Not so long ago, I wrote a piece about being a friend to “one of us”…you know, the parent of a child who has a life-limiting illness or a special need. As I mentioned there, it isn’t always easy having us as a friend. But, we are worth it! And as they say, all things worth while take some work. So, there are some things that we want our family and friends to understand about us, and especially those of us that are single parents.
We REALLY NEED you to hear this. Not just want you to hear. We need you to hear.
We are often lonely. And not just the kind of lonely one feels when they are in the house alone while the kids are at school and you find yourself not knowing what to do with your time. That’s not it. You see, we are alone. Really alone. No partner to lean on. No partner to share the weight of this often exhausting journey. Many of us don’t work outside the home because it’s impossible to keep a job when you have no spouse or family or a special needs daycare to rely on. That means we may not have talked to another adult in a day or two, and that can leave us feeling very removed from the world. And then when our long day is done and we go to bed, we don’t have the comfort of hearing our partner even breathing in and out in that reassuring way that says “I’m right next to you. Always.” Instead, when we go to bed, we hear the sound of the baby monitor that is telling us if our child, who is likely well beyond the age of a baby, is gagging or coughing or crying or having a seizure or if one of the alarms on the medical equipment is sounding. And in that moment as we lay in bed alone with the grey noise of the monitor at our bedside, we wonder will there one day be someone who could want to share this grey noise with me? And sleep takes hold…until across the monitor a noise comes to tell us sleep won’t be ours just yet.
We don’t get out much…if at all. Many of us have single friends, even friends who are single parents. They can usually find someone to mind their child without any problems and out on the town for a night of fun with friends they go. And when they do, they can even have a drink or two too many if they want because the kids are safe at home being minded. Insert “one of us” into this scenario. There isn’t anyone we can just ring and ask to mind our child with a life-limiting condition at the drop of a hat. Correction: there isn’t usually anyone we can ring to mind that child even with a month’s notice because that person usually must be a nurse. If it’s not covered by insurance of some form, that’s an expensive proposition, especially for the single parent. But say we get out…miracles do happen once in awhile…and the drinks are being served. Tempting! After all, we are stressed up to our eyeballs and the release would be great! But, no. We can’t. In the back of our mind we know that our mobile could ring any moment saying our child is having a seizure or our child is vomiting all his feeds again or…you name it. So what do we do? Side with reason, usually. And back to feeling like a social outcast we go.
We often use social media to connect. Yeah, that often dreaded, annoying tool of modern society that is social media. Remember, we are alone, lonely, and not getting out much if at all. So, here sits the laptop and that means friends at our fingertips! And while social media is often annoying, for us it is a real blessing. We get to chat with other parents like us…”one of us”…and it brings a semblance of normality to the way we live.
So, friends, this is what we really need you to hear: We need those of you who are not “one of us” as well. We need that semblance of normality! And we need you to not ignore us when we do give a good rant on facebook about feeding pumps or seizures or IEP meetings, or when we tell the world on social media how depressed or how lonely we are feeling (because, we ARE feeling that way. We really are not just seeking attention. We are seeking the comfort of friends). This is precisely when we need you to check in on us, to see if we are ok, to ask if we need to talk. We use this tool to reach out to you because frankly it’s often the only one we have…or, sometimes it’s the only way we feel safe expressing our feelings and needs so we don’t run the risk that our hope for friendship and connection will be rejected actually face to face. But we do need that face to face time. We do need friends to just drop in and check on us.
Let us know we aren’t as alone as we feel.
PS: please don’t forget to bring the chocolate and the wine.
any time you are in the UK …………
xx
I have just found this and need to vent. I am a single mum to a gorgeous 9 year old with dyspraxia and speech and language and processing. She has just been accepted at a specialist school which has taken over a year of fighting for by me ! I suffer from Gad and have one bad day after another. I have no friends and as such my daughter has no real friendahips out of school. The reason I am so isolated is because I was in an abusive relationship with her Dad. I plucked the courage to leave as I didnt want my beautiful little girl with a big heart but terrible temper to thing that men should abuse you. My punishment I have lost my job, my health and my daughter doeant like me as her crappy Dad has cyt all contact with her as a punishment to me. So now I have no money and soon will be in debt. I can only work 10 hours as I have noone to look after take my daughter to and from school. Go out is that a joke. Share some time with a friend whats that. Have my little girl not look at me and be so angry. All I ever wanted was to have a nice home with a nice job and a happy little girl. Sometimes when you think you are doing things for the best it gies very very wrong. Now I have to try and pick myself up and fight on. My car that is very old worth about £200 but is my lifeline and what I paid £150 for last mo th to keep on the road has decided that it wants to play up again today as I had planned to takr her to the beach tomorrow. I will not be beaten no matter how much people try one day me and my beautiful girl will have a home of our own and I will have a better job and most importantly my beauty will get the correct schooling to help her feel a sense of achievement and a happy life
Reading your blog tonight has touched my heart and soul in a way I didn’t expect. My almost three year old has autism and a seizure disorder and I also have a typical 5 year old daughter. You are so strong and your children are so blessed to have you! Thank you for sharing your story.
I wrote in my journal about this exact thing two nights ago – though not as beautifully and articulately as you did. I was a bit rushed by frustration and a bit of self pity, you see. My sister was visiting after not seeing each other in five years; we live 1800 miles apart. She was offended by my exhaustion at not being able to spend all day shopping (I’m also 11 years older than she is), annoyed at the constant interruptions from doctors, caregivers, Regional Center agency and staffing agency. I have incurred a number of serious injuries from my daughter’s care and cashed in my only retirement policy to take the state to court to provide assistance – that is very hard to keep because of the complexity and severity of my daughter’s medical and behavioral issues. She quizzed the caregivers as to whether Carrie was “really as difficult” as I made her out to be – I sedated the hell out of her just so my sister wouldn’t see how aggressive she often is! She then proceeded to discuss her physical problems (she does have serious autoimmune problems) in a manner that ended up sounding like a competition. I’ve had a peripheral spinal cord injury that has already required decompressions and fusions, currently have a dislocated shoulder that has been put on hold due to Carrie’s upcoming surgery, a hip replacement, and pelvic floor prolapse that led to five surgeries and sepsis i almost didn’t survive. My sister is aware of all this but continually pressured me to accompany she and my niece on their day long excursions, saying she was probably in worse pain than I, but has just learned to live with it. I gave her the keys to my car, told her she was stronger and braver than I am – and that I was going home to take a pain killer, a nap, and possibly even some anxiety medication. What I really did was go home and sob, feel inadequate, and write about the depth of loneliness and isolation I felt as a single mother of an adult child with a rare and catastrophic disability I’d dealt with for 28 years, all the while raising 3 other children close in age because their father couldn’t cope. You are so right in the uniqueness of our loneliness. It’s like an appendage or extra internal organ that presses painfully on all the others. I was so grateful to read your piece and not feel I’m just a wimp. You cannot know this life unless you live it, and while all the accolades are certainly well intended, they usually feel like an expression of extreme relief on the part of the speaker that “there but for the grace of God go I.” Thanks for letting me vent – and my apologies for any typos; just writing this left me too drained to proofread. God bless us. 💖
Loneliness by raising a severely autistic child and one with Asperger is terribly lonely as a single parent. It’s even harder as the severely autistic child gets older he is 12 now. The loneliness is unbearable. How I wish my life was normal again and a partner to talk to. It is hard watching normal families doing normal things. I love my children but the loneliness becomes unbearable. I feel that my life will always be like this. Alone No one wants to help raise a severe autistic child. I have spent many years alone with this. I could handle this so much better if I did have a partner to bring some normalcy in my life just to talk to. It helps to know other women are in my position.
wow.That is exactly how i feel and what im going through.Just knowing that someone out there understands is comforting.I am a single mother of a 7 year old daughter who has spina bifida,a brain condition (grey matter),epilepsy and bilateral hand contractures.I am extremely lonely and have lost many “friends” and have quiet a few family members or parents at my daughters school rolling their eyes or making negative comments or remarks in regard to me always cancelling plans,play dates or not being able to make it to a birthday party.As much as i have explained to everyone repeatedly that every week we attend spina bifida clinics,physio,OT,neurologist,specialist paediatrician,hand clinic,MRI’s,ultrasounds,blood tests ect.Also me being called to the school when my daughters having a seizure,that i rarely sleep at night because everytime my daughter makes a noise or moves im jumping up to check that shes not having a seizure.The majority of the time my daughter and i are absolutely exhausted.For some reason people dont understand that.I dont think ive had any of those people turn up to the hospital when my daughter is there due to seizures or ever had someone to give me a hug and say your doing well and i see your both giving your all.As much as people say theyre here to support us,there really is no support.I really dont think anyone will ever understand what its like to raise a sick child unless you are dealing with it yourself.
I feel alone, I have two adult special needs children with cognitive disabilities and both have seizures. I also have to cancel and miss plans with family and friends due to seizures and numerous doctor appointments. I get depressed watching other families and couples and wonder why? Don’t get me wrong I love my children and wouldn’t trade them for anything, but I wonder why them?