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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,
    CarolReplyCancel

  • March 25, 2017 - 10:20 pm

    Heather - I’m trying to decide what to say, because I have walked this path. All five of our kids have been diagnosed with PANDAS. Some worse than others, bug all five. So I get it. Keep walking, mom. Keep walking, dad. It’s a hard road Find friends on line who get it, and who will pray. In fact, anyone who will pray should become your friend, even if they don’t get it. Take any prayer you’re offered, because it’s key, in my experience. I’ll tell you one thing which may encourage you. Our oldest PANDA has a life. He’s graduated from college and is married our second PANDA has Lyme (as do most of the worst cases, in my experience) and he’s living on his own, but us not well. The next three are all doing pretty well, in general. We still have days or seasons which are weird and hard, but there’s been a lot of progress. I know that today this may not help much. But I’ll be praying for you, and I’ll be your friend, if you want!ReplyCancel

  • March 29, 2017 - 2:59 am

    Shirley Turner - I am a grandmother of a remarkable boy that has been cursed with PANDAS. Once an outgoing, caring, sensitive boy, he has changed in personality and confidence. The hell he is going through should never, ever be placed upon a child. My heart is broken for him, and I feel as if his young childhood has been totally compromised. I also worry about the safety of my daughter during his rages brought on by his frustration of not being able to control his OCD, his mind and his actions. She is also tired of the sleepless nights from him not being able to sleep. She has total parental support, but she feels as if few outside of our circle understand the severity of this disease. I abhor the doctors who are too closed minded in their mundane practices to research this disease. Moms, I pray for all of you.ReplyCancel

  • March 31, 2017 - 6:12 pm

    Julie - Lucy, I’m sorry your hours/days/weeks are rough. My DD7 has PANDAS, we are currently awaiting an appointment with a specialist to get her treated. It’s a lonely road whrn others don’t understand. I get the parenting comments also when she melts down, steals stuff, won’t follow directions at school, etc. My heart goes out to you.ReplyCancel

  • April 2, 2017 - 9:55 pm

    Crystal W - I hope that the treatment your daughter is getting will heal her, I had never heard of PANDAS, until I read it on your instagram and I work in healthcare , so I got online and researched it , I will pray for you and your family daily I can only hope that this gets better soon, continue to be as strong and supporting mama as you can be for your child, one day she will look back on this and thank you for all that you have done and sacrificed for her! You are strong and beautiful , keep your head held high and try your best to see the best in the worst situations! ❤️ReplyCancel

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