Gaby Mammone

Transcript

gabi Mamoni unusual advice from a therapist Gabriela you have multiple sclerosis MS she proceeded to tell me that I had so many lesions in my brain in my spinal cord that within 10 years I would be in a wheelchair I would have slurred speech and I would experience memory loss I experience darkness have you ever been in darkness now I'm not talking about the kind of darkness where you have to close the light because electricity bill is so high you can laugh I'm talking about the kind of darkness where you're in despair and denial living with MS and being a mom was hard there were

so many days where I wanted to hold my children but I couldn't for fear of dropping them my son is epileptic there were many nights where when he was having a seizure in his sleep I couldn't get to him on time because I couldn't walk properly my daughter there are many times where my esophagus had my throat inflamed my nerves inflamed so much that I'm not able to speak it's heart-wrenching when she cries mommy why aren't you singing with me anymore I often ran to the bathroom my safe haven and one day I was there in this puddle of tears this ocean of anxiety and

I remember feeling sorry for myself sorry for my circumstance I was remembering all the voicemails that I didn't want to return for fear of adding more tasks and I was afraid of of my business failing because there was so many things to do when I was fearing that I wasn't being a good mom and and you know the IEP meetings and the management meetings and the doctor's appointments and the paperwork in my my hell was getting worse than my fingers in my lethargy and I just wanted to stop so I called my therapist my mother my Italian mother so she came and said Gabriela open

the light open the light you can laugh at that - and at that moment I noticed a little glimmer of light through the bathroom door and then I got it what she meant was she wanted me to focus on where I wanted to go not on where I was why did I need to feel sorry for my circumstance it's the events in life that keep us who we are but it's how we deal with them that make us who we are and when we are in darkness that is actually when we're able to see the light but we just have to try don't fight with

reality in your own situations embrace it and look for that light and open it when you feel pain pain is a messenger to follow the light and accept your circumstance and make the best of it in my situation I'm now an ambassador with the MS Society of Canada helping people with episodic disabilities voluntarily I'm with government relations and I'm proud of that I can now laugh at some things like yesterday I was staring at the orange juice carton because it said concentrate I may never be able to run a marathon but I will be happy when I can put my underwear on without falling I

remember when I mentioned to that my neurologist said that within ten years I would be in a wheelchair I would have slurred speech and I would experience memory loss I was diagnosed fifteen years ago I am still standing you understood what I had to say and I remembered this speech

Transcript generated from the recording and lightly cleaned. Some names and wording may differ from the spoken speech.

Transcript

a well trained speech and language pathologist told me that I needed to learn sign language in order to communicate with my son but he could speak and he could hear and he was just a normal kid imagine yourself six five six years old in school and all of your peers were talking about a well anticipated birthday party that was happening this Saturday how would you feel if you were the only kid that wasn't invited I'm the mom of that child you see my Luca he was an average kid he loved electronics he loved to play tag he loved board games but maybe what made him

a little different was that he was nonverbal he could speak in my home but outside of our home no one heard his beautiful angelic voice not his teachers not as peers not my extended family Luca had a severe childhood anxiety it was so extreme that when he was in a social setting he would freeze he would shake and it was like he was frozen in his own body and as his mom I wanted nothing more but to help my son but I didn't know how and he would come home from school on a Monday after the kids had that birthday party and say mom when

do I get my first loo bag then came the day where he came home with his first invitation to a birthday party you can imagine how ecstatic I was that we were finally going to a party when we had arrived he was a little overwhelmed with the bouncy castles in the life but you know what he was looking forward to getting his first loot bag and then at the end of the party a clown came in and he said hello boys and girls if you would like a loot bag line up here and all you have to do is say to the birthday boy happy

birthday Daniel my son shoulders shrugged it's like he was melting so I went to line and I waited to in line to get his loot bag and when I was almost at the front of the line I turned back and he was gone I ran outside screaming for him and I saw him across the street he was safe and I thanked God for that but he is weeping in his own puddle of tears and when I ran to him and I hugged his little body I could see the trails of his tears leaving permanent imprints in his skin I felt like a failure I don't

hit a mom not connect with her son and get him to integrate and feel included in this world you know when I look at her journey when he was still six and nonverbal I tried so many things I even went to his school I happened to find myself in the parking lot at recess watching him oh come on like you've never done that before moms and dads come on alongside of this I was still learning sign language but I didn't want to use it just yet I thought it's time for me to try some different things would you believe the next day in his knapsack

was a loot bag from that party he was so excited and that mom had sent me a note and that note said you matter and you are enough you're a good mom and that's what I needed to hear to realize that all I needed was to connect with him you see all those years that I wanted him to speak I wanted him to be the way I wanted him to be but what I realized is I needed to give him the tools and the resources to be who he needed and meant to be so we started a new journey and I'm so glad because as

I was learning this sign language I thought I just don't want to speak with my hands you see being Italian that comes naturally you see you know and it's like I don't know if you know but in sign language this means no but in Italian this means you want to more basta so I was really struggling but what happened next was interesting I found different ways to connect with him I went to his school a half an hour before and a half an hour after to play games hide-and-seek board games and electronics so he could hear his voice and what it sounded like in the

school I'm grateful for the teachers that allowed us to do that I'm grateful for all the people that helped us and guided us and what happened in that journey was amazing because through all the training my son now speaks and says the morning announcements at school I never needed thank you I never needed to learn sign language other than to say I love you thank you

Transcript generated from the recording and lightly cleaned. Some names and wording may differ from the spoken speech.