President Barack Obama's chief campaign strategist, David Axelrod is a parent who knows what epilepsy does to the life and family of a child with epilepsy. His wife, Susan, Chairs Citizens United for Research into the Causes and Cure for Epilepsy CURE. They asked for personal stories. I read many of those written by parents each with both similar and unique experiences. I thought, parents of children living with with epilepsy are extremely modest in the ways epilepsy impacts a family. So I am writing from my observations as Auntie Dawn, a member of Aaje and her mother Qimmah's support team.
Becoming Auntie Dawn
Being Aaje's "Auntie Dawn" is complicated but brings with it gifts. It is a relationship like no other it goes beyond usual relationships. I am godmother to Qimmah, which makes me grandgodmom to her children. My best friend Beverly, died of breast cancer in 2004 and a long time pact was that in such an eventuality, we would step in as surrogate mothers. She left me with instructions for each of her children and for Qimmah it was that I must assure she always has the support she needs to take care of Aaje who besides epilepsy, she has Autism and underdeveloped cognition. Aaje will need the daily care of her mother for her entire life.
Aaje was a normal birth her first three years of checkups placed her above average on the growth charts including language and cognitions. Two weeks after she blew out her three birthday candles, she suffered her first cluster of seizures, they were often and violent. That was 12 years and too many seizure episodes, medications, scans, MRIs, neurological evaluations, assessments, education planning conferences, therapies, hospital stays and tantrums to count. Entering the teenage years have added piled on her the many issues associated with puberty. She struggles with these changes that she does not understand. After having moved with her family to another state, her mother overwhelmed by her needs returned home to Seattle. She is learning to be with her extended family, she can be as rude and non compliant but within the realm of her damaged neurological functioning is a bright and loving child.
Aaje's mom is an incredible and knowlegeable caregiver, in ways that go beyond just being a caring mom. She is an expert on caring for a child with special needs. A child with epilepsy that is complicated by Autism and compromised cognitive skills. As her sole parent, she is the expert. The professional experts do not know what causes epilepsy nor what can cure it and they are just coming into higher knowledge of Autism. How epilepsy affects her development is not known. Each person living with epilepsy has their unique story and parents know the frustrations associated with epilepsy. There is the never knowing when the next seizure will occur, or how long it will last. What they do know is the cost of the hundreds of medical consultations, the prescriptions that did not work or did work for awhile and now there are increasing break throughs. Qimmah knows well the fear of those who do not understand epilepsy, she knows that she can count on half a hand the people who she can leave Aaje with. She knows the questions and suspicion when arriving in the emergency room a child bloodied and bruised from a fall during a seizure when you were busy taking care of her siblings.
I watch with admiration this young mother who presents like a student of neurology, pharmacology, education and psychology? She is an expert in what works and what does not work in our medical care and education systems. She knows what happens when professionals do not hear her, or discount her observations. How does this young and now single mom take care of her own natural need for friendships, a social life and career? Well like most parents, not very well. When there is a child with a disabling disease in a family, breaks in relationships are extremely high. So I admire Qimmah as she manages the education of her 8 year old son who is very bright and cares for her 1 year old son who is now walking and into everything. Though she has applied for every service that should be available to her family, they are not readily forthcoming.
|Aaje and Qimmah|
For Aaje's mom there is no compensated and trained respite care available due to government budget cuts and shortfalls. So she had to give up an enjoyed and lucrative career. When other young people are going to social events, she is sitting in hospital rooms and doctor offices or merely caring for daughter who is totally dependent on her. She and her family had to learn to be poor. Which means she had to learn the systems associated with being poor. In friendships there is an expected give and take, when so much of who you are is going to a child who needs your constant attention there really is not much to contribute to close relationships. Time away from the job for unscheduled seizure activity does not coincide well with a workplace project timeline.
Everything is Pre-Existing
Qimmah manages Aaje's multiple appointments associated with the first diagnosis of Epilepsy when she was 3 years old. She was traumatized as she watched her bright and active child began to show signs of cognitive delays. The diagnosis for Autism the Special Education designation and Individual Education Plans(IEP) and the expectation that it be managed by her, the parent. Though all of this is extremely complex and difficult, mom is a proficient and wonderful Chief Advocate and Manager for Aaje's epilepsy and the complexity of her multiple diagnosis. I consider what it was like being a mother with a husband to teenagers. Add epilepsy and not knowing when not only a behavioral tantrum is on the horizon but a cluster of seizures just might occur when least expected and they are always least expected. The already difficult teen years for Aaje is exacerbated by increased seizures and behavioral episodes associated with her Autism and marginally her menstrual cycle. She and all who have epilepsy diagnosis are perfect for knowing the need for Obamacare, everything about Aaje's current medical history is "pre-existing." And mom, despite her college education and having a marketable skill, is poor and might be poor for a very long time.
Families of children with epilepsy or any or multiple special needs need human support systems. They need government systems that do not add to already overwhelmed lives. Siblings need attention and to be cared for. When someone needs to be with Aaje when she is hospitalized. Going with mom to the IEP conferences means she does not have to be alone with a team made up of several education, health and legal professionals. It is someone to hand her a tissue. And as her surrogate mom, me there is is the occasional saying to her what she already knows. "You can do this. You have to do this. Who else will do this better for your daughter?" An then being a shoulder to cry on.
|Aaje and Auntie Dawn|
Those who can please make a donation to CURE. And then decide to be on a support team for an adult or child living with epilepsy or any special need. For me, of all of my titles, being "Auntie Dawn" is very satisfying.