I’m excited to bring you my very first post at my new website domain! Like my son’s favorite present from Santa, I hope my site can be a treasured gift to you so that you can find joy despite a diagnosis you may not be thrilled with. If there’s something you disagree with, let me know.
For those of you new to my blog, you can catch up on my TS journey at my old site here. But like Tourettes, despite good and bad days getting used to my new platform, this is my new home. Welcome!
For my first entry, I thought I’d cut and paste an entry I wrote in response to a friend of mine who was worried about her son’s new facial tics. She, like many new moms at the beginning, has moments of complete devastation. Sure, there are times when she feels like she’s okay with her son’s diagnosis (like the time when her son’s tics are the most minimal – shocking, I know.) But just when she feels like maybe she’s accepted his condition, a new twitch starts. With it comes fear, riding on a raging horse.
She wrote that she felt bad about, well, feeling bad! Like somehow she should be more accepting! Other moms in our group, it seems, are “over T.S.” and she isn’t.
For those of you who might feel like you are alone – that other folk can handle T.S. (or any disorder) and you’re in a fetal position in the corner drowning your sorrows with Two Buck Chuck from a sippy cup (hey, I resemble that remark!) rest assured – we all have our off days. Or weeks. Or months. Just hang in there – you will feel better in time.
Here’s my two cents on the subject. I edited my response a bit for the purposes of this blog.
I have been better lately for a variety of reasons.
1. Time: I have been down this road for FIVE years. I get the waxing and waning. I’ve done it all, from food and diet to supplements and possible medication options. I’ve done the holistic docs. I’m starting acupuncture. I have gotten to a point where I accept that Stink has TS and I”m doing my best. I don’t feel like ‘why can’t I fix it’ because I know I can’t 100%. But that leads me to #2.
2. A Plan.I have one. I’m going to do Brain Balance. I need to make some money to do that. This means selling some articles, teaching some online writing classes, Ebay, etc. Doing what I’m passionate about not only makes me joyful, but it has the added benefit of making me think less about the tics so I can actually change something I have control over: my attitude.
3. My Faith – Hope: Christianity has been a tremendous source of support for my up and down emotions.
* Note: Where I ramble like a Bible Thumper - Romans 8:28 says, “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” This passage is a source of great hope for me. It means that my “suffering” is not in vain.
That tics are just like a puzzle piece. For a while, like when Stink was first diagnosed, the puzzle pieces seemed jarring. It felt like they would never fit together. Slowly, with my plan, I got the border put together. That was my emotional balance.
Now I have some of the middle put together. I can see a beautiful picture despite some missing holes. With faith, the holes can be filled in with a picture I create. That picture is a life where Stink is happy, healthy, funny and over T.S.. And if he’s not over T.S., it’s not in vain, because his character, and mine, was shaped from it.
* More thumping: And a sidenote! I encourage all of you to find your own personal road to faith! Romans 5: 3-5 promises “And we rejoice in the HOPE of the glory of God. Not only so, but we also rejoice in our suffering, because we know that suffering produces perseverance: perseverance, character: and character, HOPE. And HOPE does not disappoint us.” (Hooray for hope! I love hope!)
4. Finding my Passion: My writing has been tremendously helpful to me. It’s my love. I can’t form sentences and write blog posts while, at the same time, obsessing about tics. It’s simply impossible. In writing this blog, I am serving others as well. I have bad days like we all do, but in lifting others up, I am selfishly lifting myself up also. The key for me in helping others was realizing that I can’t just serve when I’m feeling okay. God can use me when I’m feeling like a piece of spit out gum stuck to the sidewalk. Before long, I’m blowing good bubbles of encouragement. And I even forgive myself for stupid analogies like the one I just wrote.
* Last thing on serving others: This is not meant as some do-good Christian tip. I don’t care what your religion is or how you feel. Taking your eyes off yourself, and putting them on someone else, is the cure-all for anthing. Don’t believe me? Try it. You’ll get hooked.
5. Acceptance: I accept that some days I’m just down. I don’t like the verbal tics any more than you all do. I have moments where I can’t be in the same room with Stink. I need a break. I have to fight for my “me” time and my “down time” and work on my marriage to do this. It’s created a wedge between my husband and me, at times, as I’m no longer the “yes” person where he gets all the breaks after his hard day at work and I continue to slave. Yes, I have down time while the kids are at school, but I also do a hell of a lot of work while I’m at home alone. I know… I KNOW… I’m worth some relaxation. Rex is starting to understand that. It’s not been a fun road, but he’s getting there, and that is all I need. Love is not a feeling – it’s an action. It’s a verb.
To help with all five points above, I am not ashamed to say I take 75mg of Zoloft every day. It’s evened me out enough to take my head out of my ass and face life the way life is. I hope to not be on it forever, but if I need to take it, I will. My good friend, Chrissy, sent me a link that talks about depression better than I could.
In closing, please know I’m here for all of you. I hope you’ll consider making a plan for yourselves to then get a plan for your child. If it’s meds, go for it. If it’s back to work, go for it. If it’s exercise, go for it. But know this: if it weren’t TS, you’d face something else at some point in your life. Perhaps your mom would die, throwing you into a tailspin. Or a husband who cheats on you. Or your child could have some other illness or you could be diagnosed with something.
I truly truly believe, now, that TS is the invitation we all need to accept life on life’s terms and do the best we can. I pray that you all find peace and are not so hard on yourselves. I’ll take the same hope for me, too.
Until tomorrow, remember my motto: A kid who tics with confidence outweighs an insecure ass wipe any day of the week. (I should probably consider revising this tagline, but for now, the sentiment remains! Hug that ticker today!)