Lisa Joan Anderson

It’s been a hard adjustment for all of us: life without grandma since October 22nd. Clara got to spend some time with grandma on the 21st and we went back the night of the 22nd and Clara walked down to her room that had all been cleaned up and the bed remade ... where was grandma? I explained to Clara that Grandma went to heaven. We spent a lot of time talking about heaven and why grandma had to leave. When we had grandma’s internment on November 6 I had already explained t...o Clara what that was about but Clara told her teachers and friends at school that she was leaving early that day so she could go see grandma. When grandma’s urn was on the ground and her photo on a table behind the urn and the pastor was talking, Clara kept asking me, Where’s grandma? I see her looking back at photos of grandma ... I’m not sure she gets it and she misses grandma hugs - we all do. How do you explain death to someone who only can grasp concrete reasoning? . . #22q11deletionsyndrome #intensivemultitreatmentintervention #specialneedsmom #specialneeds #autism #tubie #blenderizeddiets #truncusarteriosis #nothingisimpossible #gonetoheaven #energy #death #therapy #failuretothrive #ittakesavillage #specialpeople #medicallyfragile #tracheostomy #choanalatresia #cancersucks #ventilator #congenitalheartdefect #lowmuscletone #bronchialmalacia #tracheomalacia #guthealth #criticalcare #concretereasoning #heartheavy

9 years ago Clara had to have her pacemaker replaced (and had the same surgery again 3 or 4 years later). Unfortunately they haven’t yet figured out how to keep pacemakers running for years and years (she’ll be due for another pacemaker change in under 2 years). She earned her bravery beads after that surgery! Swipe to see her up and walking around within 2 days ... she liked to find the playroom, theatre and the blue piano! . . #CHD #pacemaker #truncusarteriosus #surgery #tubie #22q11 #blenderizeddiet #feedingtube #ftt #autism #digeorgesyndrome #specialneedsmom #specialneeds #specialneedsnutrition #disability #geneticdisorder #18yearsoldnow #constipation #raredisease #guthealth #medicallyfragile #downsyndrome #reflux #busymomlife #momtribe #criticalcare #medicalmom #motilitydisorder #GERD #strongimmunesystem

Super cold morning waiting for the school bus at -2C. Had to pull out Clara’s winter coat, hat and mitts (underneath her plastic disposable gloves for the school bus). It was nice that it was at least daylight! . . #autism #intensivemultitreatmentintervention #specialneedsmom #specialneeds #22q11syndrome #tubie #blenderizeddiets #truncusarteriosis #nothingisimpossible #believe #energy #funfactor #therapy #failuretothrive #ittakesavillage #specialpeople #medicallyfragile #tracheostomy #choanalatresia #sensoryintegration #ventilator #congenitalheartdefect #lowmuscletone #bronchialmalacia #tracheomalacia #guthealth #criticalcare #hardwork #grateful

There is no accident why you’re on this journey. Yet the struggles and hardships make us think that there was some mistake or have us hoping that somehow this will be taken from us. After all, none of us asked for this. How do you react and feel when faced with the difficult moments? Do you let them break you? Or do you pick yourself up, dust yourself off, and take another step forward? What if we changed how we thought about all this? What if everything about this... Special Needs Experience is made available to us to make us stronger and to help us change the world? What if we asked ourselves, What can I learn from this? rather than spending time comparing our child and our life to our neighbours? We get one life to life. Let’s find JOY in all the moments. You have a story to share with the world that will help make this a better place. We would love to hear it and support you on your journey ... please do share below! xo . . #believeinyourself #lifeishard #specialneedsexperience #specialneedsmama #specialneedslife #trach #feedingtubeawareness #tubies #criticalcare #digeorgesyndrome #22q11deletionsyndrome #holistichealthcare #autismlife #congenitalheartdefect #truncusarteriosus #bronchomalacia #tracheomalacia #ftt #lowmuscletone #nothingisimpossible #letyourlightshine #geneticdisorder #chronicdisease #raredisease #gerd #busymomlife #motilitydisorder #strongimmunesystem #blenderizeddiet #medicallyfragile

Happy Halloween! Clara decided fo put on Ghostbusters and apparently finds this scene incredibly funny! She keeps rewinding it and watching it over and over and over ... It seems that not much scares her! . .... #autism #intensivemultitreatmentintervention #specialneedsmom #specialneeds #22q11syndrome #tubie #blenderizeddiets #truncusarteriosis #nothingisimpossible #believe #energy #funfactor #therapy #failuretothrive #ittakesavillage #specialpeople #medicallyfragile #tracheostomy #choanalatresia #sensoryintegration #ventilator #congenitalheartdefect #lowmuscletone #bronchialmalacia #tracheomalacia #guthealth #criticalcare #hardwork #happyhalloween

It’s 2:36 pm and she’s home from school already with a movie playing (on the other side of my office wall) while we wait for the personal support worker to show up and spend the next 3 hours with her. It’s difficult to concentrate with both of the girls home so early in the afternoon (the other one was home at noon!) while I try to get my life reorganized after the passing of my mom last week. For weeks - well probably more likely months - my work and life have been negle...cted while I cared for my mom and my special gal ... after months of advocating for additional hours of help from our Local Health Integration Network (LHIN) they finally provided us with 15 hours a week, up from the 6 hrs we were been getting since our move here 2 years ago. No warning that they were finally going to do this ... just an email on Oct 20th stating what the new amount would be retroactive to October 1st! Very grateful but so frustrated that I (and so many other families) have to fight so hard for something that should automatically be provided. . . #believeinyourself #specialneedsmama #specialneedslife #trach #feedingtubeawareness #tubies #criticalcare #digeorgesyndrome #22q11deletionsyndrome #holistichealthcare #autismlife #congenitalheartdefect #truncusarteriosus #bronchomalacia #tracheostomy #tracheomalacia #ftt #lowmuscletone #specialneedsadvocacy #nothingisimpossible #letyourlightshine #geneticdisorder #chronicdisease #raredisease #gerd #busymomlife #motilitydisorder #strongimmunesystem #blenderizeddiet #medicallyfragile