My Special Angel

My first experience with Down syndrome didn’t begin with Maggie.  It really began on September 17, 2002, when my daughter gave birth to her premature twins, Bridget and Brendan.  They were about 3 months early and were very tiny.  Bridget only weighed 3 pounds and, unbelievably, didn’t need any life support; but Brendan was not so lucky.  He was even smaller yet, weighing only 2 pounds, but had to be intubated immediately.  Brendan also had Down syndrome. 

As Bridget grew and got stronger, Brendan struggled for life.  He remained in the NICU on life support for weeks and went through some very traumatic times.  Bridget continued to thrive and came home from the hospital but little Brendan had to stay behind.  By January, he was finally released from the hospital but still remained on oxygen.  He was the most beautiful child and, somehow, always managed to find a smile. 

Our family did all we could to help my daughter and her husband.  Even my parents, who were in their late 70’s, were amazing.  I remember how they spent every day at the hospital sitting in the waiting room after Bridget was released.  My dad would hold Bridget for hours while my daughter would tend to Brendan.  She also had two other children at home that needed her attention but was the most amazing mother to all of her children that I had ever seen.  My son-in-law's love and devotion for his family cannot be compared: and even though he was a busy physician, his family always came first.  The times were very difficult for all of us, but for my daughter and son-in-law, I just don’t know how they did it!  I believe their strong faith in God held them together during these exhausting and worrisome times.

We thought things would get better once Brendan got home, but his time at home would be short lived.  His lungs were very weak and a sniffle from a sibling would soon turn into pneumonia and he would be back in intensive care.  This went on for months and on June 1, 2003, he lost his battle for life.  Our family was devastated to say the least.  This is very painful for me talk about even now, but I feel that without knowing about Brendan, my story is not complete. 

My amazing daughter and her husband did not let Brendan’s life pass without giving his life an even bigger purpose.  Two years later they adopted a child with Down syndrome.  Maggie is that special child who was blessed to be given two of the most wonderful parents any child could ever have.  She was born March 29, 2005, and they brought her home just a few days later.  From the moment I held her in my arms, my heart began to heal.  My love for her was instant and she has continued to bring us so much joy that words cannot express.

All the wonderful things that have happened since I began my journey with Downs Designs are because I have a guardian angel watching over me.  I know there have been no coincidences and I could never have planned for things to work out so well.  It seems that whenever I have a problem, there is an immediate solution.  If I need to know something, the answer finds its way.  If I need help with something, just the right person comes along.

Brendan was only here for a short time, but he touched our lives in so many ways.  I think he will continue to touch many more lives as he watches over me during my efforts to build this business.  At age 62, most people are thinking about retiring but I feel that I've just begun my true life's purpose.  With a little help from my special angel, I hope to continue to find a way to develop this clothing line for people with Down syndrome.  Little Maggie faces many challenges in her life ahead, I hope that as she grows up, her wardrobe won't be one of them.

Preparing for the Conference

As the weeks pass, we really learned a lot about our models.  We enjoyed our visits with them and actually had became good friends.  Our desire to create these clothes becomes more important as we see the struggles of their wardrobe challenges on a daily basis.  There is so much work to be done in just a few short months.



Our first jeans and shirt

 Our first pants and shirts were purely experimental.  We finally complete our patterns and send them off to our factories in China.  I had the jeans factory make one of each size jeans in all the styles and the shirt factory make a white T shirt for men and woman in all the our shirt sizes.  We have a deadline to get these completed by mid-July.  When we designed the first jeans, we used a ribbing material for the waistband not denim.  It was very soft and comfortable, but didn’t quite look like jeans.   We used a full elastic band for the woman and a partial elastic band for the men with a full zipper.  

We made many mistakes along the way.  I can’t tell you how helpful the pattern maker was at our jeans factory in China.  He had 20 years’ experience in the industry and really worked with us as we created our first pair of jeans.  The shirts were not that complicated and the shirt factory didn’t have as many problems.  At this point I knew Jillian and I would need to make a trip China before we actually placed our first order.  We would have to pick our fabrics that we would be using.  I knew that seeing, feeling and touching the fabrics would be important to our selections.



Our portable dressing room

 Next, we would need a place for people to try on the jeans and shirts.  I reserved a larger, corner booth knowing I would need some sort of dressing room.  I knew just the right person who could create a dressing room for us that we could transport.  Wow, next thing you know we have 6’ x 6’ x 6’ dressing room made out of PVC pipe that we could assemble and disassemble with ease.   It worked beautifully and Jillian finished it off with black curtains.  All I needed now were the jeans and shirts and we would be ready for the conference.  

The factory had our patterns and they are unlike anything they had ever seen before.  (Remember these factories are used to making “skinny” jeans!)  They have nothing in their designing system to relate to this type of garment.  My contact there is so helpful and is committed to getting this order to us on time.  (I’ll to tell you all about him in another chapter.)  By now, we’re running right down to the wire for completion of these clothes.  Time is drawing near and the jeans are not completed.  The jeans and shirts are going to be shipped together. The conference starts FRiday, July 23 so I'm hoping to receive the shipment by Monday, July 19, 2010.  If they arrive Monday I can have UPS ship them via truck to the hotel in Florida and the cost would be fairly inexpensive.  If they arrive Tuesday, I’ll have to pay extra for faster shipping.  If they arrive Wednesday, they can still be overnighted and get to the conference by Thursday, but that would have been very costly.

Good news, half the order arrived the week before and I ship the partial order and our dressing room down to the conference center in Florida in plenty of time. But the other half of the order is still not here yet.  Here’s what happened next…My contact in China shipped the remaining order on Thursday, July 15 by express delivery and it should arrive by Monday.  I breathe a sigh of relief!  But my relief is short lived.  Tuesday comes and my package hasn’t arrived yet so I start tracking the package and find out its flying all over Europe.  Then I find out the shipper sent the package by economy class by mistake.   

I’m trying to remain calm and not panic, but I must admit, I was a little nervous.  If I don’t have the entire order, there would not be much point in attending the conference with only half of our pants and shirts.  But I stayed focused on good thoughts and visualized the package arriving on my doorstep sometime on Wednesday.  I refused to belief anything bad was going to happen. 

My most important "Special Delivery"

I contacted the carrier, which was DHL, as soon as I realized what had gone wrong.  The customer service people couldn’t have been more helpful.  I told them how important this package was and they said they would do all they could to get it to me on time.   The plane carrying my package finally lands in Cincinnati on Wednesday morning about 5:30 am.  It had to clear customs, fly to Cleveland Hopkins International and then be trucked over to the DHL distribution center in Strongsville.  By the time it reached the DHL center, all the trucks had already left for the day with their deliveries, but they made a special delivery to my doorstep anyway…the package arrived Wednesday afternoon…just as I had visualized it would.  I knew this shipment had flown in on the wings of an angel.

Why Downs Designs clothes are so different

After months of working with our models, here is our basic conclusion about the many differences in their body shapes that makes wearing clothes made for typical body shapes almost impossible for most people with Down syndrome.  The upper leg bone is much shorter in a person with Down syndrome (about 5-7 inches).  In pants, this makes where they taper in a completely different place.  In typical pants, the knee tapers below the knee of a person with Down syndrome so the fit is very inappropriate. This is why just hemming a pair of pants doesn’t make them fit well.  It creates a “stove pipe” look in the pant leg.  This also creates the big difference in the inseam length.  In just the people we worked with, we found the average inseam to be between 20” and 26”.   This is why just hemming a pair of pants doesn’t make them fit well at all.  Pants made by Downs Designs have been designed with these issues in mind.  We may not be able to fit every single person perfectly, but I think our pants will be the best fit they have ever had.  And by offering to hem each pair per order, the length should be a perfect fit. 

Regarding the shirts, there are many differences in them as well.  The upper arm bone is much shorter in a person with Down syndrome, so the taper at the elbow on typical clothes is not in the right place.  Shoulders are usually very small which also adds to the poor fit at the wrist.  Most long-sleeved shirts are way too long and need rolled at least 3 or 4 times.  Necks can be a little bigger around and we find that most do not like tight fitting collars.  Also, we find that as we scale up the size around the mid-section, we have to keep the shoulder size smaller. Creating these shirts around these particular issues is important for a proper fit and using a raglan sleeve solves the problems where the sleeves hang on the shoulders.    My goal is to make sure that rolling up long sleeve shirts will be a thing of the past.

I call our special sizing, “downsizing”.   The name of our styles and sizes has to be different from typical size clothes.  We must distinguish our pants and shirts sizes from typical ones?  The first jeans we designed we simply called them small men and large men for the style names and the sizes we use letters A,B,C,D, etc.  We did the same for the women.  The shirts we merely named them men’s and women’s and used S,M,L,XL,etc.   Later we had to change the name of the shirts because the men's shirts were actually for both men and woman but the women's shirts were only for the full-figured women.  We also changed the name of our jeans, too.  I decided to name them after our models.  It was one way to  show how much I appreciated all their help. 

Jillian Meets the Models

Appointments are in place and we start to meet with our models one by one.  Jillian is fantastic with everyone; her kind heart radiates.  She loves working with our models and begins to understand the purpose of her new job. She first starts with muslin fabric to use for the fittings.  It’s inexpensive and she’ll go through a lot of it as the weeks go by.  When making the pants for each fitting she makes a pair out of muslin, then adjustments are made to that pair of muslin pants and then she makes another a pair based on the corrections of the last pair.  

This goes on for many weeks and when she is satisfied with the fit, she makes a pair out of denim.  She explains to me that designing an article of clothing for a person in not that easy.  Sometimes it takes several attempts to get a good fit and maybe even more after that.  But creating a size of clothing for these unique body shapes is like being Christopher Columbus; she is discovering a new world in unchartered waters.  As we return to our models, the fittings are not always very good. A change in one place, changes how it fits in another.  Also, some of our models are more difficult to fit than others.  The unique shape of a person with Down syndrome definitely becomes apparent.  What an awakening for us both.  By the time Jillian and I are satisfied with the fit for our models, she will have made over 80 pairs of pants.

During this fitting process, I realize that just a pair of jeans in not enough.  We would at least need a T-shirt.  How I could possibly have a picture on our website of our models wearing a pair of our jeans with an inappropriately fitting shirt.  We must have a basic shirt for sure!  What pair of jeans doesn’t need a T-shirt?  So, not only does Jillian have to create a pair of jeans, but also a T-shirt like no other.  What has she gotten herself into?

But the next problem with this overwhelming task is that these pants she has created only fit our models.  We must create a pair of pants that will generically fit a mass of people that are all so uniquely different. If we are the only source of clothes for people with Down syndrome, we will have to create several different styles to fit several different body shapes.  The next big issue is creating a size for each of our styles.  We cannot use typical sizes; we already know they don’t fit.  So we have to invent a size, I named our sizing “Downsizing”.  We have to come up with a way to label our clothes with a size that is unique to our clothing line.  Even after that, how do we know they will fit a population of people with Down syndrome?

As luck would have it (but for me I think it’s more than luck) I learned about the National Down Syndrome Congress Convention being held in Orlando, Florida in July.  What an opportunity!  This could be the perfect venue to test the fit of our jeans.  So I purchased an exhibitor’s booth.  I felt if we could complete a pair of jeans in several styles and various sizes for adult men and woman, and finish a simple long-sleeved T-shirt, we could use this event to see how a variety of different people would look in our jeans and shirts.  We already knew how much better our models looked in proper fitting clothes; but what a way to see how they might fit many others.

This gave us a target date to finish designing a pair of jeans and a simple T-shirt.  Now, we must complete these patterns, get all samples of each style and size manufactured, have them shipped here from our manufacturer in China and then ship them to Orlando by the end of July…no pressure here!  Am I out of my mind; what was I thinking.