Tired of being okay

Discussion in 'Coping and Compassion' started by alizesmom, Apr 11, 2018.

  1. alizesmom

    alizesmom Dreaming of Disney.

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    I'm feeling very sorry for myself. There are so many times I want to scream “I have it worse than most people “. Not true, of course, but it sure feels that way. After all, I have a roof over my head, food to eat and I can afford Disney.

    On the negative side, I’m married to a newly recovering alcoholic who still is emotionally labile. We’ve been married almost 40 years. We have had 8 children, 4 birth and 4 adopted. Our adopted children have all been medically fragile and we lost one son at age 6 and another son at age 9.

    Our 11 yr old son was a shaken baby and functions as a very young infant. He is total care, blind, has seizures and recently started having adrenal insufficiency when sick. He also has a tracheotomy and uses a ventilator at night. Our 12 yr old daughter has an undiscovered genetic problem with multiple medical issues. She also uses a ventilator at night. Neither child can eat by mouth.

    The worst is our daughter’s autism which is most often characterized by punching herself in the face and/or aggressive behavior. We have been punched, pinched, kicked and head butted not to mention a lot of hair pulling. She also asks the same thing over and over (using some rudimentary sign language) and this can go on for hours. She seems to find sleep to be optional despite medication. Recently she went 4 days without sleep.

    We’re supposed to have nurses at night so we can sleep but in the last 6 months staffing has been poor and we have to stay up.

    In the pst few years one granddaughter was diagnosed with leukemia and her little brother was diagnosed with juvenile diabetes. I’ve been recently diagnosed with arthritis.

    I’m tired, I’ve ended up isolated as family and friends feel unable to cope with our continued drama and I’m sick of answering the question “how are you?” With a smile and the word fine.

    Thanks for listening to my complaining.
     
    Last edited: Apr 11, 2018
  2. MommyinHonduras

    MommyinHonduras DIS Veteran

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    Hey, I hear you. Is that your son in your photo? I live in Honduras, there are people all around with literally nothing but I have these moments too. We have a special needs son. It's hard, and exhausting. Worth it but did I say hard.
     
    Thrillhouse and Shanti like this.
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  4. Shanti

    Shanti Momketeer

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    I'm sorry you've having a hard day. May God bless you.
     
  5. mommasita

    mommasita DIS VETERAN Moderator

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    My goodness you have more than a full plate . I would most definitely take time out to feel sorry fir myself. Giant hugs to you, that seems like so much.

    I get the smile and fine part, I’ve become an expert at it.

    I do wish you had more help. Please feel free to vent away, sometimes it does good to let it out .

    Sending love and strength
     
  6. AnnaS

    AnnaS DIS Sponsoor/Veteran

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    :grouphug:It's okay to complain, be frustrated, be down certain days/moments. Vent away.........you do have a lot on your plate.
     
  7. MommyinHonduras

    MommyinHonduras DIS Veteran

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    I see you updated your post after my original comment. Thank you for sharing more. I have 8 kids. 4 natural and 4 adopted (or in process I should say) and two more we fostered and lost in very sad ways to bio parents. I do have a husband that is not overcoming alcohol but we have both had our issues in coping with really hard things. There are days siste! God is all that keeps us able to put one foot in front of the other. He sees and knows and never wants you to be just "fine". Please vent here if you want, I know your heart and brave face, please ask for help where you can, it's not easy but those kids are worth it and your willingness to be their mom is amazing and hearwrenchingly hard. Heaven sees and remembers.
     
  8. alizesmom

    alizesmom Dreaming of Disney.

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    Thanks to all.
     

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