Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

Testing

Today is the last day of Joscelyn’s Blood Drive. Our deepest thanks go to everyone who donated, those who tried to donate but couldn’t and those who shared the blood drive info with others! The hospital told us it would be wise to reserve two units of blood  for Joscelyn’s upcoming hemispherectomy surgery and at last count, we have over 25! Many of you shared with me that Joss was already quite “famous” at the various Florida’s Blood Center locations you visited. We are comforted (and somewhat astounded!) to know that SO many people are praying for her and rooting for her as she begins the fight of her life!

Several of you have asked, “What happens next?”

The answer is testing.

Lots and lots of testing.

On Monday, July 2nd, Joscelyn will check into the Epilepsy Center for Kids at the Walt Disney World Pavilion at Florida Hospital for Children.to undergo extensive pre-surgery evaluation.  A child is normally referred to the Epilepsy Center for Kids’ Surgical Program when their seizures have been proven to be “intractable”, meaning that they do not respond to anti-seizure medications. This has been the case with Joscelyn. Her current anti-seizure medication will keep her seizures at bay for several days but then a breakthrough seizure like this will happen:

In Joscelyn’s case, she typically has “cluster seizures” meaning that she’ll have a seizure like this, and then another, and then another, over and over again in quick succession. Wednesday night, she just kept seizing and seizing until finally, I didn’t know what else to do and took her to the ER. We know that these epileptic seizures are the result of hemimegalencephaly (HME), a rare, severe congenital malformation of the brain. In Joscelyn’s case, the left side of her brain is damaged. Without treatment, the seizures that are being generated from the damaged side of her brain will greatly reduce the quality (and possibly duration) of her life and are likely leave her permanently disabled.

Since medication hasn’t proved helpful in eliminating her seizures, her doctors at the Epilepsy Center for Kids are recommending that she undergo a hemispherectomy and have at least the majority, if not the entire, damaged left side of her brain surgically removed and/or disconnected from the good right half. Not only should this stop (or at least greatly reduce) the number of seizures she’s having but it will also prevent the seizure activity originating from the left side of her brain to negatively impact the healthy right side of her brain. Once the left side is removed, the right side of her brain is eventually expected to take over the functions and responsibilities of the missing left side. (i.e. Motor, language, etc.)

It goes without saying that no one wants to rush into a procedure like this. Hemispherectomy is widely considered to be the most invasive surgical technique in use today. Before her doctors can consider operating, they want to be absolutely sure that the right side of her brain is undamaged and up to the task of fully compensating for the malformed left hemisphere once it has been removed.

So, beginning Monday, Joscelyn will undergo all or some of the following tests (plus possibly others): 

1) Video EEG recording: A painless test that records the electrical activity associated with seizures. Her doctors want to capture at least 3 seizures on video.

2) Single Photon Emission Computed Tomography or (SPECT): Ictal/interictal SPECT scans can show areas of increased brain activity (seizures) related to increased blood flow to these area(s).  These scans show a bright white or red flare, highlighting area(s) responsible for causing seizures.

3) Positron Emission Tomography (PET) Scan: A test that measures how the body uses blood sugar (glucose) within brain cells.  Blood sugar acts like food for our brain.  This test will help her doctors see chemical changes taking place in the brain and highlight areas in which seizures may be active. 

If everything goes well, Joscelyn will have a hemispherectomy performed on July 5th or 6th.

Please join us in praying that the doctors don’t find anything that would cause them to have to delay the surgery for ANY reason! The stress and anxiety of the last month has been so great, we are eager to put the surgery behind us and move on with her rehabilitation.

Joss was feeling pretty well yesterday despite the ER trip on Wednesday evening. She played happily and was even willing to  model an adorable hat that had been sent to us by Allie Machin of Cozi Bear Boutique.

I’ve never had the privilege of meeting Allie but she sent a lovely note along with several hats explaining that she had heard about Joscelyn’s upcoming surgery from a friend. How thoughtful of her to reach out to us! Thanks, Allie!

You can see some of Allie’s adorable offerings here: Cozi Bear Boutique

Since Joss was so happy, I took the opportunity to go to dinner with my dear friend Debbie and indulge in a little “me” time. It will likely be my last opportunity to do so for a while since we’re looking at spending anywhere from 2-6 weeks in the hospital and will then be very busy with various outpatient therapy appointments.

Chocolate fondue just makes everything better, don’t you think? 😉

Meanwhile the boys already have their suitcases packed to stay at Grandma’s house while we’re at the hospital. They’re just a tad bit excited! And who can blame them? Who wouldn’t want to stay with a Grandma who spoils you like this?

That’s all for now.

I will be updating you from the hospital with news of how her testing is proceeding and the exact date of the surgery.

Thank you so much for continuing to pray for our family and especially for our precious little girl!

 

 

 

 

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A Visitor From Heaven

As I recently wrote, we were absolutely astounded by the huge number and variety of adorable hats that our loving friends and family blessed us with at Joscelyn’s Hat Party on Saturday. When we left the event, we still had quite a few bags and boxes left to unwrap!

One of the packages I opened later at home was a wrapped shoebox. There was no card attached to the outside of it. “Who could this be from?”, I wondered aloud.

I unwrapped the box and inside, found a simple printed card with a picture of a butterfly.

I opened the card.

“You’ve Been Nicked!”, it read.

For those of you not yet familiar with the back story, when my 14 yr old son Nicholas was killed in an accident last November, some dear friends established a “kindness movement” in his honor. Since Nick always tried to make everyone around him feel good, we thought that a great way to honor his memory would be to have people write a handwritten note of appreciation to someone in their lives, a “Nick Note”, which would tell the lucky recipient exactly why they were liked, appreciated or loved.

Since Nick passed away over Thanksgiving weekend, many friends took the opportunity to print out blank Nick Notes from our website and use them on their holiday packages in lieu of traditional gift tags. My guess is that, in many cases, these Nick Notes were cherished more than whatever was inside the box they adorned! Recipients of these special notes were often told by the giver, “You’ve Been Nicked!” 🙂

You can get your own blank Nick Notes to give away here: http://nicknotes.org/

(Just click on “Blank Nick Note” in the top left corner.)

The note inside Joscelyn’s package continued,

“I love you Joscelyn, because you’re my sister. I could nay be with you this day but I am never far away. I’m sending along another angel. With you she’ll stay.

Date: June 23rd, 2012  From: Heaven (with a little help from a friend)”

Also inside the box, was a beautiful purple butterfly sundress and matching hat.

And this lovely angel wearing a matching dress:

I just love her sweet face! 🙂

(Needless to say, it’s a really good thing that I didn’t open this package while at the party. I shed more than a few tears when I read the card and saw what was inside!)

I don’t know who gave me this gift. They chose to remain anonymous and simply signed the card, “Made especially for you by one who hopes it brings a smile to your face and a chuckle to your heart.”

And through all of the tears, I DID smile! Our little girl was given a very special visitor “all the way from Heaven” to stay with her while she’s in the hospital!

Her brother Nick was a very special visitor from Heaven, too.

After the death of a friend’s infant daughter, singer Twila Paris wrote a beautiful song called, “A Visitor From Heaven”.

You can listen to it here: http://www.youtube.com/watch?v=EginYNcQvnE

The lyrics are:

“A visitor from Heaven,
If only for a while,
A gift of love to be returned,
We think of you and smile.
A visitor from Heaven,
Accompanied by grace,
Reminding of a better love
And of a better place.
With aching hearts and empty arms,
We send you with a name.
It hurts so much to let you go!
But we’re so glad you came!
We’re so glad you came!
A visitor from Heaven,
If only for a day,
We thank Him for the time He gave
And now it’s time to say,
We trust you to the Father’s love
And to His tender care;
Held in the everlasting arms
And we’re so glad you’re there!
We’re so glad you’re there!
With breaking hearts and open hands,
We send you with a name.
It hurts so much to let you go!
But we’re so glad you came!
We’re so glad you came!”

Though it will never feel like enough time, we are so grateful to have had Nicholas here with us for 14 wonderful years! His loving heart and contagious smile lives on through the Nick Note movement and through inspired acts of care and compassion like the giving of this beautiful angel and card.



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Joscelyn’s Hat Party

Several weeks ago, on a prompt from a fellow hemi-mom, I started shopping for a variety of hats for Joscelyn to wear after her hemispherectomy surgery. These hats would both protect her still-healing scar from the hot Florida sun and hopefully, also minimize the number of questions we received from strangers about her appearance. A friend on Facebook came up with the lovely and thoughtful idea of throwing a “Hat Party” for our little warrior princess. Guests were invited to bring a cute hat for her to wear and to bring a potluck dish for everyone to share.

What a turnout! I don’t think I’ve ever seen so many different hats in one place in all my life! There were cotton ones, knit ones, cute ones, sporty ones, girly ones, ones that had been handmade just THAT MORNING! (Oh, ot have that kind of talent!) We were so touched by everyone’s generosity!

The guests attended the party in some pretty nifty hats of their own!

 

Naturally, Joss had to try on some of her hats, too!

After playing some fun games, it was time to eat! Because really, when you find yourself under the sort of incredibly stressful circumstances we find ourselves under right now, the best advice is just to:

So we did! Yummy Hat Cupcakes made by our good friend Janette at Doodlebugs Cupcakes! Aren’t they cute?

Another friend also made this gorgeous hat-inspired cake!

Joscelyn was all smiles and really seemed to enjoy all of the fuss over her! This party was a stark contrast to her first birthday party a few weeks ago where she was lethargic and fussy after having suffered several seizures that morning. It was such a joy for us to see how happy and social she was being! Here she is with her loving daddy and doting Grandma:

It’s difficult for me to express how grateful we are to have had this special time with family and friends! There has been such heaviness in our lives the last several months and this was such a fun, happy time. It felt so good to just laugh and have fun with so many of the wonderful people who are supporting and loving us through this difficult time.

This is me (L) smiling and laughing with my sweet friend Debbie who coordinated the event and my dear friend Katie (R) who, along with her amazing husband Gary, provided the venue and games for the party at the martial arts studio where my boys attend.

Aside from being blessed in a practical way with so many adorable hats, we were comforted to know that our precious little girl will soon face what many consider to be the the most invasive surgical operation in use today, blanketed in prayer from not just her family, friends and community but from people all over the world as well!

Love was definitely the theme of the day! 

One of my favorite moments at the party was when my talented friend Mariah’s 1 yr old daughter caught a glimpse of herself in the wall mirror. She squealed with delight and began kissing her own reflection!

This is how I want my daughter to feel about herself! Whether the surgery leaves her with permanent “differences” or she grows up with no lasting effects from it whatsoever (Miracles still happen!), when she looks in the mirror, I want her to squeal with delight at the girl she sees reflected there. I want her to feel like James Brown when he sang, “Sometimes I feel so nice, good Lord! I jump back, I wanna kiss myself!” 🙂

Of all the pictures taken that day, this photo taken by my sweet friend Stephanie is the most precious to me:

In it, Joss’ eyes are directed heavenward. Her face reflects perfect peace, perfect trust and total contentment.

“All will be well, my sweet child”, a voice seems to be telling her.

“All will be well.”

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The Story of Joscelyn

My husband Michael is a geek.

 I’m not being mean when I say that. He’s actually a self-proclaimed geek and rather proud of the fact. Actually, he claims that I’m a geek too, just because my degree is in Internet Marketing and I know a few odd Star Wars trivia facts; and because I caught the reference to Captain Jonathan Archer‘s dog in the newest Star Trek film, and because we met at a Renaissance Faire…Ok, so maybe he has a point 🙂 but I still say he’s a MUCH bigger geek than I am!  He’s a computer programmer AND plays online games AND reads books about String Theory… just for fun!

Anyway, when we found out that I was expecting with Joscelyn, we did what most parents do and we bought a baby book in which to record memories and milestones. I guess maybe it was just a little different than the traditional baby book, since it was written by (and for) geeks. It’s called “The Story of You as Told by Nerds” by Tiffany Ard.

(Let me stop for a moment here because I’ve just introduced the term “nerd” whereas before I was speaking of “geeks” and some of you might be thinking, “What’s the difference?” or even, “Is there a difference?” or possibly, “Wow, How much crazier can this woman get?”, all of which are completely legitimate questions. This infographic helps to shed a bit of light on some of the subtle variances, as does this Venn Diagram, but for simplicity’s sake, I’m just going to use the terms “geek” and “nerd” interchangeably here.)

“The Story of You as Told by Nerds” is just like your average baby book in that there’s space to record all the typical baby milestones: first smile, first food, first tooth but it’s also filled with adorable scientific drawings and quotes and includes space to record baby’s “first experiment with gravity” (aka walking), first programming language, etc.

One page, entitled “Methodology” prompts parents to explain how their child came to be. “Families can be formed in many different ways”, it says. “You joined our family thanks to:

A) The Old-Timey Way

B) The Miracle of Modern Medicine

C) Adoption

D) We Constructed You Using Items From Around the Lab

E) It’s Complicated

F) We Found You in a Surplus Catalog”

In retrospect, options B, D and E seemed absolutely hilarious at the time but are now rather eerily accurate!

We bought several other geeky baby items in anticipation of Joss’ birth. A maternity shirt, a set of blocks, an ABC book and this onesie:

 all because we believed that our perfect baby daughter was destined to be a brainiac just like her daddy.

Joscelyn was born in May of 2011. I faithfully recorded the details of her baby shower in her baby book along with a few other facts but then the unimaginable happened and we lost Nick when she was only 6 months old. Her baby book sat gathering dust for months. I wasn’t really paying attention to when she got her first tooth or when she took her first bite of solid food. Much of that period is shrouded in a fog of intense grief and my memories of those important “firsts” are lost forever in the thick of it. 

I realized this morning that I didn’t even know where her baby book was anymore.

I don’t know what prompted me to go in search of it today. Maybe I wanted to reclaim, if only for a moment, the excitement and joy that I felt when we first purchased it and had so many hopes for our little girl. We still have hopes for her of course, but they’re less audacious now, less grandiose. I believe in miracles and I know that our little girl might still grow to be the next Marie Curie and develop a cure for cancer- but really, my greatest hope now is that one day I’ll be able to hear her say, “I love you, Mommy!”

All of the standard milestones that most parents take for granted and dutifully jot into baby books will be minor miracles for us. First steps? Amazing! First words? SO precious! We will hold our breath awaiting those moments and when they come (Dear Lord, let them come!) we will rejoice with each and every one of you who are walking with us on this journey.

As I was flipping through Joss’ baby book today, I came across this quote from Robert L. Park:

“The greatest discoveries of science have always been those that forced us to rethink our beliefs about the universe and our place in it.” We are doing some heavy-duty rethinking of our beliefs these days, quite a bit of which revolves around Joscelyn’s place in the universe. Every parent has hopes and dreams for their children. We naturally want them to love the things that we loved as a child. We want to shape them and mold them into mini-versions of ourselves or maybe mini-versions of who we always wanted to be.

But what if God has a different plan for them? A different place in the universe than the one that we imagined? As Jon Gordon says, “I don’t want my children to be what I want them to be. I want them to become everything God created them to be.”

If you look up the word “geek” on Wikipedia (which is, in itself, a pretty geeky thing to do) you’ll find that the word the word geek is a slang term for odd or non-mainstream people, with different connotations ranging from “a computer expert or enthusiast” to “a person heavily interested in a hobby”. It can be used in a pejorative sense but many consider it a compliment.

“Odd or non-mainstream”? That’s going to be our daughter in a nutshell! The thing is, with us as parents, Joscelyn never stood a chance of being “normal”. The fact that she will have half of her brain missing will likely be the least odd thing about her 😉

We wanted her to be a “geek”, not in the “brilliant but socially awkward” sense but to love to read, to investigate and to be curious about the world around her. (If she had to model herself after a Disney princess, we were rooting for Belle from Beauty and the Beast.) We wanted her to thirst for knowledge, to value the wisdom of those who had gone before her but to also boldly imagine new possibilities. We wanted her to feel comfortable embracing the math and science careers that are typically shunned by girls because our society discourages them from pursuing them. Maybe she would take to those subjects and maybe she wouldn’t, but if she didn’t, it wouldn’t be because they were “too hard” for her.

We didn’t want her to feel like anything was too hard for her.

Now, it seems that even the simplest of things will be incredibly difficult for her.

I believe that God has a plan for our little girl. For sure, she is going to inspire a lot of people! And once you’ve spent your entire childhood having to work so hard for every little thing that comes so easily to others, you probably don’t know how to approach life with anything less than your all. Maybe hard work and creative problem-solving will just be so second nature to her that it’ll never occur to her that she “can’t” do something.

Maybe this condition is the key to her becoming everything that God created her to be.

“We must be willing to let go of the life we have planned, so as to accept the life that is waiting for us.” said Joseph Campbell. And as parents, we must be willing to let go of the life we have planned for our children so as to help them accept the life that God has waiting for them.

I plan on bringing her baby book with me to the hospital. During the 8-14 hours she’s in surgery, I plan to paste photos and answer questions like, “What was the Feature Story in Scientific American on the Day of Your Birth?”. I’ll try to catch up on filling in as many details as I can remember.

And I’ll look at those blank spaces where I would have normally logged her first time crawling and first steps and instead of feeling sad at what I think we have lost, I’ll try to remember that the book in my hands only chronicles her story “as written by nerds”.

What matters most is the beautiful story being written by God.

And I can’t wait to read the next chapter. 


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The Lucky Fin

Yesterday, the kids and I visited Animal Kingdom at Walt Disney World.

As a Florida native, I’m well aware that summer is one of the worst times to go to Disney. It’s hot, the parks are crowded and the lines are long, but I also know that Joscelyn is going to be getting the lion’s share of my attention over the next few months (no pun intended) as she recovers from her hemispherectomy surgery, so I wanted to fuss over the boys a little and give them some good summer memories while I had the chance.

Our morning started with me posting this pic of Joss on my Facebook page:

The caption read,

“Announcer: ‘Joscelyn, You’ve just discovered that you have to have half of your brain removed. What are you going to do?’

Joscelyn: ‘I’m goin’ to Disney World!'”

If we can’t laugh, we’ll just go crazy, right? 😉

Animal Kingdom turned out to be a great choice of parks! Joscelyn’s anti-seizure meds make her susceptible to heatstroke but we found lots of shady spots in which to rest and there were several shows in air-conditioned theaters for us to enjoy in between the rides. Even the crowds weren’t too bad!

We also learned one of the BEST Disney “insider” tips EVER!

The boys were really looking forward to riding Expedition Everest, a really popular roller coaster. In years past, if I was unable to ride on an attraction with the kids (which happened quite often since I was frequently expecting or subsequently caring for a young child too short to ride) I’d just wait in line with the other kids, duck out right before they got on the ride and wait for them where they exited. For whatever reason, this wasn’t an option at Expedition Everest and there was no way I was going to let my 9 and 10 year old stand in line for 50 minutes without me. The ride attendant suggested, “Why don’t you try the single rider line around the corner? The wait is shorter there.”

Shorter? Try non-existent! Instead of waiting 50 minutes, the boys walked right on! They couldn’t sit together but they were only a few seats apart. I met them at the exit and was immediately greeted with, “CAN WE GO ON AGAIN?” Which, of course, they did! 🙂

I’m not sure how many of the coasters offer this option but it’s definitely worth inquiring about!

Another great tip we received was to go on the Kilimanjaro Safari first. The animals are more active in the (relative) cool of the morning and we were able to see hippos, giraffes, gazelles, lionesses, rhinos, elephants, and a host of other animals on the ride. Animal Kingdom is full of educational opportunities, including some special “Kids’ Discovery Club” areas where kids can pet, handle and discover more about wildlife.

Joscelyn was fascinated by everything and kept craning her neck so she could look at all of the sights, sounds and activity.

She especially loved “Finding Nemo: The Musical”. Aside from the great music and fabulous special effects, the performers carried HUGE puppets on large poles and danced among the audience members. Joss spent most of the performance with her left arm outstretched in the direction of the stage and her hand opening and closing as if to say, “GIMME!” 🙂

I always liked the movie “Finding Nemo” but I find that I relate to the characters in some very special ways now.

For those of you who haven’t yet seen the film (which I highly recommend doing even if you have to borrow some one else’s small child to feel good about doing so), it begins with a happy pair of expectant clownfish parents surveying their new home in the ocean. They cuddle sweetly, speak of exciting future plans and pick out names for their babies. Sadly, tragedy strikes in the form of a barracuda and all of their children are struck down with the exception of one. Nemo survives but he is born with a badly damaged fin which he and his father Marlin refer to as his “lucky fin”. Marlin coddles and babies Nemo as he grows, always fearful that something terrible will happen to him as it did his other children. Eventually, father and son are driven apart by Marlin’s lack of confidence in Nemo’s abilities and by his own reluctance to let go.

I fear that Marlin and I have a lot in common.

Nick’s death last fall was completely unexpected and traumatic. I had no idea when I hugged and kissed my sweet child goodbye on the evening of November 26, 2011 that I would never see him again. Later, in counseling, one of the main topics of conversation would be my anxiety that something would happen to one of my other children. Meanwhile (unbeknownst to me at the time) my children were drawing pictures in their counseling sessions of their deepest fear: that something would happen to me.

The malformation in the left hemisphere of Joscelyn’s brain is already affecting her mobility. She never uses her right hand for anything. It’s like it doesn’t exist to her. At 12 months of age, she isn’t crawling, isn’t pulling herself up to stand and isn’t walking. The crookedness of her smile is even becoming more pronounced as the months progress, something we’re beginning to attribute to weakness in the muscles of the right side of her face.

After surgery, she will be effectively paralyzed on the entire right side of her body. The many therapies she will be receiving post-surgery are designed to awaken her senses to the knowledge that she has a right arm, right leg and right hand. Once she becomes aware of them, she will spend the rest of her life building and strengthening her controlled use of them.

She’s going to have some “lucky fins”.

And I’m going to have to overcome some deeply seated phobias.

I won’t spoil the end of “Finding Nemo” for you and tell you what happens to Marlin and Nemo but I will tell you that it’s going to be a movie we plan to play over and over again for our little girl.

I want to be Joss’ biggest cheerleader. I want her to look into my eyes and see reflected there, the image of a strong, capable young woman ready to take on the world. I don’t want her to misunderstand my fear or mistake my reluctance to let her go as a lack of faith in her ability. It’s just fear. Unreasonable…and yet in light of what has happened, perfectly understandable fear.

Lord, let me be strong for my daughter’s sake! Help me to quiet the tormenting thoughts that would cause me to hold her back from achieving her full potential! Give me the strength to bravely paste an encouraging smile on my face when she wants to move beyond her comfort zone (and mine) into the deep of life, when every fiber of my being wants desperately to keep her in the shallow end where I know she’ll be safe. Never allow my enormous love for her and desire to protect her become a wedge that drives us apart.

I Googled “lucky fin” earlier in hopes of finding a YouTube clip from the movie to share with you. I couldn’t find the scene but in true “It’s a Small World After All” fashion, I did find another mother who has also embraced the concept of the “lucky fin” for her daughter.

The Lucky Fin Project is a nonprofit organization that exists to raise awareness and celebrate children and individuals born with symbrachydactyly or other limb differences. I’ll be ordering Joscelyn one of the small bracelets they sell to wear when she’s a bit older. Lucky Fin Project founder Molly Stapelman says, “I believe everybody is different. Some people’s differences are on the outside and easier to see than the differences others have on the inside.”

This is a valuable lesson I hope to teach Joscelyn. None of us are perfect. We’re all wounded. Those who would mock her for her differences are maybe the most wounded of all.

Our daughter is going to grow up with huge amounts of  love, acceptance and encouragement. And that’s lucky, indeed.

As a reminder, Today is Day 2 of Joscelyn’s Blood Drive. You can read more about how to donate here: Blood Drive Info

We’re also excitedly anticipating the Hat Party that our loving friends in the community are hosting! Please join us if you can! Hat Party Info

In the meantime, we’re going to follow the wise words of my favorite character in Finding Nemo, a little blue tang fish with short-term memory loss named Dory:

“Just keep swimming.”

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Meet Joscelyn’s brothers!

Many of you have thoughtfully inquired as to how Joscelyn’s brothers are holding up in the aftermath of not only their brother Nicholas‘ unexpected death in November but also of their baby sister’s recent diagnosis of hemimegalencephaly and scheduled hemispherectomy procedure.

I am pleased to say that they actually seem to be doing quite well!

Marc is 21 and finishing a summer trip to Brazil. He’ll be continuing school in the fall and will also be returning to his job as a pharmacy tech. He’ll be home in time for Joscelyn’s surgery and is eager to help out around the house during our extended hospital stay.

Image

My son Marc and his beautiful girlfriend Carol in Brazil.

Clayton (10) and Jackson (9) still miss their beloved brother Nick terribly but seem to have found joy again; not only in life but in happy memories of their brother as well. They speak of Nick easily and often, a habit that I think speaks well of how far they’ve come in their grief recovery. They both went through counseling after the accident and had the privilege of attending a bereavement camp in April for children who have lost loved ones. I plan to also have them join a local support group for bereaved children sponsored by New Hope for Kids, a wonderful organization that supports children and families grieving the death of a loved one.

I remember reading a story in the early weeks after Nick’s accident of a mother who, after her child died, became extremely withdrawn. Months went by but no amount of coaxing or persuasion from anyone was able to shake her from the grip of her grief. Finally, one of her surviving children said to her, “You know, it’s bad enough that I lost my brother but what hurts even more is losing you, too.” Those words were enough to help her find the will to live again and they serve a wise warning to me not to let my own grief keep me from trying to be be the same mother to my children that I would have been had Nicholas lived.

My heart still cries and longs to be with my son. It always will. 

But Nick doesn’t need me anymore. Though I still want desperately want to mother him, he has no need of a mother anymore.

Marc, Clayton, Jackson and Joscelyn do.

So every day, sometimes moment by moment,  I make a choice to invest my emotional energy into my surviving children; ever remembering and honoring Nick- but trying desperately not to focus so much on the one who isn’t here that I neglect the ones who are.

It’s a challenge.

And now, in addition to not appearing to favor my deceased child, I have to figure out a way to provide intensive post-surgery therapy, rehabilitation and stimulation to Joscelyn without ignoring or neglecting the needs of Marc, Clayton and Jackson.

In all honesty, I have no idea how on earth I’m going to do that.

Yet.

But I guess I’ll figure it out.

Thankfully, I don’t have to figure it out alone. I have the assistance of groups such as the Sibling Support Project, which provides support to the over over six million brothers and sisters of people with special health, mental health, and developmental needs. I’m sure there are others. (Feel free to recommend any books or resources! I appreciate any and all advice from those of you who have walked this path before me.)

Some studies even indicate that the boys may actually benefit from this experience!

According to the University of Michigan Health System, kids who who grow up with a sibling with special health or developmental needs often develop many good qualities, including:

  • patience
  • kindness and supportiveness
  • acceptance of differences
  • compassion and helpfulness
  • empathy for others and insight into coping with challenges
  • dependability and loyalty that may come from standing up for their brother or sister.

I see many of these qualities in my children already. They’re worried about their baby sister and feel terrible that she has to to through the surgery but they also believe, as do we, that she will come through it better and more capable than she is now. They’ve witnessed firsthand the suffering her seizures cause her and they want to see her freed from them as soon as possible.

(Plus, Michael has been entertaining and comforting them with made-up stories of a young superhero called the “Bionic Baby”: an toddler outfitted with robotic arms and legs and laser beams that shoot from her eyes!)

We have about 3 more weeks until the surgery. The kids are out of school. Joss’ anti-seizure meds seem to doing their job (for the moment anyway) so we’ve decided to keep ourselves busy and just try to have fun while we wait.

Today, we took the boys to DeLeon Springs State Park. In addition to the beautiful springs, there’s a fantastic pancake restaurant housed in an old sugar mill at the park where the kids can cook their own pancakes. We went with some dear friends and had a wonderful time!

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That’s Clayton with the spoon hanging from his nose 🙂

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Jackson is on the left. In the middle is Nick’s best friend Ryder, the son of my heart. Clayton is on the right.

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And here’s Michael and Joss, enjoying a little sun & fun. (We had to be careful not to let her get overheated since the medication she’s on can contribute to heatstroke.)

Next week, the boys start Vacation Bible School. We’re hoping to squeeze in a trip to Disney and a few other fun activities, too.

A couple of quick reminders: Joss’ Hat Party is next Saturday! And please don’t forget the Blood Drive which begins Monday and runs through June 29th!

We love each and every one of you and are SO grateful to you for your continued love, prayers and support! We couldn’t do this without you!

Thank you!

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Blood Drive for Joscelyn

As many of you know, Joscelyn’s hemispherectomy is scheduled for the first week in July.

We have set up a special blood donation account for her at Florida‘s Blood Center.

If you would like to donate blood for Joscelyn, please visit any Florida’s Blood Centers location between Monday, June 18th and Friday, June 29th. (This window is very important.) Her blood type is A+, so anyone 16 years of age and older who is A+, A-, O+ or O- can donate.  Please identify yourself as a designated donor for Joscelyn Dempsey and give them her ID number, which  is 2108462.

Of course, even if you are not a match, donating blood is always a wonderful act of giving that will benefit someone! (Perhaps someone else’s baby!)

To locate a blood center near you, visit http://floridasbloodcenters.org/fbc-locations/viewLocations.stml.

Please share this post with anyone you know who might be willing to give the gift of life.

Thank you so much for your donation of blood and for your many prayers for our precious little girl!

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Underdog

Underdog:  noun \ˈən-dər-ˌdog\

1 : a loser or predicted loser in a struggle or contest
2 : a victim of injustice or persecution
It occurred to me last evening that my daughter is going to live the rest of her life as an “underdog”.

Naturally, those of us who know what our hemi super kids are capable of don’t see them this way, as “potential losers in any struggle or contest”. We know the resiliency of the human body and more importantly, of the human spirit and of indomitable will;  but for the rest of the world, (the world that I belonged to just a few weeks ago before Joscelyn’s diagnosis) a person with half of a brain would be expected to be severely limited in every way.

I mean, What Can You Do With Half a Brain?, right?

Joscelyn will, no doubt, as so many other hemi-kids are doing, spend the rest of her life defying those limited expectations of her, but they will exist nonetheless.

When my eldest son Marc (now 21) was growing up and had moved past the Veggie Tales stage and into more “adult” music, one of his favorite songs was a song called “Underdog” by the band Audio Adrenaline.
A preacher in the song quotes:
“Underdog. I wince every time I say the word, especially in connection with Jesus. Yet, as I read the birth story about Jesus, I cannot help but conclude that although the world may be tilted toward the rich and the powerful, God, Hallelujah, in His mercy, is tilted toward the underdog!”
Are God’s eyes tilted toward our little underdog?
Most assuredly.
“I’m in last place, if I place at all”, the song says, “but there’s hope for this underdog!”
And God’s eyes aren’t the only one tilted toward the underdog.
Social psychologists have studied a phenomenon known as the “Underdog Effect” for years. Apparently, it’s human nature for us to “root for the little guy”.  Allison et. al (2008) defined this effect as “the people’s tendency to support or root for an entity that is perceived as attempting to accomplish a difficult task and is not expected to succeed against an advantaged opponent”.*
You can see the “underdog effect” in politics and in sportsBusinesses brand themselves to capitalize on it. Hollywood blockbusters are filmed because of it.
Why do we love an underdog so much? Because we’ve all been underestimated at one time or another. We all know what it feels like to feel inadequate and weak. When we see someone at an extreme disadvantage as compared to the competition, we see ourselves.
If they can win, maybe, just maybe, so can we.
Last week, a beautiful and inspiring video circulated across the Internet. In it, a little boy named Matt with spastic cerebral palsy attempts to run a race during a school field day event. Matt’s classmates easily run the race and then go off to play while Matt struggles to finish. Soon, his coach begins to run alongside of him to encourage him, then a student joins in and then something amazing happens:
Class Cheers On Boy With Special Needs
Will there be times when Joscelyn suffers as the second definition of underdog above, as a victim of injustice or persecution? Perhaps.
More often, I’m hoping that, like Matt, she’ll benefit from the “underdog effect”.  She may be underestimated by many people at first; but we will make sure that she sees herself as free of any limitations other than the ones she chooses to impose upon herself.
Our little girl may never be the strongest or the fastest (then again, maybe she will!) but either way, she doesn’t have to rely on her own strength. Like Matt, she can borrow from the strength of others. 
She also has a source of strength that will never fail her.
“I’m in this race to win a prize”, Audio Adrenaline sings. “The odds against me. The world has plans for my demise, but what they don’t see, is that a winner is not judged by his small size but by the substitute he picks to run the race-
and mine’s already won.”
Let’s hear it for the underdog!

*http://psychbits.com/why-do-we-like-underdogs/

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Too Soon

Every day that passes brings us one day closer to Joscelyn’s hemispherectomy surgery.

I’m grateful for modern medicine, grateful to Dr. Benjamin Carson for pioneering this procedure and giving our daughter hope for a normal life, grateful for the success stories that other hemi-parents have shared with me about how their children are thriving post-surgery.

I know that this procedure, as drastic as it is, is the best thing for Joss- and I’m eager to have it over with and to get her started on the long road to recovery…

but I’m also dreading it.

We’re told that the surgery will take 8-14 hours. The doctors have promised to give us regular updates, and my wonderfully supportive Mother-in-Love will be there to give us breaks so we can grab a bite to eat, walk outside, visit the Chapel or try to nap.

In my head, I know that we’ll get through the surgery just fine.

But I can’t help but think that it’s just too soon;

It’s too soon to be there again, sitting helpless in a hospital waiting room, anticipating word of my child’s fate.

It’s too soon since I last did this;

Too soon since the nurses and the orderlies with their blue scrubs and fake smiles escorted me back into a tiny room smelling of antiseptic and the fear of hundreds of parents before me;

Too soon to be trapped there again as I was just six months ago,

when the seconds turned into minutes and the minutes felt like hours until finally,

finally,

the doctor came in and with face grave and voice heavy with resignation, issued his practiced apology and assured me that though they had done all that they could do, they were sorry,

so terribly sorry,

but my son was dead.

It’s too soon.

Never again would be too soon.

But it doesn’t matter. The surgery WILL take place in a matter of weeks and of course, I WILL be there for my little girl because I cannot be anywhere else.

This morning, a fellow hemi-mama from California sent me this link:

Julie and her husband took the time to film it specifically for the benefit of newly diagnosed families such as ours. It was shot at one of the “Family Reunions” that take place every year courtesy of the Hemispherectomy Foundation. At these reunions, parents who have chosen the hemispherectomy procedure for their children can meet, compare notes, let their children meet other hemi-kids just like them and at least for a time, not feel so different from everyone else in the world.

I’m still scared.

But at least I know I’m not alone.

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Blanketed in Love

In the mail today was the sweetest and most precious gift for Joscelyn!

It was a beautiful “Comfort Quilt” made by members of the West Greenway Bible Church. On the label is a reference to II Cor 1: 3-5:

“Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ.”

The quilt was sent to us by a dear friend who has taught me much about mothering over the years. Becky is an amazing mother of 8 blessings and each of her children is as kind, considerate, compassionate. loving and generous as their sweet mother. Becky once told me that as a “mom of many”, she was sometimes asked if she had a favorite child.

“Of course”, she would reply. “My favorite child is whichever one needs me the most.”

I witnessed this principle in action when one of her grown daughters who lived in a another state broke her ankle. Becky flew across the country to stay with her while it healed. Her teenagers held down the fort at home, secure in the knowledge that when they needed her, she would be at their side in their hour of need as well.

Becky’s choice of gift spoke beautifully of her mothering heart. The card reads, “This quilt will keep you cozy, safe, loved and always covered in God’s precious word.”

Bordered in a happy purple and yellow fabric, the quilt’s blocks are adorned with sparkling, colorful butterflies, dragonflies and fireflies.

Alternating blocks are printed with scriptures and sweet promises such as “May you sleep under a blanket of prayers of blessings, flowers of life, hearts of love and songs of joy.”

Our sweet little girl has some great challenges ahead of her but she is literally and figuratively blanketed in love and prayers from people all over the world!

And for that, she is richly blessed.

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