Entry Forty Six- Pressure

Somedays more than others I feel an extreme amount of pressure. There is so much pressure raising kids in general and even more so when your child has special needs. In regards to Olivia (my perfectly typical daughter) we ensure that she is enriched socially, cognitively, physically and emotionally. With Oscar (my perfect neuro- atypicalContinue reading “Entry Forty Six- Pressure”

Entry Forty Five- “Small Percentages”

Back in October of 2020 Oscar had tubes put in his ears in the hopes of correcting some of his conductive hearing loss. The day of his procedure I was nervous (like any parent of any child going under a general anesthesia would be). Things had (have) been going so well and I was worriedContinue reading “Entry Forty Five- “Small Percentages””

Entry Forty Four- February 10th

Everyone has special dates that stick out in their minds. For me of course those dates include birthdays and anniversaries but a new date was added to my “special dates” and that is February 10th. Feb 10, 2019 was the date of Oscar’s last seizure. I remember everything about that day. February 10, 2019 wasContinue reading “Entry Forty Four- February 10th”

Entry Forty Three- Panic Attacks

I had never had a panic attack before Oscar. If you have never had one, I will try to explain what they feel like to me. To me, it feels like I have lost control of my body and it is a conscious challenge to regain that control. I have experienced several. The last oneContinue reading “Entry Forty Three- Panic Attacks”

Entry Forty Two- I Encourage You To Write

I used to speak to my social worker weekly, then biweekly, and I now probably every other month. I still cry for varying lengths of time during every session but I do feel lighter after, like a bit of my worry is gone. “Silence reinforces the godforsaken isolation of trauma” (Bessel Van Der Kolk) IContinue reading “Entry Forty Two- I Encourage You To Write”

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”