Updated: Jul 20, 2022
Mama Wolf Confessions … facing my own mortality, my darkest fear and my need for a real inclusive community.
I didn’t know if to post this.
Is it too personal or will it be taken the wrong way or not relevant to our cause?
Then I realised it was relevant; we share the positive, but we also need to show that there is always another side to the story, a bigger picture that is relevant to many others on the same journey and a subject that needs to be made aware of, as a ‘real’ inclusive community can make a difference for so many.
I personally feel that my main job and purpose with my son (Rio, nearly 19 years old, a person with disabilities) is to love him, protect him, keep him safe, give him an inclusive life with experiences/opportunities, and help him to be as independent as possible.
I live committed to this purpose but often feel that I fail him; which saddens me and makes me angry (with myself and the world). There are so many obstacles in the way that make me feel I constantly fail him.
When I speak to people on a similar journey in different countries around the world, many stories all sound similar. There still seems so many barriers, hurdles and prejudices in the world to make life not as inclusive or accessible as it should be, in this day and age. Taking care of a child with disabilities can be financially crippling for a family, to the point that you struggle to provide the simple, basic dreams that you have for them and to provide a secure future. Around the world there are many activities/centres with volunteers just for people with intellectual disabilities, but, this is not what we want for Rio, we want an inclusive world for him, not for him to be segregated from society within a hierarchy system; realistically, the number of true fully ‘inclusive’ activities/places/schools are limited globally (hence why we try to create inclusive activities for community ourselves). Rio knows lots of people, but he has a limited true friend circle. For nearly every single day for the past 18 years, wherever we have been in the world, I have experienced daily fights or battles for the most simplest of things on so many levels, in respect to his equal human rights, to the point I am absolutely drained and tired. These are just some of the reasons why I feel I fail him, but I will never give up though, as I have to be his voice to stand up for his rights, when he can’t do it himself.
Rio cannot talk or express to tell me if anyone has hurt him in any way, he would not be able to defend himself if anyone mistreated him; so to keep him protected, I have a rule, that I will not leave him in the care of anyone apart from trusted family/friends/people I have personally vetted and trained - I have little trust on people I don’t know to be in charge of his care, when he can’t tell me himself of any wrong doing. If I am not with him then I always have other eyes and ears there to keep him safe. That does not mean that I don’t allow him to be independent, I do my upmost to step away as much as possible to give him his natural teenage freedom from an overbearing mother and we constantly work on his independence skills, but I also do my absolute best to keep him safe. This may sound too overprotective, but, I know of far too many reported abusive situations happening globally to people with intellectual disabilities, that my trust has been lost, and, to me it is not worth the risk, with my one job to keep him safe. To guarantee this, I have had to give up a huge part of my life and identity and independence to give him the life he deserves to live and to be safe (to the best of my ability). SO what happens when I am not here anymore to guarantee this continues?
As a parent, you want your children to live a long, healthy, happy life. It is just unimaginable that your children should pass before you. I have very close family and friends that have lost their children far too early, it is beyond unthinkable, painful and seems so wrong and unfair in how we think about the natural cycle of life.
So to have the thoughts I have, knowing this, gives me pure guilt.
The confession: I know my son’s life has so much worth, meaning and value, to himself and others; so my biggest wish is that he lives a very long, healthy, happy, positive life, … but, I do not want him to outlive me. I want him to live to a good, old age, having a fulfilled life, but I do not want him to have the pain of losing me first, as I truly don’t believe he would cope or survive in this world, without me protecting him. I would rather that I be the one to suffer the excruciating unfair pain of grief and loss, than him struggling and confused by why I am not there anymore, and then trying to survive in a world that still often appears cold and very prejudiced towards people with intellectual disabilities.
So, in theory, to naturally outlive him, this means that I have to live to a very, very old age (and still be capable to look after him, change his nappies, lift him, manage his seizures, etc) or just gain a superpower to be immortal!
Yes, I know, this is all unrealistic and selfish and something I have absolutely no control over; but to be in denial that I will outlive him is also a case of a survival thought process technique to get me through every day of having pure fear of his future, of one day him being alone in this world without me protecting him and looking after him.
Yes, I know that he has his sister, Tia, but I never want her to feel ‘expected’ that she has to take on the responsibility of his full time care after I have gone. I know she naturally will, being the amazing sister and soul that she is, but I still cannot expect her to give up her own life for him as I have done - that is too much to ask of anyone; she has her own life to lead too.
Yes, I know, there is also his dad, Nick; but in my denial, unrealistic, masterplan of daily survival, I have naturally outlived him too (please don’t tell him!), so he is out of the equation of a long term solution in my messed up mind.
Institutional care is not an option for us/him (for many reasons, and is a post in itself for another time).
So, what would happen to Rio? … I have no realistic answers and it petrifies me.
I know there are families on this similar journey that do have a great organised, legal, financial/care long-term plan sorted, but there are also MANY families in the same situation, who aren’t as fortunate to be able to do the same, and like us have the same fears and no answers too.
With this unrealistic, in denial, survival thought process technique, you would then think I would prioritise my own health and care (physically and mentally) to somewhat help guarantee this outcome more … but I don’t, I am exhausted.
So, to go for a routine check up last November, to then needing a mammogram, to a biopsy, and then a lumpectomy surgery a few weeks ago and now having daily radiotherapy treatment for 4 weeks, has put a spanner in my masterplan of immortality!
I am not looking for sympathy or concern, as its truly not needed, as I am sure I am completely fine; present treatment I guess is more a preventive measure now and I am in great hands of a wonderful medical team. I have a stubbornness, where I just think, “Well it can’t even be an option for me to be really ill now, never mind die; there is no time for this!” … but it does make me face the scary reality that my masterplan is faulty.
I am VERY grateful that the concerns were found early (I am lucky) and for the treatment that I have been receiving (denied to many), and knowing ‘why’ it’s necessary treatment, but, I have also been very irritated by the inconvenience and disruption to my life it has caused, and, very frustrated by my apparent lack of superpowers - to be able to plan and fulfil new logistics of the past 4 weeks, having to daily look after Rio, homeschool Tia, do TAW work, do the norm daily life stuff, fit in my support role at an Ironman race for Rio, organise community, inclusive TAW activities AND a daily visit to the hospital for radiotherapy (with its side effects).
The whole situation has made me feel vulnerable, knowing I can’t do it all, having to ask for help (help for me, which I hate asking for, with a feeling of not being worthy or failing yet again). I am hugely thankful to all those that have helped, offered help and checking in on me - thank you from the bottom of my heart!
I know millions of people have been or are going through this and under much more far distressing, serious, situations; so, in comparison to others, and with other dreadful situations happening in the world, I know how incredibly lucky I am. I am fine and I will figure it out, just another human moment of being overwhelmed and thinking “what the f …?”.
My mother, when she was 49 years old, they found she had pancreatic cancer, they gave her 2 weeks to live and she died 2 weeks later; so reaching closer to her age when she died and facing my present situation, it has made me face reality …. and I don’t like it.
I guess the purpose of this post is that when you are put in situations like this, it makes you put life into perspective. It makes me face facts, that just maybe, my unrealistic survival masterplan of immortality, is actually very possibly, very unrealistic - especially if I never prioritise myself (yes, I can hear myself and sarcastically laugh at myself, for my choice of controlling denial). It makes me face my worst, darkest fear (and leaving Rio is truly mine) and it becomes moments of panic when there seems to be no solution to the fear and completely out of my control.
I know I should try to make more time for myself and my own heath. I do know this, but HOW to do this, I have no idea (and my previous life job was partly to harass/inform people on just this). I often get lectured by many who say ‘I should do this or do that’; I truly do know all this, but, I would love them to see my schedule, my families schedule, my bank balance and the energy levels that I have remaining at the end of the day, and then tell me how! These are not excuses, as many so called expert gurus will say, who say this without living one hour in the same shoes. There are many like me; they need the community support, helping hand, listening ear, empathy … not the patronising lecture (that they already know)!
Maybe another way to relieve some of my fear, is to change the world! (Yep, I have now gone from one unrealistic masterplan to another, but hear me out).
Change with inclusion and accessibility I know is happening, but it is not yet enough and is not happening fast enough for me. I have been observing the changes in inclusion throughout my own lifetime (as I also have an older sister who is visually impaired/blind; since I was a child, I have witnessed areas of life that is not accessible for all and could never understand why) and I need it to happen quicker, like it is for other minority groups. It is all taking far too long.
My wish is that I lived in a truly more inclusive world, where EVERYONE is treated with equity and community was a REAL community looking out/after each other; where people saw that we are in this journey together, not each for their own - a real community of togetherness. A world where I did not have to fear dying before my child, knowing that he may be left lost, scared, vulnerable and hurt within a world system that sometimes seems unjust, unfair, cruel, unsafe, prejudice with many dubious, wrong morals and ethics happening.
I know that there are many incredible experts and organisations out there doing amazing, wonderful work for inclusion and accessibility, people doing kind acts and all helping to make great change, for which I am SO grateful; but I also know, hear, see, read and witness the other side of society, the major flaws where not enough to protect an inclusive world is happening. As I said, I fight that fight every single day for inclusion and accessibility within the world on so many simple layers of life, just for my own son; to the point I am exhausted and again doubt my wish for change may just be another unrealistic, delusional, masterplan; maybe just another survival thought process technique of denial to get through each day of worry.
If big change is to happen in my lifetime, then it needs to happen quicker, for me to feel safe leaving Rio.
I have truly done my best to empower my children. If I died tomorrow I know my daughter would be devastated and in emotional pain, but I also strongly believe she would emotionally heal, be taken care of, she would cope, thrive, strive, be embraced by the community of the world and have an equal opportunity to succeed in life; as that is the natural progression cycle of life, which the majority of us go through, by losing a parent and surviving ourselves … but for my son with intellectual disabilities, I am not so convinced and trusting of the world community (from what I see) to inherit his needs and care after I pass, I don’t believe he would be safe.
What sort of world community do we live in, when there are parents who are petrified to die before their children (even grow up children), for their children’s basic safety?
When they say “It takes a village …” where is this village, I need to move there with Rio, then maybe I would feel safe leaving him!
I seem to have made this about me, which was not my intention, but sometime sharing your truth can help others. There is a bigger picture here; I am not the only one feeling this way. I know I do not speak for everyone, as not all mums on a similar journey feel the same and maybe have a plan of action in place, BUT, I also definitely know that I am not alone with these feeling, and, that many of us have the same big, daily fear “What happens to my child after I am gone?”.
It is ok to tell us that we must plan ahead, but sometimes there are actually no possible practical answers nor financial solutions to this and it is beyond scary; knowing the reality of how the world still treats people with intellectual disabilities, especially those not protected by their family … the topic sometimes feels like another giant pink elephant in the room that no one wants to discuss. So, to those feeling the same as me, you are NOT alone … I hear you .. I wish I had an answer to give you comfort (I know I need it).
I guess this is the real personal drive behind Team AngelWolf, to help more in the process of creating a world community that is inclusive; as I don’t feel safe leaving my son in a world that often still seems very segregated and prejudice.
So, please help me to make my fear of leaving my son less of a worry; make me believe in the power and nurture of real community, so I can have more realistic trust, knowing and comfort. Millions of others need this hope too, not just me.
Many governments around the world have already provided great frameworks and guidelines to enable inclusion and accessibility, so maybe sometimes the problem is not always with ’them’ but sometimes with us … us as individuals in community or in businesses that do not follow 'it' (the framework/guidelines) through, do not prioritise it and see it or ‘us’ (person with disabilities and their families) as a burden/inconvenience.
We ALL have a role and responsibility in making this world more inclusive and accessible, we can do this as individuals united together as community doing the right thing in life, it is powerful; we don’t need to wait until it is provided for us, we can all make it happen together … now, today.
What small thing can YOU do today (be it in your work, your friend network, your family, your social activities, your school, your community, etc) to make life truly more inclusive and accessible for all, where no one is left out, everyone is included, everyone is equal and everyone is treated with equity?
TOGETHER let’s change the world; let’s be the catalysing agents of sustainable social impact by erasing the lines of exclusion in community; join me on my mission, let us pave the way forward!