I belong to an online support groups of Special Needs Moms called "We Are Brave Together." WABT is one of many support groups that I belong to for special needs. The WABT community includes Moms (women only) of children with varying types and degrees of disabilities. It offers gatherings (in person and online), podcasts, blogs, resources, retreats, etc. When you belong to a support group that casts a very, very wide net of community members, you start to try to find others with a similar situation. And when you have a child with the medical complexity like Jenelle's, you often don't feel like you fit in. That was until I read the blog entry at WATB on June 15 written by Billie Short entitled "Extreme Caregiving Influences Our Choices."
Billie gives us the definition from Lisa Freitag, the author of Extreme Caregiving: The Moral Work of Raising Children with Special Needs, (a book that is definitely now on my reading list!)
“Extreme caregiving involves the taking on of professional medical roles by a nonprofessional parent. It differs from both ordinary parenting and professional caregiving in that it is done in the home, often without respite or foreseeable endpoint. Unlike professional caregiving, it involves an intensely personal relationship between parent and child.”
Wow. I really couldn't have described it quite that well on my own. Brett and I are "Extreme Caregivers" to Jenelle, or as I like to say, we are "Parenting to the Extreme."
The role of "caregiver" took on new meaning for me when we moved my Mom (Nana) to Orange County in 2018. I was used to being Jenelle's caregiver and in comparison, had it pretty easy because Jenelle doesn't talk, works around my schedule and goes whereever and whenever I decide to take her. Well Mom was an adult, albeit an aging adult keenly aware of her failing memory and agility. We had to find new doctors for Mom, then find the time to attend Mom's appointments and allow Mom to listen to her doctors and have an opinion about her care - it was a huge change for me. I soon realized that dealing with elderly parents is not much different than dealing with a special needs child. You do it because you want what is best for your family member. I was living a special parent/child relationship with my Mother and my Daughter. I now realize that I was an "Extreme Caregiver" during this time as I took on the role of caring for two family members - "often without respite or foreseeable endpoint."
When the time came, my sister and I agreed to move Mom closer to my sister (9 hours away) when the Covid pandemic threatened our ability to see Mom in her assisted living community. The role of "Extreme Caregiver" involving my Mom was then passed to my sister. My sister's care was much more hands on as Mom lived with her at times. Both she and I got to experience precious time with Mom for almost exactly 3 years each. Neither of us regret it. The day after Valentine's Day this year, Mom had a fall and broke her hip. This was the beginning of the end, and she was gone a little more than 5 weeks later. The "foreseeable endpoint" had come and gone and we are all at peace knowing that we did the best for Mom in the twilight of her life. And what a beautiful life she had.
During the 5 weeks between Mom's fall and her death; our niece Kiersten passed away. Kiersten was Brett's Brother's daughter and was born with Hydrocephalus, and had special needs that were often much more complicated than Jenelle. Kiersten was 15 at the time of her death, and had been through so many medical challenges in her life. Her parents were "Extreme Caregivers" too. They often made decisions for Kiersten that Brett and I had never had to imagine making for Jenelle. On March 17, sweet Kiersten's body finally gave out. We were there that day with her parents and extended family members when Kiersten passed away. Another "endpoint" - their caregiving duty is done. Heartbreaking, and yet comforting to know her fight has come to an end.
Brett and I are still "Extreme Caregivers," with an intensly personal relationship with regards to our Jenelle. Caregiving done in the home. Often without respite. She is and will be our "plus one" for the remainder of her life.
Jenelle will be 21 this October, and with that comes a few changes. She will no longer be receiving services from California Children's Services (CCS), and we are told her medical group will change as well from Childrens Hospital Orange County to adult medicine. Well, some of her doctors at least, and for now I am pulling out all my resourses to nagivate these changes and decide what is best for Jenelle.
Unfortunately, Jenelle's seizures have changed and increased once again. While we no longer see the absence seizures (staring seizures) with the addition of Fintepla; we are noticing an increase of new seizures in the form of complex partial, atonics, tonics and drop seizures. Brett and I decided it was time to pull out the surgery options we'd been avoiding, and take another look. "What do we have to lose?" well, Jenelle of course. But what do we have to gain? Maybe nothing, maybe everything. Maybe it will be something we will wish we had done sooner? Maybe it will complicate things more than we imagined.
Once I informed Jenelle's neurological team at CHOC that we wanted to discuss surgical options, the Neuroscience department presented Jenelle's case to the team. The Team then met with us on Zoom to discuss the results of their discussion and presented the same 3 surgical options we were considering in the past - Corpus Collostomy (CC), Deep Brain Stimulation (DBS), and Responsive Neurostimulation (RNS). Dr. Olaya (our surgeon) prefers Corpus Collostomy as the studied results are best for patients with Lennox Gastaut Syndrome like Jenelle. Brett and I are against any surgery that "cuts" part of her brain, so we do not want to do CC. We all agreed that the next step was to start with another MRI, which Jenelle had done in May.
We met with Dr. Steenari on June 15 to discuss the outcome of the MRI and the options. At that time, Jenelle was not doing well seizure wise. She was so drugged with the addition of daily Clonazepam that she was lethargic and drooling. She could barely walk. And, we were seeing too many pro-longed seizures. Dr. Steenari felt that surgery would not give us the immediate results we needed now, so we discussed, and decided to add Xcopri (Cenebamate) and take away daily Clonazepam and keep it as needed. Studies have found Xcopri to be simililar to Fintelpa, with less side effects to the heart.
As for the MRI results, according to Dr. Steenari "Jenelle has a beautiful brain and a normal MRI." This has always been the outcome of her MRI, although it is the first time a doctor has said her brain was beautiful! Dr. Steenari discussed all 3 surgical options, and agreed to respect our wishes with regards to the CC. The difference between the remaining two options is that one works better for "focal" seizures and one is better for "generalized" seizures. Neither have much research on how well patients with LGS respond, and both can be reveresed if we find it causes more harm than good. The problem is that the origin of Jenelle's seizures are likely somewhere deep in her brain, and we aren't getting any accurate information from a regular MRI or EEG.
So, the next step is Intracrainial Monitoring, also called Stereoelectroencephalography (Stero-EEG or SEEG.) We all agreed that this is something that may give us more information about Jenelle's seizures, and is something we've never explored. The SEEG is scheduled for early September, and from that, we will make a decision between DBS and RNS.
The days of this past Winter and Spring have felt long, dark and cold. The grief has almost been unbearable, but thankfully I am an Extreme Caregiver and I know I cannot do it alone. I'm feeling hopeful now with sunny and warm days ahead with the arrival of summer. I know that Brett and I have always made great decisions for Jenelle, and that won't stop now. As always, I will keep you posted.
Here are a couple of my favorite photos of Jenelle's last visit with Nana. I know that Nana will always enjoy watching over Jenelle for us from her view in heaven.