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By: Melinda Lancaster

There are times, as a parent of a child who cannot communicate, that I have no idea what my child is thinking, why she cries, why she laughs, why she says “ow”. None. Why does she sometimes burst into tears…is she thinking of her sister so far away, is she lonely, is she missing someone, did something happen? Is she thinking of all the things she can’t do, is she grieving the loss of what she might have been?

I do. Not as much as I used to, but I do. There are many parents who will understand this, those who've lost their children, those who have severely disabled children, and others whose children aren't. But, I can only speak for me.

Once, I had a perfectly normal baby girl, one who was going to grow up, fall in love, have her heart broken, who would want me to “do” her hair, and put on makeup. She would go to the prom, be a scientist or a teacher or an astronaut or none of those things. She would get married, I would dress shop with her and cry when she found “the one.” I would watch her change her name with a kiss and cradle her children in my arms. And, then….I didn’t.

Poof. All those dreams sucked from my heart in one fell swoop of “your child will be disabled for the rest of her life.” Did I love her less? Of course not. But grieve, oh yes, I did. I cried for days. She was not one bit different than the day before, but I was different. I was now a special needs parent. How can that happen in just one moment? One moment you’re a normal mom, and you’re just wondering…”I wonder why she’s not talking anymore?” It’s just a wonder, not a real worry, just a thought, almost discarded. And then it’s YOU, the normal regular ole mom full of dreams that you have to discard.

But, you adjust. You do. You move ahead, because what else can you do. But then, Kindergarten comes along, except no one cares about your child’s class on parent night. No one’s even there when you go. You don’t get to meet the teacher, see the other students. And that little tiny bit of normal you were hoping for, well that’s just sucked right from under you again.

And the playground, full of laughing, running children is hard to face, as you place your child in the baby swing at seven because she can’t hold on yet, but you do it because you know a smile will greet you and it’s a little gift of normal, a part of a dream you once had of taking your perfectly normal baby girl to the playground and watch her play. It’s not exactly the dream, but it’s close, and close is good in this world of special needs.

These sorts of moments come when you least expect them, the ones that almost break you. Like when you realize Halloween will never ever be fun and you stop dressing her up for it. Or when there aren’t any children at her birthday party and she never has a sleepover and she never, not even once, gets an invite to someone else’s birthday party that isn’t family.

And JUST when you think you’re through, you have no loss left to grieve, bam, she’s a senior and she should be going to the prom, but even if she could, you’d never find a dress to fit, and who would take her-no sweet boy, who was so nervous he could barely get the words out and then jumped up with a fist pump because she said “yes”. 

But, there are great joys that counter all of that. A new skill, a new word, snuggles beyond the teenage years. And while I now realize there will be times I will grieve what could have been, the journey for a special needs parent, at least me, is to learn that the achievements are sweeter, the laughter more melodious, and the adage that “something worthwhile is never easy” becomes more true.

So, that’s why against almost all the odds, I strive to teach my daughter to read, to communicate, and on more basic levels to feed herself, to find ways to open the world to her despite her limitations. And now I have new dreams and hopes. They are no less wonderful, because what could be more wonderful than putting a book in her hands and having her understand.

I know that “what might have been” will stay with me, though Time will lessen its pull, but Hope for what might be, that’s what’s filling up the space left behind.

~Melinda

By: Liz S
July 2, 2012: As we sit in the doctor’s office waiting for my biopsy results, I am not feeling confident. Something is not right. I am panicking inside but smiling to reassure my husband while we hold hands in silence. Then my doctor enters the small, sterile room and smiles at me, even  makes a little small talk. I am suddenly relieved, phew, all of this worry over nothing. I am obviously fine. Then he sits and says, those deadly, dreaded words, “You have cancer”.  What? Excuse me?  I must have heard that wrong. But sadly as he continues to talk, I realize that I had heard him perfectly. At 42 years old, I have cancer, RCC he called it, Renal Cell Carcinoma a.k.a Kidney Cancer.  
 
I had come prepared with a notebook, ready to ask questions and collect as much information as possible. I had thought of so many questions ahead of time and had written them out knowing my mind might go blank after  hearing potentially bad news.  And it had.  In fact, I could barely speak. My mouth went dry, my stomach turned and my mind began to race. I had only one thought… how would I tell my 8 year old daughter that I have cancer?  I quickly decided that I wouldn’t. No, I would spare her this traumatic childhood memory. I would be fine. I could hide my illness, downplay my surgery and continue on with life as she knew it.  For the next 45 minutes I nodded my head, took notes, and I asked some of those questions. It is all a blur, and after a while I looked at my husband and said, I am done. I could not process any more information and I wanted to leave. The doctor understood and we made a follow up appointment in two weeks, providing us the much needed chance to digest this life altering diagnosis, regroup and make decisions on my treatment plan. 

We had been so confident in a positive outcome that we had  dropped our daughter Charlotte off at my parents’ house and were meeting up  with them after my appointment.  We had always been the three musketeers and went everywhere together so this was no different. Now I had to call my mother and tell her this news. I had to say the words out loud and then ask her to put on a happy face in front of Char.  That was one of the worst nights of my life. I dried my tears, walked into my mother’s house and smiled. The four of us adults sat through dinner, making small talk and trying to hold it together. It was brutal but for the love of Charlotte, we did it. 
 
I soon realized that living with a secret like cancer was not easy. Covert phone calls, whispered conversations and stepping outside to chat in private had caught the attention of my daughter’s radar. She knew something was up.  I started to imagine her sitting in bed, wondering what was going on. Were we getting divorced? Was the house going up for sale? Was something wrong with her? I realized then that I
had to tell her.  Not us, not my husband and I, but me.  I called our pediatrician who had known us since Char was 2 days old. I asked for a call  back, and when she did I laid it all out for her.  I was sick. We were scared. 
How would I tell Charlotte? Should I sugar coat it? Should I use less scary words? I did not want to use the word cancer. I needed help.  She was amazing. She told me I needed to be 100% honest. I would use the C-word, I would cry and let Char cry and ask questions. She explained that fighting cancer was one of the hardest things a body can go through and I would need every ounce of my energy to get well. If I was spending energy keeping secrets and shielding Char from the sadness and reality of my situation, I would
be hurting myself. For Charlotte’s sake I had to tell her. Children are so tuned into their families and she assured me Char was  probably imagining worse things were happening. She told me Char was more
 stressed out trying to guess what was wrong then to actually find out the truth, deal with it and move on. It was about empowering Charlotte to some  extent and that made sense to me.  My husband, David, was amazing and did not try to insert himself in this personal decision. He had faith in me to pick the right time and say the right things and believed I should have this experience with our daughter. 
 
It took me a week or so to tell her. It was not exactly planned, and all the words of wisdom I had thought of were lost to me in that moment. We were just hanging out alone at home one morning, doing some crafts and I thought to myself, now is the time. I had been dreading this moment. Sobbing, wailing, and just consumed with guilt and anger over having to have this conversation with my precious girl. SO I just began, I put one word in front of another until I had spoken the truth, I had cancer. Somehow I mustered the strength to stay
calm and not start crying. I did not want to scare her more than my words already were. As I quickly found out, what she knew of cancer was mostly from movies and TV shows. It meant death; it meant losing your hair and being in pain. I quickly assured her that my diagnosis was not terminal and my prognosis was good after completing my treatment.  She asked if I was in pain. No, I answered. How did I know I had cancer, she asked? It was a fluke, a small finding from another test I had. It was a miracle that it had been caught so early and I was sure I would make a full recovery.  After that many questions came one after another. Some seemed almost silly to me, others were painful. Was it contagious? Would she get it? Would I still be able to volunteer at her school? Would she have to buy lunches now? Was I going to die? Did I believe in heaven?  I answered  every question that day, and those that came later on, with honesty and love.  It was a long summer and fall. My surgery was in September of 2012 and the reality was, everyone suffered. I was not able to shield my closest loved ones from the pain, fear and reality that had come into our lives. I still have a lot of guilt over this. I did give Charlotte choices around my surgery. It was attempt to give her some power over her life during this helpless time. Did she want to be in school that day and have a sleepover with her friends?  Would she like to be at the hospital or in Boston nearby with family? In the end, my awesome mother volunteered to take Char to the Museum of Science and kept her occupied that day.  They were in contact with my family at the hospital and came back once I was out of surgery, in my room and ready for
visitors.

My recovery was extremely painful and it took a couple of months before I started to see a light at the end of the tunnel. After the first few weeks in bed, I began getting up to see Char off to school. Then I would rest
all day and get freshened up to greet her after school. I would last about half an hour then it would be back to my bedroom while David cooked dinner and helped with homework. Some days I could not even do that. Some days Char walked in to chat about her day only to find me in tears with such pain on my face, that she
just quietly walked away. 

The partial nephrectomy that I had on my left side was successful! This year has been a much happier and healthier one and we are even  closer from surviving it all together.  We have spent time giving back, making
dinner for those in need and paying it forward. We are more engaged with those around us and involved in our community. We saw the good in people and cherished the out pouring of support we had.  I have since talked to many cancer moms who do not want to tell their children about being sick. I encourage them to do it and share the words and advice that helped me through it. Dealing with your own mortality is a scary thing and having support is essential. My daughter knows I trusted her enough to tell her the truth. She saw friends and neighbors step in to support us. Dropping off dinner and baked goodies, sending flowers and cards, and her favorite gift was a shoe box filled with candy, popcorn and a DVD- movie in a box, from a thoughtful friend.  We do not talk about it much these days. It is not a happy memory for us. But it is part of our families’ history and I am proud that we made it through together, the three musketeers, all for one and one for all.