Early Summer 2019
It’s the smallest things that people or your own children say or do when you are sad or overwhelmed and they feel helpless...
Yesterday, I was driving my son George home. I’d had a rough day, and had just finished a frustrating call with a doctor. As I bit my lip, trying to hold back the tears, he gently put his hand on my shoulder and said,"You know, Mom, I had really good fries at school today."
I smiled through my tears and replied, "Really? Were they fat, skinny or curly?"
He said, "Skinny, with enough girth; they were good." Then he asked, "How about one of our favorite songs. Which one?"
I said, "Your choice."
He chose Lean on Me. We blasted it and sang all the way home.
XXOO Thx, G
late SPRING 2019
Recently I said to a friend, “I am so lucky to have my family.”
I keep waiting for the sun the shine, literally and figuratively. We have had a long spring with little light. I wake up each morning with my daughter and I think... Will the sun shine today? I spend days driving, walking in a daze, envisioning myself on my knees, surrendering and praying. Recently I was reminded that even when it storms daily, the sun WILL shine.
A ray of light appears every day in my home, and it’s my niece, Emily. This past year, she has been working with me. I have always known she is special. She has a way of connecting with all ages. We flow through our day working, laughing, and sometimes crying. Joking when we stop to do a puzzle or drink our chlorophyll that we are sure Google isn’t like the WC. In all of our moments at home with our craziness, and more recent struggles, Emily brings joy, love, and laughter without judgement. She is truly a gift. Every day when she leaves the office we say, “Bye — I love you.”
I realize my good fortune expands beyond, when my brother, Willy (Emily's father), calls me and we exchange a quiet conversation, catching up on the small moments in our lives, with unspoken words exchanged, that we are there for each other.
Bye — I love you.
And it grows... As my sister Wendy returns from being away, after daily texts telling me how much she loves me and is thinking of me. She gently holds me up, and listens.
Bye — I love you.
My sister Darby, who is moving closer to “home”, calls to say I love you and she thinks my daughter Liv and she should take boxing classes together. She always makes me smile and feel held.
Bye — I love you.
My parents... My mother has Parkinson’s, and yet when checking my messages the other day, she had called me 20 times (not exaggerating) just to say she loves me. My dad calls daily to ask what he can do to help.
I remember when my husband and I were first dating and he would hear me hang up with a family member, “Bye — I love you,” he would ask why I said that every time, and I would reply, shocked, “We never hang up without saying I love you.” I have trained him.
This weekend, on a beautiful Saturday when the sun did shine, I smiled to myself as my four children gathered and quietly supported their youngest sister, not without a few family moments, but I didn’t care, because we were together and the sun was shining.
When we are in crisis, we recognize our support, and for me, that’s my family.
I love you more.
As many of you know, my daughter Liv was diagnosed with PANDAS about 9 months ago. It has been a really long road, which eventually led us to a therapist — which Liv did not love the idea of...
"Why do I need to go to a stranger and talk about my problems?"
I am thinking. “Because the truth is I need help and I truly am wondering if I am suffering PTSD.” I can barely handle when one of the kids has a hangnail without my skin crawling.
So you can imagine, I practically ran to the therapist this summer after our 17 year old son called us when we were out at dinner.
"Mom, why are you not answering your phone? I am really sick. You need to come home." Not many 17 year-old boys call their mothers unless they REALLY need you, so you go. He was worried he may have mono, as he had been exposed. This all was happening one week before school was to start — his senior fall. Thankfully, it wasn't mono, bit it was strep, and if you know anything about PANDAS, strep is like the plague to a kids with PANDAS.
Here comes the PTSD...
I called the therapist, realizing that I really needed help. I needed to tell her that for 3 years, I have been in and out of hospitals with my family, and I think I am going crazy. I needed to unload the whole story, even if she didn't say a thing. I needed to get it ALL out, so I vomited...thinking it may unburden me.
"Mother Parkinson's Disease, dog cancer, son broken wrist, lacerated spleen, ICU, Lyme, mother broken hip, son stress fracture in his back, other son emergency appendectomy, PANDAS and Lyme."
We all have shit. We all suffer something. I feel like I have been in a river with the water ripping through and someone keeps handing me rocks to hold up, and I'm trying desperately to stay above water. At some point, the rocks just get too heavy. I don't feel bad for myself, I just need a break.
The therapist said very little, but what I remember is, her saying "Your well is dry."
The next day was Liv's appointment — one week prior to school starting. Liv was still having frequent panic attacks or episodes. Shocking and upsetting for a child who previously never experienced any anxiety. I was thinking, “How the hell are we going to get her to school?”
The therapist asked how Liv felt about going back to school. Liv was very composed and said...
"I know I need to go to school, and my mom has to be tough, and no matter what she has to make me go, and I know I need to stay for the whole day. I know this is going to be hard for my mom, but I need her to be strong."
I bit my lip, trying not to cry. How could she be so brave?
So here we are, one week into school and Liv has gone every day — some better than others. When she gets in the car and I ask how her day was, she says, "It was okay. I had another one of those out of body episodes."
I ask, "What did you do (get a teacher, EFT, get your lavender roll on)?"
She says, "Nothing; I just hoped for it to pass."
It makes me sad to picture her struggling through something by herself, but I know she needs to learn her own strategies. It reminds me of a time when she was little and I would put her to bed. I had read one of my favorite books, The Help, and we would recite from the book, " You is brave. You is strong..." as our prayer or mantra before bed.
One night recently, I turned to my husband before falling asleep and said, "It's crazy how one case of strep has changed this child's life." I wanted to be in the "it's not fair” camp. Sometimes we want to feel badly for ourselves, and then it passes.
He simply stated, " It's the hand we were dealt. Everyone is dealt a different hand, and we will get through this." Sometimes I wish I could be him, so matter-of-fact.
The next day, I received a heart-wrenching email from a mother who had a 17 year-old with severe brain damage from Influenza A. My husband was right; we all have a struggle.
And just when I think I can't do it anymore, I am reminded...
You is brave, You is strong.
late summer 2018
I can't stand when summer ends. I love having all my kids home. I love a full fridge, friends in and out of the house and family dinners. So when I am feeling frustrated by the heaps of towels strewn all over the floor, the ice cream dishes knocked over by the dogs, late night pizza boxes, I remind myself that soon the routine will come and the kids will be gone.
Recently, as I was folding laundry and maybe feeling a little resentful, I reminded myself that in one week I will have half the amount of laundry. This brought me a sense of sadness and honestly, relief. This past week I tried to stay in the flow of summer and not feel the conflict of emotions: "Get out of the house! Please don't leave." I take full ownership; I was grouchy and I cried a lot. I might have been told I was being a BEAR and I was a little fragile. Neither felt very positive. It's not like I wanted to feel this way. In my mind I love fall, but my heart loathes the transition. I want to be that mother (if she exists) that moves through transitions with grace and never gets grouchy, but I am not.
The night before the boys left for school, I came home after our last supper and took out the last load of laundry including a few "critical" items for the boys, and as I folded, I sobbed — tears of sadness (everyone is leaving), fear (Will Liv make it to school? Will George like school), reflection (we didn't do enough together this summer) and guilt (I wish I hadn't been so grouchy right before school started).
I walked out to kitchen where my oldest sat. He hugged me and said it simply: "It all will be OK, Mom." I realized that maybe I just need to sit with my emotions, not see them as the enemy. I need to have an awareness that they are there, and that my family will forgive the BEAR and the fragile state... and remember it all will be OK.
Fall will come and the trees will change, like they do every year, and summer will return.
April 11th, 2018
My life is really unpredictable right now.
Recently my 10 year old daughter was diagnosed with PANDAS. No, she hasn’t become a big black and white bear. It’s a long acronym basically describing kids that have strep and exhibit neurological symptoms causing brain inflammation. It’s crazy, because we actually knew it was strep — a clear, positive test. Some cases of PANDAS go misdiagnosed as psychiatric issues, because they miss the strep. Thankfully, I surround myself with amazing doctors and practitioners, so we were on it from the beginning. The part that made me concerned was that she was hallucinating. Yes, my 10 year-old was seeing scary things.
On December 18th we started the antibiotics, which is routine for strep. She was on them for 10 days, which gave her a great Christmas. Day 11 she was symptomatic again, so they put her on something stronger for another 10 days. This pattern of a variety of antibiotics has gone on for 4 months. The hallucinations are gone, but she has these “episodes” sometimes, which last for several hours. She turns sheet white with dark circles under her eyes, and complains of excruciating stomach pain or feels too sick to eat. I have now learned this is not uncommon with PANDAS kids. It is more than her stomach hurting; she doesn't want to do anything. At first I couldn’t put my finger on it, but now I can; she is “depressed,” word I would never have used for her, ever.
Our lives are now unpredictable. She was a happy, social spitfire that was ready to conquer the world, and now there are days where I can barely get her to school, and I have to bribe her to have her best friend over. She is so fearful of going out to dinner that she has panic attacks. She has always wanted to go to Paris, but now she won’t even get in the car to go to Boston. I now wonder how many other children suffer from PANDAS, with all the unexplained anxiety, depression, OCD in children. I can see how one may not connect the dots, because I questioned myself and I knew. We are in limbo waiting to get into a PANDAS clinic. Waiting sucks.
Our lives have been turned upside down, all from one case of strep. I know we will figure it out, because I won’t rest until we do. But it’s absolutely heart-wrenching when your child turns to you, afraid, and asks you, “Mommy, am I ever going to feel better?” I hide in my room crying for fear of her seeing me.
There are times you wouldn't believe she's sick, as she runs through the house fighting and laughing with her siblings. We are on an emotional roller coaster, waiting for some consistency and normalcy. I am learning not to plan anything and to wake up in the morning not knowing what each will bring.
March 1st, 2018
I have learned from being sick with 2 chronic illnesses and meeting with several clients, mostly women who I would dub “ functioning” sick, that women push through. They continue to drive their children to school, walk their dogs, make dinner, be therapists and advocates for/to their children, and many have second jobs outside of the home. They appear fine on the outside, yet they are holding on by a thread.
This happens for many reasons: If they slow down they will never get up; they are afraid they will let people down or, god forbid, society will know the truth, that their life isn’t perfect. We all can relate.
I started WC as a woman for women. WC's mission is to help women to not only reach their optimal health, but become their best authentic selves. We want women to be vulnerable, ugly, weak and strong together, to build each other up and support one another.
WC advocates for women who have chronic illness or simply feel stuck.