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The raw face of pain

I am tired and I am hurt.

I have sacrificed everything and do everything for a child who curses me and hits me.

My entire life has been hijacked and turned upside down because of this disease.

I am constantly judged in public by strangers when my child acts out because she looks “normal” so it must just be my parenting and there needs to be more discipline so she doesn’t act like that.

I am tired of not being able to spend time with my other daughter because the second I do, she flips out that my life isn’t all about her.

I am tired because for the past year my husband and I haven’t hardly slept in the same bed because of her night terrors and separation anxiety.

I am tired of friends not reaching out and disappearing because it is awkward to talk about. Me: “How’s it going?” Friend: “Great, my daughter made the honor roll and is doing great; how about you?” Me: “Well, my child didn’t commit suicide today so I will say it was succussful.” That’s not a conversation people want to have or are comfortable with unless you’ve walked these paths.

It is hard for me to answer you when you ask me how I am doing. I don’t want to be negative but I also don’t want to be fake either.

I am tired of family who isn’t supportive and doesn’t reach out or act like they care.

I am tired of my husband feeling let down because he doesn’t have that support.

I am tired of researching until all hours of the night so I can find the solution for my daughter to get out of this living hell.

I am tired of people who are close to us asking what PANDAS is. Please, if you care about us, do your research.

I am tired of feeling like I don’t think I can go on another day.

I am tired of feeling tired. Physically, mentally and emotionally.

This is the tired face and words of a momma doing the best she can for herself and her daughter who has PANDAS.

  • March 24, 2017 - 11:16 pm

    rebekah - I’m sorry you’re having such an incredibly, difficult time. People do question parenting when children seem out of control. I had that happen to me many, many times with my child when she had ADHD and oppositional defiance disorder.I went years with an older child that slept 5 hours or less a day and every day was filled with tantrums, screaming and really awful disobedience. It was hard. It was impossible. I also felt angry when people acted like I was embellishing the facts or that it wasn’t even really a thing. Every day and night was so, so hard. I hope your daughter heals soon and you get all the support and answers you need.ReplyCancel

  • March 24, 2017 - 11:32 pm

    Frank Kudlac - You and your family are in our prayers – The KudlacsReplyCancel

  • March 25, 2017 - 12:18 am

    Marilyn Roseboro - No one never ever knows,why you go through things, but this I do know when this over you’ll have a TESTIMONY. A TESTIMONY, how God brought you and your
    family from dark to light. How God healed your sweet baby. You see the enemy wants you to focus on the bad, but you have to have faith like Job, that God will bring you through. Don’t worry about the friends that’s not there for you, they were never truly your friend.. I been through some storm too, I had to learn look for the good in the bad times.Remember Job loss everything in a day. So on those days you think you can’t make it look to God . Seek him through prayer surround yourself with positive thinking people. When you need a break don’t be afraid to ask for help . May God bless you and your family. I pray in JESUS NAME HEALING FOR ELLIE.ReplyCancel

  • March 25, 2017 - 12:29 am

    Chrissy Thomes - Lucy, I offer my love, my support, and my understanding. While I do not have a child with PANDAS, I taught a child with it and I understand some of the difficulties you’re struggling with. Children with mental and emotional disorders suffer a great deal, and their parents do, especially. I know we only know each other through friends of friends at the same school, but if there’s anything I can ever do, please let me know. If you want to email me, I’ll give you my phone number and we can text or chat just whenever you need to or feel like it. And I mean this! Just breathe, honey…breathe. And know you’re doing great because you’re doing the best you can. You are an outstanding mom. Anyone that doesn’t see that is blind.ReplyCancel

  • March 25, 2017 - 12:31 am

    Julie Gaddy - Dear, Dear Lucy. My heart cries out for you and your family to feel some peace. I do not exactly know your journey; however, Rachel’s youngest son had very serious acting out when he was growing up. He is developmentally delayed and has epilepsy, and we think that some of his issues was his inability to express his feelings in any way other than lashing out. So many times he has thrown his shoe or another object from the back seat as I was driving. So many times he has literally knocked everything off a table in rage. It got to the point that they couldn’t take him anywhere, so they stayed at home. The family unit was wrecked. Thankfully, with excellent doctors and teachers, some of his issues have assuaged. No, we didn’t live with PANDAS, but in a small way, Rachel and I do understand your feelings of utter tiredness and aloneness and hatred for the cards we were dealt. Please, please continue to reach out to other families walking the PANDAS journey. Any tiny hint of understanding from them will be a mountain of understanding for you. Continuing to pray for you and your family daily. Push on, sweet girl. You will never regret it.ReplyCancel

  • March 25, 2017 - 12:50 am

    the hamm fam - if y’all ever need anything, give us a call. we’d be happy to help out.ReplyCancel

  • March 25, 2017 - 1:21 am

    Shannon & JJ - We love you. No idea what this is like for you guys. The best we can do is pray for each one of you. ((Hugs))ReplyCancel

  • March 25, 2017 - 2:53 am

    Carol Featherstone - Lucy,
    I am so very sorry that both of you are going through this! I wish I was closer to you and that I could help in some small way! People have no idea what it’s like to go through diseases that most people do not understand!

    I will certainly keep you in my prayers and ask Gods hand in making things easier in your life!

    I love you sweet lady,

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