Partners In Crime

Tomorrow school starts for Ted and Robbie, it is going to be so hard adjusting to the school routine. In the past years I have been able to keep on the same schedule, but not this summer. I was not able to trick my kids into going to bed before the sun, I tried!!! We didn't too badly tonight, they were all in bed by 9:15pm and are now sleeping (it's 9:50pm). WOOHOO!!! What should I do with my time? Katie cried tonight when I explained to her exactly when her school starts, like it's my fault she doesn't start with the boys! Mom's sure do get blamed for everything.

Helen has turned into a little mother hen lately, she acts like she is Noah's mom! She will get his clothes in the morning to dress him and his pj's at night. When he is wet she will TRY to change him, which isn't so bad, unless it's a DIRTY diaper! When he wants more juice she will pour him some, most of it ends up surrounding the cup. She also lays out pj's for the rest of the kids, she puts them on their beds, she has been watching me. In our backyard I have a fenced in area for our dog, Mickie, where she does her "duty". I did this so the kids don't have to worry about landmines while playing in the yard. About twice a week I go out there to clean up using a bucket with a bag and a shovel. Helen and Noah have watched me do this, and I know this because they tried to do the cleaning for me. Noah comes in the house telling me DiDie's (Mickie's) pooh-pooh! I look, his hands are covered in poop! I can't begin to describe for you the aroma that came from my youngest child, it wasn't pleasant. I got him all cleaned up and sterilized and then proceeded to see what was going on outside. Helen and Noah had somehow figured out how to undo the wire I had wrapped around and through the latch of the gate, and went into Mickie's area. Lucky for me Mickie had left a fresh pile earlier that day and they were going to clean it up. They had all the tools that were needed except the garbage bag. Noah had a tough time using that gigantic (for him) shovel so he felt he needed to use his hands!! While I was outside I noticed Noah's clothes were also covered in poop, no wonder he smelled so bad! I checked Helen's hands, yessirreebob, full of poop. We came inside for a much needed bath, I let those two soak for a very long time!!! Needless to say, when they came out they were smelling like....coconuts (their shampoo smell)!!!!!!

I spoke with Helen's teacher yesterday and she will have the assistant in the room most of the time. My advocate from the Arc told me we still need to reconvene for Helen's IEP so we can get that written in along with her diet issues. We will have to wait and see how it all plays out the first couple of weeks.

On one of the blogs I visit everyday there was a woman on there who claimed to have cancer. She has an 8 month old daughter, is married and is a stay at home mom. Over the summer she would tell us all how she was doing and how she was dealing with the treatments she was receiving at MD Andersen. The past couple of weeks things took a turn for the worse, she was told she had 6 months to live, and then we didn't hear from her. All of a sudden her husband shows up on the blog and tells us all she is in the hospital. Over the week-end she went into a coma. During all of this people are sending her their prayers, strength, and all kinds of messages. I just found out before I came here, all of it was a scam! Someone found her answering questions on Yahoo today. If she were in a coma and her liver was failing, how could she be answering questions? My heart is heavy because of this, I was thinking of where my family was a year ago and where her family is now. How can people be so cruel? She has no clue! Some of my blog buddies have said she has to be sick mentally in order to do something so hurtful to so many people. I have shared some of my story, but not all, they don't know how deep this touched me. I just can't wrap my head around it, why would someone take cancer so lightly? Well....this too shall pass.

I am in a FUNK!
Until next time-
Take Care,
Sue





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Off To Dreamland

Last week I mentioned Helen was getting hooked up to a Holter monitor, everything went according to plan. We did end up getting her blood drawn while she was on the monitor because I was able to FedEx the monitor back to the hospital. We didn't have to go back so we took care of everything on the same day. Her thyroid test came back the next day and her levels look perfect, so no adjusting the medicine, YEAH!!! We were about 20 minutes from home (Children's is about 45 min. from our home) when I realized Helen didn't have her bear. I asked the kids if it was in the car and they told me, "No", and neither was the monitor's carrying case which had the FedEx envelope inside of it. We had to turn around and go back, UGH! It was exactly where the kids said it would be, by the video game at the lab, where Helen left it. Can I just say how much I love Children's Hospital?, they are so helpful and nice.

My friend Catherine took the kids for me on Thursday so I could do grocery shopping and also get school supplies. I don't remember having to purchase so many supplies when I was a kid! It adds up when you have 5 kids in school, it took me 3 hours and 3 stores to get almost everything on the lists. Grocery shopping was a piece of cake, usually that's my headache for the day! I need to take the kids to get their gym shoes, I didn't want to do that without them for fear of getting the wrong size and then I would have to take them back!

Sunday 10:30am Mass was for Peter, it was difficult. It was nice though because Catherine's son was the Lector, and she and her husband were Eucharistic Ministers, so they were part of the mass. It was comforting. I didn't think to invite anyone since they all had just been to Peter's memorial. At the last minute I invited a few friends, but of course they couldn't make it because I didn't give them enough notice. I didn't mind, I liked being there in the family room with just my kids, Peter's kids. After mass was registration for school, we are all set, now we just have to wait another week!!!

On Monday I received a call from Helen's teacher, her aide was let go, could I make a few phone calls and see what I could do. I have not had any issues with Helen's school, I know I am lucky, so I didn't know where to begin. I started with Helen's teacher's supervisor, when I got nowhere with her, I spoke with her supervisor. It's all about money, the district is in emergency mode and they are trying to make the cuts where they feel they can. I asked if the cuts were being made in the regular classes also, I was told yes. I told her I understood the situation and I would be patient and wait to see how things go when school starts. I told her if I saw any decline in her progress or I heard of any situation where Helen's safety was at risk, I would be taking the next step towards getting Helen an assistant. In the meantime I have contacted the Arc and have started a relationship with one of the advocates there. She is going to help me along the way, she will be making a few phone calls to make sure Helen doesn't fall through the cracks. One of those phone calls will be to that supervisor I spoke with, so she knows I am not alone. I would try and fight for Helen to have a personal assistant but in doing so I feel her independence would be at risk. I was also told the district had final approval, and they are making cuts in that area also, so it probably wouldn't happen. I will keep you all informed of our progress.

Evan, Sherry's son, is here tonight for an end of the summer sleep over. I just heard him ask my kids, "Are you ever going to sleep? I'm kind of tired." My kids are wide awake, they have been waiting for him since yesterday. My girls have been looking forward to this since I told them they could sleep in the living room with the boys. They are playing like it's the middle of the day and are not showing any signs of slowing down!!! As soon as I am done writing this I am going to set up the blankets and get them into their pj's. I know as soon as their heads hit their pillows they will be sound asleep. So I'm off to send 6 kids off to dreamland!!! (Noah's already sleeping!)

Until next time-
Take Care,
Sue





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It'll Fit'll LLC and a Money Saving Tip for Entrepreneurs

The process of making It'll Fit'll an official legal entity is underway. The business will be formed as a Limited Liability Company, an LLC. So, its official name will be It'll Fit'll LLC. It makes me smile...twelve letters in the company name, and fully half of them - 6 - are the letter "L"! And, they're divided into 3 sets of double "L". What could a numerologist do with that?

The legal work for the business formation is being done by the Business Law Center at the Loyola University Chicago School of Law. A student is doing the work, guided/supervised by a practicing attorney. The fee is very, very reasonable - a bargain, really. The work is high quality. This is a great option for budding, cash-strapped entrepreneurs (which is nearly always a redundancy, isn't it?) So, if you have a straightforward business law need and are anywhere near a law school, it's worth a call to see if it has a business law clinic that you can engage.

I earned a Juris Doctor (J.D.) at the law school and it was the experience of a lifetime. The study of law, the school, the faculty, the fellow students - it was exhilarating and enriching. During my last semester there I worked in the family law clinic. That clinic is free to its clients. Students in the family law and business law clinics worked in the same big office. I often worked elbow-to-elbow with the business law clinicians. The caliber of people and work I observed among those business law students was equal to what I had observed in my 20 years' experience in Corporate America, working for Fortune 100 companies. Funny thing, while I watched their great work, while working on family law issues next to them, I would never have imagined that I'd be one of their entrepreneurial clients years hence. Life takes funny, unexpected turns sometimes, no matter how well you think you've got it mapped or planned.





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A New Journey Begins

Last week was a lot harder than I imagined it would be, I'm doing okay now. I truly was not expecting myself to be any different than I have been this past year, but I was. I had no energy to do anything except watch TV, I did some housework, but not much. I did a ton of reminiscing, and looking back at a year ago. Someone asked me if it felt like this year flew by and I said yes and no. There were times when I couldn't believe how time was flying, and other times when time seemed to stand still. If I were to stay feeling this way, I would sink into a deep depression, and that just can't happen. I have gotten up and brushed myself off, I cleaned the house today, and am finally feeling some motivation. I have thanked Peter for giving me six beautiful kids, and for the time we spent together, I have also thanked God for these same things. Now it's time to move on and start the next chapter in my life, I pray it will be as rewarding and fulfilling as it has been in the past. Peter was, and always will be the love of my life, a piece of my heart lives with him in heaven. I am putting a patch on my heart in hopes that it will heal and find love again. I'm definitely not looking forward to being "out there" again, it was so painful the first time around. Let's hope I have learned some valuable lessons and can avoid some of that dating pain.

I bet you have been wondering how my class reunion went! The turn out was terrible, but we still had fun!! My friend Carmen is the life of the party, so anytime I'm out with her, I have a good time. I did catch up with old friends, it was so nice to see them again. I must admit, I had a bit too many, especially since I haven't really partied since my wedding. Boy, was I feeling it the next morning!!! I woke up saying, "Now I know why I don't drink! Never again!!" Isn't that what everyone says the next day? We seem to forget what we say and still do it again anyway. I did lose a good friend the night before the reunion, Kenny, our DJ, was in a motorcycle accident and was killed. I had the biggest crush on him when I was 21, he was the DJ at the bar we went to, we clicked right away. Nothing ever happened between us, we remained friends throughout the years. He married a wonderful girl and had three boys. We didn't keep in touch on a regular basis, but when we did run into each other it was as if we just talked the day before. It was such a nice feeling to have a friend like that, someone I knew I could count on if I ever needed anything. I was sooooo looking forward to seeing him at the reunion, it wasn't the same without him. I think him passing away so close to Peter's one year blindsided me, and that's why I'm not doing as well as I thought.

All of the kids are doing fine, they are looking forward to school starting, especially Katie. She asks me everyday when does school start because she is ready to be a Kindergartner. Katie is also counting down the days until High School Musical 2 is on the Disney Channel. Everyday she informs all of us on how many days are left, it's like this huge announcement and she needs every one's attention! Tomorrow we are off to Children's Hospital in Milwaukee so Helen can be hooked up to a Holter Monitor for 24 hours. It monitors her heart rate and any discrepancies with the pumping of her heart. She was hooked up to one once before and there were no issues, this is just a precaution, nothing to worry about. While we are there I'm dropping off a form at her tummy doctor, in order for her to receive a gluten free diet at school, the doctor needs to sign a form. When we return the monitor she will be getting blood drawn to check her thyroid. I didn't want her to get stuck while wearing the monitor, in case it raises her heart rate. We have a 9:00am appointment, which means I have to get six kids up, dressed, and out of the door by 8:00am!!! Wish me luck! Our bedtime schedule has been screwed up since the beginning of the summer, we need to get back on track, especially with school starting soon. Wish me luck on that one too!!!!!

I want to thank my family for supporting me during this very difficult year. My friends, those who were there for me all year, and those who are finding their way back. I still need the support, so don't think just because I made it through the first year I will be okay. I feel every loss that much more because of the significant losses I have been dealt this past year. I am still healing.

Doing much better than a few days ago.
Until next time-
Take Care,
Sue




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Out of a Fog and Into Kansas City

It has been over two months since Mom died and the fog that enveloped me has only now begun to lift. Recently, a woman who lost her father a while ago described her experience to me and it perfectly reflected what I've been feeling. She said she felt that while the rest of the world was moving forward she wasn't. Her life stayed in that one place. Exactly.

Of the 70 days that have passed since Mom died, I'll bet I can't recall the details of more than a handful of them. And most of those are the days we spent on vacation - because it was out of the ordinary and I needed to think about what we were doing, where we were going, etc. On vacation I couldn't operate on auto-pilot as I had otherwise. Nearly all other days I've seemed to move along without conscious thought. Fortunately we had committed to to exhibiting at the 35th anniversary convention of the National Down Syndrome Congress, in Kansas City. Preparing for and attending the convention has gently pulled me out of my deep grief and into a state in which I have begun to move forward again, with the rest of the world.

The NDSC convention was held last Friday, August 3rd through Sunday the 5th. The convention coordinator estimated attendance at 1,200. I don't know how many people visited the exhibition hall, but it seemed like a large number. For us it was a perfect opportunity to meet, in person, a large group of people with DS and parents and siblings and to discuss clothing issues and the viability of It'll Fit'll. We were warmly and enthusiastically received. Also, I learned about issues and preferences and ideas that I'm not sure I would ever have come to on my own. It was a wonderful experience.

The picture posted above is my niece Meghan in our space at the convention. Meg is the daughter of Susie's and my brother, John. She and I drove to and from Kansas City. We were quite proud of our ability to find room in the car for the booth properties, our luggage, the dolly and all of the other accoutrements. Spending time with Meghan was fun and she was a great help at the convention; I couldn't have managed without her. It doesn't seem very long ago that Meghan, the first of Mom's grandchildren, was born. For a very long time our family parties centered on just watching and listening to and playing with Meg.

At any rate, back to the convention. Our goals in attending the convention were many. We wanted to: 1-meet and talk with many people with Down syndrome, parents, and siblings, 2-gauge feedback for the premise of It'll Fit'll, 3-develop a more comprehensive understanding of specific clothing issues of all types: fit, function, fashion, etc., 4-augment our measurements database, 5-enhance our understanding of the marketing considerations - such as pricing, product preferences, and such. We accomplished all of those goals, some more than others.

We talked with many, many, many people and, as I mentioned earlier, we and our idea were warmly welcomed. Further, we were invited to participate in an on-line discussion forum and to have a measurements event at a nearby DS awareness center. It was a great pleasure to meet all of those extraordinary people and to connect more tightly to such a positive, heart warming community.

Certainly my understanding of the issues and the market factors was deepened. For instance, there are several ideas and issues that I either hadn't considered or hadn't considered fully before the convention that are now priorities as product features and new products. Also, hundreds of folks took marketing questionnaires (and self-addressed stamped envelopes) and agreed to complete and return them.

Hundreds of people also agreed to provide measurements of their children. We had brought a folding room divider to provide some privacy for measuring people on site. Measurements are taken over clothes, but a bit of privacy is comforting nevertheless. Although we didn't have a large number of people measured at the convention, people seemed very sincere in their promise to take measurements at home and return them to us. In fact, I've received responses already. Hurray! We provided instructions, illustrations, a tape measure and a return envelope. I'd be happy to send a packet to you as well. Just let me know.

The bonus (in addition to all the new people we met) was all of the great resources we discovered in the form of other exhibitors. I gathered a bunch of materials and agreement from those folks to write about them on this blog. I am excited to spread the word about those organizations and will write about one a week, beginning next week.

Next year's convention will be in Boston - one of my all-time favorite cities! It'll Fit'll will be there. We'll be excited to meet more of you and to show off the product that will be available by then.

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A Note About Susie

This is just a quick post to let you know that Susie is well, but didn't post this week. For two reasons I asked her to take a week off. First, it's a difficult week for her since Wednesday was the first anniversary of her husband, Peter's, death. I can hardly believe that an entire year has passed; it has been a blur. Second, I'd planned to post an entry about the NDSC Convention in Kansas City and wanted that to have "above the fold" prominence for the week. The week has gotten away from me, and I haven't posted that entry yet. I will do that later today.

On Wednesday, there was a nice memorial service for Peter at the cemetery followed by a lovely and delicious luncheon. Peter's sister, Maria, and her husband, George, have a restaurant - The Liberty - in Libertyville Illinois and they hosted the luncheon. The food was just so good - perfect - as it's been each time I've eaten there.

Susie will post again Tuesday night/Wednesday morning.




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The Count Down Begins

This is going to be a very quick post, we just came home from the drive-in movie. We went and saw The Simpson's Movie, and Transformers, we had to leave in the middle of Transformers because the kids had fallen asleep and started getting restless. Teddy was fighting to keep his eyes open, he and Robbie went to Great America yesterday and then had a sleep over at Sherry's house. They were up late and didn't sleep in this morning, so it finally caught up to them. We had fun at the movies, it was our first time. I remember my mom taking us when we were kids, it was such an outing! Loading the car up with treats, popcorn, pop, and don't forget your pillow! I would wear my pajamas because I would always fall asleep! I wanted to give my kids the same memory, although I don't remember my mom yelling at me to stay in my "spot"!! There was only so much room, I folded down the third seat to make more room so they could lounge a bit(I have a Suburban). Well, I didn't realize how big they have gotten, they didn't really fit like I had pictured! Helen was the first to fall asleep, then Noah, Grace, Robbie, Katie, and Teddy fell asleep on the way home. They are all tucked in their beds fast asleep, I hope they had a good time.

On Saturday we celebrated my brother Rick's 50th birthday!! He and Anne Marie rented one of those jumping houses, my kids had a blast!! Noah didn't want to get in at first, as soon as I went in with him, he didn't want to get out. Yeah, I said I went in, hard to believe? There is definitely a reason why you do those things when you are young!!! I did enjoy the feeling of freedom by just jumping around, and I did get a kick out of all the kids and how silly they all looked. Can you imagine if they looked silly how I must have looked to them!!!

The count down begins, this week-end is my reunion, I can't wait! After the reunion I have asked Peter's friends (I now consider them my friends), to join me for a birthday drink since my birthday is on Sunday, and how often do I get out!! It sounds like it will be a good turn out, I really need to be surrounded by friends this week-end. We are coming up on the one year anniversary of Peter's death, he was supposed to die on my birthday last year. The last gift he ever gave me was making it three days past my day, I know he was trying to get as far away from it as possible. I have been getting teary-eyed again lately just thinking about him and how far the kids and I have come from a year ago. I have noticed they have been naughtier than usual and it makes me wonder if they too are having the same feelings as they had last year at this time.

Katie and Grace did not participate in the church programs this past week-end, but Teddy and Robbie did. Teddy had the lead role in two of the skits, he did an awesome job, I was very proud of him. Robbie also did a good job, he was a supporting role, no lines. They sang a couple of songs after the skits, I tried to get the girls to join but they would have no part of it. The two of them had been singing one of the songs constantly at home, what can you do?

I hope all of you have a nice week-end, if you are going to the National Convention, don't forget to stop by our table and meet Sherry, she's looking forward to it!!!:-)

Until next time-
Take Care,
Sue




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