Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

Don’t Be Late For Your Life

on July 25, 2012

Our departure from Florida Hospital for Children is imminent!
After 22 emotion-filled days and 23 mostly sleepless and lonely nights, we are finally going home!

As happy as this prospect makes me, I’ll confess that I also feel a bit of hesitation and anxiety.

My daughter is coming home after having had two radical brain surgeries and a shunt placement procedure.
For weeks, she’s had a staff of highly trained professionals tending to her needs round the clock and monitoring her closely for any signs of post-surgical complications.
Once we take our still very fragile baby girl home, will we be able to recognize all of the danger signs of possible infection, shunt malfunction or other concerns?

We will also have to be very vigilant to look for any sign of seizure activity. Dr. B says he holds his breath for the first six months after hemispherectomy waiting to see whether or not the seizures return. Joss will stay on her anti-seizure medication for the next six months as a precaution while her brain heals. If she remains seizure-free for that period, the surgery is considered to have been successful and we can wean her from the medication.

And what happens if she does have another seizure?
The cycle begins again:
Seizure monitoring to identify the seizure focus, likely followed by more surgery, then more waiting and collective breath-holding.

I sometimes catch  myself wanting to “fast-forward” through the next few weeks and months, even years sometimes; to skip ahead to the part in my life story when we’re finally “settled”, Joss is doing well and everything is more or less going according to (my) plan.

I can finally relax and be happy then, right?

I think it must be human nature to delay or postpone our happiness like that.

When we’re kids, we say,  “I’ll be happy when I’m a teenager”;
then, “I’ll be happy when I’m in college”,
then,

“When I’m established in my career”,

“Married”

“Pregnant”

“Retired”.

We always think we’re going to be happier at some point in the future.

The fact is, if we (I) don’t appreciate happiness right NOW, right in the midst of the chaos, messiness and unanswered questions of life, then the anxiety, depression and discontent that we (I) seem to be always struggling against will just continue to crowd it out.

As singer Mary Chapin Carpenter says,

“A change of scene would sure be great/The thought is nice to contemplate/But the question begs, why would you wait/
and be late for your life?”

I don’t want to be late for my life.

I don’t want to look back one day and realize that I missed the best parts of my journey because I was too focused on the future to feel myself living in the present.

Yes, I have plenty of reasons to feel stressed and anxious-

but for how long should I put off allowing myself to be happy?

Until Joscelyn is past the six-month mark?

There go the holidays this year!

Until I stop missing Nick so much?

There goes the rest of my life!

No, it’s obvious that instead of waiting until  conditions are perfect, my only real chance at happiness lies in celebrating the moments of beauty, humor and frivolity that still regularly occur on a daily basis, even in the midst of my grief and anxiety and in the face of an uncertain future.

My husband Michael and I joke a lot. We often use humor as a coping mechanism and sometimes as an emotional defense mechanism, too.

Michael recently started sporting an awesome mustache. He waxes the ends of it into old-fashioned, rather attention-getting curls. One day, on our way home from one of Joscelyn’s nerve-wracking doctor visits, we stopped at a drive-thru for lunch. When we pulled up to the window, the woman working there took one look at my husband, smiled broadly and proclaimed, “You look just like the man on the Pringles can!”

Can you see the resemblance? 🙂

From that point forward, I started referring to Michael as “Pringleman”.

A moment of levity in the midst of crisis…
So needed! So sanity-saving!

Later, a new Facebook friend heard me refer to Michael’s distinctive ‘stache and thoughtfully sent us a pacifier for Joscelyn called a “Mustachifier”:

How can you not laugh at the sight of “Pringleman” and his “Pringlebaby”?

Joscelyn (like all children) inherently seems to know how to live for the joy of the moment.

She undergoes radical brain surgery, comes out of sedation and does this:

Smiles.

One week later, a second surgery.


Yep. Still smiling.

A week and a half later, another surgery to install a shunt to divert the excess cerebrospinal fluid from her skull to her belly cavity. She looks and feels pretty beat up but still, somehow, finds a reason to smile:

Babies don’t fake smiles like grown-ups do. Joss is actually happy here! Despite having been removed from the safety and security of her home, despite having been poked, prodded and sutured, despite the fear she feels whenever someone in scrubs or a white coat enters her room, our little girl always finds her smile again.

Our brave little warrior princess is teaching us to find our smile again, too.

On the morning of her shunt surgery, I snapped this picture of her, ready to do battle with the hydrocephalus monster and wearing that same big, brave, lopsided grin.


“Once More Into the Fray!”, was the caption.

We may be heading home but our battle isn’t over by a long shot.

We still have to get our little girl walking and talking and comfortable using her right arm, leg and hand.
It could take years.
The battle will be long and at times, we may feel discouraged but like our brave little warrior princess, we will make the most of every opportunity to smile.

Because life, my life and yours, is happening now.

I don’t want to be late for it.

Do you?

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27 responses to “Don’t Be Late For Your Life

  1. Andrea says:

    Dear Jennifer,

    Your post today reminded me of one of my favorite quotes, which I share with you here:

    “For a long time it had seemed to me that life was about to begin – real life. But there was always some obstacle in the way, something to be gotten through first, some unfinished business, time still to be served, a debt to be paid. Then life would begin. At last it dawned on me that these obstacles were my life.” ~ Fr. Alfred Souza

    You are very wise to choose to make the most of THIS day, believing that God can give true joy no matter the circumstances. I pray He grants you abundant grace to live fully in each and every moment.

    Much love ~
    Andrea

  2. Kelly says:

    Life WILL settle. We call it our “new” normal. In the “new normal” we found out about therapy (OT,PT, and Speech), and the cadre of doctors appointments we kept, but it was fine. YES, you do stop watching for seizures, and you’ll be surprised how things will settle down. I made the mistake of stressing everything that first year (probably because I had spent so much time being vigilant before surgery, and before the hospital) that I ended up with chest pains. Please take care of yourself, and accept offers of support, even if someone sits downstairs with her for a little while, and you park yourself on your bed so you can relax for just a few minutes. New Normal is not a bad place to be.

    • Thank you so much for your wise words of encouragement, Kelly! I will TRY to relax!! There’s a certain measure of excitement, too! I can’t wait to watch her achieve all of the milestones still ahead! Hugs!

  3. Carman says:

    It is such an honor to know you

  4. sharon says:

    Joss and her parents just reminded me what love really looks like and how precious each moment we live is. Thanks for the beauty that you are choosing to share with all of us.

  5. Carolyn says:

    Oh, Jess,
    You are a MOST gifted writer!!! Please don’t stop writing! I see in your blogs a fresh, full-of-courage voice that no doubt helps you focus, but is a convicting word for all who read it.
    Some day, when the trauma is less frightening and days give rise to “free” time, God might be preparing the way for you to publish your journey for others whose journey is just beginning. What a powerful tool to minister to frightened parents and grandparents.
    When we know Him, these crises of life do have purpose as crazy as that sounds.
    Keep looking up, finding those moments of hope and joy. Remember:
    “My hope is built on nothing less than Jesus’ blood and righteousness.
    I dare not trust the sweetest frame but wholly lean on Jesus’ name.”
    HE is our solid ROCK!

    • Thank you so much for your kind words and encouragement, Carolyn! Writing has been very therapeutic for me as we’ve walked this difficult road. We are so very grateful to have wonderful people like YOU to share our story with! Blessings to you and your family!

  6. Powerful stuff here! Amazing Grace…how sweet the sound….I see God’s grace working in and through you…in the midst of your struggles and sorrow and anxieties…God’s grace is shining through like the rays of the sun…dispelling the darkness and the dissolving the gloom…His grace is shining and filling up the room, overflowing to each of us and giving us hope for our own lives. I love this post…so true…don’t keep waiting for a better time and miss the life God has for us right here and now. Amazing Grace…how sweet the sound….Oh yeah…saving poor wretches like us.
    Thank you for being so real to us, Joscelyn’s Mommy…Jennifer Mrs. Pringleman Dempsey! You have been such a blessing to so many through these past many months since we first learned of you following the tragedy of losing your precious Nick…May God continue to carry you through as you continue in this journey of your life. May He always give you the strength that you need each step of the way. May you always allow Christ to shine through you, even in the darkness. In Jesus’ Name I pray for you today, Amen.

  7. Rest assured, you really know the secret to a happy, joyfilled life. Live Now, like there’s no tomorrow and you will have no regrets. This life you have right here and now is a blessing like no other. Bravo! I continue to support you in this! Sr.K

  8. darlin, i am sorry i got to meet you this way, but am so blessed to read your words of wisdom and love, and follow your sweet daughters journey. she really is a warrior! and so are you and the man! your writing is incredible and i wish you all the best for the rest of your lives. much love to all of you! carlanda

  9. Melissa says:

    Jen,

    As said before, I don’t “know” you except through this incredible journey that your family has taken and being asked by a friend to pray for her. Reading each word you place down not only amazes me, it enlightens me and gives ME hope. I pray each and everyday for Joss, you and the family – strangers miles away- but yet caring. I have to be honest, when I see the pics of Joss smiling, I have a calm that enters me. God saying, “I hear you and I’m listening.” I wish I could meet life’s adversity with the attitude your precious daughter has met them with. A true “princess warrior” she is!!!

    A new phase of the journey now takes place. I’m thrilled to know that y’all will be going home. Home is healing. Home is comfort. Home is…well, HOME. While realizing constant monitoring is to be done, do not doubt yourself one moment. God had a plan for Joss long before she arrived. She has touched the hearts of many, MANY people far and wide; strangers, friends and family. God’s biggest plan was making you and “Pringleman” her mommie and daddy. He knew what he was doing! God bless you all. My God’s comfort rein down on you as you take the next “step” in the “Journey”. Continued prays from Kentucky.

  10. Cynthia Greenly says:

    My Dearest Friend, Jen:

    What you don’t already realize is that you are living your life. You do take it day-by-day (I feel a song coming on). I am glad you are getting to go home with your beautiful daughter and hubby, back to your boys. Once you walk through your front door, God will continue to bless you and keep you. Please don’t stop writing…your blogs give all of us, regardless of our situation, incredible HOPE. You have touched so many lives now and to stop would be a travesty. Joss has definitely become the “Princess Warrior” in many lives. We all want to continue to hear what is going on day-by-day.

    Hugz and love-
    Cynthia

  11. Suz says:

    Dear Dempsey Family,

    My family has been following your blog and we continue to pray for you all. We look forward to hearing about all the progress Joss is and will continue to make.

    My husband is a Disney artist and animator and has done a sketch/drawing for you of your little warrior princess and Merida from the Disney film, Brave. I’d like to email it to you and if you’d like, mail the original for Joss to keep. His hope is that it will give your spirits a boost 🙂

    Please contact me if you’d like me to forward it.

    Blessings,
    Suz

  12. June Silva says:

    There are so many lessons in what you wrote today. Your little girl does have a long road ahead of her but I truly believe, she is ready to live her life and her smiles show that! Yes, I am sure the next days and months will be filled with anxiety and fear. I will share that when my sister was 26 the Doctors gave her three months to live. These were Doctors from major hospitals, including Sloan. The story is long, but the bottom line, I found a treatment, we did not give up! When she turned 50 she said, I am alive and I am am here to do good! She and my brother-in-law were missionaries for many years. No, it was not always an easy road, but she is still alive, still helping others and the treatment that she and I were part of is saving other lives today! We can question and search, but you have done so well and so many are praying!!! Please have peace and feel the love and confidence and prayers!!! June

    • What an inspiring testimony, June! Thank you so much for sharing your sister’s amazing story with me! We are so grateful for the many prayers that have supported us as we have traveled this difficult road! Your loving kindness has made this time so much easier to bear. Thank you!!

  13. giazzpet says:

    Just look at what you and your family has created here – not just a support group for your beautiful amazing daughter who shows that she has Chutzpah up the wazoo but the strength you continue to show the rest of the World.
    I am so glad I got to meet you (even if it is just virtually), and one day my friend, I will meet you, Pringleman and Joss (and of course the rest of your family).
    Hugs from me in the meantime.
    G

  14. barbara summo says:

    Your beautiful baby girl looks very strong and happy! Neurosurgeon’s can work wonders these days! The best medicine: love, hugs,kisses and laughter each day. We lived life one day at time as well. I can really relate to your situation. Joscelyn is a special gift given to you for reason! You are very lucky. You are loving parents to a sweet, special child which puts you that “special” family category which many people don’t understand, because they are not in your situation. They don’t understand what it is like to parent a child 24/7. Ignore all those who are ignorant. Same thing happened to me. I shut them out! Enjoy her! Hold her tight! Kiss her every second that you can. I’m sure she gives you twice as much love back! Laugh as much as can together! Be strong. Peace to you all. Peace to Joscelyn. Barb

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