Taking Up Less Space | Tourette Syndrome

 

I’m going to be honest, I can’t come from a place of protecting readers by softening what this past year has looked like as the mom of an awesome little girl with Tourette syndrome. If it’s not honest, it won’t help anyone. It will only make those going through a hard time with this disability feel even more isolated.

I have always been an all-in mom, up my girls butts and vice versa. We are so close. We couldn’t have it any other way. I’ve always run my own business since they were born and they’ve just been with me the majority of their lives. We’ve been through the way ups and the way downs together, the Disney World moments, the car accident, riding out hurricanes here on the Outer Banks, the dreams achieved, the fall on your face moments. Whatever it is, we’re in it together. A Tourette syndrome diagnosis called for no different of a team effort like everything else before.

But in Spring of 2021 when things started really escalating with Ellie’s tics and Tourette syndrome, I hadn’t been through something that taxing before because it’s constant. This isn’t the boo boo you kiss and bandage up and take a few days to let heal, this is something that harasses your child and never stops. The not-be-able-to-fix-it for the first time ever was emotional pain like I had never experienced before. I just had to watch it happen. And then there is the mental and emotional exhaustion of having to stop and explain to people that it’s not behavioral, it’s neurological. It’s just VERY hard.

When her tics escalated heavily in Summer of 2021, it felt like we were losing air in our family’s space. Like there was less ventilation than there had ever been. And if my girls need more air, I’m going to start holding my breath so they have as much as they need. So that’s what I did. I started making myself as small as possible to make space for everyone else to breathe easier. My ultimate goal became: take up less space so this is made easier on the people you love. If I stop to need anything – I’m taking away from the people I’m supposed to provide for. I know that’s not how it works, but that’s what I told myself while in survival mode. I TOTALLY understand the oxygen mask on an airplane thing, but I went completely against it.

You can imagine this doesn’t end well. We proceeded to research as much as we could, share Ellie’s journey for awareness and honestly so we could connect to others through a terribly lonely season. We are so glad we did, meeting friends like Evie Meg, Paityn, Layla, Britney, Georgia, Jhonelle, Chloe and so many more. Connecting to other people with Tourette’s and parents of kids with Tourette’s was a lifeline for me. Sometimes it was the only thing that made me feel like I was doing okay, because I felt like we were all in the same sea in different lifeboats shouting and checking in on each other across the rough waters, surviving together.

That period of time though, mid-late Summer, I was terrified for school to start. I just had the most anxiety about my girls in a social situation that I had ever had and I knew that environments like this, classrooms and school hallways, they’re so formative for kids lives. What would happen in Ellie’s classroom and hallways? Who would mock her? Who wouldn’t believe her? Would teachers care, would they be annoyed, would they assume her cussing tics are on purpose or that’s she’s just trying to get away with things? If they knew her heart and knew who she is under the tics, they’d be in love and it would be the most natural thing to know that her tics are not who she is. She is an angel and the queen of kindness, always has been. But school was terrifying me.

Because her tics were at their worst during the summer, I had to take significantly less work. And I mean… SIGNIFICANTLY less. I had to say no to thousands of dollars that we needed to build up some of the winter fund I have to prepare yearly as a vacation and seasonal photographer. We had to kiss that goodbye, because those big brown eyes looked at me scared all the time and they needed me around more. 15% of caregivers for those with Tourette syndrome lose a job or a huge chunk of their income. That was me. And guess what? I’m the breadwinner… and that made things even more hard for all of us. But still, I made sure to hold my breath. Keep all that pressure that’s mounting and whatever you do, do-not-take-up-too-much-space. Need less. But still make money. And make sure Ellie is good at her new school. And everything else on your mile long to do list for this new life we’re walking through together.

School came and Ellie was SO loved and supported. Her principal, teachers, staff… they will never know how much easier they made things on me. I’m not sure where I would have ended up emotionally if we hadn’t had their support. I probably would have pulled her out and homeschooled her and I am so glad she got to have a wonderful school experience and make friends like she deserves. This was a HUGE relief for me. Ellie wants to be IN school, with friends, with teachers, with people. She wants that. I’m SO glad she has that.

Fall was fine, watching Ellie play soccer and have adorable tics and even cuss out the opposing team…honestly it was amazing, LOL. There of course were some hiccups where we have to step in and explain Tourette’s to people but overall, we think it went as well as can be expected. But still, I was holding my breath. I didn’t think it was the right time to take up space again, so I made sure to stay very, very small. Make money, but also be there for Ellie and say no to making money opportunities, but also don’t put any of my needs in the forefront because we already have a lot of our plates. Even if I wanted to start breathing then, I don’t think I would have known how to do it on my own. I am pretty sure I had forgotten how at that point.

Deep into Fall, I really lost myself in a way I never had before. My life was so consumed by wanting to make sure Ellie’s days were as easy as possible… but all along, I’m concurrently doing the same for Cammy and Autumn. This was SO hard on them too, so I made sure to spread my energy out between the three of them so we could approach this as a team the way we always had, and move through it together. No matter what, we will ALWAYS move through hard things as a team. Even if that hard thing is happening to one person, we all take it on. We’ve always been like this. So over half a year later, I was still giving every ounce I had to making sure everyone was okay. Day in and out. As little suffering as possible for them, let me take the brunt of it. I was happy to do it, but I was also becoming truly unrecognizable as the ambitious, creative business owner I had been the entire 11 years prior to this. I just needed to survive and make sure my girls were okay, so I was okay with disappearing from my own personal needs and life for a while. But for how long?

December was when it really went downhill. The pressure was mounting for me to provide and protect. Provide for us. Protect the girls. Provide and protect on repeat, back and forth all day long. The biggest glimmer of hope and joy for us in December was Christmas. My mind took a week off and decided to enjoy life as much as possible because we LOVE Christmas in this house. Then January came and then I slid deeper into the valley that I thought was possible. It turned out that there was a hole in the bottom of the valley that brought me to a place that I never knew existed.

January was the worst. I tried SO hard to show up and keep it all together but I was spent. The pressure was too much. In concurrence with all of this, I had never treated my bipolar and learned to live with it and with all of the stress mounting… it was being exacerbated beyond all control. This led to a massive mental breakdown in February on Valentine’s Day when I opened my laptop to see the screen was broken. Another expense, a drive to get it repaired 3 hours away. Six hours round trip on a day where I really needed to work on my computer. And work would be delayed without a working computer. I hysterically bawled on the couch at Lynnhaven Mall in Virginia Beach waiting for my Apple store appointment. It was too much. It was too fucking much.

There is a silver lining to my Valentine’s breakdown: I got an emergency appointment with a doctor and got put on medication that finally evened me out and changed my life. I should have gotten it ten years earlier but I was too ashamed to confront a diagnosis to get to there. But this medicine? I still feel feelings like a human being but my moods are not so far up and so far down anymore and that gift of being leveled out has been unreal. I am not numb and that is important to me. I am so grateful for that medicine. Do not deny yourself that treatment if you find yourself in the same situation.

Here’s the unexpected part though, when you get treated for something like this… you start to see things more clearly that you blocked out processing before. For me, there were two big things I was grappling with. The first was this: I have a lot of regrets about taking on too much while manic. I forgave myself for all of the things I did, said and thought when having a manic or depressive episode. I can’t sit in that shame and beat myself up for it. Millions of other people deal with this daily and collectively in forums I’ve read that it can be a huge gift to forgive yourself for the things you did when untreated. So, I did that. Now I am not living with shame attached to bipolar, and I am proud to be a part of community who fights back and doesn’t allow this annoying condition to define us. I am surprisingly at peace with this and I hope if you deal with this, you will be, too. Eventually, at least.

The second one is very hard for me to write, but it’s my reality: all of a sudden knew how much I weighed because I saw it on the scale during my doctors appointment… and for anyone else who has had an ED, this can be triggering and scary. I haven’t known my weight in years because I am “recovered” from a ten year horrible eating disorder that literally could have killed me and I never want to know my weight. But suddenly, I had a number. And I didn’t like the number. So unfortunately, since February 2022… I can not consider myself recovered anymore. I know numbers can be triggering so I will just say this, I’ve lost a very large amount of weight, over 20% of my body weight. It makes sense that this was my next move because if you need to know ANY key factor in what fuels eating disorders, it’s control. Remember? That thing I lost last year when everything was going downhill. But do we ever really have control? No, not really. But we do trick ourselves into thinking we have a sense of it at least, and I lost that all when I lost myself in caretaking last year.

Holding my breath, shrinking as small as possible to make more space for those I love and getting hit with doomsday February caused me to try my best to become as physically small as possible. And I succeeded. I’ve even been in the hospital for it. And I’m sorry for anyone who reads this and it hurts them. My weight has been the only thing I can control and as depressing as this is to write, I’m really good at it. Many people will tell you that eating disorders can be harder to beat than alcoholism or drug addiction because you actually need food to live, you can’t avoid it. It’s there daily, unlike alcohol or drugs that you have to go seek out. I don’t think I’ll mention anything else about this because it’s just too sad and I’m still in it. I’m still writing from a wound and not a scar, but it was worth mentioning because it’s not always easy to relate to those who write from scars.

So, there’s that. I know that’s sad but it’s just the truth. The trajectory is this:

1) Watching your child suffer dealing with a neurological disability
2) Added pressure to continue making money while being the primary caregiver as the disability’s effects increase in intensity
3) Having to say no to work as the disability intensifies and school is approaching with added layers of anxiety
4) Starting to decline mentally because you’ve been holding your breath too long waiting for a break
5) Breakdown that leads to something good (getting medicine) that leads to something bad (ED relapse)
6) Stuck now hoping Mike will find better work/more part time income so that for the first time in 20 years since I’ve worked full time around the clock week in and out, I’ll get a break from the pressure and be able to give Ellie, her sisters and me the space we all need for self care… and to breathe again, without me having to hold mine.

I’ve written a lot of sad things here. But the weird twist is that I’m NOT as sad as you may think. I am struggling, but I am also very hopeful and a lot of things are going so right for us right now. I was listening to a Brene Brown podcast this morning and it was worded perfectly that pain isn’t a detour from our path, it IS our path. Pain and joy exist concurrently.  I am TRULY in a place right now of being so happy with my girls, our family, my clients (I am loving my work and my summer sessions, it’s just been beyond a joy, my clients are giving me LIFE right now!!!) and enjoying summer. I just wish the pressure wasn’t so insurmountable sometimes. Pressure is normal, hard times are normal. But the way I feel worn down right now, it’s just too much.

My pain is proof of how deeply I love. I don’t believe that everyone needs to compromise their mental and physical health to prove love. I’m sure to some people this will immediately convey weakness, like I can’t handle an aspect of life they expect they’d do better in. But, when someone has fallen this far in the name of making life easier for people they love who are suffering, I don’t believe it’s a sign of weakness… I think it’s the ultimate sign of strength because loving someone is the bravest thing we can do. To love someone is to risk it all, to be vulnerable when you know it can be taken away or that the relationship can change in different seasons of life.

Our prayers are this:

We hope that Ellie can continue to be supported by her school, family and friends.
We hope that Autumn and Cammy can continue to feel all of the love and support too and know what INCREDIBLE sisters they are.
We hope that Mike can get a career that helps alleviate the pressure from me, or at least a great paying part time job. We are constantly looking and applying but it’s been hard.
Selfishly, I pray we can get the girls to Disney this Fall. We tentatively booked a very fast 2 day trip for them a while back but we don’t know if we can make it happen now. I am a seasonal worker for the most part and don’t have any sessions for several months due to cold, so usually I have to put together a winter nest egg to carry us through. They just deserve this kind of joy and experience so much after what we’ve all been through… but maybe that’s a trip for another year. Autumn is BEGGING me for a 1-on-1 trip to NYC because she’s never had that with me… with SkyMiles we may be able to make that happen more easily but Disney, it may have to go on hold.

Have you really read everything up to this point!? Okay, you are truly amazing – I KNOW that was a lot. I know that was sad, and that’s not usually my speed! But, a part of me does believe that these moments I’ve spent tucked far down in the valleys are leading me to the most beautiful mountaintop moments yet. I actually do see and understand some of the lessons I was already meant to learn and we’ve made a lot of positive changes accordingly. There are VERY specific positive life gifts that have come from this horrible season, I see those and cling so tightly to those so I remember that my pain has a purpose. Our next hopes are prayers listed above and we’re just going to keep moving forward as best we can, day in and out. Maybe I’ll re-learn to breathe and feel like it’s okay for me to take up space again. We appreciate this community so much – you’ve been like family & friends to us for 12 years and we’re just sharing an honest life update of how things have gone since the diagnosis. Truly, despite everything we are hopeful and grateful and looking forward to seeing how we can turn this rough season around!!! We will NOT give up on trying, ever! XOXO

 

18 Comments Add yours

  1. katelyn says:

    Love you sweet friend 💕praying for peace for you guys

  2. Jessica Gourley says:

    Thank you for sharing, friend. Love you all so much and we aren’t far away if you need anything!

    1. Sarah Schwartz says:

      I am sure this was really hard to share but I am grateful you did. I truly hope that you can find peace and healing. You’re a beautiful soul Amanda.

  3. Caylee says:

    Praying for you all. ❤️

  4. Kristen Allen says:

    Girl… this is A LOT to go through. I am in awe of the brave, badass woman, wife, and mother you are. You are the exact mother your girls need and they will learn so much watching how you love them and love yourself. XO

  5. Tracey Hanburger says:

    Love your family! So glad I get to see your girls everyday at school. They radiate happiness!

  6. Elisabeth Davis says:

    Being a caregiver is never easy, so I definitely feel you there. Give yourself grace when needed because youre doing the best you can in a crazy world. I admire you sharing this because IT WILL HELP SOMEONE. xoxoxo

  7. Amy says:

    I follow you on Instagram because I’m an OT and have several clients with Tourette syndrome. I’m so sorry you’re struggling with this season of life and I can identify with the struggle and joy at the same time. I’m currently going through a temporary physical disability, a lifelong neurological condition, so much joy from the new baby, and so much religious/parenting trauma I’m trying to work through. I’m sending good thoughts and wishes for your sweet family!

  8. Katie says:

    Thank you for sharing this. It is hard being a caregiver of the ones you love so much. Continue to be so good to yourself and to breathe and give yourself so much grace. Praying for all the good things all my love Amanda

  9. Amber says:

    Being a caregiver is so difficult. It can be isolating and take so much energy. I also understand the feeling of holding your breath. I have felt myself holding my breath trying to get from one hurdle to the next some days. I hope for fewer hurdles and more peace in the months to come for you ❤️

  10. Kelly says:

    Thank you so much for sharing Amanda. I think about your family a lot. I know previously you mentioned another daughter also showing symptoms and I always see what a great job and amazing mother you are. I am a caregiver also and feel there’s days I feel so stressed I can’t breathe. Thank you so much for sharing the hope❤️❤️❤️❤️ You’re amazing ❤️

  11. Allison says:

    My dear, if only you knew what a tremendous gift your words are to others. God bless you and your sweet family always.

  12. Linda says:

    “I was listening to a Brene Brown podcast this morning and it was worded perfectly that pain isn’t a detour from our path, it IS our path. Pain and joy exist concurrently.” I resonate with this so deeply. Thank you for sharing your story. We all love and support you!! <3

    1. YES – I am clinging to this big time lately! That realization changed everything for me. Everything.

  13. Patricia says:

    I can relate to sooo much of this. My daughter doesn’t have tourette syndrome, but she does have BPD and for the past 10 years I have seen her suffer so much. I have been her main person since birth and I took on full responsibility for her mental health and keeping her alive. My mental health became attached to her mental health. If she was doing OK I thought I was too. But as the years progressed I realized that her meltdowns and her times in crisis were effecting me as much as they were her. My ED came back full swing. I had to try to balance her life and moods with my own and still work and care for my 2 youngest children. I wasn’t ok. I went on meds and about 8 months later the fog began to clear. I’ve had tons of therapy, still taking meds and I can finally see where I can separate my life from hers, while still being there as much as she needs me to be. Being a parent is hard. Being a parent of a special kid is so much harder. I understand you.

    1. Patricia this comment… I am just so thankful you took time to share this because it means so much to me. Having an ED and being in this caretaker position, it just feels awful and I felt very, VERY isolated which is why I wanted to share. I am so thankful for you taking the time to come here & read this. THANK YOU <3

  14. Wow, I just found your blog while searching for other photographers with disabilities and came across yours, I also have Tourettes Syndrome, diagnosed at age 4 with a tic disorder and formally diagnosed with Tourettes at age 12 in 1978. I have been on medication since day 1 of diagnosis. I wish you and your family the very best. I look forward to following your Journey.

    1. thank you SO much for taking time to leave this kind comment!! I appreciate you! <3

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