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It's funny, when I used to fantasize about "moving back home" I thought for sure I'd be seeing Susan, Janice and Ruth every now and again. I wasn't so naive as to think that we'd be pallin' around every weekend but I thought we'd at least stay in touch. But now that we're here and have been for seven months (man, my head spins around about 100 times just thinking about that fact) our contact with one another is virtually nonexistant. And freudian or not, I forgot to invite them to our Pumpkin Carving Party & Soup Exchange last weekend. How bizarre.

When we first got here and thought we were still on vacation I made sure we got to see Ruth, Susan and Janice right away. I couldn't wait to see all of them and we had good times getting reaquainted. I think our first visit was with Ruth and it became clear very quickly that we're in completely different worlds. I think during our time together she asked about my life maybe once. And the rest of the conversation was about her and Bill and the kids. As if she wasn't even sure how to ask about our lives. I remember thinking at the moment how odd it felt to be in someone's living room and not even have them interested in what's going on in your life. I don't think she even knows that I'm now a personal chef. And with Ruth in particular it's very odd because she was the first person I saw four summers ago after finding out that Jeff had completely depleted our investments. It was at her kitchen table that I sobbed wracking sobs. But now, or at least seven months ago, it's like that didn't even happen, or maybe she remembers all too well that it did happen and because her life is so vastly different (she lives in the same neighborhood as Bill Gates. Literally), she can't think of anything to say to me. So we've stayed and it looks like we are staying and I haven't even told her. And the funny thing is I don't feel that bad about it. It is what it is.

Susan has shown zero interest in getting together beyond the initial visit we had with her. I've tried with her once but she claimed to be tired that night and hasn't shown any interest in rescheduling.Again that's fine. Just different than I expected.

Janice is the one with whom I've had the most contact; visiting a couple of times and even going to her son's birthd party in early July, but even that's petered off in the last couple of months. She had been talking about hiring me on as a writer at her company and I even sent them a resume but haven't heard anything. Not that any of that is Janice's doing or undoing. She's pretty much out of the loop but it's just weird.

Again, not judging, just noticing it for what it is. And maybe the reason it didn't even occur to me to invite them to the party was that deep down I know that those friendships are gone now. Family really is what motivated us to visit and family keeps us here. You can go home again but just don't expect all your old friends to roll out the red carpet and treat you like a long lost friend. Oh wait, I thought I was the long lost friend!! Oh well.

It's been a real treat to get to know my cousins for the individuals they are: funny, flawed, happy, joyous, loud, and obnoxious. No different from other families.

Need to run now and feed the children

Earl's The Pearl


Any Earl Emerson fans out there? I've recently discovered him and am devouring his books like the biblio-geek that I am: I have to read from the first book in each series and I can't skip a book. I'll patiently wait for the library system to hunt it down for me and then I'll go get it.

I think his books are intriguing to me because they're set in a town that I grew up very near to and Earl's a cutey. What can I say....his jacket cover got me to pick up his first book.

Anyway, Mac Fontana is a protagonist who is deeply flawed, but seems to navigate life with sense of humor that belies his intelligence, deeply haunted by past transgressions and deeply devoted to his son. Works for me.

What A Difference A Year Makes

I remember writing this a little over a year ago. I remember the angst I felt over the whole "friend" situation in the community in which we were living. And then today as I was driving around, I realized how free I feel now. Certainly the change in geography has helped that. I'm just not hanging out with those people who seemed to feel most alive when were picking apart my life. But it's also the complete spiritual and emotional transformation that's happened since we left town (with narry a word to anyone). I don't miss my old life. I do miss some people from that life because I did manage to select some decent friends (more likely, they were miraculously dropped into my life through no doing of my own) but overall I'm so content to be the person I am today and I'm so grateful to not be socializing with demeaning people.

So hear goes...a glimpse into the pysche of a mom with a kid with a disability:

Thanks Dianne for bringing up this topic. It seems like a month ago when I read this.

It's been a real peach of a week, dealing with some emotions and situations that go with have a child with a disability. And since it's been such a ducky week, I just now got to read all the P2P e-mails, including the ones on this topic and I really appreciated hearing from Holly and her experiences in her weekly book group.

My first thoughts were, "Dang, Holly must be SO organized with her time and resources to be able to go to a weekly book club...how cool!!". You inspired me Holly. It's something I've wanted to do for some time. What a great topic too. I cried and laughed all the way through Expecting Adam.

Emotions: in the past year I have in effect totally withdrawn from a group of so-called friends because of their treatment/comments/opinions about my son Hayden and my parenting skills. This is a good time to say that I'm really glad we're not in a real time conversation and that I don't have a web-cam because this is a tough topic for me. Hayden has all his life battled hearing/ear issues. That on top of Down syndrome and a bout with life threatening seizures that have left him FAR behind in all areas on development compared to his peers. The past couple of years have been one ear infection after another. Lots of visits to the otologist. Before last June he had his left ear reconstructed. But by June we had no choice but to go in again and have another major reconstructive surgery. So that's the background: lots of infections, lots of meds, lots of ear drops, lots of doctor appointments.

And throughout the past couple of years a couple of "friends" have dropped not-so-subtle hints that my husband and I are not trying to get rid of his infections aggressively enough. They didn't see the hours of behind the scenes work of talking to doctors, trying to boost his immune system with vitamins, using all the ear drops 3xdaily, and literally wrestling him into a head-lock to force oral meds down his throat.

The kicker though came at a playgroup last Spring. More background: Hayden loves music. Hayden seeks out ways to make his own music or hear it in some way. Hayden is also not real big on different types of food or things that are sticky. We were at a sensory integration playgroup where the kids were about to eat smores. the minute all the kids gathered at the kiddie size tables for the food, Hayden left the room. I watched him and thought "no big deal", he doesn't need all the sugar anyway and he's been pretty good about participating in the playgroup so far....I'll let him go off on his own." He went off into the living room of the house where we were meeting and immediately went to the gas fire place (it wasn't on) and stood up onto the ledge and put his head against the fireplace screen. The husband of the host came up and stood next to me and I commented that I thoroughly enjoy watching Hayden take in his surroundings. I really do learn so much. Then the husband said, "He's making music...watch". And sure enough, Hayden was rubbing his fingernails and fingers along the grate and listening to the sound. Well about that time another husband came into the room and stood with us for a minute and chit-chatted. He was then called away by his wife and the next thing I know, this man is walking behind us, making a bee-line for Hayden. He scoops him up from the fireplace screen and plops him in a chair in the middle of the smores party. I looked at the man with whom I had been talking and I said, "They have an agenda for Hayden". And they did. They forced the graham crackers and chocolate into his face and he immediately shoved them away and slid off the chair. I was so proud of him but I was FUMING inside. At that point the mom says to me, "I guess Hayden's not interested in snack today". I politely responded, "I guess not". I was so mad I thought I could have spit nails. I haven't been back to that playgroup since and I won't let Hayden ever be with those people alone.

Over-reacting a bit? Probably. I'm nothing if not passionate and dramatic. But how DARE someone decide how my son is going to experience something. The message I read was, "You're just letting him go off and be by himself when he should be participating in the group." I could be wrong but this family has a little bit of other history in deciding how my family should live. I just snapped inside. And it was at that moment that I realized that people who have kids without disabilities can be "quick" to decide how and why a child is reacting, acting, or behaving in a certain way. They don't know. Heck, we barely know some of the times!! It was extremely hurtful to see someone force their way onto Hayden and I won't let it happen again.

Sorry for the epic post.

Gigi, Pueblo

Everything Old Is New Again............

Some stuff I've posted on other forums. Maybe someone here can identify or relate......

Written and submitted May 4, 2004

Five years and roughly eight months ago I called a virtual stranger on the phone. I had heard her name through her son, with whom I worked previously. He had told me that his mom, "worked to make sure that little kids in our town with disabilities got the help they needed". So on that information and the fact I knew this young man's last name, I looked them up in the phone book and dialed the phone one fateful evening.

For the next hour and a half this stranger told me what kind of life the newborn baby boy in the hospital nursery was going to have. I had called her to ask her if he would have anything in the area code of a "normal" life. He was born with a genetic anomaly. It was certain he would have physical delays and there was a list of possible medical problems associated with his genetic make-up. He would most certainly have cognitive delays. I remember hearing the word mental retardation. It was all overwhelming and I remember feeling a little frantic inside as to whether I was the "right" parent for this baby.

So this woman I had only met in passing, talked to me in excited tones telling me all about how much better life is now for babies and children with disabilities. So much better than when her now-adult son who has a disability was born. That now children have access to "in home" early intervention supports and services. That I could have as much or as little "intervention" as I wanted for him. That as his parents we would be the leaders of his "team", whatever that team might look like: therapists, teachers, doctors, specialists, etc....

And then I remember the next thing she said like it was yesterday. She said, "And he'll go to the church nursery and play with the other kids, and he'll go to regular pre-school, and then he'll go to regular kindergarten and first grade, so on and so on, and he'll be in Cub Scouts if he wants to and he'll play T-ball if he wants to. He will do everything that interests him and that you expose him to." I got off the phone feeling hopeful. That that little baby on oxygen was going to somehow be okay. I had confidence there were people ready and waiting to help us help him make his way through this world.

Today I remembered that evening as my son and I walked into his new elementary school to sign him up for kindergarten.

Tonight as I write this with tears of gratefulness in my eyes I thank Kathy Serena for being my messenger of hope and promise that night. And to all the other "Kathy Serena's" around the state (that I know of, and I know there are many, many more): Carol Meredith, Dianne McNamarra, Meg Day, Julie Harmon, Lila Stoehl, Robin Bolduc, Lorri Park, Julie Reiskin, Christy Blakely, Romie Tobin, and so many more, thank you for investing in parents.

Today Hayden McLaughlin signed up for kindergarten because Kathy Serena and all of you believe that all children belong, no matter what their labels.

Much Love To Everyone Here,

Gigi, Pueblo(mom to Hayden who has Down syndrome, and continues to "grow me up" everyday)

For some reason, I didn't give this piece to Kathy S. right away. I saw her all the time in our mutual work in early intervention. She lived just blocks from my house. Then one hot and steamy summer afternoon I decided I had better give it to her. (I don't know, maybe I was worried that she wouldn't like it or that she would think I was putting her on too high a pedastal). So I loaded up the kids in their Radio Flyer wagon and trudged up the incline to her house, sweating like a small farm animal by the time we arrived. She wasn't there so I just left it with her husband at the front door.

I didn't think much about it afterward until less than three weeks later when her son Jeff died suddenly at their home, in her arms. My heart ripped apart in 17 pieces and I drove to her house in less than a minute and was in a tearful embrace with her seconds later. The next few days were a blur for me. In my grief I forgot to pay the electric bill and the day of Jeff's funeral our electricity was cut off. I felt stupid but deep down I didn't really care. I couldn't believe he was gone. Jeff, the almost mythical inspiration for Kathy's tireless work in early intervention in the state of CO, gone. And me, like hundreds of other families in our town, the unbelievably fortunate recipients of his mother's ceaseless barage against the "old guard" from within disability and without. I count my blessings and Hayden's too, everyday that Jeff Serena lived a gratifying and fulfilling life.

Hugs to you Jeff. We all miss you very much.

Wednesday, October 26, 2005

Instant messaged with someone I used to be friends with this morning. Realized it's been about five years since we've been in each other's lives. Wow. Can't believe it's been five years. I've changed SO much, I'm not even the same person. I've changed so much in the past six months I'm not even the same person. But for the last five years of her life she's been waiting for her boyfriend to get serious about their relationship and move in with her. I guess he's finally getting serious because he's moving in this weekend. Wow, to wait five years for a guy to decide if you're good enough to co-habitate with. Not for me. Hopefully it'll all work out for her. Although really maybe there's not much difference in her situation because my husband and I date for over four years before getting married. That's a whole other form of insanity: one of those "coulda shoulda woulda" situations.

Just Your Average Five Year Old

So DP says to me from the backseat of the car yesterday as we were heading out of the driveway, "A nut is cool because it has the shell around it to protect and then it has this little layer of skin around it too". And I nodded in agreement (but admitting to her that I had never noticed a sheath of skin around the nut) and mumbled something that sounded like warm motherly affirmations and then she continued, "And that's kind of like our bodies: our blood cells are the nuts and our veins and our skin are the things that protect our blood cells so they can work to keep us healthy and keep bad germs away from us."

Sure honey. I'm sure all your peers are right there with you making those comparisons.

Oye

I'm With Elvis

I thought at least one of the chapters in a book I would ever have the nerve to write would be titled, "I'm With Elvis", because that's sometimes how I feel having a child with a disability. It's almost a split-personality thing because I take in the world through my eyes and then I try to take in the world through his eyes. And then when I really have a good reserve of emotional energy, I try to take in Hayden the way the outside world views him.

Usually he's met with a smile, his cuteness working in his favor almost always. And usually I'm so busy trying to keep up with him, or sometimes trying to keep him from doing something, that I don't have time to wonder what people are thinking or if they're judging him, or worse even, pitying him.

Confidence

Hayden has the most amazing air about him. He is completely comfortable in his own skin and is sure beyond sure that he is welcome wherever he goes. He has a quick smile and usually applauds for himself whenever he walks into a room.

I try to let him experience life on his own, without me hovering. Sometimes easier said than done, as he seems to move quicker when danger is near.

Crazy busy day. DP talking in my ear before I even opened my eyes. Ah, it's never too early in the morning to tattle.

Canned more applesauce from the apples from the gleaning group. Started baking tomatoes for baked tomato marinara sauce. Started cooking apples and water for apple butter. Apple butter is the weekend project.

The other project involves inadvertent charring of a tray of tomatoes that I had forgotten was still in the oven when I turned the oven to broil, to get ready to broil some red peppers. Then when the peppers finally made it to the oven, I was exhausted after going three rounds with the five year old at bedtime and I collapsed into a chair to watch NASCAR, forgetting all about the red jewels in the oven. OOPS. Extra treats for the garbage can tonight.

Went to PLU's homegame and got to see my nephew David play his first college game. Lots of fun. One of my other cousins was there, which was nice.

I'm just really enjoying being here. I mean, being, here. The other night my dad, the kids and I went to my other nephew's high school homecoming football game. What a hoot that was. I didn't go to a highschool with football and Canisius isn't exactly a football giant so I've really never watched a lot of football in person, much less watching the team of a family member. Now that's fun.

And maybe that's what it's all about.....and by the "all" I mean the three week vacation that's now stretched into seven months. Being here with family. Doing family stuff: painting my cousin's bedroom as a small repayment for housing our four dogs, going to everyone one of my nephew's high school football games, seeing my other nephew's college home games, having one of my nieces teach the kids in children's church. They say it's never too late to have a happy childhood. Maybe I'm finding mine. Finito

So this is how it starts. I think I got the secret handshake. Hope I remember the password. Nevermind.

Long day. It would appear young Master Hayden is on a campaign to make me lose my mind by noon tomorrow. Jeff's out of town helping my mother move to KY. I'm sure I'll understand that move at some point but probably not in this lifetime. A vote for reincarnation perhaps? But I digress. I am here at my dad's house flying solo with the kids and my dad, who is kind in spirit and generous at heart to house us all ad infinitum.

Got home after a very long day of trying to paint a room in my cousin's house yesterday. And I do stress "try" because I had the kids with me: ages 5 1/2 and 7. A virtual litter of kittens. Plus six dogs to manage and love on once and awhile. And love on the kids too. No really, I did love on my kids!! I can tell you don't believe that part. Anyway, I managed to get quite a bit done by late afternoon and I didn't want to quit but I had to hit the bank before it closed.

Hayden's compulsiveness in the area of throwing things off the bed (read: anything that's on the bed other than himself including clean clothes, all stuffed animals, clothes I'm about to put on, pillows, etc....) is reaching critical mass and is a serious threat to my mental health. Last night in the midst of the chaos of trying to feed, clean and reclothe the children and offload the car of its collection of toys, food, and backpacks, various and asundry necessary paraphanalia that saw us from this side of town to the other, and then fill up my dad's car with the equipment necessary to go to Jason's football game (or go on a safari, whichever came first), I walked into our bedroom suite in our wing of Erickson Suites Hotel, with the intention of getting out of my painting attire and into something a little more fashionable and presentable for a high school football game when I found everything on the floor and Hayden happily sitting on the bed clapping and yelling "hoorah" for himself.

Remember the episode from Star Trek Next Generation when Data's wiring went afoul and Geordi had to figure it out? And here's the key: Geordi did it within the hour long show. Man I love that Geordi guy. All of Data's wires were melted together and some were even smoking. I needed Geordi last night. Hayden needed that thingy-ma-jig that beams people up. (See, right there is clear empirical data that I am losing brain cells. I would have NEVER forgotten the name of that contraption before kids but now my brain is too full storing the really important stuff like 15 types of beatles (there are really hundreds I'm told) and all the words to ALL the Veggie Tales EVER WRITTEN. Go ahead try me.)

Anyway, Hayden got in HUGE trouble for throwing stuff off the bed last night. Twice. Twice he through stuff off the bed. He knew exactly what he was doing. And he does need to be held accountable. So I held him accountable. And he ran away. Seriously. In the midst of getting everyone out the door in less than an hour after we had all arrived back at my dad's house, Hayden dissappeared out of the open garage, where he had to walk NEXT to "Papa's" car where the back passenger door was open with Hayden's car seat clearly visible. Normally Hayden would just pile right into the car, not wanting to miss anything, especially a ride in Papa's car. Not last night. No, he was going to show me something.

So I casually came out of the bathroom after trying to become human in less than 3 minutes and I noticed I didn't hear any of the usual Hayden sounds from any of the rooms in the house, err, I mean estate (as an aside, it's amazing what living on top of each other does for learning what everyone sounds like in the course of a "normal" day). So I quickly scanned each room, sans my glasses and took a quick look in the garage and out on the front driveway and didn't see him anywhere. Amanda, the next door neighbor girl was walking down the street and she said she hadn't see him. So I figured I had just missed him on the inside but when I got inside Dad was scouring each room and he couldn't find him either. Now I grabbed my glasses and we both tore out through the garage and I headed to the right to go toward the busy street. My heart was hitting about once every four beats at this point and then I heard Amanda tell Dad, "he went into that house", pointing to my aunt and uncle's house, which is directly across from my dad's. I pounded on the front door and my uncle called me in and said, "Ya, I was gonna call you to see if you knew he was over here". And there he was, sitting HAPPY AS A LITTLE ORNERY CLAM on my aunt and uncle's couch, with a little throw pillow on his lap, watching the evening news. That little booger had run away from me. And Hayden confirmed that suspicion for me when he yelled at me as I breathlessly scooped him up in my arms and hussled him out the door. I thanked Uncle Archie profusely. I hope he heard me above my throbbing heartbeat.

This morning after a very short night of sleep and co-cop staring at us in the face bright and early today he did it again. Hayden and the clothes on the bed. My clothes I was set to wear to co-op this morning. I had already waited until the last possible seconds before getting dressed and then when I saw the mess I screamed and yelled and threw all his toys that he had thrown all over the room into the closet. My head started to throb. It's still throbbing 14 hours later.

There is this not-so-funny-no-matter-how-you-color-it side of dealing with a kid with a disability that can bring you to your knees and to tears in a heartbeat. The thing that came to my mind as I was angrily driving away from the house this morning and on our way to our Chrsitian homeschool co-op was that I Am Powerless Over Hayden's Compulsive Behavior. That seemed to help for the moment anyway. It got him to co-op alive.

That's it for today.