Stephi's Heart

My Stephi’s sadness has finally shown itself.  My middle child; the sensitive one, the peacekeeper, has finally allowed herself to show her brokenness.  It breaks my heart and yet it is also a relief.  We have been concerned and watching for any signs of trouble since her little brother, Joshua died from SUDEP in 2010.  I believe part of the delay of reality is a burden laid by well-meaning but misguided words of those who told Stephi to “take care of your parents” during the early weeks of our loss.  Light hearted words that had such a harmful impact on our child.

A couple of weeks after Josh died; Stephi came to me in tears and first shared her burden of guilt as she felt completely unable to take care of us.  As love poured through my numb body,   I assured her that both her dad and I could take care of ourselves; the only one she needed to take care of was herself.  Oh how we needed her to take care of herself during a time we barely had enough strength to care for ourselves. 

She next felt the personal responsibility of trying to fill the gaps left by Josh.  Pick up his chores, his hobbies.  When this came out in early counseling attempts, we let her know how much we loved her and that was all we needed. 

Always the practical one, she couldn’t understand why her dad and I were so sad when there were two living children in our care.  The head completely agreed, but the heart did not.  I carefully explained that we always wanted our three kids.  How each of them were gifts who brought such a joy to our lives that all together made us a complete family.  Now that one part is missing we are  heartbroken beyond words.  I admitted from her continuing questions that if it had been another child, I would still be this heartbroken. 

In those early days and months, Stephi didn’t get very verbal, nor did she shed many tears, but she wrote.  Oh, how that girl wrote….she wrote journal entries, she wrote Facebook updates, she wrote poems, and she wrote essays in school that had a dark edge to them.   At 14 years of age, she witnessed me finding Josh that morning, she rushed to his side as I rushed for the phone, and she then ran to the door to let the EMTs in.  She saw her brother in a casket just three days after he playfully jumped on her as she watched her favorite tv show.

There was rawness in emotion in these writings, an inclusion of detail that I frankly struggled with both from the standpoint of not being emotionally able to relive those moments, and also the fear of bringing “outsiders” who hadn’t experienced such a loss into the dark place in the mind of grief.

Fortunately, God put Stephi’s words in the hands of a teacher who had been there.  Who did understand. 

God sent her a loving father who could take it better than me; He sent “The Board” and my roomies to love on her, wrap her in hugs, and keep her smiling until I was able. God also gave her a great big sister who kept tabs on her in places a parent is not allowed. 

On the surface, there wasn’t much change from before Joshua’s death….hugs never ceased, family nicknames and humor remained, but beyond that?  Forget it….there was no way I could sit down and REALLY listen…until recently.  God finally strengthened my heart enough for me to connect with her, to listen to her, and I believe it’s no coincidence that just as I am able to listen and truly understand, her sadness has begun to surface.

I don’t know where this is going…we’re just at the beginning, but wherever it leads I am so there beside her. 

When you go through deep waters, I will be with you. When you go through rivers of difficulty, you will not drown. When you walk through the fire of oppression, you will not be burned up; the flames will not consume you.  Isaiah 43:2

Hugs of Hope and Love to my Stephi!

Sherri

Roller Coasters and Chocolate...a winning combination

It was a  beautiful day when I rolled out of bed yesterday.  I knew it was going to be a special day when I turned over and looked into the eyes of two eager teenage girls and it wasn't even 8am!  What could drag them out of bed on a day they didn't have school?  Roller Coaster Day!

Roller Coaster Day is a tradition we started to celebrate Joshua's 13th birthday last year...now we are celebrating his 14th birthday! So hard to believe a year has passed.

Throughout all the trials of living without Josh, I have learned it's a good  idea to listen to my girls and how they wish to handle the challenging situations that arise in this new normal.  Every time I want to sit in a dark corner and cry, I just follow them instead and I am better for it.  Last year it was THEIR idea to ride roller coasters instead of sitting at home with the shades drawn like I was leaning towards.   We ended up actually having a great experience last year remembering Joshy while doing what he loved, and a new tradition was born. 

This year Stephi chose Hershey Park which was fine with me since it involved eating lots of chocolate...need I say more?!  We took the Newmanettes to the same park several years ago when Josh was barely in school so the park holds some happy memories.


Britt 11, Stephi 9, Joshua 7 with their new friend

We had also planned on being "cupcake angels" where we drop off cupcakes for the entire 6th grade class at Joshua's school but we found out we couldn't do it because they wouldn't be around...they were going to Hershey Park!  There is no such thing as coincidences!

We first stopped for a chocolate appetizer....big ole Reeses cups...a Josh favorite.  No sooner did we walk into the park than we began running into moms and kids from school. We grabbed hugs from several moms as well as from Joshua's former teachers and saw the familiar 6th grade tshirts running throughout the park. 

Hangin with some of Joshua's teachers!

One of the challenges with riding roller coasters for Josh is you have to do what he would do, which means ride the fastest, toughest roller coaster as soon as possible and as many times as possible.  Yikes! 

For one day the conversations take on a happy tone as we relive the Josh memories and WWJD (What Would Josh Do?)  It's a great way to celebrate our sweet ornery one and I am so glad my girls make it happen.

I admit it took a lot of effort to do this both physically and mentally and by 3:00 Brad and I were leaning on each other wanting for our comfy bed.  We're not sure if it is the grief or old age, but I prefer to blame the grief.  It doesn't matter because it is all worth it when we walk out arm and arm with our girls who have those smiles and a good new memory to add to our blessings.  For one day, they can have a somewhat normal family day, which I know they treasure.

After we returned that evening, I kissed everyone goodnight and went to Joshy's room to have my own time with my memories. It's what I would be tempted to do all day if left to my own wishes and would bring pity, but at the end of a day of celebration of his life, it takes on a special air of it's own and I just spend time with my sweet boy who I so love and miss!

He was so ornery, keeping him with us in a park was a constant challenge; He was so much fun, helping us to enjoy the simplest things, and oh how he loved roller coasters!  I am so lucky that I got to ride so many with him while he was here.

Happy Birthday Joshua, sweet angel boy!

Hugs!!!
Mom

Mothers on Mother's Day

I woke up at 9:00 this morning....whoa! I never sleep that late. It must have been sitting around with "the Board" til midnight over a bottle of wine that did that one. Whatever the reason, I'm awake on yet another one of those bittersweet days... Mother's Day.

I think the part of Mother's Day where I don't cook, clean or lift a finger suits me well..I can actually use this holiday as an excuse for doing nothing. I chose not to attend church and asked for lunch to be curbside pickup versus dining room so I could discreetly avoid the upbeat celebration of Mother's Day. That part of the day is still just too much to take on 17 months after losing Joshua.

Am I neglecting my living children by grieving my sweet ornery one? Truth be told my girls are thrilled not to have to make a big fuss over me and they know they are my reason to celebrate the blessings in my life, even when the loss of one of them overwhelms me at times.

A good plan of action is to keep busy so you won't think about it. Out to the garden I go with tools and plants just in time to look up to see our very own 'Neurologist in the making'. Our sweet neighbor who was a first responder on that day in November. She was so greatly impacted by Joshua's death that she chose to specialize in seizures, and is in the last part of her med training at Georgetown. She is the mother to two small boys who love and adore her. She inspires me beyond words and we have plans to work together in the world of epilepsy.

I turn around next to see my neighbor and dear friend who was diagnosed with stage 4 cancer two weeks before Joshua died. 17 months later after too many surgeries and procedures to count, her hair has returned thick and full of body. She looks great, has fought off cancer in 4 areas and possibly in remission with the 5th. She is a mother of two who inspires me to fight on through anything.

Ok, I'm not able to keep my mind free of Josh, so I walk to the front yard just and recognize another mom walking up the sidewalk. She is a favorite of my kids and even though we don't see each other much, remains adored. We learned just how long it had been since we really chatted when after I gave her the update on the girls' lives, she asked " how is Joshie?"

Wow, can it be she never knew? We've seen one another in passing, but never talked about it. I could feel the color leaving my face on that one. As I shared with her the news of losing Josh 17 months ago to SUDEP, I hear those sounds of pain as the news sets in; the tears and hysteria which accompany her fierce hugs as I share what happened between her apologies and sadness. For that moment I'm back to 17 months ago.

It's Mother's Day and I been reminded that my youngest is gone three times in an hour. This is more than chocolate, wine, crying or anything can help. I think it's time to avoid all outside human contact and thank God I didn't become a complete blubbering fool who melted into the sidewalk when I shared Joshua's loss once again.

Finally, I sit on the patio listening to the water from the fountain my daughters gave me last year. Such a reprieve. The perfect location to 'just be" on this day that most celebrate.

I'm sure it's not a coincidence that I've seen the moms I've seen today. I'm sure it's a reminder from God on this Hallmark Holiday that there is still so much to see and do yet.

I have shed some tears today, and likely will shed more, but they are tears of love and I have been so very blessed to have love in my life.

Happy Mother's Day!

Hugs,
Sherri

SUDEP-What I wish I had done differently

I just returned from cleaning up Joshua's grave. Two hours of wiping down marble, weeding, mulching and planting. The entire time tears were streaming as I went through my constant  "if only" questions.  Sigh, this has been such a long journey.... and yet.... it is only the beginning.
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It's a Boy!
In 1998, we were blessed with a sweet little baby boy who completed our family of 5.  He joined 2 older sisters and was a joy to us all.  Life went on beautifully for us and we were very content until the week before Christmas 2006, when we received a diagnosis of partial frontal lobe epilepsy with gelastic seizures following some "issues" Josh had begun to show in the weeks preceeding. 


What is going on?
Joshua would be fine one minute and then it was as though someone turned off his switch.  He would freeze in place for 10 seconds, the switch would be switched back on, he would give a little giggle, and he was back to normal.  At first, these giggle freezes would occur several times a day.  Anti-seizure medicine worked beautifully and for 19 months he was seizure free.  When he began to have the giggle seizures again it was following a growth spurt and an dosage adjustment kept us seizure free for several months.

We faithfully took him for his MRIs, EEGs, made sure he took his seizure meds, and awaited puberty.  We were told he was a marginal epileptic who would likely outgrow this when puberty set in, so Joshua spent the next 3 years checking for any telltale sign of puberty, and was thrilled when those first dark hairs began to appear.

We were very careful with Josh around water, didn't allow him to ski, and made him a great sideline football fan instead of player.   In fact, I remember laughing at his attempts to try to convince the doctor to let him play football.. Josh assured us he could play....no problem!  The doctor's answer remained a resounding NO.


Our first Gran Mal
In June 2009, shortly upon our return to the US, Joshua suffered his first gran mal seizure.  We were unprepared since the doctors had initially told us Josh would never have a full blown gran mal seizures.  It lasted 45 minutes, was absolutely terrifying to watch and resulted in an ambulance ride to the hospital as a precaution.  Josh was very cranky but had no memory of the episode.  A second grand mal struck the next morning but we were prepared this time and medicine stopped the seizure immediately.

Over the next several months life went back to "normal."  We visited our new Neurologist faithfully, had EEGs which continually showed no unusual brain activity.  We even completed a 48 hour "take home" version where the probes were attached to numerous areas of Joshua's scalp, and a "black box"  attached to a fanny pack around Joshua's waist recorded brain activity over the next 48 hours. It gets tricky because they wrap your head in gauze like brain surgery and you can't play for 48 hours.  Josh was such a good sport...we put a stocking hat on over his bulky gauzed head and off to visit friends he went. No big deal. That test also came back with inconclusive results.

Joshua's prognosis gradually changed as he began to show signs of possible epilepsy in the right side in addition to the left side of his brain, and our hopes of outgrowing it were becoming less of a reality.  Josh even began to talk about having brain surgery in the hopes of overcoming this terrible thing that ruled his world.   Still he kept his spirits up and continued to live life as a very happy outgoing kid. 


A strange week
The week before his death, Josh called us on his cell phone and asked us to come help him in his room just upstairs.  A strange request, but we ran upstairs to see what was wrong.  He  seemed to be having a strange seizure that somehow seemed to paralyze him yet allowed him to talk to us and call for help. We weren't even sure it was a seizure at first, but once we administered his meds, he came out of it instantly.  He recovered quickly, but we kept him home from school that Monday. By Tuesday, he was his normal self, and Thursday we were off to the lab to draw blood to check his anti epileptic med levels since we suspected it was time to adjust his dosages. As we had seen before, growth spurts were often the times when he would have an "episode" after months of stability.
The Friday before Thanksgiving he seemed extremely carefree and happy. He was a healthy laughing 12 year old boy who was goofing around with us just before bed and after bed time we know he  secretly texted his best friend past midnight.

He wanted to help me stain our backyard fence that Saturday morning so as I baked cinnamon rolls, tidied up the house a bit, I wondered where he was.  He was usually an early riser and it was nearly 9:00 am.   I went up to check on him and remember how odd it was to find his bedroom door was closed.  We always kept it open so we could hear him at night.

The moment I opened the door I knew instantly something was wrong.  There was a feeling in the air.  I went to Josh and found him face down unresponsive.  I must have let out a scream since both girls came running in as I rushed for a phone and dialed 911.  The 911 operator told me to perform CPR so I moved him to the floor. There was still some warmth to him so I suddenly had hope. I won't go into it but I know his airway was not impeded and suffocation was not the issue.  I remember performing  CPR begging God to not take him, while my older daughter stayed on the phone with 911 and my younger daughter went to the door for the EMTs' arrival. 

The paramedics arrived quickly and worked on him for however long it took me to run to my room to throw on a pair of jeans for the ambulance ride to the hospital.  As I ran back towards his room they met me in the hallway and uttered those dreaded words "we're sorry he's gone".  My world was changed forever.

In those early days, months and now year since I heard those words I have played in my mind thousands of times what I could have done differently.   Consultations with the neurologist and research has led me to realize Joshua died from SUDEP.  Sadly, he fits the profile of a  high percentage of SUDEP victims who were otherwise healthy epileptic boys between the ages of 12-15.    His seizures had been greatly controlled but he did have one within days of his death.


SUDEP does not have a cure.
Let me say now, there is no cure for SUDEP at this time.  In one medical case I read there were 15 hospitalized epileptics who suffered cardiac/respiratory arrest during seizure.  12 of the 15 died with trained medical personnel working to save them right there in the hospital.  3 of the 15 were revived but sustained devastating irreversible brain damage.

Those who have seen or experienced seizures can attest to how the brain must be absolutely going haywire.  Epileptics lose control, lose their bearings, and often suffer memory loss.  So it is understandable that the brain could mess up the signaling to the heart to keep beating,  and to the lungs to keep breathing.  However, many subject matter experts believe the neurons in the brain get crossed sending signals which lead to cardiac arrest/respiratory arrest and instant death.

There were signs of seizure when we found Joshua so we know he had seized. When it happened and for how long we don't know. What kind of seizure he experienced is also unknown as to our knowledge Josh only had 4 gran mal seizures during the entire time since his diagnosis.  He had been using multiple anti-epileptic medications (layering) to control his seizures, and had good results over the four years of living with epilepsy.

Yet in a heartbeat he was gone.

If only:

What I wish we would have done differently.....
1.  I wish I had been made aware by the doctors of the possibility of death outside of drowning,  or driving while seizing.  SUDEP was never even brought to our attention by any of the neurologists or other physicians.

2.  I wish I had been more proactive overall by insisting Josh get rid of that fan which made the baby monitor useless.  He would have cried and carried on but too bad.  sigh.

3.  I wish we had made someone sleep in his room with him or in our room on another bed every night. 

4.  I wish I had been more educated in the medicines used for epilepsy.  They are very strong medications and accepting the recommendation of a specialist should have led me to become more educated in epileptic medications.

5.  I wish I had taken it more seriously and realized it was more than a nuisance we hoped Josh would outgrow.

6. I wish I had been more adamant with the doctor that week.  We had been through this before and Pediatric Neurologists are very rare so most of my communication was done via emails which were responded to promptly even when the office phone was busy.

7.  I wish I had researched all help devices out there and outfitted our home, Joshua's bed room, and even Joshua with everything possible even if not fully tested yet.
Here's a website that can share more details on these devices and more.
http://www.dannydid.org/sudep/devices-technology/

8. I wish I had checked on him as soon as I woke up that morning as when he had the seizures they seemed to occur as he was waking up in the morning.  That Saturday morning, I just wanted to let him sleep in as he was a growing boy.

9.  I wish I had my son with me here and now.
All indicators and medical specialists I have spoken with share that when SUDEP appears there is not much we can do but I would like to have been given the chance to prove them wrong.

Several families have shared with me how your lives are impacted by epilepsy. Sadly, some of those stories are from those trying to live with life after SUDEP. It has been 16 months into our journey and it just felt like it was time that I shared our story and those things I wish someone had told me 5 1/2 years ago when Joshua was diagnosed with epilepsy. Please know this blog is my personal opinion only. There are many reputable resources on epilepsy available today for those of you facing epilepsy head on...and I suggest you keep educating yourselves. Here are three sites that I regularly turn to:

The National Epilepsy Foundation www.epilepsyfoundation.org which leads the fight to stop seizures, find a cure and overcome the challenges created by epilepsy. Our family initially planned to walk as 5 Newmans to raise money for research, no we walk in memory of one sweet and ornery boy to raise epilepsy awareness and research funds.

Danny Did Foundation www.dannydid.org which raises awareness of SUDEP, and raises money to provide seizure detection and prediction devices that may assist in preventing deaths caused by seizures. Danny Did Foundation is our partner in our upcoming Annual Joshua Newman 5K on November 24, 2012. Funds raised will provided seizure devices for those who are unable to buy them themselves.

SUDEP Awarewww.sudepaware.org is a not-for-profit organization, run by volunteers dedicated to raising awareness and understanding of Sudden Unexpected Death in Epilepsy (SUDEP), with the ultimate goal of finding its cause(s) and prevention.

50,000 epileptics will die this year
50,000 people die from epilepsy every year in unlimited circumstances but of those, 3,000-5,000 will die of SUDEP. It may seem like a small number but try telling that to the family that finds their child unresponsive on a normal unassuming Saturday morning in suburban life. If there is a way to prevent it, why not try?

I would say this if you are an epileptic, or know someone who is an epileptic. Live life to the fullest, educate yourself, and take your meds. I know they can be a real drag with ugly side effects for some of you, but keep trying. We changed medicines and adjusted dosages multiple times to find what worked best for us.

Epilepsy has brought me to places I could never imagine, including advocating for those living with epilepsy and more research.  This I do for my Joshie, my sweet and Ornery One!

Hugs,
Sherri