Chiari Sister, I See You

As a stay at home mom, I frequently think about other moms that are in my position. It’s no secret that the stay at home parent doesn’t get enough credit. The day to day seems lost in translation to many, except the one living it. And often we need the reassurance, because as mothers – humans, we want to be seen and loved.

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Whether you have Chiari Malformation + Syringomyelia or any other illness that physically impairs you from feeling your best, know that you are doing your very best. I often compare myself to the wrong people, to those that don’t have physical pain and not needing to be medicated for pain relief.

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As for the stay at home parent living with chronic pain though, the day to day is different and is a tiny bit more challenging. And for me, the physical pain can cause me to have self-doubt, so today, to my chronic pain brothers and sisters, I want you to know, I hear you and see you.

I want to reassure you that you are enough.

Just in case you haven’t heard it today, you did good!

You did more cleaning than your body could handle. It’s OK, not to do more, your body will thank you later.

Yes, it’s OK, the rest can wait.

You folded the laundry that had been sitting in the basket for over a week – no judgment, you did it!

You cooked a meal with love, and that’s all your family could ask for.

You’re pushing through the pain with every step you take – you’re a warrior!

Don’t be hard on yourself, you’re 1 in 1,000 uniquely designed people and not everyone will understand – and that’s OK!

Push through, shower; push through, brush your hair; push through, push through, push through.

Take a break, a much needed break.

Know that your illness doesn’t define you – you are beautiful, believe it.

You are so loved, and you are just as beautiful on the inside as you are on the outside.

You are not alone.

Chiari sister – I see you.

A-

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67 thoughts on “Chiari Sister, I See You

  1. My heart goes out to you, another Mom of an autistic child. Keep up the great work you do at home and in encouraging others around you. Your children are blessed to have you as their Mon.

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    1. Thank you so much! I appreciate your kind words. We all need some encouraging sometimes. Thankfully, he’s doing as best as he could be doing. And we’re having as much patience as he needs us to have. That’s all it is, having patience, no science to it. He’s such a bright boy – they all are. Hope you’re doing well. 😊🙏🏽

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    1. Yes, that laundry! 🤦🏽‍♀️ But when it gets done – amazing! I think I even hear angels singing! 😆💪🏼
      I agree! Very little thing counts and is a victory. Every little thing.
      It’s unbelievably true.
      Many hugs to you Michelle. 😌💜

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    1. Oh Wendi, I’m right there with you! I know. I can’t even get a refill on a medication without seeing my neurologist, but it’s tough to get to him because he’s about 45 minutes away and the car ride is too intense.
      The feeling of wanting to go back in time – before any of this happened, I don’t remember life before this.
      But we’re so strong, the diagnosis has done nothing more than proven to us that we are stronger than any diagnosis.
      Thank you so much Wendi. I’m so glad we are able to lift one another, it’s greatly appreciated. 🥰
      PS. You will continue to get through this. Baby steps.

      Liked by 1 person

      1. I am so sorry……..car rides can be torture boxes and it is very difficult to explain it to others. I cannot drive on the highway so it makes our lives more challenging!
        Yes, to live with all this makes us total badasses. (please forgive my bad language) God bless you Ana!

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      2. Lol we really are badasses! No one ‘gets’ it, no ‘understands’ it. But I’m becoming more ok with that as the years go by. They don’t have to understand. You know?! It’s ok.
        Yes! Ugh, torture boxes pretty much sums them up. I get in them because I have no other choice. I keep small bags in our glove compartment because you just never know. But those darn doctors appointments, being so far and all, ugh, they drive me crazy. I’m nauseated on my way there, I’m nauseated on my way back.
        Oh! I’m so sorry you can no longer drive on the highway. I’m pretty much the same, when it comes to driving long distances, I was encouraged not to. So, my husband has to take me. Thank God for that though. It could be worse. It’s not that our life motto, ‘it could be worse.’ 😏
        How have you been feeling?

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      3. I am thankful you have a husband who takes care of you too! It is a huge blessing and yes, you are absolutely correct, it could be worse.
        I have been doing, ok, I have lots of appts. coming up and they cause me so much anxiety as you never know…………I am sure you can understand this. How are you doing Ana?

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      4. Yes, I’m so thankful. He truly doesn’t grasp the extent of Chiari. But he tries and I make sure to remind him 😏😆
        Ugh! I take anxiety medication. Because especially during a week with an appointment, my anxiety leading up to and the day of, will get me feeling the absolute worse. An appointment for me can be torturous. So bad! My home is my safe place, it’s hard for me to physically leave. It’s tough!
        I’m ok. I’ve had a few couple hard day, my vertigo is taking over. I have no more meds for it and to get a refill I would need to visit my neurologist at his office. He’s about 45 minutes away from me. And to the average person, this isn’t an issue. But for me, well, I haven’t even made the appointment. The car ride alone, my head goes crazy and the anxiety sky rockets. How does one reach their doctors in this physical condition?! Insane. But! I’m hanging in there, praying and trying not to over do it.
        Do I sound dramatic?! I sure hope I don’t. It’s all normal, my new normal, it’s a reality I live with. It’s ok, you know?! We continue to push forward and we’re ok! 😊🙏🏽

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      5. Ana………..I can completely relate to everything you have written. I so wish you and I lived closer so we could sit down and visit and share our experiences and fears and encourage each other through fellowship.
        You absolutely do not sound dramatic……..you sound real and real is a very important place to be in.
        Yes, we do just have to push forward and keep on going………..but some days, I just can’t and although it is so frustrating and scary………I have to surrender and stay put.
        God bless you Ana………I am sending a prayer up for this evening.

        Liked by 1 person

      6. I agree. Surrendering has helped me so much when I’ve tried o my own and have gotten no where. And yes, staying out Wendi – literally. Needing to be in bed because although my mind wants to go, my body has just simply shut down.
        Thank you so much for understanding and for your sweet words, they are comforting.
        Likewise Wendi. Prayer is always appreciated. 😊🙏🏽

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      1. I attended a course once with a woman who I knew nothing about. When the teacher asked her was she did, she said – Nothing. I’m a mom.
        How many kids?
        7, she said.
        And that’s nothing to you?, the teacher asked. That’s more than a full-time job. You’re working over-time all the time. You deserve a medal.

        Liked by 1 person

      2. I have 6, the 4 older ones go to school. I stay home with the 2 little ones, one of which is the most hyper one of the bunch. Luckily he will be evaluated soon to see if he can enter school this new year – PreK 3. I’m praying he gets in!
        Haha! The frustration is real.

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