If there’s one thing our research has taught us, a hemispherectomy is no small surgery… though common sense says that too.
A hemispherectomy “is a very rare surgical procedure where one cerebral hemisphere (half of the brain) is removed or disabled. This procedure is used to treat a variety of seizure disorders where the source of the epilepsy is localized to a broad area of a single hemisphere of the brain, among other disorders. It is solely reserved for extreme cases in which the seizures have not responded to medications and other less invasive surgeries. Hemispherectomy is considered the most invasive surgical operation in use today, although not the most dangerous.” (Wikipedia of course)
In the rawest of illustrations, the thought of allowing someone to penetrate our child’s scull and cut his brain in half is not easy to swallow. Most days, we can’t think of it directly for fear of crumbling in emotional debilitation. Most days, we Move Forward in a single purpose:
To enjoy giving our son every fun experience he has ever wanted before a surgery that could change him, his personality, individuality, likes, dislikes and more.
It is most likely that the surgery will lead to only the best results. Results in which we see our son void of constant subclinical activity; where he’s prospering, learning, sleeping, having a chance at a better life that he does not have now. But we also know the harsh realities of the unknown… the uncertainty of his language localization, the uncertainty of mobility, personality and all of the other devastating effects a brain surgery can have.
It is for all of those reasons we aim to only give him fun for the next weeks… actually, the next 13 days. His surgery is scheduled for Friday, June 29th.
Posts have been written by other bloggers in support of J and our family. As a part of their outreach comes awareness for epilepsy, hemispherectomies, the connection and support of and from a community. It is also for attention to his FUN!Raiser where funds are being raised to help get J these life experiences he might not have again, to help pay for the gas it takes to go back and forth to the hospital each day in order to also take care of our other children, meals at the hospital and more.
But one of the best parts… it’s our goal to have J receive as many cards as possible from around the world. Cards colored on by your children, written or drawn by them, or by you… well wishes, thoughts of encouragement… There’s an address on his site (see below) or you can coordinate with Caryn of Living with Logan who wrote this wonderful post.
For status updates and other information, CoBa Web Design has generously designed this site, Jackson’s Journey. You are welcome to join that site, follow the RSS feed, or follow via his Jackson’s Journey Facebook Page or via my twitter account @GinaStAubin, though some updates might be found through @Special_Happens. If you’d prefer to donate, you can do so here.
Any encouragement and support you can give to J will mean the world to a boy whose strength and perseverance have already inspired many.
Want to see some other posts by other bloggers? Here’s one from Stuart (@AutismFather) of Autism from a Father’s Point of View, the 2nd one from Caryn, one from Seven Yuckmouths & Autsim, one from Kat’s Cafe. There are others….but *they* won’t tell me any more.
Gina is the owner / editor, and lead author of Special Happens. She resides in Colorado where she is a wife and mother of 3, and is a member of the Board of Directors for the SPD Foundation. You can read more about her here.