Both Inspired by Children

Two logos that have become a part of our family.  Mama Bracelets and ellaWEAR Jewelry.  Both businesses inspired by children, both businesses benefitting children.

Mama Bracelets started out as nursing reminder bracelets.  It quickly evolved into personalized jewelry as well as jewelry that supported various causes (Rett Syndrome, Autism, Lung Cancer, and SIDS).  Once Ella was diagnosed with Spinal Muscular Atrophy (SMA) the focus turned toward SMA research support.  To date Mama Bracelets and its customers have domed just over $3,200 to the research efforts through organizations such as Families of SMA (FSMA) and the Jennifer Trust for SMA (JTSMA) to name two.  

In 2013 ellaWEAR Jewelry was created to help fund the purchase of a home for Ella and the necessary modifications therein.  Borrowing the "party" idea we raised over $2,500 in pure profit for Ella needs.

Both businesses rolled into one with the goal of helping children & families with SMA...albeit our own child or the children of others...they have provided much comfort and support in the combined 3+ years they have existed.

The time has come for us to close the cyber-doors to Mama Bracelets and ellaWEAR Jewelry.  Running a business takes a lot of effort, mentally as well as physically...not to mention financially.  Currently our beloved business is just "above water" and we feel it best to take what we've earned and put it toward our family's needs.

Over the past 3+ years we have met with and worked with so many wonderful people.  We feel we have made a positive difference in many people's lives if only for a short time.  We prided ourselves on the fact that our "Support & Awareness" products were always made with high quality, long-lasting materials with the idea that those who purchased them could wear them for years to come.  Our ellaWEAR Collection followed the same suit in being high quality jewelry.

So our cyber-doors will be closed for good on February 15, 2014.

We have marked EVERYTHING on the website on sale for $5 (plus $3 shipping)!! A great time to get some incredible jewelry at incredible prices.  As always, the proceeds will benefit SMA research as well as Ella Sabine Casten.

Please visit us at:

Mama Bracelets
www.mamabracelets.com

and

ellaWEAR Jewelry
www.ellawearjewelry.com

Thank you to everyone for always providing so much support in so many ways, with Mama Bracelets and ellaWEAR Jewelry being just two of those ways.  

Sincerely,
The Casten Family

Her World in a Moment...(by Michael)

I carried Ella down to the basement as I've done for the past three-and-a-half years.  The trip down has gotten more precarious.  Her size, weight, and lack of a center of gravity makes for a dangerous trip each time it's taken.  If there's a toy or anything on a stair it could lead to disaster.

As we reached the bottom and found her little wheelchair she said to me, "I wish I could walk.  Then you wouldn't have to carry me."

"I know you do.  And maybe someday you will."  I replied.  "They're working very hard to get rid of your SMA."

"Ok." was all she ever really says when we have these brief conversations about her walking.  

A few days later we were out and Ella saw a little girl who was just about her age.  The little girl was crawling on the floor pretending to be a baby.  Ella watched.  Her expression was stoic.  I can only imagine the thoughts that may have been going through her head.  The little girl stood up and raced away.  Ella's head cocked to the left a bit and her brow furrowed slightly.  Her lips quivered just slightly, hardly noticeable except to her parent.  She kept an eye on the little girl; I kept an eye on mine.

I walked closer to her, knelt down to be eye level with her as she sat in her wheelchair.  Brushing a few locks of hair behind her ear and bringing my fingers down her soft cheek I looked deep into her eyes and hers met mine.  

"I love you.  You are absolutely perfect the way you are."  is what I spoke to her.

Her smile began to return and her world become the moment we shared.  She tilted her head toward mine and they met.  I kissed her.  She returned the gesture.  She held my finger and we sat for a moment not caring about the world around us.

As Ella gets older we must face new territories of how best to handle SMA.  It's such an invasive disease physically and mentally; for the afflicted and those closest to them.  It produces fear and doubt, wonderment and courage.  It elicits strength and calm while presenting challenges and defeats.    
There are times when I feel, as a parent, a person, a human being that I am at my wits end.  Of course, I feel this way often...I turn to God, my wife, my family, and my friends.  

Seems like I'm turning to one or the other constantly.

2014 holds much hope for the beginnings of effective treatments and a cure for SMA.  Clinical trials that have already begun will continue; new trials will be underway.  Hope springs eternal, as they say.  In the meantime we will listen to our child, hold her, comfort her, and care for her...keeping her alive until they find a cure...just as we vowed to do two and a half years ago upon her diagnosis.

Casten's Key to Learning...(by Michael)

Casten's Key to Learning

I have been teaching 4th Grade at Lincoln Elementary School (Elmhurst, IL) since 2001.  Before that I worked as a Daycare Supervisor & Summer Daycare Coordinator/Supervisor for Hephzibah Children's Association (Oak Park, IL) for 8+ years.

Needless to say, I enjoy helping kids and their families.  

When our oldest, Ava, was born we decided to have Lindsay be a stay-at-home mom as we planned for two more kids.  We knew that going from a two-income family down to a one-income family would be difficult at best.  We were right.  Along came Henry and our budget grew tighter.  We worked our budget, cut corners where we could and planned for our third child.  Ella came to us and we were feeling like a complete family.

Enter SMA.  The diagnosis obviously threw us for a loop.  Quite unexpected and made quite a difference in our plans.  We adjusted our budget, our lifestyle, and our existence.

Lindsay had started Mama Bracelets right after Ella was born.  It has provided some extra income but certainly not enough to make ends meet each month.  As the economic climate continues to cause struggles we have come to the conclusion that we need to do something to bring in more money.

After a few discussions we decided to have me become a tutor!  So I suppose this is the official announcement that my tutoring career has begun.

I have created a website and a Facebook page to help spread the word about my services.  I feel that I can make a difference for any student (through remediation or enrichment) in any subject area who is still in elementary or middle school (K-8).  My rates are reasonable, my hours are flexible, and my experience with curriculum, teaching methods, and ways to connect with kids is outstanding.  

If you, or anyone you know lives in the west suburbs of Chicago and is in need of a tutor, please feel free to pass along the following information:

Casten's Key to Learning

• Website:  mrcasten.wix.com/key-to-learning
• Facebook:  www.facebook.com/castentutoring
• Email: keytolearning@icloud.com

Walls...(by Michael)

Something's been happening to me as of late.  Every time we begin talking about moving in order to provide Ella with a house that will work for her my stomach turns, my mind shuts down, and my defenses go up.

I listen to what Lindsay has to say and it all makes perfect sense to me.  I don't, however, want to think about it.  For a while I really didn't understand why, either.  I just knew the topic was something I'd rather avoid than engage in a conversation about.  

After trudging through the latest conversation and offering little to it, I began really thinking about why my world seems closed up around this topic.  And then it hit me...like a ton of bricks.

The life changing event that we are embarking on further brings the reality of SMA to the forefront.  My natural tendancy is to not want SMA to exist at all, least of all in our own child.  But it does.  It exists.  It exists in our child.  It's there. And it really sucks.

Hence the reason for the brick wall I have been constructing around the idea of moving.  It's getting closer to the time when we are to begin the actual process and my wall isn't finished.  It won't be finished either...and because I cannot finish my wall I become defensive.  Yet I feel I am really defenseless.  I feel that this is being thrust upon me without my prior consent.  I feel "out of control" and that feeling is not pleasant when we're talking about the livelihood of our youngest child.  

Realizing this part of myself makes a difference though.  Understanding that I have been methodically placing one brick after another in an attempt to shelter myself from the stark reality that SMA is makes it easier to peer over the partially constructed wall and see what's out there.  Engaging in activities that will help get our house ready for the market will lead to the demise of the wall under construction.  Getting out into the marketplace and finding the house that will be a safe place for Ella whilst providing her with opportunities for independence that she simply doesn't have here will allow me to push back against SMA.

I'm adept at building brick walls around situations, emotions, and ideas as I have been doing it since I was nine years old.  I've built less and less over the years but still possess the undeniable skills.  My wall that has been partially built is strong and sturdy in its base, well designed in its walls to date, and will require some help to actually bring it down.

This is where you come in.

We are going to need some help.

If you, or somebody you know, can help in the following ways...please follow the link at the end of this post to join us in getting our current house ready for the market.

This is what we're looking at in terms of help:

We need people:

• to patch and paint walls
• to deep clean the entire house
• to help purge unnecessary  household items in storage or wherever
• to watch the kids while Lindsay and I work on the house

We have a "Care Calendar" that is set up with open time slots for the areas mentioned above.  The web address is:

www.carecalendar.org

Log-in info is as follows:

Calendar ID:  115107

Security Code:  6639

We are looking to have the house ready by the end of January...any help in any way is so greatly appreciated.

Thank you all so much for Caring for The Castens

Growing Up (by Lindsay)

Lately I've been struggling a little bit.

I've been struggling with the fact that our kids are growing up.

On the one hand, growing up has been great!  We're done with diapers, naps and all of the "baby" routines.  Our kids play with each other and can hold meaningful conversations with one another and us.

But on the other hand, growing up is not quite what we planned it to be.

Many of my friends have children close in age to Ava, Henry and Ella.  And their kids are growing up as well.  

But it's different for them.

Their children are becoming independent.  

Ella is not.

We can't just let the kids go off and play on their own.  Ella needs help with almost everything she does.  From going potty, to getting toys, to changing her location, to eating.  We need to be there with her almost constantly.  

We can't just send the kids outside to play in the snow.  We have to be right there with Ella.  We won't be able to sit on a park bench and watch the kids play on a playground.  We'll have to help Ella with all of the activities she wants to do.

Going to friends' houses for play dates is becoming harder for us. Their houses are not set up to accommodate Ella's power wheelchair and it is becoming more difficult for Ella to maneuver her little manual wheelchair away from home (most other houses are carpeted and she is not strong enough to move her chair on carpet).  So what ends up happening is Ava and Henry go off to play with their friends, while my focus is entirely on Ella and her needs/wants.  It's very hard for Ella to keep up with her friends when we're away from home and it's almost impossible for me to catch up with my friends (the other moms) while we're there.

I don't mean to sound selfish, but it's just hard watching the other children growing up and becoming so independent, knowing that's not going to happen for Ella.  

It's hard to wrap my head around the fact that we will be helping her with almost everything forever.

We really need that cure...

The Next Steps

     Things are moving forward and we've a feeling they are going to be moving quickly!  As of the beginning of 2014 we have raised just enough money to actually make the move we've been working on.  The next steps are to:

• Get our current house ready for the market and get it listed
• Begin seriously looking at houses to purchase
• Begin the "purging" before the "packing"
• Move the Fall/Winter ellaWEAR Jewelry Collection out

     The last bullet point about the ellaWEAR Jewelry has been a point of discussion for some time.  The Fall/Winter Collection, its parties, and general sales provided a wonderful boost to our efforts to raise money for "Ella's House Fund".  We would love to continue this project!  We do, however, have to be realistic about what is coming up and how best to use our energies.

     Our thought is to put the ellaWEAR Jewelry Collection personal parties on hold until we actually purchase a house and move in.  At that point we are going to need more funds to make the necessary modifications for Ella.  This is where ellaWEAR Jewelry can once again be implemented using the ellaWEAR Parties.

     So for right now we are looking to clear out the current ellaWEAR inventory and have marked everything 50% off until the inventory is cleared.  Once we are in a better position in terms of time and energy, we will begin a brand new collection and start up the parties once more!

     One thought for anybody would be to have an Online ellaWEAR Party to help move the current inventory out!  All proceeds would still benefit "Ella's House Fund" and of course the host earns free jewelry! 

     There are a few fundraisers being planned for the Spring of 2014 and once we have more details we will post them for you.  In the meantime, please keep us in your thoughts and prayers as we put our current house on the market and start the process of finding a house that will better suit Ella's growing needs.  And if you would like some beautiful jewelry, remember, it's all 50% off!

     Thank you so very much for all of your support.  We seriously could not have gotten where we are without everyone's help...we're making excellent progress and are hopeful and excited for what's to come!

The Castens

The First Morning of 2014...(by Michael)

     The first morning of 2014 greeted us with a steady snowfall coupled with chilling temperatures.  The flakes are small and light; they whirl in a seemingly aimless descent...each one finding its final resting place among its peers.

     2014 is here.  2013 has lumbered out of time and 2014 swirls its way into our lives.  The promises it holds gives way to optimism, hopes of a brighter future, and uncertainty; simply falling in line with what time really does offer us as we traverse through it.

     Several months ago we made the decision to seek out and purchase a house that would be more conducive to handicap accessible modifications than our current house might be.  With this in mind we shifted our family business to encompass a wider variety of products thereby making it possible to invite people to hold "ellaWEAR Jewelry" parties to help raise funds for "Ella's House Fund".  We started a Facebook Page, "Caring for The Castens" as well as an online fundraising page.  We received online donations, personal donations, and support in many ways thus far.  Through it all we have raised just over 23% of our goal.  This is really incredible considering it has only been a good three months!  

     2013 brought many new advancements to the battle against SMA.  New clinical trials were started and others were approved.  The excitement within the SMA Community of Families, coupled with the anticipation of successful outcomes of these approaches, permeates cyberspace.

     In the same breath, we also look back at the many people who lost their life to SMA.  The helpless feeling that washes over a person when the news of another child lost to SMA strikes deeply into the hope we carry with us.  Nevertheless, we gather ourselves, lean on one another, and look at what we do have right now, seeking the healing powers of hope; seeking the miracle we so fervently cling to unconditionally. May those who have passed fly free in the glory that surrounds them and may their families and friends find comfort and peace in the coming years.

     Ella has, to our surprise, made some tremendous gains.  She works extremely hard in her therapies and has a unwavering desire to overcome the harsh obstacles SMA throws at her. Her pride shines through as she defies the power of gravity that often overtakes her fragile body.  She has been sitting on the floor more often, not only holding herself up but twisting and turning, leaning on her arms, and scooting around.  She will often find an object that has some weight to it (a book, a game box, etc) and will lift it, proudly announcing her feat.  She has developed an increased interest in food...eating by mouth more than she previously had.  Her coloring, writing, and "reading" has also been on the rise as she loves school. 

     Ava and Henry have also worked through much this past year.  They are constantly challenged by SMA in a different way than Ella is challenged.  They must navigate a house filled with equipment, deal with a younger sister who has command of a huge power wheelchair (and sometimes uses it to force her way!), make concessions for the attention they'd like to have in order for us to take care of Ella at any given moment.  They are learning to help Ella in ways that most youngsters wouldn't have to do with their younger sibling.  They, through all of this, still treat her as they would treat anyone else...they call names, tease, take toys, make fun, poke, prod, and bother.  They also laugh together, play games with each other, and are developing lifelong relationships with one another.  Ava is flourishing in 1st Grade and Henry has good reports from pre-school all of the time.  They love their teachers, are making friends, and learning much.  

     Lindsay and I continue to walk the path of raising a family, working through the difficulties of SMA, while building a future for ourselves.  We have developed routines, found outlets, and make time for one another.  While the pressures are great, the worry is there, and the uncertainty seems daunting...we manage to live our lives.  We rely on one another and we rely on our families, friends, acquaintances, and strangers...we are quite blessed.

     As we all know, "life is what happens to you as you're planning for it"...with that being said we really do not know what 2014 holds for the Casten Family.  What we do know, however, is that whatever comes our way we have the love and support of each other and of so many others.