Renee Suzanne Cole will do whatever it takes to give her children the opportunities they deserve.
The photo above is my son, Oliver, a few hours after he was born and a few hours before he extubated himself, meaning he pulled the vent tube out of his own throat enough and did OK enough without it that the doctors didn’t need to put it back in.
Oliver was born 12 weeks early, weighing 15 ounces, and measuring 10.5 inches in length. He spent 7 months in the NICU which were the scariest, most difficult, most informative months of my life. We lost him many, many times and the skillful hands of the NICU Doctors, Nurses…and the Hand of God brought him back each and every time.
Oliver did not get to come home having met the criteria for leaving the NICU: Off of Oxygen, Feeding on his own, etc. We brought him home with Oxygen 24/7, GTube feedings, a list of Medications longer than anyone I have ever known to have, in need of every Therapy there is, and needing to be protected from visitors, germs, etc. Quickly we realized our life was never going to be the same, ever again. Our life was no longer our own. Our home was not our own. Our son wasn’t even our own. Strangers came through our home day after day, multiple people at a time, all to provide services for the littlest member of our family who needed the most. Private Duty Nurses working 12-hour shifts, 6 days a week when we could get them, OT, ST, PT, DT, eventually Aqua Therapy and Home Tutoring, always Medical Supply and Oxygen deliveries, and Supervisory Visits to make sure everything is going according to orders! Oh yah, “orders” … Oliver has over 20 some Pediatric Sub-Specialists that we have to follow-up with at varying intervals, so there are tons of orders. We cannot do anything for our own son, even now at age 7, without a Doctor’s order.
Oliver has Autism with Sensory Processing Disorder and OCD, profound hearing loss in his right ear, and moderate loss in his left. We refer to him as deaf. He has several GI dysfunction diagnosises as well as sinus and ear dysfunction issues. He also has vision issues, cardiac and respiratory issues (rendering his heart and lungs much like a 60-70 year old who has abused his body). I could go on, but it’s just too much. Too much for me to have to think about all at once and too much for most people to take in.
I am just going to start writing shit down today because I don’t have a real person to talk to anyway and maybe someday a real person will read this. Maybe that will feel good somehow. Either way, I have to get something out, otherwise my daily stress will increase, and at this point, it is already beyond acceptable limits. Real people don’t want to listen to the kinds of things that happen to me. The kinds of things that happen in my life are exactly why I do not have friends anymore. Friends are what you need for listening. I lost any friends I thought I had when I had to dedicate myself to saving and sustaining my child’s life day after day. No one can maintain friendships and care for a family member this way. I am no different. I can barely maintain myself. I don’t know if I am even maintaining relationships with close family members anymore. I do the best I can to keep up with my 3 older children. It is easier now with them because they are older: teenagers. But, that also means that they are also almost grown—almost gone, which makes me sad yet again. I don’t know what I will do when they are out of the house. I like my house full. But, Oliver will never leave. Now, that is upsetting though because I know a child should grow up and be able to care for himself eventually and leave his parents to make a life for himself.
But, I don’t think that will be the case for him. The responsibility weighs heavy. The sadness that brings is sharp. That few, if anyone else, in our extended families even understands or cares about this reality pisses me off greatly. That the general public wants to push away, ignore, dismiss, downplay, generalize, and in many ways make life harder for the disabled, makes me often angry. I am often exhausted for having to fight back, even when “laws are already in place to keep shit like this from happening,” but yet it is happening—and not just to us. I am so tired. I am angry a lot. Bitter even. Juggling too much. “Too much,” I say, because we do not get the help that was even allocated to Oliver upon his NICU discharge, which was inadequate back then and is even more inadequate now.
“Bitter” because of how extended family does not embrace us, how society scorns us, because most of the medical community expects us to be just another sheep on their sheep farm, because the special education system is so sorely broken that it is not even remotely about the individual child anymore, and it’s not about an education anymore either. It’s about cookie cutter programs and cutting corners, cutting costs.
Next to no one I interact with on behalf of my child’s needs gets out of their own head, their own life, long enough to realize that while they are doing their JOB, they need to see value in my child so they understand why I am so passionate, so strongly in their face about my Oliver. My child is not just their JOB, he is my LIFE. He doesn’t go away at 6pm for me like his file and the office/clinic does for them. Oliver is my son 24 hours a day, 7 days a week, 365 days a year. Oliver depends on me to make all of his life decisions and it is going to be that way for the foreseeable future. That needs to be respected. So far, I get very little respect for that. In fact, that is very much downplayed oftentimes. Belittled. Twisted even. I am dumped on, doing the SAHM thing, assumed that I will always be here because everyone else has other “more important” obligations and I “do not”…not taking into account that being THIS CHILD’s SAHM also means being:
“Semi” Doctor Child Development Specialist
Registered Nurse Deaf Advocate
Respiratory Therapist Disabilities Advocate
Respiratory Technician Administrative Assistant
Pharmacist Medical Historian
Pharmacy Technician Receptionist/Scheduler
Nutritionist Transportation Specialist
Social Worker Inventory Specialist
Physical Therapist Purchasing
Occupational Therapist Quality Assurance
Speech Therapist Quality Control
ASL Instructor ASL Interpreter
Home Educational Tutor Instructional Aide
Child Life Coordinator Autism Advocate
And ALL of this on top of being Mom to his older siblings, Ian, Evan, and Ilse, as well as trying to do any sort of regular SAHM duties, like paying the bills, cooking dinner, buying groceries, obtaining the OTC/Rx medications, maintaining a household, etc. But, I am just a Mommy. Useless. I supposedly don’t really “know” anything. I don’t really “do” anything; Nothing important anyway. I’m female also, so I supposedly react emotionally first. This is also probably held over my head when it comes to my children. When I am strong-willed, decisive, straightforward, persistent, etc., I am perceived to be overly emotional, upset, and needing to calm down. A bitch!
“Just a Mommy who needs to calm down!” is the role that I’m supposed to play and nothing more. I am not supposed to know more than any professional, not offend, not ask questions, accept whatever I am told, never ask for more, never point out mistakes, injustice, or failures because professionals know what’s best. Professionals are important people. Professionals make the decisions, good decisions. Professionals know better than I do, right? Professionals know what information is important, relevant, and adequate, and they know what information to dismiss as frivolous and unreliable. Professionals have been trained, have experience, and are paid to know much better than I do. They are “Qualified” after all, and I am not. Oh sure, these professionals have learned that it is wise to pay SAHMs, like me, lip service, “Of course, no one knows your child better than you do!” But then they proceed to speak, act, and make decisions quite to the contrary.
In my experience, nowhere has this dynamic been more prevalent and destructive for my son and many other SAHMs and their children than in the special education systems across America. It is not just unfortunate, it is a crime. A crime against humanity. If there is a lack of respect for those amongst us with Special Needs and those SAHM (and Dads) who dedicate themselves to the complex care and Education of their Special Needs child, how as a society are we really following the laws already in place to provide a free and appropriate education to all children? How are we honoring and following the ADA laws? How will these children ever have a chance to prove their potential? Isn’t this what we all have the right to do here in America? To have access to an education and prove our potential, make something out of ourselves, be whatever it is that we can and want to be! I know it is what this mother wants for her son, for all of her children, and I intend to do whatever it takes to make it so—even if I have to keep ruffling feathers, getting in faces, and making others uncomfortable to get there.
Oliver is 7.5, but the size of a 3-4 y/o, still has all the medical issues he came home with from the NICU and more….and as you can see is still on continuous Oxygen (though at 3Lpm now). But hey,look at that red curly hair and those awesome glasses!!
EDITOR’S NOTE: We met Renee when Good Men Project founder Tom Matlack sent out a tweet that said “What is the most beautiful thing you saw today?” and Renee tweeted back the answer above.