I Don’t Want To Be An Autism Parent Anymore

*Preface: have you ever felt overwhelmed with life? I have. Of course I love my son with all my heart, I should never need to even justify that, but living with a child with severe autism is hard. I do not need threats made to my life or my child’s because I find some days hard. Comments like that will not be approved.

And for the record I don’t always feel like this but I am human and some days this is exactly how it is. *
The day started far too early. There was no sweet cuddles in bed or a little voice asking for a drink; no I was woken as usual by screaming. I have had day after day, month after month, year after year of being woken by screaming and I don’t want that anymore.

I don’t want to wake up to a smell that would make you want to vomit and bedding that is fit for the bin more than the washing machine, because yet again it is covered in something that ought not to be seen by anyone else. I am so tired of that now.

I don’t want to sit on my couch in the middle of the night looking at my child and wondering what I did to have a child who sees no point in sleeping, who at 8 still can’t say ‘mama’ and who still thinks the world revolves around his needs only.

I love him more than words could ever convey but I don’t want to be an autism mum anymore. 

I want to be a mum who has fun with her child rather than doing therapy with them.

I want to walk my son to school and talk to his friends instead of sending him in a taxi to a place where I am a stranger to them.

I want to be able to talk to my child about the fact it is his birthday soon and discuss what he would like to do to mark that day.

I want to be someone who takes my child to bowling, teaches them to ride a bike or even goes to the movies with them. Instead the only place I ever take him to is hospitals or respite.

I am tired of missing out on everything. I am tired of never having party invites, knowing nothing about his day at school, having to still dress him, having to take adult nappies and wipes with me wherever I go.

I don’t want to be an autism parent anymore.

I am tired of holding my child as he screams in public again.

I am tired of the never ending judgement, the stares and the horrid comments.

I am am tired of carrying around my broken heart as a result of the interventions and therapies having achieved nothing.

I simply can not bear the thought of my child as an adult knowing what society is like.

I am tired of meetings.

I am tired of phone calls from his school.

I am tired of fighting for everything but then being accused as having an attitude or people thinking I act like I am entitled. 

I don’t want my child to have autism anymore. This is not a ‘different way of seeing the world’ that he has, or ‘a wonderful gift’. This is a child about to be 9 years old who can not say ‘mum’ or use a bathroom himself. This is a child almost my height who still can’t put his own clothes on, brush his own teeth or dry himself after a bath. This is a child who can never ever be left alone, who has to have everything the same all the time, who self harms and wanders. This is a child still with the mind of a toddler who will require others to look after him his entire life.

Who would want that for their child?

Who would want that as a parent?

Today I don’t want to be an autism parent any more.

The problem is I have no choice.

So I strip that bed, bath that child, cook him that breakfast as I always do and let him sit on my knee while he rewinds the same ten seconds of video on you tube he did yesterday and the day before that and the day before that.

Nothing changes much in my house, except my feelings. 

Today I am tired. I don’t want to be an autism parent today the same way any other parent may feel about not wanting to be the mum of a toddler who tantrums daily or a baby who has reflux or the partner to someone with Alzheimer’s. We all have days when we are just down about the life we have.

Yet we carry on. We dust ourselves down, search for some positives or listen to some music.

Tomorrow is a new day. It will probably start off with screaming again too., but maybe tomorrow I will be stronger, more hopeful, more upbeat.

Maybe tomorrow I will want to be the autism parent I need to be. 

Maybe tomorrow. 

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303 thoughts on “I Don’t Want To Be An Autism Parent Anymore

  1. Autism dad here… feeling overwhelmed as my day started with another battle. Again. Over something so simple…

    After the battle was done, and my marriage took yet another body blow, I read your post. You are not alone, and after reading your words, neither am I.

    Both of us will carry on, love our children, and keep on fighting the battles. It feels good to read and write about our frustrations. I admire your courage to speak out about yours.

    Liked by 2 people

  2. Omg i no how you feel its not easy been a parent with a child with autism but as parents we are all they have and they dont no any better they depend on us because they are our kids and because we love them unconditionally i as a parent with a son with autism i never signed up for this i wasnt prepared for it but my god i battled and i am still doing so, but he is 11 now and much better but still has his melt downs still depends on me for everything he has a rare muscle condition, scoliosis ,ulcerative colitis , and im exhausted i sitting in my pjs because im to tired to shower and get dressed my son is on a lot if meds as well which breaks my heart im in and out od Crumlin hospital in dublin, Temple street Dublin and the cork university hospital as well so i no how exhausting it us but keep doing what ur doing you are an amazing mum keep fighting the fight im right by ur side on this one. I will sign of now but remember make time for you to thats very important as well gid bless you and mind urself.

    Liked by 1 person

  3. Omg i no how you feel its not easy been a parent with a child with autism but as parents we are all they have and they dont no any better they depend on us because they are our kids and because we love them unconditionally i as a parent with a son with autism i never signed up for this i wasnt prepared for it but my god i battled and i am still doing so, but he is 11 now and much better but still has his melt downs still depends on me for everything he has a rare muscle condition, scoliosis ,ulcerative colitis , and im exhausted i sitting in my pjs because im to tired to shower and get dressed my son is on a lot if meds as well which breaks my heart im in and out od Crumlin hospital in dublin, Temple street Dublin and the cork university hospital as well so i no how exhausting it us but keep doing what ur doing you are an amazing mum keep fighting the fight im right by ur side on this one. I will sign of now but remember make time for you to thats very important as well god bless you and mind urself.

    Liked by 3 people

  4. I so understand and is exactly why I found your post. I want to give my ex full custody even though my son will not benefit because it’s to the point I’m done. Maybe when I wake I will find new strength again.

    Liked by 2 people

  5. I have two autistic children who are on the upper end of the spectrum, they can do a lot of the stuff you say your son cannot. My oldest has ODD on top of it all and the youngest has a very low threshold for frustration. I’m there too, I know there are people who have it much harder than me, and you know what? It still doesn’t make it easier to deal with the constant fights and struggles. I have no real support system and they both or “okay” enough that they get no additional help from the county. My oldest was denied twice. So, no respite, we can’t afford therapy. So we suffer, and have no friends, because who understands this? The people who do aren’t going to be able to help because they have similar situations. Thank you for your words. At least I know I’m not alone in my depression.

    Liked by 3 people

  6. Thank you for saying exactly what I’ve been thinking and feeling for awhile now. My ASD child is nowhere near as severe as yours but she hates me and tells me on a daily, hourly and minutely basis most days. I am sick of spending 90% of my parenting on the one child (I have 3) who will never recognise or reciprocate my feelings, who swears at me and calls me a f**king b**ch more than mum. I work with special needs children everyday so I feel like even when I’m home, I’m still working, except I can’t hand over to another staff member if it get too much. I have a child that has no connection to me in any way but I spend most of my time catering to her needs at the expensive of my own and my other children. Autism makes me feel like a failure every single day and I also don’t have another choice but to get up and do it all again tomorrow.

    Liked by 1 person

  7. I feel this way at times. I wish…I wish I could have a conversation that does not end in an argument-everytime. I wish we could have a day of compliance where everything was yes. I wish for a day of peace from the vocals, the repetitive videos, look here, look here, look here. I wish for a day without interruptions from daily tasks and would love to finish a task from beginning to end. I wish for a day of doing for self. I wish for a day that I did not feel so guilty because I feel these feelings. I wish for a day that I could be me again. I wish for a day for my child to never have to deal with these issues. I wish therapies worked. I wish my husband cared enough to help. I wish for a day without judgement too. I wish, I wish, I wish. The journey is hard. We are chosen for it.

    Liked by 2 people

  8. What a brave post, i truely admire your openness. My daughter and step son both have ASD and it is exhausting; the daily routine and challenges you really have captured. There are many days I am positive and other days I struggle, I am with you. Socially I am met with people who just don’t understand. I feel a constant pressure to be positive, from my family, partner and friends. We are all human and there are days i am overfilled with joy and others despair. I feel like I can’t complain without having to proclaim my love for my children. Of course we love our children, but it’s still OK to find it hard. People say oh they will be fine when they get older etc etc.. the reality of daily grind is just as you describe. There are no judgements here **

    Liked by 2 people

    • You have captured my day perfectly today. This article is the reality of a lot of people with children with ASD. And yes, people make me feel like a horrible mother because I get fed up. My family and friends say they understand, but they don’t truly know what’s going on in the mind and heart of a parent to a child with autism. Today was a horrible day, and someone close to me said I don’t know why God made me a mother. Im sure it was said in the heat of anger and frustration on both our parts, but it really hurt because I already feel Im not a good enough mom to amazing little boy.

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  9. I can definitely relate. Thank you for speaking the way you feel. I will pray for you that someday you can find true peace. I’m not sure peace is in my future.

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  10. I think your article was amazing and I think you are one of the strongest people for being able to start over! I too have a son who is autistic and some days are harder than others! Gosh anyone who judges has not walked a day in your shoes! I have the most respect for your honesty! So many days I too know how you feel! Stay strong mama you are your sons world! He is very lucky!

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  11. Thank you for your lovely article which I could relate to on every level. Right now i have come out in my car and am sat in a layby just to take 5 minutes. Today is my child’s 3rd birthday! He has hated every minute. I’ve been scratched, hit, bitten and screamed at. We’ve had no visitors as he hates crowds and parties, no cake, no fuss. Just 1 banner and 1 balloon. Even that appears to have been too much. I’m learning everyday but I never seem to get it right. I’m so low today but like you I hope that tomorrow is always a better day.

    Liked by 1 person

    • Massive hugs. I was in the same place for so many years. My son will be ten in just over a week. We still have no party or fuss but I no longer get scratched or attacked. It does get better my friend xx

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  12. You’re not alone. Thank you so much for sharing your story. For years i’ve felt like no one understood my pain. My son is 8 yrs., Autistic & has ADHD. Doesn’t watch tv & his hobby is destroying things around the house. He’s violent when upset or sometimes spontaneously. He comes home with bruises from school from being restrained during his violent meltdowns. If I could have anything in the world it would be for my son to be cured of autism. I pray everyday to God to please cure my son. My son is suffering & so are we as a family. I hope your son is also cured. God bless you & your family. 💙

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  13. I meditate with my autistic son who is 12 when he makes an uncontrollable fuss. He neither stayed still nor quiet while doing sitting meditation. He scratched his hand till bleeding and wiped to the wall with blood while doing walking meditation last time.
    Although it is hard, I try to ignore his noises or mischievous acts if they do not pose danger/harm to both of us. Instead I send loving-kindness towards him in my heart or loudly if he is very uncontrollable at times.
    When he scratched that time, I managed to continue sending loving-kindness towards him for a minute or so. But soon I felt I was helpless and failure of being his mum. My tears of sadness came in front of him. It took sometime to calm myself down. But he seemed very sorry seeing me cried. At that time, I explained him the consequences of his act towards health implications and his future.
    Although he did not seem to understand everything, I explained to him the best I can.
    The situation with him improves over time but we meditate whenever all nice explanations failed in dealing with his behaviour.
    I repeat to myself “Do not despair” and I continue sending loving-kindness to him together with everyone involves in his life.
    May all parents with Autistic child and autistic children be happy, peaceful and safe. May you live with ease.
    May you be free from suffering.
    May your happiness and good fortune always increase.
    You are the true heirs of your karma and your happiness depends upon your actions and not upon my wishes for you.

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  14. I was searching google “being completely overwhelmed by my Autistic kids” and came across your story. Reading the way you are feeling sometimes is exactly how I’m feeling at the moment. I’m in tears because in reading what you wrote I saw my own life and my reality. People have no clue what we go threw. Reading stories like yours is what gives me strength to continue because I know I’m not alone. May god continue to give you strength. Peace, Love & Blessings

    Liked by 1 person

  15. I think read this 10 times tonight, and each time I cried harder and harder. This speaks to my soul tonight. I’m sitting here at 130 in the morning , yet again , with my 6 year old who will not go to sleep. I’m tired of not sleeping. I’m tired of my day feeling like it is being rewound every night and played on repeat each morning. I’m tired of things never changing. I’m tired of having to repeat everything a million times, and never seeing anything change. I’m so beyond tired. I dont understand those that say how beautiful autism is. I’m tired of struggling!! I’m just so tired!!

    Liked by 1 person

  16. My older son gives me difficult moments like I cannot breathe anymore. However, I have a 13 years old daughter and 3 years old son too. And I am so glad that I have them because they make me feel a real mother. I have goals and good experience s with them and happy moments like other normal families. You guys should have at least 2- 3kids. I know sound little crazy and scary, but trust me my husband and I am so happy that our older boy has siblings. They are great kids and with their love we are stronger and more patients to our severely autistic son…

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  17. This is absolutely beautiful. I’m sorry that you felt the need to explain yourself in the beginning. People who don’t live it will never understand. I am having one of those days, where I too don’t want to be a parent to an autistic child. But I know, like you said, tomorrow will be different. My son is 3, and I felt like you we writing about the future version of him. It was amazing to read and comforting to know that I’m not alone, as awful as that may sound, because I wouldn’t wish this on my worst enemy. For every difficult moment, every scream, every wet, dirty diaper, every thing that I can’t fix for him…. I know that there is a reason for me being his mom. I am not a religious person anymore, but I do feel that he has shown my husband, other children, and myself true happiness and love in his own way. Every smile, hug, soft touch means more to me than from anyone else, because he has to work extra hard to do these little things. He recently just started saying Mommy I never thought I would hear that one, simple word…. we celebrate every little victory….. and support one another during difficult times….. you have one of the most difficult jobs…. take good care of yourself, because you are needed so very much! ❤️

    Liked by 1 person

  18. Absolutely – so much love to you … my son is 24 and so reluctantly he is now in residential care … it’s the fight to get what they need that hurts so much,. Naively on diagnosis you think that all will hep …. but oh no … it costs money!

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  19. Am feeling the same as yourself I don’t have respite
    My family are unhelpful I don’t get 2 minutes to myself and my whole life revolves around my child I love dearly but it’s getting worse the screaming the shouting the tv on loop over and over again nappies overflow meltdown shut downs none verbal I just want her to say mummy. And I love her but it’s heartbreaking and I have to fight for everything in life

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  20. Parent of autistic child autism disorder disability learning severe impairment aggression etc and all the umbrellas that come with AUTISM I FKN HATE AUTISM NO MELATONIN WORKS NOTHING WORKS
    AND I DONE MU BEST AS A SINGLE MOTHER FOR 6 years and a toddler almost 2 years old I have another 3 older children who are rubbish selfish and put on me spend all my money. Nobody offers to help for a couple of hours I don’t no what a lie inn is am neglecting myself threw this child she is in a special needs school and I bought everything sensory even her bedroom lifted out I have no life am 36 and really hoping I could die in my sleep am so depressed my child smashes my house and myself hit me screaming at me one day I believe she will kill me broken heart I cannot help her I don’t no if OMG am in bits and need help I get no help nothing and am very very depressed

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  21. This is so honest. No hate here. I’m a full-time respite worker and I feel for you. I’ve been working for one family for 8 years and another for almost a year. You parents are warriors. I honestly don’t know how you do it day in and day out. Of course you get tired and frustrated and don’t want to do it anymore, you’re human. I’m just happy that I can offer a little bit of reprieve and never take for granted that I get to go home at the end of the day.

    Liked by 1 person

  22. I feel so selfish after reading your post. My son has outgrown the screaming before he goes to bed stage, but there were times I had to listen to his blood curdling screams while all the other children went to bed peacefully….see he is the second child of five and I had five children in five years. I was too young to have that many children at once and even now I feel as though Im not cut out to have kids let alone five of them and one with low grade Austism. He’s not high enough on the spectrum to receive help and I feel my husband and I don’t have time for him. My husband works 40 plus hrs a week and is in the military as well. I get to do all the parenting yet my husband loves to rub it in my face that I’m the one my son says he hates. I’m tired of my sons lack of communication. He has no friends and Even his youngest sibling, his 7 year old brother, corrects his speech. I feel as though I can’t help him. I try to get him involved in activities, like a robotics class after school because he loves to build things, and at the end of his course at his showcase, the other children made him keep score and wouldn’t let him participate in the actual event. I hate kids sometimes. He gets teased and my husband tells him to be aggressive, which I don’t agree with. I have gotten calls home about it. He hides things and is dishonest. I tell my husband maybe we should send him to a boarding school or something and he scoffs at me like I’m the worst person in the world…. but he doesn’t do any of the parenting….his way is just spanking them when they’re naughty, telling them to work, and ignoring them the rest of the time. I feel all alone sometimes…. I am so glad I found your post, my Google search was literally “how to love my autistic child”… It made me cry. I can’t bear the thought of having my son live with me forever, or knowing he may never be on his own. I just want a normal life for us both. Thank you so much for sharing your story, people need to know it’s okay to want to “give up”, it’s almost like forcing ourselves to take a break from the hardship.

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  23. Yes it is, i am a dady of an autistic child. Yes single. I can undrstand his frustation about being a almost motherless child. And sometimes outburst of it. But still he trying out. Yes we r all alone, but we have us you know. This us push and simetimes dragg to the path where we should be. So end of day or begening of day, only these things keep our mind alive,.and when nobody but he wrap around his hand on my neck and give a sweet kiss in my chicks, that wash all pain,frustration,heat out if my mind and help us to refuel again…

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  24. Trying to potty train our five year old son with ASD with the help of his special education therapists. The other day, he wouldn’t let me read the story with pictures they had prepared for him as the first step to potty training. No matter what reward I offered or how gently I tried to get him to just let me read it, he would hit and scratch and attack me. I gave up, sat down beside him and cried. It was one of the many moments I felt like a complete failure. I just cried and told my husband, “I just wish he was a normal little boy!” I pictured all the things normal little boys do and painfully acknowledged the lack of them in my son’s life. I know that my precious boy is a gift from God, but I often wish he wasn’t autistic. I know I can find strength with God’s help, but that doesn’t always stave off my own mental emotional breakdowns. Thank you so much for sharing your struggle with us. Only we who care for autistic children can ever understand the complicated feelings that come with parenting an autistic child. I pray God will uphold us and continue to give us grace to extend to our children.

    Liked by 1 person

  25. This is how I feel right this moment. It has been 6 years since the diagnosis, very little has improved and each day I feel like I can’t take it anymore. I am so tired… Everyday I pray for our situation to change, to experience the joy or motherhood because really, where is the joy in this?

    Liked by 1 person

  26. Autism mum here, my son turned 9 last Halloween and I whole heartedly want to thank you for your courage. You’ve said exactly what I’ve thought many many times. You are not alone, I absolutely adore my son, he’s my firstborn and I feel guilty when I think these things, but I also feel guilty for my daughter who misses out on days out, social events, and general stuff children do because I can’t take her brother. I also worry who will look after my baby boy when I’m gone. Heartbreaking for any parent. Keep your chin up. Your not alone.

    Liked by 1 person

  27. My daughter is high functioning and I still feel this way on a daily basis. The screaming, crying, running out in front of cars. I might as well be speaking a different language to her. I had her when i was 16 and i dont think ill ever let go of the guilt i have that it’s all my fault. “Maybe tomorrow.” 😥

    Liked by 1 person

  28. Pingback: AutismChallenges returns…..with a slightly new purpose. – Autism Challenges

  29. I understand. Sometimes I don’t want to live anymore because life seems unbearable, but then my guilt won’t let me give up on my son, or give him up. There is no winning. I guess I’ll rest when I’m dead.

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    • I definitely relate to this. I tried last yr but was unsuccessful. I was cutting for a while instead. I’ve been so depressed, and ironically, that seems to be making my son’s behavior worse.

      Like

  30. Thank you for being open and honest. I also am having these feelings lately and i feel like I don’t have anyone I can turn too. Being an autism mom (in my experience) has been so lonely. We’re usually confined to our home because our son os usually top unpredictable to have out in public for too long. We’re on the verge of being kicked out of yet another after school program…and my husband and I both work so i don’t know what we’ll do. We have no family, little extra money to cover the cost of interventions that insurance doesn’t cover…I’m weeping as I type this because I just feel so hopeless.

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    • To Peanut: OMG, I feel for you. I am the mum of a high needs autistic boy of 21. I’ve been through lots of anxiety, guilt and depression and am finally reaching a stage where I am learning to accept that this is my life now and it will never go, and he will never change. But, there are things we can do to try and help ourselves to get through it. I will offer some points to try and help you. You need to give yourself time. I know it is hard to do, but for your child, you do need to look after yourself. If you do not look after yourself then you will not be there for him. So really, number one is to look after yourself. Try and organise some respite. I don’t know how that works in what country you come from, but is there gov’t funded respite options? Or maybe there are local groups, church run groups or something, that he can attend and at least you can sit back and rest while he is there? The other is simply allow yourself some space for yourself in the day. Hard to do, I know, but I try and treat my caring as a job, and that I am allowed time off. I don’t need to be watching him 24/7, I can try and say, “I will deal with that later, I am having a break now.” The final thing is that you walk beside him and work with him, don’t try and force him to be someone he isn’t. Be his mentor, his guide, help him along the journey of him trying to understand the world in his own unique way.

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  31. This made me cry reading this I couldn’t of said it better myself and it breaks my heart seeing my little boy who used to be so happy with such a big beautiful smile to now I little boy who can’t understand simple daily tasks and has huge meltdowns even to go the toilet by himself and never sees enjoyment in things I feel like I’ve let him down and sometimes it makes things unbearable but I will keep going and try to make things easy for him and not so much of a constant battle that he seems to go through in his little head daily!

    Liked by 1 person

  32. Not sure if you will read this since it’s an older post, but I just want to say that I’m sending you positive thoughts. My daughter is more independent than your son, and yet I find many days where I simply repeat “I can’t do this anymore” over and over. So, if it helps even a little, please know there’s one more mom out there who totally gets it and supports you. Hugs.

    Liked by 1 person

  33. Oh how I can relate. My son is 29 now. I know exactly how you feel although my son isnt that severe. He has had issues and the pain and grief I have some days is overwhelming. Let me say this… you are amazing! You are strong even when you dont think you are. If we are all honest every one of us parents of ASD children relate. You are simply brave enough to voice it. I wish you well and offer my voice of support to you.

    Liked by 1 person

  34. Thank you so much for your inspirational story. You are a true hero and commend you for the unconditional love you have for your son. I wish the entire world could hear your story and see your love and compassion, which is what the world lacks today. Today was a tough day for me and my beautiful toddler. Despite the challenges of having a toddler son, you have reminded me on how blessed I am to hear how much he loves me every day. That should be held in my heart, and not how he didn’t listen to his coach or running off to pet a dog during T-Ball practice. Thank you for putting things in perspective. May God continue to bless you with strength and love for your son.

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  35. I can totally feel you I came here sitting in gym depressed and worried as usual and just typed my feeling “I dont want to be mother is autistic ch” child and

    Liked by 1 person

  36. I really needed to read this…how I am feeling at this very moment. I thought I was alone😢. Thank you for having the courage to write this, your courage has encouraged me to hope for a stronger tomorrow. God bless you and your family in your journey.

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  37. I feel like he’s already gone.

    I sit in his room and wait for him to come home.

    But even as he bursts through the door, I’m still left wanting something more.

    A smile is a lot to ask, but even a glance my way would count as a pass.

    He yells and kicks when we talk about his day.

    It’s too much to watch, him wrapped up in pain.

    I miss him so–who I thought he would be. I’ve tried every supplement and therapy.

    It’s not about the social side, I could care less and take that in stride.

    I just want him to see me, I want him to care, I want him to know I will always be here.

    For he is my little boy and I am his Mom. So I take another breath and continue to hold on.

    Liked by 1 person

  38. totally understandable and im sure so many mothers can relate to what you are going through everyday. you are amazing keep doing what you are doing you’re son loves you immensely for it.

    Liked by 1 person

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