Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

Facing the Unthinkable

on May 31, 2012

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After consulting with Joscelyn’s doctors last week, we have made the unthinkable decision to go forward with the hemispherectomy. Sometime in June, our precious baby girl will check into the hospital and have half of her brain surgically removed.

Doctors called their decision to recommend a hemispherectomy in Joscelyn’s case, “a slam dunk”. (Perhaps because the phrase “no-brainer” would have seemed insensitive? Yes, we’re still trying to find the humor in our situation. I suggested to Michael that our new family motto should be, “The Dempsey Family: Making You Feel a Heck of a Lot Better About Your Life Since 2011”.)

Joscelyn’s MRI revealed significant malformation of the left hemisphere. This “bad brain” is no doubt responsible for the increasing number and severity of the epileptic seizures from which she has been suffering for months. If we don’t remove the damaged half of her brain, the seizures will eventually spread to the healthy right side of her brain, her condition will continue to degenerate and she WILL end up severely disabled.

Ideally, once the procedure is done, her right hemisphere will (hopefully) take over many of the functions and responsibilities of the missing left half, allowing her to learn to walk, talk, read, write and even drive. Doctors do not expect and significant impairment of her cognitive function. Indeed, I’ve read many stories of other “hemi-kids” who have gone on to graduate high school and college and lead normal, happy lives.

So, on the positive side, we are not without hope.

It is likely however, that Joscelyn will forever walk with a limp and lose some of the use of her right hand. She will also lose some of her peripheral vision in both eyes. (But not her central vision which is what will enable her to read.)

There are more risks to the surgery, of course. Infection, the need for a shunt…several others I can’t begin to think about right now.

As many of you know, this diagnosis comes just six months after the sudden, tragic and completely unexpected death of our 14 yr old son Nicholas. Joscelyn is one of the primary reasons I get out of bed every morning and continue to put one foot in front of the other. The thought of losing her is terrifying beyond belief.

So instead of dwelling on the unthinkable, I am thinking of what I need to prepare for the surgery.

Yesterday, I did a makeover on one of her babies. I removed all of its hair and added a hemispherectomy scar to the top and side of its little cloth head. This is the baby that Joss will take to the hospital with her. This is the baby that will best resemble her after she’s had her own tiny little head shaven and the diseased portion of her brain removed. This is the baby that will travel with us to the physical therapist, occupational therapist, speech therapist and behavior therapist appointments that will make up more than 15 hours of our weekly schedule for the next several years. This is the baby that when my little girl is grown, she will hug tightly to her chest and will remind her how far she has come and how mightily God has used her to inspire others.

Please God, let that vision be a reality.

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84 responses to “Facing the Unthinkable

  1. Tiffany says:

    Jennifer…my heart aches for you and what you are facing. I can’t imagine the magnitude of your feelings. Your attitude and sense of humor as you face this is an incredible testimony of God’s gift of peace and comfort and faith. Joss will have quite the story to tell as she grows up as will you. She couldn’t have a better mommy as she walks this path. Love you!

  2. Mariah Lester says:

    Jen,

    I cannot even begin to imagine what you and your family are going through. This decision has to be one of the hardest things and I couldn’t fathom having to make it. You are one of the strongest women I know and I continue to draw strength from you on a daily basis. I love you and my prayers are with you.

    Mariah

  3. Sondra says:

    What an amazing outlook you have. God bless you in your journey. You most assuredly have the strength of Christ as you “do” this circumstance, because no human could possibly deal in such a Godly manner. I will certainly remember you in my prayers.

  4. deb says:

    you are in my heart and my prayers…

  5. I have prayed for you that the Lord will give you and your family the strength to take on what is so overwhelming for anyone to have to deal with. Remember even when your friends and family members may not seems to be there for you (which certainly they will be) God is your refuge. I know you know this firsthand already.

  6. Kara Harris says:

    I followed the link to your blog from the Hemispherectomy group on Facebook. My little one, Angie, just celebrated the one year anniversary of her left functional hemispherectomy and the quality of her life is beyond what we could have imagined. This surgery saved her life. Your expectations are reasonable-one sided weakness, visual field cuts, and best of all a healthy, happy child. I look forward to reading about Jocelyn’s journey along the way.

    God bless,
    Kara Harris

    • 5thmonkey says:

      Thank you SO much for your encouraging words, Kara! Hearing success stories like yours is such a comfort. I will keep Angie in my prayers and wish you both much health and happiness!

  7. giazzpet says:

    Oh sweetie – you have been through so much already! But, even just knowing you virtually (heh, been 3 years now, I think?) I know that you and Ed are very strong – and I will pray for you and your family.
    Here’s hoping for a fabulous outcome. Don’t worry about the what if’s – worry more about the what if you didn’t do it.
    A friend’s daughter (now age 22) has a brain tumor and they did operate, and she is somewhat functional, but the tumor is still there.
    Hugs and Hope in the meantime – you know how to get in touch with me should you need a virtual ear/shoulder.

  8. Marlene Buchel says:

    So far the Dempseys’ are making Job’s life look good…………Just when you think it couldn’t get any worse. Sending prayers and wishing you the BEST outcome possible.

    • 5thmonkey says:

      Thank you so much for your prayers and good wishes, Marlene! We have hope- and for that, I am truly grateful. I couldn’t fight for Nick. Lord knows I would have! But I can fight for our precious little girl, and fight for her we shall! Hugs!

  9. Kameron Meyer says:

    Jennifer – Our family will be praying fervently for you all. It is, indeed, the unthinkable and I could hardly breathe reading about Joss’ condition and the pending surgery. Oh Lord, lift this Mama up – and the rest of her family – and let them rest solely in Your arms during these scary days ahead. Care for that little one, as only you can – perfectly, wholy, tenderly. We trust You, Lord. -With love and prayers, Kameron (Kerger – Becky’s daughter and Meredith’s sister!) Meyer and family

  10. wow. my prayers are with your family as you face this. i am looking forward to following her journey. hugs and love to you. carlanda

  11. Joy says:

    I wish you and your family the best.

  12. Sherri V. says:

    Your family is in my thoughts and prayers. I’ll put a prayer request in at church as well. God bless you all!

  13. Kelly says:

    Popped over from Patti Digh’s sharing of your post on Facebook. The courage and sense of humor you exhibit is a testament to your strength that will undoubtedly flow through you to your sweet little girl. You and your family are in my prayers!

  14. Kelley says:

    You’re in my thoughts.

  15. Dawn Gaylord says:

    I am so sorry that I have never had the pleasure of meeting your family. My heart hurts for the loss you have had to endure and for the fear of the unknowing on your beautiful little girl. I pray that God’s merciful hand will control the surgeons hand and that your precious baby will come through all this unscaffed. Knowing that God is in control. may he continue to be eith you & your family in this very scary time in your life.

  16. Norma Ruttan says:

    I shared your post with my Bible Study ladies. More prayers will follow. How hard your journey has been so far and continues to be. May God bless your family, the surgeons and all health care people you will meet.

  17. Jennifer- My Mommy heart just breaks for all that your precious family has gone through this year. You will be in my prayers. Praying for that sweet vision to ring true.

  18. Kim Linn says:

    Dear Jennifer & family, I am thankful that you are giving all of us the privilege of following along with you on this walk you are about to go on. It allows us to be able to keep your family in prayer, and will remind us all to love our own children with abandon, on a daily basis. You are an amazing and strong family, and I know you all have, and will continue, to bless many with your love.

  19. Joanne says:

    I am praying for you and your beautiful baby girl. You are an amazing soul. I am looking forward to hearing about Jocelyn’s recovery. Thank you for showing such strength in the world. xoxo

  20. Kathryn Knoll says:

    Your children both here and, now, your son, on the Other side are your finest teachers who will show you how magnificent you are becoming. I am sending you all the good thoughts, prayers and energy I can, to help you stay in the Now moment where all the good gifts are. Cherishing each mysterious moment with you. Blessings, Sister K.

  21. Carman Cullen-Batt says:

    You are truly amazing. God hand picked the perfect mother for his angel Joscelyn

  22. Marla Appel says:

    I can not begin to imagine what you and your family are going through. You have a wonderful support group behind you and know that you are in our prayers. If we can do anything to help you get through this you can count on us.

  23. My daughter left for college last fall. She’s gotten the privilege of becoming an Resident Adviser this year: in charge of all in-coming Freshman. She is typically a pretty shy kid. She left home carrying her teddybear, Fuzzy.

    I’m going to visualize your Joscelyn carrying her baby to college in JUST the same way. My prayer for you is that your biggest concern 14 years from now is the melancholy you feel over making the last of the school lunches because it’s time to launch your girl to the Big Wide World.

    Big Love to you my dear. I love that doll. Joscelyn has a great mama who loves her and is thinking about meeting her RIGHT where she is. That is seeing and that’s what Love does. Love heals.

    • 5thmonkey says:

      Thank you so much, Rebecca! Best wishes to your daughter as she begins this exciting new chapter of her life!

  24. Tina Tierson says:

    Rebecca -You and your precious little girl will be in my thoughts and prayers! I know that everything will be all right. And as for the loss of your son, I lost my oldest son in the first Gulf War so I know the pain of that. Just be assured that Nicholas will be standing guard over his precious little sister in the operating room, as he will also be standing along side you and your husband as you go through this trial. Sending much love and many hugs.

    • I’m so sorry for the loss of your son, Tina. No matter how old they are, they are always our babies and it is always unnatural for a mother to lose a child. I appreciate your words of comfort and assurance so much! Thank you! Hugs and love to you too!

  25. Pam says:

    Jennifer, one of my first projects at FHFC was a database for the epilepsy program. While working on this, I got to meet a few of the surgeons who perform surgeries like these and have been astonished at the recoveries that kids make after these surgeries. What a marvelous gift that she has been born in a time and place that will allow her to benefit from hemispherectomy. In the lobby of our hospital, there’s a reproduction of a painting that gives me such hope — here’s a link to a blog that has the image: http://livingbyfaith-nanad6angels.blogspot.com/2010/06/our-chief-surgeon.html Please know that Joscelyn, your family, you, and the medical, nursing and rehab staff who will provide care for your gem will be prayed for.

  26. Carol Rodgers says:

    The doll you are making shows how supportive and realistic and very loving you are. I’m sending all the good juju I have to send. Best wishes to your family.

  27. MARY ANN LAFARO says:

    AS THE SAYING GOES ” GOD BRINGS YOU TO IT, HE WILL BRING YOU THROUGH IT” YOU JUST GOTTA BELIEVE! FAITH IS ONE OF OUR GREATEST GIFTS.

  28. Diana LoPresti says:

    I read your story yesterday and as I laid in bed last night I wept till I fell asleep. My son has Epilepsy and daily seizures were part of our lives for almost one year. Praise God our Joshua has been seizure free for 6 months now. The daily challenges when he would have a seizure, would tear my heart out each time, as we prayed each night my 3yr old would pray “No more seizures God”, so I know how you feel each time. We too, underwent therapy 5x a week, OT, PT, and speech, his seizures were brought on from a stroke he sustained while in utero; so he was known as a Hemipalegic, and his left side was affected. He did have delays, and didn’t walk till a little past 2 yrs old, we still have dificulty jumpling and climbing stairs, but he’s a fighter and has overcome so much as I KNOW your Joscelyn WILL. I questioned God’s decision’s each time he had a seizure, as I’m sure you have as well, but know that she is so precious to Him and He loves her dearly. Yes modern medical science today is amazing and praise God she can benefit from this, but God truly is the Great Physician and He CAN and DOES do MIRACLES. You will look back on this journey and it will be an amazing testimony, as I am looking back now. So many prayers and blessings and tears sent your way to your entire family and your beautiful Joscelyn.

    • 5thmonkey says:

      Thank you so much for sharing your son’s inspiring story with us, Diana! I will keep you and your sweet little boy in my prayers! Blessings and hugs!

  29. Tracy says:

    Saw your post through Teresa Henslee’s facebook page. With the love and courage I see in you telling Jocelyn’s story, I know where she will get her strength! God Bless you and your family on this journey. You are in my prayers!

  30. Wendy Hoth says:

    Jennifer, God has been with you through so much, and He will continue to give you the strength you need. No mother can imagine going through a tenth of what you’ve had to go through. We draw strength and inspiration from you as you handle life with such grace. My prayers and thoughts are with you. Much love!

  31. Carolyn says:

    I am Andrea’s mom. She has shared your story and now provided me the link so that I can stay informed as how to pray. My mother’s heart is brimming with compassion as I contemplate your situation. Be assured that you and Mike, your little one, the medical team and your entire family will remain in my prayers as you walk Joscelyn’s Journey.
    In Christian Love,
    Carolyn

    • 5thmonkey says:

      Thank you so very much, Carolyn! We appreciate everyone’s prayers more than we can say! Blessings!

  32. Jaime says:

    Jennifer, read your blog thru a post from James Argento. God made us women strong for a reason. We have a lot riding on our shoulders, but we are strong enough to handle anything that comes our way. We are hoping for the best and will keep your beautiful daughter in our thoughts and prayers. ~ Jaime Sorin

  33. Kristen says:

    Your story was forwarded to me through my homeschool group. Although I do not know you I wanted to let you know that your family is in my prayers. Also, I had been given a donor number and dates to donate blood for your daughters surgery. Are you still looking for donors? If so I will forward this on to a different homeschool group that I am part of. Please let me know!

    • Thank you so much for your prayers and support, Kristen! Yes, we are still in need of blood donors. I will be blogging about the blood drive next week. Donations are being accepted between June 18th and June 29th at any Florida’s Blood Centers location. Donors should identify themselves as a designated donor for Joscelyn Dempsey, ID number 2108462. Her blood type is A+, so anyone who is A+, A-, O+ or O- can donate. To locate a blood center near you, visit http://floridasbloodcenters.org/fbc-locations/viewLocations.stml
      Thank you so much!!

  34. Rachel Owen says:

    May God be with you and your precious baby girl. My heart breaks for you and your family. Your story of the doll left me sitting in a pile of tears. Wesley and I will keep you all in our prayers. Know that this has helped me as I want to have a baby desperately and it doesn’t see to be God’s will right now. And as I sit here pouting in my situation I get on Facebook and see Stephanie referring her friends to this blog and I realize that worse than not being able to have a child would be having one and losing one, which you have already gone through once and the strength you have to find happiness is this situation is truly inspirational. Thank you for being so open about this and thank you for showing me that everyone (even people you think have everything you want) hurts in ways you may never even be able to imagine. I pray for your continued strength and for Marc and all your kids and husband that they find a way to see the light in all of this. To see His light in all of this. Thank you for this, it has helped me more than you know.

    Rachel 

  35. Hi, this is Nicole Hopper. I saw you left a comment on my son’s blog about a month ago. Sorry, I didn’t respond since I discovered your comment just now. I would love to talk with you more. Our son’s surgery was postponed until July 23rd. We have great respect and trust in the Orlando surgical team! Aren’t they awesome? 🙂 I look forward to hearing about your upcoming experience. I can’t really dwell on the surgery since it upsets me to really think about all that will happen, but I also know God hasn’t given me grace for that day just yet. When it rolls round, it will be there! Praying for you and your family.

  36. Stephanie says:

    I was so blessed to meet you in January (I was with Tiffany at the coffee shop)– I came away so amazed at who you are, and so in awe of how God is present in your life. And what a gift it was to hold your little treasure for a few minutes. I am praying for her recovery, praying for your family as you walk through this unbelievably dark tunnel, praying that God will carry you as you carry your little Joss…

    • Hi Stephanie! It’s so good to hear from you again! I look forward to seeing you again the next time you’re in town for a visit! Thank you so much for your prayers and encouragement! Hugs!

  37. sarah thompson says:

    I am praying and believing for complete recovery for your precious baby.My children will add her to their prayer list.Our God is able!

  38. Joscelyn’s Mommy – I saw your post on my FB page – and I am deeply touched by your journey. I grew up with epileptic seizures and had brain surgery at the age of 25 to remove the beign brain tumor that was the root of my issues for 15 years. I had surgery at Yale New Haven Hospital where many people I met were experiencing issues such as your precious daughter. I am so glad I am familiar now with your story — prayers going up! Kindly, Marianne Richmond, author

    • Oh, Marianne! Thank you so much for taking the time to share your story with me! Your encouraging and inspiring words are such a gift to us and will be read to our little girl nightly for many years! Gratefully, Jennifer

  39. I read your story on F.B Disney pavillion page , my heart goes out to you and your family. Since I have a similar story, but the Lord was so good to us and made a miracle, when he put Dr.Lee and Dr.B in our lifes my daughter has been seizure free for 6 months she had part of her left brain removed and is well on her way towards our goal which is the year mark so that she is declared seizure free, Good luck to you and your family God bless you and your baby girl.

  40. Annie Dougherty says:

    My loving care, respect and prayers are with you. Your positive attitude, unconditional love, and trust in God are important keys to a personal, rich and remarkable life journey.

  41. THenry says:

    Hi there, Thank you so much for your story. Can I ask where you live? I am in the UK, and we don’t have much support here. Over the past 50 years, there has only been 33 known cases.

    My 10 week old nephew has just been diagnosed with the same condition, on the same side. I’m really struggling to find information of what to expect. Do you have any hints and tips of what other things after surgery what to expect? Are you doing any fundraising?
    My family and I are taking each day as it comes. And every day just hoping there is some better news. We’re having good days and bad ones as you can imagine.

    • Hello! I am in Florida in the U.S. I’m sorry to hear that you lack support during this difficult time. I would first refer you to the Hemispherectomy Foundation: http://hemifoundation.intuitwebsites.com/index.html
      They also have a Facebook group where you can network with other hemi families from all over the world: https://www.facebook.com/groups/29122689930/
      Since Joscelyn’s surgery, she has begun receiving occupational therapy, physical therapy and speech therapy. Hemispherectomy outcomes vary greatly depending upon the underlying condition that led to the surgery, the age of the child at surgery and whether or not seizure control was achieved. Taking every day as it comes is really your best approach as you can’t necessarily compare one child’s progress with another. We are not currently fundraising but we did use an online platform called YouCaring to raise funds prior to Joscelyn’s surgery: http://www.youcaring.com/medical-fundraiser/joscelyns/23923
      If I can answer any further questions, please don’t hesitate to ask!

  42. How sweet, what a strong girl!

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