Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

Meet Joscelyn’s brothers!

on June 16, 2012

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.

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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reading a story in the early weeks after Nick’s accident of a mother who, after her child died, became extremely withdrawn.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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6 responses to “Meet Joscelyn’s brothers!

  1. Praying for you! Amen to what you said about our living and mothering for our surviving kids. Hard, for sure, but we can and will do it!

  2. Tina Miller says:

    Jen you are a strong amazing woman. I am sure you will do just fine with all of the kids and the boys will understand if Joss needs you a little more than usual. They seem like great kids and it is so good to see you all having fun and smiling 🙂 I will continue to pray for peace, strength and an outpouring of God’s love for all of you as well as a quick and total healing for baby girl. Hugs and ❤

  3. Thanks, Tina! Hugs & Love back!

  4. momslovedirt says:

    Thanks for sharing your story! My family and I live in lake county. Do you know of any sibships in the area? I have one son with special needs and would like for my other son to have some support if he would need/like it.

    • Hi! found this list of Sibshops in the Lake/Orange County area. I haven’t been to any of them yet. If you attend one of these groups and like it, please let me know! Good luck in your search! Hugs!

      Summit Sibshops
      Primary Contact: Ashlea Johnson, LCSW
      Summit Mental Health Services
      244 East Highland Avenue
      Clermont, FL 34711 map
      Phone: 407-222-0528
      http://www.summitmentalhealthservices.com

      South Lake County Sibshops
      Primary Contact: Nancy Allison
      First United Methodist Church
      950 7th Street
      Clermont, FL 34711
      Phone: 352-255-4325

      Sibshop Description: A program for siblings of children with disabilities ages 6 – 12 held monthly on Saturdays from 10:00am to 1:00pm.

      Primary Contact: Judee Samuels
      UCF-CARD
      4000 Central Florida Blvd.
      PO Box 162202
      Orlando, FL 32816-2202 map
      Phone: 407-823-6011
      http://www.ucf-card.org

      Primary Contact: Sharon Paul, LMHC
      Down Syndrome Association of Central Florida
      204 North Wymore Road
      Winter Park, FL 32789 map
      Phone: 863 529-7148

      Autism Society of Greater Orlando Sibshops
      Primary Contact: Donna Lorman
      Autism Society of Greater Orlando
      4743 Hearthside Drive
      Orlando, FL 32837 map
      Phone: 407-855-0235
      http://www.asgo.org

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