Bella & Ben’s Story ~ The Diagnosis That Rocked Our World

By Cheryl Facciani

We traveled to Washington, DC for Thanksgiving to see my parents and other family. On the train ride up from Roanoke, VA, I noticed that Bella literally drank down 24 ounces of water in 10 minutes. She quickly had to use the facilities that were three train cars up. We went and walked back to our seats. Ten minutes later, she was thirsty again. I questioned her and thought that perhaps this was just an excuse for another train walking excursion. We went to the cafe and got another bottle of water. She proceeded to polish off another 24 ounces in the next 15 minutes. This was, of course, followed by another and another request to use the bathroom. I started to become suspicious and began to question what was going on. It was then that I realized her breath smelled stale for someone who just drank 48 ounces of water.

I turned to my husband, who is a physician, after our fifth trip to the bathroom and said, ”Either our daughter has a urinary tract infection or Type 1 Diabetes.”

He looked at me blankly and shook off the idea. I watched and monitored her the whole weekend. Her symptoms waxed and waned.

By Monday, she seemed better and off to school she went. I didn’t give it a second thought until she got off the school bus, tossed her book bag into the mudroom and declared, “That’s it. I peed and drank water all day and my teachers are mad at me. You’ve got to take me to the doctor!” This from the mouth of a sweet, shy, quiet little girl all of 6 years old.

“Absolutely, let’s go to see the doctor,” I said, knowing with a pit in my stomach, and with knees shaking, that my fears had been realized. Something was definitely wrong.

At the pediatrician’s office, Bella urinated into a cup and the pediatrician entered the office with saddened eyes. I knew immediately that my gut was right. She was positive for ketones and was diagnosed with Type 1 Diabetes on December 1, 2013. My world crumbled around me.

Ketones are a byproduct when the pancreas is unable to produce insulin, a key hormone that turns the body’s food source into energy for cell use. Bella was basically starving the cells in her body because her pancreas broke. 

Type 1 Diabetes is an autoimmune disorder that attacks the pancreas, rendering it useless. The pancreas is a vital organ that helps regulate the sugars in your body so you can use them for energy. The pancreas is the most incredible organ because it produces both the hormone insulin, which keeps blood sugar levels from going too high, and glucose, which keeps blood sugar levels from going too low. Too much sugar leads to hyperglycemia and too little sugar or too much insulin leads to hypoglycemia. Both are deadly. Without insulin, you die. 

It is a delicate balance that the pancreas keeps and having a broken pancreas means that we have to be Bella’s pancreas. Unfortunately, we can’t think like a pancreas and her broken pancreas can’t tell us exactly what is going on in her body. Therefore, there is a lot of guesswork. A pump that pumps insulin into her body only does what we tell it. The pump cannot think. It knows nothing and does not communicate with her body. If we tell her pump to give her too much insulin for her little body, she will go low and could eventually die. If we tell her pump to give too little insulin, her blood sugar will go too high and we will essentially kill her body’s cells and other organs.  

After a few days in the hospital, we came home, still shocked and dismayed. We met with the doctors again to review care instructions. Adjustments were constantly being made at this early stage. We met with the staff at Bella’s school to train them and establish safety action plans.

One day shortly after Bella returned to school, I noticed my 9 year old son, Ben, looked noticeably thinner.  I started to put some thoughts together. He had recently had a few incidences of bed wetting, which he had never done before. He complained that he was thirsty all the time too. He reported that he was getting up in the middle of the night and going to the bathroom frequently. Suddenly, it hit me– he had Type 1 Diabetes, too.

According to the statistics, the chances having two children with T1D were less than 3%. I had already researched that number. I couldn’t fathom that we were actually that unlucky, that we fell into that 3%. I lived with this knowledge for two days before I mentioned anything to my husband. I knew I couldn’t handle the truth yet. I tried to rationalize my thoughts and fears. I tried to forget the truth but I knew.

I finally mentioned it to my husband. He said, in a matter of fact manner, ”Well, let’s do it. We test him right now.”

I said, “I can’t. I’ll throw up if it is true.”

He tested his blood glucose levels on Bella’s glucometer and he posted 345 — a high number. I cried and later vomited.

All I could think was how did this happen — not once, but twice — in less than a week? You search for answers. You think, what did I do wrong? Where did I go? What didn’t I do? What made this happen?

The truth is we will find a cure before we have answers to these questions. It doesn’t matter what happened anymore. There is no turning back. There is no answer. There is nothing we could have done differently.

  • 90% of Type 1 Diabetics have NO prior family history with the disease. 
  • 15,000 children are diagnosed with T1D a year. 
  • For the first time ever this year, there were just as many adults diagnosed with T1D as children. (15,000 adults) This is why we can no longer call it  ”Juvenile Diabetes.” Too many adults are getting it, too. 
  • 30,000 people – both children and adults — are being diagnosed with T1D now every year. All over the world rates are rising and no one knows why. 

It is not because of better detection. Once you have it, you have it. Without treatment you die. Most people are diagnosed when they are close to death or in a diabetic coma or when they are severely vomiting and having seizures. There is no way to hide that you have it. Therefore, the higher rates are not because of better awareness or detection. This is very scary. Researchers are now starting to link Type 1 Diabetes to three types of viruses, but they don’t really know which ones exactly or how to stop them. 

To be frank, at this point, I can’t try to figure out why all this has happened.

Am I mad? Absolutely. Am I angry? Yes. Am I resentful that others don’t have to watch their babies go through this and don’t have the worry and fear that I have on a daily basis? Probably.

Do I know that I must pray, hope, dream and BELIEVE that there will be a cure? Without a doubt. If I don’t have these four things, I have nothing. I will wither in my anger, madness, and resentfulness.

I have made a choice. My choice is to fight this with every ounce of strength I can muster, because no one should have to suffer with this disease. I want to stop Type 1 Diabetes for every child and adult out there now living with T1D, for every person diagnosed today and tomorrow and everyday until we have a cure.

JDRF is the only organization that will get us there. Frankly, the government doesn’t do much. Every breakthrough that has occurred has occurred because of JDRF‘s initiatives and self funded research projects. The JDRF is paving our path to the future with a world without T1D.

They will turn Type One into Type None. It is only a matter of dollars and time.

A Cause Close to Our Hearts
Bradley & Son Funeral Homes and the Center for Life Transition have sponsored Bella & Ben’s Believers as their team raises money for the JDRF Walk to Cure Diabetes on 9/28/14 in Roanoke, VA. This is a nationwide event to help raise the much needed funding for continued research on this autoimmune disease and its future cure. We hope that their family’s story has inspired you to contribute anything you can to this important cause. Please visit their team page directly to make a donation and to learn more about how you can get involved.


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Union County’s Very First “Death Café” Hosted by CFLT and Imagine

Last month the Center for Life Transition and Imagine: A Center for Coping with Loss came together to facilitate Union County’s very first Death Café at Rockin’ Joes in Westfield. (If you’ve never heard of the “Death Café” phenomenon, check out this article). 15 people attended from around the area, eager to chat about death over coffee and cake. It was not a morbid or grim evening, in was a coming together of people from different backgrounds and all life stages to talk about death and dying for a number of reasons – to live a fuller life, to make end of life care and planning easier and to erase some of the fear and uncertainty associated with out inevitable departure.

One participant discussed her fears surrounding her own death and this enabled the group to have a conversation on Advanced Care Planning and Advanced Directives.  Another participant felt it was a great platform to talk about positive and negative experiences surrounding death.  There was laughter as well as tears as we explored the unknown about life after death.

As one of the facilitators, I do believe that if we can remove the stigma and fear surrounding death and dying, it allows us to live a fuller life with less fear about the future. The participants left feeling lighter and refreshed after being able to talk freely about an often taboo subject.

We are excited to announce that the Death Café will become a regular feature of our support services at the Center for Life Transition. We will be hosting another Death Café in the Chatham area soon, and expect a great turnout once more. Please stay tuned for the date and venue information.

Looking forward to seeing you there.

Doreen Hall

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Give Your Differences a Chance

 

As social animals, we typically find it easier to connect with other people by identifying the things we have in common with each other. We celebrate these similarities and build rapport with others to whom we can relate.  Support groups are an excellent example of relating to people we don’t know by connecting similar experiences.

It is human nature to desire a sense of belonging within a group, and from this sense of belonging comes a feeling of normalcy. This validation is particularly important during bereavement, when the constellation of thoughts and feelings we experience can be overwhelming, unpredictable, and scary.

While we spend all this energy seeking out and celebrating the things we have in common, it is a sad truth that we often forget how important our differences are. We sometimes have a hard time identifying what it is that makes us unique and different from the person sitting next to us, and likewise what makes the person next to you unique. It is a fascinating exercise to try and shift your perspective when meeting someone for the first time – and it becomes obvious that we instinctively suppress our differences in the interest of finding a commonality.

Our support groups are open to anyone who has suffered a loss. This is the common thread that connects our group members, and it’s a vital connection. However, our support groups do not differentiate between losses. We do not separate widows from widowers, orphans from parents who have lost a child, or the recently bereaved from those who have grieved for years.

When we learn to acknowledge what makes us different from others, in spite of our similarities, we can learn to appreciate how unique and important each of us is. This opens the doorway to loving others and learning all of what life has to teach us.

So the next time you meet a stranger, try a new approach. Allow yourself to be different from them. See what you can learn from them, and what you can teach them. You may be surprised by a wonderful connection in the end.

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“I Can’t Find the Croutons!”

By Scott W. Bradley

Mrs. C complained to the group about her last journey to the supermarket.  I could see the frustration in her eyes as the rest of the group shook their heads in affirmation as she complained about the difficulty of dealing with this trivial task.  This is a common complaint that I hear in my bereavement support groups.  Bewilderment and a lower tolerance for frustration are very likely to occur to the newly bereaved.  In this circumstance, the previously effortless task of food shopping for the week had become an exhausting march through the grocery store.  God forbid the clerks at the store rearrange things!  The extra effort to search out croutons could lead to a full scale abandonment of the grocery shopping and head straight home to bed.

Photo Credit: Caden Crawford

Most people know that everyday life becomes a struggle after the death of a loved one.  What most people don’t expect is for this process to linger much past six months from the time a loved one dies.  The reality is that temporary memory loss and short emotional fuses may last much longer than six months.  For many, the most severe symptoms of impatience and loss of an effortless ability manage daily tasks lasts well in to the first year of mourning.  It has been my observation working with many bereaved people that suffering the loss of a loved one influences our most primitive sense of safety, heightens our defenses, and puts our souls on danger alert.  Now that our beloved is no longer with us, our minds may ponder every action taken to assess if it’s necessary to our survival.  Every act may be put to the test of relevance under these new circumstances.  Most of this is happening out of our conscious awareness, but we feel the effects as exhaustion, short attention span, and impatience.  There is an awareness that adjustments are unavoidable, but are resisted in order to magically hold on to the deceased and an unchanged life.

Being able to talk with others that are suffering from the same difficulties is a great benefit of joining a support group, especially a support group at The Center for Life Transition.  The reason being is that support groups at The Center for Life Transition are ongoing and you can attend as long as you would like.  People stay an average of two years.  Most support groups last only six to ten sessions and don’t afford the group members a chance to talk about their short emotional fuses, lack of memory, and the more long term hurdles of adjusting to a changed life.  Short term groups don’t give a person the chance to embrace their grief, own their grief, and share their grief in a supportive setting with understanding people.  Doing so helps the bereaved adjust at one’s own pace.

If you find yourself losing it over croutons at the grocery store, come join one of our support groups.  We understand what you’re going through.

 

 

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A Note From Our Keynote Speaker – and a Generous Offer for CFLT Members

 

“In the depth of winter, I finally learned that within me there lay an invincible summer.” 
 
Albert Camus

I’d like to extend my deepest gratitude and appreciation to the Center Life Transition giving me the opportunity to speak to such an inspiring group of people on May 1st.  Dealing with the loss of any kind, particularly of a loved one, can be very difficult and can greatly affect a person’s mental and physical health.

Throughout my life, I have found that physical activity has helped me deal with times of great struggle and have found exercise to be a vehicle to overcoming such obstacles. Not only does exercise control weight and combat diseases, but regular exercise can release endorphins, which improve mood, boost energy, and promote better sleep. Taking the first step to incorporating exercise in our daily lifestyle can be difficult, for this reason, I would like to help you make this transition and offer the members of the Center for Life Transition a complimentary personal training session.

Sincerely,

Jim Papeika

Master Certified Fitness Trainer
Sports Conditioning Specialist

www.MRpersonaltraining.com

155 Maplewood Ave.
Maplewood, NJ 07040
(973)580-0633

 

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Why might people be reluctant to seek counseling for their grief?

 

By Doreen Hall

If anyone reading this is undecided about reaching out to The Center For Life Transition support program I urge you to please continue reading. 

There are several reasons why people do not seek support; you may feel unsure about whether it will help you or you feel that you can “do this alone.” Many people feel that they do not have time and that the problem will go away by itself.  If you are reluctant to seek counseling for your grief please consider this: if you had an accident and broke your leg you would immediately go to the emergency room without hesitation, yet after the death of a loved one your heart is broken and you expect to be able to “fix” this yourself.

If it seems as if the unfinished business of loss is preventing you from living your life the way you would like to, it would be wise to pay it the attention that it deserves.  If you are feeling that your family and friends do not understand what you are going through or are giving support but it is not enough then you may wish to consider reaching out to us for support.

The mourning process should be respected and worked through– effective grief work is not done in isolation.  It is important to talk about your feelings, thoughts and memories associated with the loss of your loved one.  Grief counseling helps you recognize normal aspects of the mourning process, cope with the pain associated with the loss, deal with life changes that may follow the loss, and develop coping strategies for seeking support and self-care.

The Center For Life Transition support program can help you at this difficult time. We offer many different types of support. Rather than thinking about whether accessing support will help you, you may want to consider counseling as a gift to yourself.

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April Recap – Center for Life Transition

We’ve gotten a great response from our original post about volunteers for our bereavement support program, and we’re happy to report that we are in the beginning stages of planning our first volunteer training session.

We would love to have just a few more volunteers join us for this training to “round out” the number of graduates we will have; we see this as a long term project with many future graduating classes so consistency in our training program will be very important.

Our training sessions will be professionally facilitated by our bereavement experts at CFLT, including Doreen Hall, Aftercare Coordinator for Bradley & Son Funeral Homes. Doreen has an impressive track record of building volunteer programs for this purpose in her home country of England and we’re so excited to put her in the driver’s seat with the CFLT program.

If you or anyone you know is interested in making a difference in the lives of those who are mourning a loss, please give us a call at (973) 665-1782.

In other news, we are hosting our very first Healing Hearts Dinner this Thursday, May 1, at Marco Polo Restaurant in Summit. We’re very excited to be hosting an event after normal work hours since we know many members haven’t been able to attend our luncheons due to daytime obligations. As usual, our Healing Hearts events are so much more than a meal – it’s a great way to break bread with friends, meet new people, and hopefully learn something new. This month we will have a special keynote speaker teaching us about physical fitness through all life stages and how fitness can help during times of extreme stress. Keep an eye out for our speaker’s guest entry on our blog in the coming weeks in case you can’t attend on Thursday.

Lastly, the Center for Life Transition has gotten a facelift. We launched our brand new logo this month and we hope everyone loves it as much as we do. It’s a cleaner, fresher representation of what we’re about at CFLT – helping people find the potential for growth at all stages of their grieving. We’ll be incorporating this logo into everything we do going forward, including our newly redesigned bereavement support newsletters (if you would like a free one-year subscription, just give us a call).

April has proven to be a hugely productive month for us at CFLT with a lot of great “firsts” and growth to look forward to this year. And isn’t that what Spring is all about? 

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Our New Logo – And the Meaning Behind It

 

By Scott Bradley

Spring has sprung around here and there is evidence all around us that we made it through a tough winter.  Trees are starting to bud and flowers are starting to push through the ground.  The struggle to live and grow shows its evidence once again.  This is the mission of The Center for Life Transition; to support people struggling with the forces of life and death, and the tree branch logo represents that well. 

This winter in particular was hard on the plants in my yard.  I see lots of burn from the bitter cold, but I see new growth already pushing through.  Although plants were damaged, they seem to be resilient enough to live.  The logo represents the struggle of life to keep living in spite of being damaged.  At the CFLT we start with whatever resilience the person has and we join that resilience so the client can nurture their own internal strength and carry on from the trauma her or she experienced.

As I have added plantings to my garden, I have noticed some did not do well.  I had to give them some added attention and nurtured them.  In spite of this, they really struggled to live.  The plants lost leaves and branches withered.  Just as I thought the plants may succumb I started to see new growth.  Over the years I have noticed the plants that really struggled have now become transformed and seem the strongest in my garden.  And, it may be just me, but they seem to have a special character, a little gnarled, but strong.

The CFLT logo represents the season of spring and the struggle to thrive.  The branch represents resilience and the leaves represent transformation.  Just as a tree struggles to live in a harsh environment, people struggle too.  By embracing the struggles in one’s life, a person’s life may become enhanced.  At the CFLT we support that struggle and strive to help people transform their lives through their life experiences.

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The Gift of Volunteering – Are You Ready to Help?

As the Aftercare Coordinator for Bradley Funeral Homes and the Center for Life Transition, I am reaching out to you to ask for your help. We are going to expand our support services to enable us to offer different types of support for individuals at every stage of their mourning process. To do this we need to recruit and train volunteers.

Volunteers are a highly valued part of the grief encounter and we will not be able to achieve our goal without the dedicated support of volunteers. At some point in your grief journey, you may feel that you would like to do something productive and meaningful. As one who truly understands the grieving process, you may feel ready to reach out to others who are grieving. You may feel you have a great deal to share with others who are suffering; you can identify with their struggles, empathize with their sorrows and offer valuable direction and support. Giving of yourself as a volunteer enables you to pursue personal interests, learn new skills and make a positive difference in your community.

Too often we underestimate the power of a volunteer. A touch, a smile, a kind word, and a listening ear all help make a difference in the lives they touch; volunteers are special people and are our most cherished asset. Their unselfish actions continually help lighten the burdens of bereaved people.

The timing of becoming a volunteer is crucial. We appreciate that you may feel you want to help others right away but it is important that after losing a loved one you take time to grieve yourself. Out of respect for the grieving process we ask that you wait at least a year or more following your loss before volunteering with us.

If you or anyone you know would like to volunteer please contact me. I would be happy to have you join our fantastic team!

Doreen Hall
973-665-1782 ext. 3
doreen@bradleyfuneralhomes.com

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Individual Counseling: Where it fits into your Grief Journey

 

Just like everyone’s loss is unique, the grief journey a person experiences following their loss is equally personal. Years of scientific research on the subject have yielded new possibilities for understanding the nuance of bereavement, but we are still without a “roadmap.” That’s part of what makes it so scary.

The reality is that there is no way to “speed up” the process, skip steps, or go through the motions faster than the guy next to you to feel better. Grief has no timetable and plays no favorites.

Sometimes it feels like a prison sentence. You just need to serve your time and eventually you’ll be free. In some ways this is an accurate representation of bereavement, but it doesn’t account for the infinite paths and directions the journey can take. You’re muddling through now and feeling relatively okay, but who’s to say how you’ll feel a year from now? Better? Worse? Will the things that help you get through the day now still be effective then?

The best way to resolve this uncertainty is to know what our resources are. We probably won’t use them all at once, but sometimes just knowing where to go for support when we need it can be hugely comforting.

We hear often from both women and men about the topic of counseling. Many wonder if they still need individual counseling if they’re participating in a support group, and vice versa – if they’re seeing a counselor one on one, wouldn’t the support group sessions be sort of redundant?

It’s important to recognize that these are two different animals — separate activities with distinct therapeutic benefits. We developed our support group program with this in mind. We believe that our support groups, while effective on their own for many people, can also be a wonderful supplement to individual counseling. Sure, you may very well find yourself discussing the same thing individually and with the group, but that doesn’t make it redundant or a waste of your time. The value of a support group lies in the opportunity to relate to your peers, to hear their stories of loss in addition to sharing your own story, and to begin to understand that the constellation of feelings you’re experiencing is normal.  The support group allows you to bear witness to the grief journeys of other members and to help you go through your own without feeling alone or cast adrift.

Individual counseling provides another safe and confidential environment for sharing your experiences following a loss. Unlike a support group session, which allows for open discussion (or just listening) between all members, individual counseling provides a designated time during which you have the undivided attention of your counselor or therapist. This can be a wonderful environment for addressing feelings or issues that you weren’t able to bring up in a group setting – because let’s face it, there are probably some things that you’d rather keep private. Individual counseling can also be a conduit for understanding how other events and relationships in your life fit into your grief journey (for better or for worse) on a level that you may not achieve in a group setting.

Participating in both a support group and individual counseling allows you to view one scene from two different vantage points. One of the best things you can do is bring your insights from one into the other, and you may find yourself “connecting dots” that you didn’t even know were there.

If you’re interested in joining a free support group, take the first step and reach out to us. You can either call us at (973) 665-1782 or email Doreen Hall at doreen@bradleyfuneralhomes.com. We also offer individual counseling so feel free to inquire about that too.

Understanding your grief is the key to integrating it into your life – even if understanding means acknowledging that there’s no making sense of it. Any weapon you can add to your arsenal along the way will make the journey a little less scary.

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