life!!! I forgot to tell you about Gretchen Wilson’s patriotic stint. She had a cool flag video running in the windows of her airstream trailer backdrop and the lead guitarist played the Star Spangled Banner- it kind of sounded like “Gnats on Acid”.
Back to Big and Rich- they shot out more confetti, threw out more bills and some sort of stickers and shot t-shirts into the crowd. It was all really wild. When we got to Sonic I was so hungry I wanted to get food. Do you think it was because I had skipped supper or did I have the munchies? I ended up stopping in the middle of this to go soak off my stench in my honey/almond bubbles while drinking my limeade. Good night and Save a Horse Ride a Cowboy!!

Concerts: finale: MISS ME BABY
We were home by 10! Katie turned to me in the middle of a song, fanning her face and said, “Can we leave? I can’t take this anymore.” You can imagine what my inner self was thinking, but my outer self said, “Why? If you are too hot we could try moving out of the crowd to see if we can catch a breeze.” (This was said by channeling Robyn, who would do ANYthing to make Katie happy.) She nodded assent, so I tossed the chair bag and my purse over my arm, handed her two empty nalgenes, grabbed my own, bundled the chair up and we scooted through the crowd. When we finally reached a clearing it was near our entrance and the music sounded fantastic at this distance. She decided we could go ahead and walk to the car since we could still hear the music and it was probably near the end, anyway. Off we went to the parking lot. Katie collapsed into the front seat and said, “let’s just go to Sonic.” Maybe it’s not just my age that had me exhausted, she certainly was, too! When we passed the Valley Bank sign at 9:27 it read 89 degrees. It was probably twenty degrees warmer in that sand pit of mass humanity. Next to us tonight was a young couple with an 18 month old in the stroller just feet away from that house sized speaker, I had to bite my tongue and force my pediatric nurse to stay silent. Wellll, staying silent is not very easy for me. I didn’t say a word about the fact that the baby would be much happier and might not develop deafness if they would sit in the grandstand like responsible parents and put the child’s well-being in front of their own desires. I didn’t say a word about the fact that they used his stroller chair as a holder for their beer, which meant on this hot day the can was sweating into the trough where his toys could be, instead it was this gunky, wet, dirty slop of a trough that they tossed a bag of M&Ms into to try to keep him calm!! They took his onsie off. This baby was dripping with perspiration and crying real tears,( which I kept an eye on to make sure he wasn’t dehydrating) so they tossed him up onto daddy’s shoulders and daddy bounced around erratically, that poor boy looked like he was bull riding, all the while crying and sitting on the shoulders in a diaper that was so dirty I could see the little over-saturated beads of whatever that magic gel is that is in diapers and Katie was worried about a wardrobe malfunction with all that bouncing. If the diaper had split “stuff” would be flying. With each bounce the stench was worse. This baby was so overstimulated he was flailing his arms and pounding at them when they’d hold him and point to the stage, trying to calm him down. like he could give a crap what was going on!!
It was pure torture watching this, I had to say a word!! my mouth could not stay shut, I suggested they put their bag with the beer and ice in the stroller with him to try to cool him off, the mother related this to the daddy and his response was, “Hell no, the beer would get warm!!” Just because a person is capable of reproducing does not mean they should. I want this as my new bumper sticker. I wanted to take that little guy and cradle him to sleep somewhere peaceful and cool and clean. The scary part is- if this is a 60 minute peek into his life can you imagine what happens during the other 23 hours? Oh I forgot that daddy was also trying to share his beer with him, mom did put a stop to that!

I can’t think of anything to say about the musician, by now you’ve seen one you’ve seen ’em all.Oh this was neat, all week long there has been a gal onstage signing the whole concert, I love to watch signing and if I was a teen today that is probably what I would have decided upon as a career. You get to be performing, the more dramatic th

e better, and no actual singing is ever involved. What a perfect fit for a tone deaf drama queen!! Wow, I’m out of stories. Good night, have a good week, keep in touch and MISS ME BABY! Anne

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Journeys

Many journeys I have taken, many lessons I have learned with each milestone my daughter has reached. When Katie was young I scoured every SPED type article I could find. Read every word and advertisement in “EXCEPTIONAL PARENT”. I learned early on that when introducing a new task or activity one should discuss it, model it and practice it. Unfortunately I am too lazy to implement each of those steps and spent most of our time, “winging it” and hoping for the best. For you to better understand my version of “winging it” you need to know that for me it meant: getting an idea, grousing to myself “How on earth could she actually do that?”, stewing over it, procrastinating on moving forward with the idea, sharing my thoughts with anyone who couldn’t run fast enough to escape hearing my litany, taking advice from the wonderful fans of Katie, presenting the idea to her, talking about every single aspect of what to do/what not do and how to react in case things go awry, then tossing her into the situation, hoping things would go well. In the meantime I would be pacing the floor with a phone glued to my ear telling everyone what was happening, then being totally surprised and happy that it all went well.

Last summer was no exception to my laziness rule. Summer water exercise class hours happened to fall on two of the days that I was working at Black Hawk Area Ed Center, not far from Black Hawk College. I thought that an excellent way to sneak extra exercise in would be for Katie to walk from the Center to the College and go to the water ex. class. Then I could pick her up when I finished work for the day. This would be her first foray going for a walk alone to get somewhere (other than walking to or from my parent’s). You must be thinking, “she has ridden that route hundreds of times, of course she will know the way.” That would be true for most people, but when one falls asleep the moment one’s bum touches the tuck and roll upholstery, whatever is passing by the windows is non-existent to the sleeper.

After getting the idea and grousing, stewing, procrastinating, and all of my other winging it phases, I sent her out the front door of the school once I had adjusted the straps of her backpack laden with swim gear. Immediately I had to share my angst with the first person I saw. Her first response was, “I can drive her there, do you want me to stop her and drive her there?”. I told her that I wanted Katie to continue, I just hoped she would make it there and remember to call me when she arrived. Bless her heart, this woman then offered to follow her and spy on her to make sure all was well! You have heard me say this before, but, people are so good!

We evaluated the areas that I thought would be problematic.

1. turning the correct direction out of the parking lot.

2. pressing the correct “walk” button on the stop light at the busy intersection.

3. after entering the pool building, steering clear of the vending machines! This, of course caused the most consternation, but we agreed, and so did the second person I dragged into my drama, that she would be so focused on her mission of getting there that she would not be tempted by the snickers and sun chips. One can alw

ays daydream, plus I decided….we decided that the experience outweighed the possibility of a vendo-gorge.

I was smugly happy with the adventure when my son phoned; my exceptionally reasonable, rational son cried, “you did what? you sent her walking by herself to Black Hawk College?!” at which point panic started to well from my toes. “Oh my gosh!” I thought, “if he thinks it is a bad idea there must be some aspect I didn’t consider.” Upon further discussion I discovered that he thought I was working at my other school for summer school and that I had sent her on a trek across town! Whew, once again I was happy with the adventure. I expected her journey to take an hour so I was pleasantly surprised and relieved when after 30 minutes she called me to say she had arrived without a hitch. Later in the day she explained that when she pushed the walk button she had to run to cross all of the lanes and still didn’t make it in time

Imagebefore the “orange man” showed up. She calmly said, “I put my hand out to stop the cars from coming at me. Next time I’ll have to run faster.”

Eating Organic and the bonuses you might find

My eyes took in the butcher knife grasped tightly in one hand and the cutting board in the other, as Katie entered the back door and walked across the family room with a stunned expression on her blanched face. I immediately scanned her body for dripping blood, thinking she must have hacked off a body part to have such a look on her face. Seeing no blood, I asked her what happened. Her staccato response was, “There was a lizard in my spinach!” Trying to diffuse the meltdown that looked highly likely, I tried to lighten the situation by telling her I was happy it was her and not me who had found it, after all, she had not screamed or anything and asked her if it was alive. She said, “It was really freaky. It flipped onto my cutting board,
I was trying to stay calm- I took it outside and flinged it into the backyard—-I didn’t know where it landed, but I didn’t care, longs as it was outside. It was in the refrigerator, I assumed it was dead.” The way it happened is, we had purchased a hard plastic clam-shell type of container of spinach at our local big box store and stored it in our fridge for a week. Evidently the lizard had gone into a hypothermic state which is why it appeared to be dead to her. I found it in the back yard as it was starting to warm up. It very groggily tried to crawl away from me, but I caught it and put it in a bucket where it quickly regained normal body temperature and was running laps around the bottom of the pail. I called the store to report the lizard in our spinach and the young manager asked me how could that happen? I explained the process of spinach harvesting and he told me to come on over for a new box of spinach. Not exactly what I was wanting to eat right then, so we opted for a refund. I knew he wasn’t going to inform anyone else so I tracked down the phone number of the spinach farm and spoke with a person in California who went out to the field to find out where the lizard had been living. I don’t know if he had a mailbox by some rocks or what, but the man was convinced that he had found and destroyed the home of the blue bellied swift lizard. Several weeks later I received a $10 bill in an envelope in the mail, no “we regret the situation” on letterhead, just a $10 bill and a copy of an email telling their other farm what had transpired. I gave the lizard to my nephews for a new pet and started buying frozen spinach with no added protein.ImageImageImage

If She Can Do It, So Can You!

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In our society you do not need a calendar to know what season it is. If you listen to the conversations around you it will be evident. During the summer the talk is of  bikini-ready bodies, flip-flops and suntan lotion. September brings freshly sharpened Ticonderogas, football games and Homecomings. Food, food and more food starting at Halloween and gracing every table, desk and counter-top through New Year’s at which time, for the next three months or for as long as their resolutions last, you cannot be near more than two people without one of them mentioning new exercise routines, diet recipes and how on earth they will ever survive their new weight loss regime.

Each of these seasons presents challenges to everyone, especially those living with Prader-Willi Syndrome. For anyone  who is not familiar, I will hop on my soapbox for a moment and explain a few of the PWS basics that affect Katie. One:  uncontrollable appetite due to non-stop hunger; an ever-present feeling of insatiability, yeah, you only think you have that. Now, pause for a moment and delve into your memory to the last time you felt real, physical hunger and imagine that as a constant during wakefulness and sleep. Two: low metabolism causing the utilization of fewer calories. By fewer, I will tell you the results of a metabolic test that she had done once showed us that her body needs only 880 calories a day to maintain. Three: Decreased muscle tone, this is what I fault for her lack of balance and coordination although that might simply be because she is the daughter of the clutziest woman on earth. Four: Back pain due to scoliosis. Now that you have had a crash course on a few of the reasons weight loss and dieting can prove to be problematic for Katie you will better understand how awesome she is.

Katie and I have joined a local Biggest Loser Contest, we are a part of 50 contestants. Although we are competing against each other every week for 3 months, I wanted to write that we are a part of a 50 member team. Through the encouragement of Josh, our “head coach” everyone is supportive of one another, we are all in this together with a common goal. I would be happy to not win any of the $50 entry fee if I could just drop some of this weight. I listen to the struggles and the plans and the confidence, or some days lack of confidence of the others and I think it is amazing to see their dedication and their strength. I know that we all come into this with our own baggage, both physical and mental baggage, but then I think of Katie, who has these extra challenges that are innate. I have the privilege of watching; her concentration as she (oh, I forgot to mention the need for insulin four times a day due to a secondary diagnosis of diabetes) calculates her carbohydrates, her calories and her insulin, her determination as she vigorously works out during a water exercise class, her perseverance as she starts her third quarter of a mile during lap swimming, her exuberance during a rockin’ Wii Just Dance session, her stupendous awesomeness while participating in and completing two 5K s. I have included photos of those incredible days. The first year that she was in a 5K was a bitter cold day, after the start off, she was alone behind the rest of the participants and from the sidelines I tried to encourage her to cut through a parking lot thereby eliminating the one and only hill portion of the race, she vehemently refused and said that she had to stay on course because she had a chip in her shoe! You will find her name next to the entry of the word integrity in the dictionary. She plodded along, down hill and up, in one of the pictures in the attached link, you will see a woman wearing the number 41. She is a total stranger who after finishing the race, ran back to the half way point to walk alongside Katie during the rest of the race. Please take special note of the time clocks in the photos, you will see that in her second race, the one with much nicer weather, she got a new PR beating her time from the previous year.

If you are one of our Biggest Loser competitors, anytime that you get discouraged or think that it is too difficult or you are faltering I want you to think of my remarkable daughter who is in this with you. If she can do it, so can you!…. So can I!

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Great River Challenge, Year Four

427954_10152124509180693_1058970653_nbballOur fourth annual Great River Challenge brought a new perspective to this parent. The joy the players experience during these games has always been very evident, but what I witnessed this year was the effect of that joy on the volunteers. We had incredible community support from the stadium, the families, the friends, the sponsors, Hy-Vee, Kohl’s, Assumption High School and Psychology Associates. On the faces of the volunteers I saw raw emotion; tenderness, surprise, pride, happiness, pure joy. I heard laughter, encouragement, cheers, and congratulations. At the end of the evening I spoke with a high school girl who told me that she had an amazing time, that she wasn’t sure if there were any players who had as great of an experience as she had that day. A father of a player shared with me that he had been involved with Challenger Little League in several different cities and that he was impressed with the support from our community, not something he had seen in the other locations. A woman who helped said that she plans to be there next year even if she has to use a vacation day from work to make it happen. The most interesting part of this to me is that I, a parent of a player, am extremely grateful for everyone who made this event possible; for the happiness, the fun, the joy it brought to our players, but this time I saw it come full circle– the happiness, the fun, the joy was experienced by the people who made it all possible. I understand that people give of themselves, their resources and their time out of the goodness of their hearts. I understand that they do this not asking, wanting, or expecting anything in return, but what I now understand is that it is not possible to be involved with Challenger Little League and not get something back. If you have a heart, which everyone who cares about CLL does, it is not possible to come away from these games without being touched.