Showing posts with label down syndrome. Show all posts
Showing posts with label down syndrome. Show all posts

Saturday, April 8, 2017

the cunin connection...

update: it is with great sadness that i report to you that our dear friend, confidant, and bag stitcher extraordinare passed away on april 4, 2017. from the time i first wrote this story in 2014, marilyn and jane continued to arrive at our shop always at just the perfect moment. sarah and i will deeply miss her smiling face, tender hugs and words of encouragement. our prayers are with her family as they mourn the loss of this great woman.

first published on March 14, 2014...
to start this lovely story i need to take us back to the summer of 1983. i was a young, naïve, yet extremely driven twenty something, fresh out of grad school with degrees in public administration and social work. i was chosen as a united way of america national intern, a highly selective program designed to fast track women and minorities into leadership positions within that organization.

i had asked to come to cleveland, not because i was from ohio, rather at that time this city had the most number of ten thousand dollar donors and i wanted to see how they had accomplished that distinction, with the idea that i could take the knowledge and replicate it in other cities.

my first week in cleveland, i was assigned to work in the manufacturing and industrial sections of the campaign, which at that time was organized by sic codes. a few buildings down from the 3100 euclid avenue headquarters of united way, was a company called bearings, inc. the president of this company, john cunin, had been recruited as a volunteer leader.

i remember the first walk down to his office like it were yesterday. as most young women wanting to succeed at that time, i was wearing a navy blue suit with a high collared blouse and navy blue pumps, despite the humid temperature of the hot august day. i was eager in my assignment, yet nervous to be entering the office of a company president. i need not have worried as mr. cunin was a delightful man. he immediately had me feeling at ease as we got to work on that year's campaign. we had several meetings that fall in his office, sometimes ending with lunch across the street at the local deli.

i left town that december to return to alexandria, virginia for further training at the national headquarters, likely to never see mr. cunin or the other wonderful volunteers i had worked so closely with in cleveland. but life has a funny way of turning around. the following year i returned to the city on a more permanent basis and once again i had the pleasure of working with mr. cunin.

now fast forward three decades later and the phone rings in our quilt shop. the readout indicated the call came from the cunin residency. the woman on the other end of the line asked if we had a certain fabric, which we did. the next afternoon a beautiful grandmotherly face walked in and asked for the fabric. i knew by her question she was the woman who called the previous day. so i asked her if she was any relation to john cunin. her face lite up like the star atop a christmas tree. she asked how i knew him so i shared the story above. as her eyes welled with tears, she told me john was her beloved husband. she also told me he had passed away much too young in 1993. as i reached out to give her a hug, i knew a friendship was developing.

over the course of the next few years, marilyn and i shared some wonderful afternoons together in our quilt shop. we discovered that we have many things in common, including our special daughters. i learned of her dedication to our lady of the wayside, where her daughter mary catherine aka cookie, would occasionally go for respite care before she passed at the age of seventeen. we also discovered we share a love of sewing. soon marilyn was bringing in bags she had stitched together with fabric from our shop. sarah takes those bags and fills them with goodies from just a buck and a matching pillowcase she makes. we then deliver them to the little ones in the same hospital sarah received so much of her care.


precious marissa was one such recipient. we had been following her family's blog for sometime and when we heard she had been diverted to the cleveland clinic while her family was traveling from florida to michigan, we just knew she needed one of the bags. lovingly stitched by the hands of two great ladies, both inspired by beautiful angels in heaven.


oddly enough, even though this collaboration has been going on for nearly three years, marilyn and sarah had not met in person, until this week. i tell you from observation, it was love at first sight. sarah enthusiastically shared links on her ipad with marilyn. it was a beautiful exchange of a connection born more than thirty years before.

marilyn cunin at the young age of 84, is a beacon of light in our community. her dedication to philanthropy is extraordinary. she continues to be actively involved in many organizations including being a board member of the bruening foundation. we are honored and very lucky to call marilyn and her daughter jane, our friends.   

Tuesday, January 27, 2015

say hello to carol...

as we move into the new year i want to introduce you to carol...
 
 
she has been helping us out the past few years on sale days and special events. this summer i put out a plea to help my husband find additional workers for his medical billing company. i had no idea that was carol's background because we always talked quilting & kids. she is now working for john with the caveat that if i should need her at jellen's, she comes over. that happened last week when i needed to get my mom to the hospital.  carol and sarah get along mighty well too. it is such a perfect arrangement for which i am so grateful.

Friday, December 26, 2014

christmas miracles

a few years ago i shared this post with a few pictures of the reece's rainbow holiday angels we were able to sponsor that year thanks to your generosity with the sample sales in our shop.


this year, sarah and her grandparents are enjoying the sweet faces from the past few years on the tree in their new home.


i often wonder about the journey these precious kiddos have traveled. i wonder if they remember their life living in the orphanage, sometimes dirty and cold. their days spent mostly in a metal crib, lacking the warmth of loving arms. i wonder if they know how much other people care about them from across the globe. i wonder how their development would be different if they had been able to live at home. mostly, i wonder where they are now and how their life has changed since meeting their forever family.

well, wonder no more. late last evening, this picture flashed on our screen...


precious emilie...holding her very own ornament from 2011. happy and thriving with her forever family. a christmas miracle indeed!!!

it's not too late to sponsor a child through the reece's rainbow 2014 angel tree. just click here for a glimpse of this year's angels. 

Friday, November 7, 2014

blessed greetings to nancy & harold...

moments like this one fill my heart with overloaded joy. meet harold and nancy...


they are traveling through ohio from missouri heading to niagara falls and planned their trip to stop at our shop to meet sarah. why? because nancy, who has been a long distance truck driver for 27 years, has been following our story. she quilts. and harold who she taught to drive an 18 wheeler after a career as a school administrator, had a sister with down syndrome. joanna passed away at the age of 55, but as he described had a wonderful life. it was like meeting family who we have just never had the pleasure of meeting before. such a treasure it is having this little quilt shop. we are so grateful. thank you for coming to see us nancy & harold. you are in inspiration to us. safe travels to you.

Friday, October 24, 2014

sister love...

i love how sarah so enthusiastically shares the story of our pillowcase project and kristen & polly kirton and their beautiful family when new sisters come into our shop. it's like she's on her own little mission without even leaving town.


today we met sister ronquillo in cleveland from the philippines and sister stone from st. george, utah who just happens to have a sister with down syndrome. how awesome is that connection!



Wednesday, July 30, 2014

a july miracle...

i could not possibly have known what was in store for us on this day five years ago, but i do know the miracle that unfolded before my eyes set us on a journey that has been life altering for so many reasons. it was midmorning when i checked sarah into the medical office for a follow up appointment. the previous six months had been dreadful. earlier that year we had been told her days were numbered. her body was so weak. her lungs so permanently damaged. her heart was surrounded with fluid and her immune system was beyond fragile. the antibiotics and steroids they had pumping through her veins were like water to an already dead plant. we were as mentally prepared for the worst as i suppose any parent can get.

i watched carefully as the doctor examined sarah. first she poured over the results from the blood work taken a few days before. then she listened to her chest. i looked for a clue or two of expression as she repositioned the stethoscope on sarah's back. i'd learned over the years to look for those tiny signs of human emotion on a doctor's face. i suppose it helped prepare me for what i was about to hear. i remembered her look so clearly back in january of that year, when this same doctor handed me the list of hospice providers. it was that conversation that ultimately lead me to resign from my job to care for sarah fulltime. if 2009 was to be her last, i wanted to be sure to be a part of every moment.

as she flipped the switch on the light box to examine the chest x-ray taken earlier that day, i was afraid to look. i heard her words before i walked over to look for myself. sarah's lungs were the clearest I had viewed since being taught how to read an x-ray when she was a baby. i could not recall in sarah's twenty years on earth a doctor say the word perfect to describe her. so i asked her to repeat what she said. "perfect. i said perfect." i'm sure my face contorted in all sorts of confused looks, which had her repeat for the fourth time..."perfect." we both agreed we were taken by complete surprise, but every indicator that had been so wrong in the winter was now in normal range. the doc never uttered the word miracle, but she didn't have to. our tight embrace said it all.


sarah and i went to ihop for lunch that day to celebrate. it was a day of new beginnings. i wasn't sure what they would look like, and i can assure you a quilt shop was no where on my radar screen, but oh how grateful we are that on that morning of july 30, 2009 we were given a new lease on life. her gown that day may have been made of paper, but it would be fabric that would soon change our direction completely.

Sunday, June 29, 2014

love on a big blue bus...


periodically i share on this electronic forum my belief in a grand master plan, the knowledge that there is a greater force guiding this journey we are on. for me the hardest thing is believing in that plan when things don't seem to be going my way. and this week was a perfect example. i'm not sure it's going to work out long term in the building we are currently occupying. the uncomfortable feeling of uncertainty has crept back and that has been weighing heavily on my mind. i started to question the plan including the reason for our existence.

so my higher power sent me a big blue bus. all the way from western michigan. it was full of the most wonderful women, mostly quilters, and the nicest driver. they were all so happy, cordial, and patient. i knew they were coming, as the tour coordinator and i had been communicating for several weeks.



what i did not know though, is on that bus was going to be a grandmother who would speak directly to my heart. for a few brief moments our connection stood still in time. we were surrounded by her bus mates, yet we were all alone in our own bubble of emotions.

sarah shared that she will soon be twenty five years old. verna's eyes filled with tears as she shared that she hoped her granddaughter, also named sarah, would live that long too. i grabbed sarah's hand and held it tightly as i listened to this stranger tell me her story. we'd never met until today, yet, we were not really strangers at all. you see we both know what it is like to have a loved one with down syndrome, who is also so medically fragile that our goodbyes could come at any moment. we know the immense amount of prayer and miracles it takes to have our girls still in our lives. our shared tears told each other we also know the heartbreak of so many families in our Ds circle who have had to say goodbye much too soon.

as she told me her sarah is now ten, i thought back to that summer of 1999, when we held a party for our sarah, a celebration of one decade of life. surrounding her were all her friends from school, nurses, docs and therapists. we were not sure that august if she would still be with us to start back to school in september. 


yet soon, our sarah will be celebrating one quarter of a century. today that gave a grandma, visiting our little quilt shop all the way from michigan, hope. hope for tomorrow. and that's just what i needed to remember that our story is not one of selling fabric, it's about human connections. making a difference one family at a time. i simply need to keep the faith and move forward, for our direction will soon become crystal clear.

we'd like to thank kimberly and her husband, xpeditiontravel.com, compass coach and all the travelers for coming to shop with us. we sincerely appreciate your visit and support.
 

Saturday, June 14, 2014

seeing potential...

purposeful and meaningful work. it is the desire of most humans, yet not something that can be taken for granted when you are an adult with a developmental disability. my husband and i have worked tirelessly to make this quilt shop a reality for our sarah. we have been met by challenges and roadblocks. along the way though, we have learned that the rewards are so much greater than the frustrations and the sacrifices we've made. our lives are much richer for the experience.
 

today, i had the pleasure of watching two of our customers meet sarah for the first time. my observation is they too felt an enrichment from the encounter. i am so humbly thankful that we found a new space to continue forth that effort.

Sunday, March 2, 2014

a sunday blessing...

this next photo just warms my heart so much. when sarah made jaxson this quilt from sweetwater's make life collection, he was just a little peanut. we first met his family online when the docs were recommending the placement of a trach. this electronic world we live in sure makes connecting with others experiencing some of the same challenges as you much easier than when sarah was tiny and so ill. we then had the pleasure of meeting him in person while we were in salt lake for quilt market.
 
 
fast forward to this week. despite having many medical challenges, our friend jaxson is growing like a weed. look at him now inching off the edge of his quilt! a perfect sunday sunshine!!

Saturday, December 28, 2013

meet happy henry...

happy, happy day in our house! this precious family drove from michigan to meet sarah. they've been following her blog since the time of their diagnosis of down syndrome before henry was even born. when we hear stories like this it makes what we do have even greater meaning.


and when we get to meet them in person, it takes us to the moon and back. it just provides such validation to our mission. we are most grateful.

Thursday, October 24, 2013

a happy hospital bed

if you follow us on facebook, you already know that our dear sarah is in the hospital. we arrived monday night through the emergency room. a few x-rays, some blood work and a cat scan revealed that her lungs are filled with fluid. even her good lung. recovery is going to be slow and warranted a few nights stay.
 

she was sleeping ok. but not great. and then a customer said to me that she needed one of her own pillowcases. of course she did. why didn't i think of that. and i knew just what one to bring. she slept all night and most of today. and that makes her doctor and me very happy. oh the love felt through a needle and thread.

p.s. our store hours have been impacted by this turn of events. please call and i have been updating the phone each day.  today we will be closing at 4:30.  friday and Saturday we should be open regular hours.

Sunday, September 15, 2013

little boy love...

...no words necessary



 
 
one of the greatest rewards as a shop owner is seeing your babies grow up. we first met lucas when he was just a baby. this week he arrived all the way from nebraska. his hugs. oh my. there are just no words to describe them! a huge thank you to his momma debbie for making time in her very busy schedule to come see us. he simply melts my heart!!  
 

Friday, August 9, 2013

3 to the 24

today our shop celebrates three years. and sarah celebrates her twenty fourth year of life.

 
both occasions are blissfully sweet. especially because we have had so many wonderful people walking beside us. thank you!

Friday, May 17, 2013

the news is out...

...drumroll please

we have been waiting for months to share this news...

finally the public announcement just happened at the American Patchwork & Quilting booth at Quilt Market in Portland, Oregon...

JEllen's house of fabric and Sarah's Sewcial Lounge has been selected...

as one of the...

 Fall 2013 Quilt Sampler Shops!!!


we had hoped to be there in person today, but the next best thing is to be standing in a window full of beautiful quilts made by loving creative souls in fabric designed by our dear friend Kate Spain.

THANK YOU to everyone for helping us make our fantasy come true. It is only because of our wonderful customers that our story continues to be shared.

Tuesday, May 14, 2013

"A Gathering Place for Creative Souls"

Sarah and I were all smiles as we opened the May issue of the American Quilt Retailer magazine to find us featured in the business profile.

 
 
 
 

 
A sincere thank you to freelance writer Ann Logue for capturing our story so perfectly and to Publisher Ranelle King and Editor Susan Fuquay for giving us this opportunity. It is an honor to be selected in our industry, but the real thrill is for all the families who have a person with Down syndrome living with them. For as Ann so beautifully wrote, "...we are spreading the joy of quilting and the capabilities of young adults with Down syndrome." 

Monday, April 15, 2013

on air...today...

oh my goodness. i am nervous as all get out to hear my voice on quilting radio...yet today it is...


it will play live at 4:00 est. or it will also be available for listening soon after at your convenience.  just click this link to listen in: http://www.allpeoplequilt.com/radio/index.html

a huge thank you to pat sloan and american patchwork & quilting along with our dear friend marie bostwick for allowing us to share our journey and to talk about a topic near and dear to our hearts...down syndrome.

Friday, April 12, 2013

pat sloan quilting radio...

mark your calendar, set your alarms, it's almost time...

Sunday, April 7, 2013

when baby stars align...

i have such a wonderful story to share...one saturday afternoon a young woman came in inquiring about creating a baby quilt. she had come across the idea on pinterest but was not sure how to go about it.  i made a few suggestions. after talking for a few minutes, she shared that i might know the baby mama because she has a sister with down syndrome. well...not only do i know her and her family, she was in the first girl scout troop that i agreed to lead shortly after sarah was born, so i've known her since she was seven or so. 

the plan was for the participants at stephanie's baby shower to each create a message on a square. then they would be brought to us and we would take it from there. the blocks arrived and immediately they went onto our design wall...

 
we did not know the gender of the baby, but we did know that stephanie loves polk-a-dots. we quickly stitched it up, diane wantz our long arm gal did her magic and soon...
 
 
sarah was putting the binding on.  oh i should probably mention that stephanie is a special ed teacher. which just makes the connection even greater.


i must admit i was blown away with the creativity of all involved. just look at some of the blocks.

 
the quilt is done and happily presented to the waiting parents.

 
at the request of the inspirer...believe it or not her name truly is sara joyce...we created a label on the back...complete with our sarah's infamous four legged "e." 
 
 
we did have one extra block and decided to use it to create a "baby's first rag quilt."

 
we are now just patiently awaiting the news that baby carroll has arrived. a perfect kiss is waiting for him/her.

Tuesday, March 26, 2013

Sarah is a Quilt Designer

 
Thank you for coming to visit our store blog today.  To read more about Sarah's personal life you can visit her blog at www.sarahely8989.blogspot.com

Sunday, March 24, 2013

buckeye love...

our sarah sure does love babies.  and when they are little buckeye fans...

 
well, they just warm her heart.  and that melts mine.

 
there sure is nothing sweeter than a sleeping baby in your arms.  thank you mason and your momma and grandma for sharing. you sure made our sarah a happy gal.