“When you try your best, but you don’t succeed When you get what you want but not what you need When you feel so tired, but you can’t sleep Stuck in reverse And the tears come streaming down your face When you lose something, you can’t replace When you love someone, but it goes toContinue reading “Entry Sixty Three- “Fix You””
Tag Archives: Special Needs child 1P36
Entry Sixty- Same Worries, Different Circumstance
I can’t help but think of that woman I saw on the beach… The woman who was wearing the large sunhat that covered her perfectly bald head. (Entry Fifty Six- Acknowledgement) I had a therapy appointment a couple of weeks ago and I mentioned that interaction to my social worker. I became just as emotionalContinue reading “Entry Sixty- Same Worries, Different Circumstance”
Entry Fifty Nine- Feeling Acknowledged
I am not sure if I shared that Oscar was discharged from neurology at The Hospital for Sick Children and referred to a community pediatric neurologist. Although it was (is) tough leaving the security blanket of the Children’s Hospital, it is great news that Oscar is currently not as “worrisome” to neurology as he onceContinue reading “Entry Fifty Nine- Feeling Acknowledged”
Entry Fifty Eight- Leave The Safe
“Leave the safe, explore the new, return to the safe…” (What Happened To You? By Bruce D. Perry and Oprah Winfrey) About two years ago I started therapy. I was a mess. I can still remember my mom telling me that I looked like I was on the verge of tears all of the time.Continue reading “Entry Fifty Eight- Leave The Safe”
Entry Fifty One- Sunday
That quintessential lazy Sunday morning we almost never experience as a family because my husband is usually at work. This past Sunday was different, my husband was home and we all stayed in our pyjamas until almost 10:00am! We started the morning with a nice breakfast and then Olivia was asking to see some picturesContinue reading “Entry Fifty One- Sunday”
Entry Fifty – Stories
I think we all tell stories. We want to have control of our own narrative. The stories we choose to tell are the stories we want believed by others and by ourselves. “One system creates a story for public consumption, and if we tell that story often enough, we are likely to start believing thatContinue reading “Entry Fifty – Stories”
Entry Forty One- Humbled
It is so easy for me to sit in my own worries. I am humbled as I learn of other people’s experiences. I went to the hospital for an outpatient neurology visit last week. At this time, I truly have nothing to complain about. Oscar has been developing in a really positive trajectory and weContinue reading “Entry Forty One- Humbled”
Entry Thirty Nine- Start Where You Are
“Start where you are. Use what you have. Do what you can.” – Arthur Ashe Nobody starts off in the same place. And nobody finishes at the same destination. My son has a genetic deletion meaning that he is missing genetic information. He didn’t get to start his little life at the same place asContinue reading “Entry Thirty Nine- Start Where You Are”
Entry Thirty Eight- My “Special” Bond
I think that I now understand why parents of children who have special needs have a special bond with that child. At least I have come to understand my bond with Oscar. When I say that I have a special bond with Oscar, I should say that I have a very special bond with bothContinue reading “Entry Thirty Eight- My “Special” Bond”
Entry Thirty Seven- A Beautiful Story
In April of 2019 my son was taken via ambulance to the closest pediatric hospital because he was having difficulty breathing. He was 6 months old at that time. It felt like things were spiraling out of control that day. I remember that I had taken him to the walk-in clinic because he seemed toContinue reading “Entry Thirty Seven- A Beautiful Story”
A Real Mom Story on Raising a "Special" Family 