How Can I Help You?

Being with my kids 24/7 has me feeling overwhelmed. I love that they get to be educated at home. Riley is thriving beyond my wildest dreams. Seth really enjoys it. It seems to be working for everyone, except maybe me. It is so isolating sometimes. I miss the camaraderie of work, and the paycheck. No matter how much Todd says it is “our” money there is still a power differential.

Anyway….I’m treading water here and getting tired. I’m not as present with the kids as I like to be, and my main objective seems to be how I can keep them occupied so I can get away from them and their constant needs and demands for twenty minutes here, half an hour there. I am not motivated to cook. Our weekly organic produce rots on the counter. If I have to do another dish I am going to scream. Todd and I don’t go out. We don’t do anything social. He is happy to come home and hang out after working hard all week but I’m dying here. I feel so ready to take a job. Perhaps something part-time in the evenings. Nursing would make sense. It is where I can make the most money. I’d have to take my boards again, but whatever. It wasn’t that hard the first time.

And then, perhaps the real reason for the overwhelm. Seth had a sore throat last week. Peering in with a flashlight, the back of his throat actually looked bloody. A couple of days later, it looked more like hamburger meat. This week his tics are really severe. His whole body seizes up. His arm does a wide circular motion. It can take him 20 tries before getting a sentence out, as if his speech is a vinyl record getting stuck on a scratch. The hypothesis with PANDAS is that a strep infection causes an auto-immune response, which somehow attacks the basil ganglia of the brain, the part that controls movement. So you not only have to stop the strep, but also the auto-immune response to it. Seth does not have the truly debilitating psychiatric symptoms often associated with PANDAS but he does have irrational fears and some urinary issues which cause him embarrassment. He fits the criteria for the diagnosis. And if it isn’t PANDAS, what the hell is it?

Our regular pediatrician does not give a shit. He acts as if I have Munchausen by Proxy syndrome because I do not settle for his lackadaisical, “kids outgrow tics.” This isn’t a slight little tic. This is a whole bunch of tics. Some are vocal, some are full body seizing tics (which are constant, Seth’s ribs are sore from it) and it’s not just tics. He is nine and can’t go upstairs by himself, due to fear. He wasn’t always this way.

Luckily we have a specialist who knows about the condition and is doing her best to treat it, but we really have not found the magic bullet yet. Seth’s immune system is screwed up and has been since he was at least three. He missed 33 days of school his kindergarten year.

I find myself resenting women who gripe about how school is closed for this holiday or that and they can’t get any work done. It was never my dream to homeschool and I am not a natural teacher. I fantasize about sending my kids to school, but it was horrible for Riley and school is strep city. And …how could I think of sending Seth? Ticking all over the place and stammering and smelling like pee? No. Not putting him through that. I know it is all relative and so many people have it so much worse than us, but I am tired.

And this is what the overwhelm is really about. My boy is not doing so hot, and I can’t get a minute to catch my breath, and sit with it, and tune into my inner guidance, and really figure out what he needs.

So many good things to report though. Riley got expanders for her upcoming braces and she is doing so well with this metal device attached to her upper palate. She is 100% on board with braces and feels like a “teenager,” and is so full of herself over them. It is a right of passage for her and she is loving it. She is handling all the associated sensory issues like a champ. Better than I would be. She is just growing and thriving in so many ways. Looking at how well she is doing, knowing how far she’s come, I know we can get to the bottom of things with Seth.

We have to.

He is such a good kid. Even with all of this, he’s mostly happy. He’s mostly joyful.

What’s it all about little man? How can I help you?

What does your soul want me to know?

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14 Responses to How Can I Help You?

  1. naomi says:

    Oh, my friend. I hear you. Much love.

  2. Meg says:

    Oh, honey. Once again, you know your children waaaaayyyyy better than the pediatrician. Treading water is hard work and sometimes just keeping everybody’s head up and not drowning is all that can be managed. To hell with the produce! To hell with the dishes! Let them eat cake! Hug your boy; the answer will come. (((Hugs)))

  3. Lydia says:

    Praying for Seth, and for you. You’re an AWESOME mom. Truly, amazingly, incredibly awesome. Don’t forget that!

  4. Joan says:

    Thank you for your honest sharing. I know, home schooling eats up your life. But even this is temporary and your kids do seem to be benefitting from it. That is what is most important.

    Blessings to you,
    Joan in PA

  5. Chris V. says:

    I appreciate your honesty, more than I can express… Praying for everyone…. and the little guy’s throat…. I wonder if things calm down a bit and you get a “job” or more time away to take of you, would that help the children? They are so intuitive and probably pick up how burned out you are… and they feel for you, and it comes out with vocal ticks and peeing, etc… Easier said than done, I am sure…

  6. Janet says:

    Give yourself a break, you are only human. You are allowed to get frustrated, burnt out, allowed to miss adult conversation and interactions…I think we would be more concerned if you didn’t feel that way! You will get through this. I am not sure if you remember my trials with Kyle. How many pediatricians, specialists, naturalists, homeopathic doctors, etc. did we go numerous to count. I certainly did not have the insight you have, yet we MADE IT and he is now a beautiful, secure 18 yr old young man. Seth will get through this. I know I am “preaching to the choir” but just keep reassuring him there are no mistakes, he is perfect just the way he is,as are YOU. I, even now, look back at the things Kyle missed out from his own fears and my fear of him being ridiculed.. However, everything happened just as it should..even the endless bed wetting, the night terrors, the fear of E V E R Y T H I N G, the frustration of not being able to help. BUT here we are. He still has occasional tics and what I would see as “irrational” fears..and he is coping and trying new things and even better….he is comfortable in his skin, just as Seth is…He is leading a full, rewarding adult life…just like Seth will….and he lived a full rewarding childhood, just like Seth is. Shine on my friend, when life gives you rotten veggies, make compost! LOVE.

  7. Amanda says:

    Oh boy! Thinking of you all and sending happy thoughts.

    Ps this comment comes to you from a iPad – not mine, just getting a wee shottie!

  8. *m* says:

    I have worked one afternoon/evening a week since my first child (now a high school senior) was born. It has been a lifesafer, esp. later when I was at home all day with two little ones. Even now when they are in school all day, it is good for me to go to work and be completely distracted from thinking about them. An important change of scene and mental break.

    You are doing a fantastic thing by homeschooling Riley and Seth, but you and thus they would probably benefit tremendously if you had a regular outside gig of some sort. Not just “me time” — it should be something that is less easy to blow off. Think about it.

    Wish I had some better ideas and amazing wisdom for you. As I do not, I am just sending you hugs, and wishes for healthier, peaceful days ahead.

  9. Leah says:

    I can certinaly understand feeling overwhelmed, even with one kid. I can’t imagine doing all you do. You should be applauded for your efforts to homeschool and provide your kids with the best life they deserve. Hang in there, Michelle. We’re here for you!

  10. Kirsten says:

    Oh Michelle–I know the first comment already says this, but my first thought as I finished your entry was, “I hear you!” And I agree with Meg–to hell with the produce! To hell with all that unnecessarily weighs you down. You are giving your kids the most wonderful, joyful life. There is a reason Seth is as happy as he is despite his challenges–and while some of it is his unparalleled spirit, a gigantic part of it is that YOU are his mom. I know that drowning feeling–that feeling that you’re living under your life and losing yourself…and I hate it. Hugs and love and understanding and validation! xoxo

  11. jancsnow says:

    My question to you is the same as yours to Seth: How can I help you? How can any of us who love you – and Seth and Riley – be of help? You know I would forklift the burden if that were possible. At least something analogous to tossing you a foam noodle to make the water treading easier . . . (will try not to hit you in the head with the toss)

  12. kario says:

    Oh, my. Your words make me tired and overwhelmed. I can only imagine how you feel. I hope that the doctor finds something soon that will explain the immune response and give you all some relief.

    In the meantime, I’m going to send you the same loving message you sent me a few weeks ago: what do you want? What is the most loving, caring, light-full scenario you can imagine? Let us know and we’ll all visualize it for you and yours.


  13. Rachel Smith says:

    My son Fergus from about 3 started with tics. gradually. Another one would present itself nearly with every major growth. By the time he was 9 he has visual?physical and verbal (squeeks) What really showed was the eyerolling. It really showed when he was explaining something that excited him. ie: the kite flying feisco. his others came in sight and left. He was also severly affected with worts. right through that time and up to today we have up to two wet beds a night. thats with getting him up. he is now 11. I looked into things when the ‘experts’, “didnt really know what it was so well just put him on this drug or that drug”… I walked out… with fergus… Magnesium Chelate and Calcium citrate. The worts disapeared, the tics went… Yahhhhh. Now he is 11 and entering prepubesent… We are having outbursts of anger, no immediant reason for them, So to me they are like a build up of daily grind and social inadiquices in school life. unspoken things due to lack of emotional recogintiona and ability to voice them. As im writing im thinking of tools… maybe he needs to break down the pre to being angry… Its hard when they are beautiful loving funny kids… I wish you the best in your search… you have my email… keep in touch if you want… information is the key… Love rachel and fergus…

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