Reflections on Life with PANDAS at Thanksgiving

November 17, 2017

Just returned from Orlando where I endured four days at Disney World, including one MASSIVE breakdown at Epcot (him, not me), a flaring hip, a room that reeked of Glade Plug-in disgustingness, and then a kid with a raging fever for the last two days. It was great fun.

Actually, minus the breakdown at Epcot, where I thought we would be escorted out of the park with our screaming child in restraints, it wasn’t all terrible. There were several moments where I looked over at my son, smiling ear to ear, and I felt overwhelmed with emotion. I watched him clap excitedly or laugh at a silly Disney joke and my heart swelled. And on the day we hopped off the Mine Train and he gave me a huge, running hug and declared, “I love you, Mom!” I quickly wiped away my tear. But even with all those things, it wasn’t anywhere near “normal.” In some ways, I guess I have given up on the idea of me, mother of three-plus kids, happily waltzing through Disneyland while my kids grumble at me for not wanting to stop and take an obligatory photo. I say given up because I still don’t want to accept this as my reality. Giving up feels less final than acceptance, for some reason.

I still feel that pang of envy every time I see a friend’s child in a school or sports team photo, or winning an award, or at some big recital. There is a part of me that will always feel I missed those things. I wanted to be the homeroom mom, and the Brownie troop leader, and the soccer team mom, and all of the above. I was going to do it all with a huge heart and an even huger (yes, I realize that isn’t a word but go with it) smile. And even though those things haven’t been part of my parenting experience, I feel as though I’ve been stripped of my duties and relegated to the corner to wear the dunce cap. Of course, I am happy for my friends and their beautiful children, but I can’t help but feel a little sad as well.

We are moving in two days, and I feel no anxiety whatsoever. I suppose that’s a sign it’s for the best. I will miss our lush backyard and swimming pool, but this house is quite literally killing us. But what if this move is all for naught? Yeah. I can’t help but think that either.

I don’t know what I supposed would happen after our trip to Holistic Healing Arts in Seattle, but it wasn’t this. I was hoping we would feel at least a little better. But we don’t. Little Man has been worsening, and for the past three months, we haven’t been acutely well at the same time for more than a couple days. It’s wearing on me. I’m tired again. I hurt everywhere. I am still quite overweight and not able to exercise. I truly do not recognize myself.

During my first couple days at HHA, I felt really great, but toward the end, I felt the spiral back down and I got sick immediately afterward. Maybe it truly is the house that’s keeping us from healing. Maybe. It’s early in our treatment, and I do trust that this is a process. It’s just been such a long one already.

Today, Little Man said to me, “Mom, I don’t think I’ll ever be healthy.” I didn’t know how to respond. It’s how I feel now, too. How can I reassure him when I feel the same? How can I let him know things will get better when I can’t see the light at the end of my own dark tunnel? I knew this would be a journey, but nothing could have prepared me for this grueling crawl to the summit of Everest.

Thanksgiving is next week, and I cannot help but think of what I considered our rock-bottom. It was four years ago on Thanksgiving Day. The three of us, along with my dad, hopped in the car for the two-hour trek to my brother-in-law’s house. Five minutes into the drive, Little Man became enraged and began screaming, kicking Steve’s seat, punching whomever he could reach, trying to exit the moving (albeit slowly) vehicle, and making it an all-around joyful ride. Ha! About two hours in, with 50 more miles to go, we stopped for burgers and burritos (the only thing my son would eat at the time—literally). We drove in that fashion for a total of FOUR HOURS. Yes, welcome to Hell.

He finally settled down mere minutes from the house and we arrived to the usual chaotic family gathering, especially when you have eight cousins aged ten and under. My sister-in-law recognized my exasperation and handed me an MJ-fueled Jolly Rancher. I gladly bit half. Not thirty minutes later, I heard screaming emanating from downstairs and rushed down to find my child in an absolute rage with his cousins scattering in fear. There went any chance of catching some ingested relief. It took both Steve and I to carry him out of the playroom and into the office where he screamed bloody murder and whaled on us for well over an hour while the family enjoyed a lovely meal upstairs. We provided the soundtrack that year. You’re welcome.

I didn’t know what to say. I didn’t know what was wrong with him, but I KNEW something was most definitely wrong. I was sad and embarrassed, but mostly just exhausted.

Even though I know this Thanksgiving won’t be anything like that particular one, this holiday has become a very difficult one for me. It causes me to reflect on so many things. It makes me remember the horrors of the last several years, and I just don’t know if I can ever truly forget them.

Am I grateful? Most definitely. I am grateful for so many gains over the past four years. I am grateful for my life, my child’s life, and for the amazing people who have helped us along the way. I am grateful for a husband who works diligently to support us as we go through these trials both emotionally and financially. I’m grateful to be moving to a home that will allow us more comfortable spaces to facilitate healing. And I am also sad we haven’t come farther. I’m disappointed in the many treatments that haven’t worked. I’m disappointed in the people and protocols who have promised healing and continually fell short. I’m frustrated with the lack of compassion from so many who I thought were part of my community. I’m terrified we’ve gone another year without complete healing. I’m desperate to find answers for my boy as he begins to outgrow his childhood. I’m mourning so many of the things we were never able to experience together.

But those feelings don’t make me ungrateful. In fact, feelings such as gratitude are oftentimes felt in spades through the challenges. When I see my son laugh, or clap, or smile, or hug me spontaneously, I can’t help but get teary-eyed. Why? Because those tiny victories aren’t daily occurrences for us. At one time, I couldn’t even remember the last time I had seen my son smile. Truly. Let that sink in for just a moment.

But it’s the dichotomy of these extreme lows that force me to sit up and take notice of the highs, and you can bet I am deeply grateful for each of them. So please, excuse me while a shed a tear in my turkey. It isn’t because I am lacking in gratitude, it’s because I know how far we’ve come.

~ The Mermaid

“I must be a mermaid, Rango. I have no fear of depths and a great fear of shallow living.”    – Anais Nin

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6 Responses to Reflections on Life with PANDAS at Thanksgiving

  1. The Mermaid says:

    Thank you all for your loving comments. Despite all our trials, my son is my greatest strength. We will not be giving up this fight and we will both see complete healing. I know this because I have never been one to give up.

    A Happy Thanksgiving to all.

  2. Martha Tullius says:

    I do not know what to say. My heart hurts for all of you. I know a little of what you are going through. With Jackson for several years we never knew what to expect, still hold our breath that the day will be good for him. I will pray for you and your sweet family. He is such a beautiful child and I know you and your husband are wonderful parents. I really think time will make a good difference. Try to have a good Thanksgiving. I would love to meet you all. My love for all of you.

  3. Shawn Pierce says:

    A huge hug Mermaid for you and your family. As I read your story I thought I was reading my own. My son is now 14 yrs old and as hopeful as I try to be and the new treatments I still explore I realize everyday a piece of me fades faster and faster. I will always be a mom first and for most and love my little Charlie man with all my heart but would love a break, to smile and laugh again, lose weight and not ache and to just feel “normal”. Yes, I said the N word. I wanted a son so badly especially after my first two were girls. I had dreams of little league, boy scouts, building forts, fishing and all those fun things we dream of. Never in my wildest dreams did I expect that I would be blessed with such a happy loving baby boy that would love me so unconditionally but change my world forever.

    My heart is hopeful for you and your son. May this move be a happy and positive transition to the world you have been longing for. Remember to stop and stay encouraged by what your little man has done ( I know you know that, some times we just need to here the reminder). I am not sure of what your sons diagnosis are besides PANDAS or if he even has one but I have been doing research for 14 years and trying many things and have finally come across a few things that are helping my son not have those hair pulling, pinching, screaming and kicking moments. If you want to write I would love to share and help if I can or just to connect to a mom who gets it. We are seriously far and few between. If you are interested, please feel free to email or tag me on FB.

    To end I would like to say/ send this prayer to you. If you are not religious then please feel free not to continue to read on.

    Dear Heavenly Father, Please bless this beautiful women with your abundance of love and grace. Grant her and her son the miracle they both desperately need and desire. Give her continued strength and courage. Please send your guardian angels to help guide them, protect them and put the right people in there lives so they may progress in the positive life we know you want for them. In your name we pray. Amen.

  4. Kasey says:

    When I read this, I dont feel as alone. Thank you.

  5. Christina Lau - Raman says:

    Hugs your way. Hang in there.

  6. nocposts says:

    Wish I could reach out now and give you a hug, Mermaid. I understand the dichotomy of feelings of highs and lows as a mom with a 14YO son. He is better but it is still challenging. Watching the MLB awards given out this week (I’m a baseball fan) often made my heart ache for my son. I then turn to God, nature walks or whatever spiritual practice that helps, to help me realize how much my son CAN do.

    Have a blessed Thanksgiving.

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