A couple of days ago was pretty tough. I think I finally reached a point where I needed to let everything go and just break down. Unfortunately, it happened in a strangers office. I had never met these two ladies before in my life but I started talking about PANDAS and my son, Lucca, and emotions just completely over took my whole body. I couldn't control it (and I am known for being a control freak) which made me even more embarrassed and mad. It was hard and I was embarrassed but I started to cry. I realized it had been a long time. It had been a long time since I had to explain my son's condition in front of a stranger. Especially a stranger that had never met him. Someone who had never seen his ups and downs. It was hard to express my concern and why I was there. I was canceling my gym membership. YES People! I was crying at the gym. The truth is I haven't been able to go to the gym much since the diagnosis of PANDAS (Our Story). It had been a good couple of months, or maybe 4, but who's really counting here? Anyway, I became so wrapped up in helping my son heal with doctors visits and more doctor visits, hospital visits, teacher meetings, etc that I forgot to take care of myself.
Being a parent is tough! And being a PANDAS parent, tends to come with a couple of extra challenges. But, honestly being a parent in general is draining and you work so hard at keeping it together for your child/children that it is pretty easy to forget to think about yourself. I clearly got to that point. While trying to cancel the membership, they were kind but didn't want to let me go that easily. I had to sit and explain that the whole purpose of why I chose that gym was to utilize the kid zone area, a place to bring my kids so I could work out. I have a full time job, my husband works odd hours, so I needed something I could use in the evenings and on the weekends. Well, guess what, once your kid is diagnosed with PANDAS, you don't have any desire to bring them to a gym kid zone type area. It's an environment that is screaming...germs, germs, germs! I know germs are everywhere but my son has a compromised immune system. We are working so hard to protect him and boost his immune system that taking him to the kid zone would seem counterproductive. There are lots of PANDAS parents that start to homeschool their child. Some because their child's anxiety is so severe that they won't leave their house and some because it is one more way to protect them from contracting strep or some other viruses that can trigger an episode and send their kid spiraling out of control.
As I sat explaining our situation and how we had to protect my son. I could feel it. I could feel the tears well up in my eyes. I could feel the emotions rush over me. This lady looked at me and saw the start of it and said "It sounds like you are going through a really hard time. Maybe there is something we can offer you, to help you get through this. Some free classes or something. It sounds like you definitely need a release and you can't forget about yourself during this time. You need a break too. You sound like a great mom, but don't forget to take care of yourself.". Well, that started it. The tears came rushing out and I couldn't control it. Part of me understood everything she was saying and she was right! I do need to take care of myself! I do need a release! I do need to get the PANDAS anger out of me somehow and the gym is a great place to do that! The other part of me was furious because didn't she understand that I couldn't bring my son there! That I couldn't risk it! That if I had a way to get to the gym, I would! I was so frustrated with everything. At that point with tears rushing down my face, she just brought out the cancellation forms. I pulled myself together, apologized for my crying and signed the papers.
I left the gym and walked to my car with the cancellation papers in my hand. I put the key in the ignition and stopped. I sat back and just started balling. The big ugly cry. The one where no one looks or sounds pretty. The one that comes from your gut.
I cried because I HATE PANDAS!
I hate that it took my son away!
I hate that it completely rocked his world and ours!
I hate that there is no easy fix!
I hate that we are still fighting with our insurance company over treatments!
I hate that we are still trying to figure everything out because every kid is different!
I hate that I question my 4 yr olds son's behavior and wonder is it PANDAS, regular 4 yr old behavior or is he mimicking his brother's behavior!
I hate that there are still people that question if it's real!
I hate that we walk on eggshells wondering if this is a small flare or will this become a big episode that we can't control!
There is so much to hate about PANDAS...and I definitely started going through that list while I sat in my car.
I cried because I wish we could go back and know what we know now!
I cried because that reminded me of the time Lucca said he wished he could die and start over! Do you have any idea how hard it is to hear your 6 yr old child say he wishes he could die!!!
I cried because I wish this hadn't gone undiagnosed for so long!
I cried because I don't know if we are missing something else!
I cried because I am tired and can't remember the last time I slept through the night!
I cried because I blame myself for letting PANDAS get the better of my son! Not my fault by any means, but I still feel like I could have done more sooner.
I cried because I hope Lucca won't go away again!
I cried because I wish this wasn't happening!
I cried because I have pushed myself to the side and I need to take care of myself again, for my sanity and for my family's!
I decided if I couldn't go to the gym maybe I could create something at home in our basement. But oh wait...we just got it tested for mold and we have elevated levels. Mold remediation, here we come! Guess what, mold is a trigger for some PANDAS kids too. AWESOME! One more thing to add to the list!!!
Now, please don't get me wrong. I am by no means looking for a pity party here. I am the last person that wants someone to feel sorry for me. I typically tell people to suck it up, everybody has issues, and get over it...Put on your big boy/girl undies and move on, is my way of thinking. Here's the thing though, we as parents have to remember to take care of ourselves or we won't be any good to the people we are trying to take care of. Everybody can use a little break or release. For me, I needed to get that cry out and let go of all the feelings I had bottled up. I had a little mini-therapy session with myself in my car that day. I addressed my anger and I let it go. Now, I need to continue to work on releasing that to make sure it doesn't build up again.
I have no idea how to lead into this recipe, so I am not going to pretend to. All I can say is, I do love this chicken salad and it made me feel good later that day. Lucca, also had three bowls. So there you go.
Please don't forget to take care of yourself. Whether it is going to the gym, talking to a friend more often or maybe a therapist, crying in a stranger's office, screaming and crying in your car, or reading a good book (again, something I haven't done in a long time). Take some time out of the day to address YOU, it will help YOU and everyone around YOU in the end.
Happy Cooking and Eating!
Sonoma Chicken Salad
Serves:2-4 people
Prep Time:10 minutes
Cook Time:0 minutes
Total Time:10 minutes
Ingredients:
- 2 chopped cooked chicken breasts (about .75 lb), I used some broiled chicken breasts that I had made. It had a little thyme and salt and pepper on them.
- 3 celery stalks (about 1/2 cup), chopped into small pieces
- 1/2 cup red grapes, chopped
- 1/2 cup amazing mayo
- 1/4 cup chopped fresh chives
- 1/4 cup chopped granny smith apple
- 1/4 cup chopped walnuts or pecans, I did a mix of the two
- 1 tsp poppy seeds
- salt and pepper to taste
Instructions:
- Combine all ingredients in a large bowl and stir until fully mixed.
- I served with chopped arugula on the side, but you can also use micro-greens or serve it in lettuce cups.
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