After we were discharged from the hospital (the first time) we were introduced to soooo many new people; Nurse Case Manager, Occupational Therapist, Physiotherapist, Speech Therapist, Deaf and hard of hearing Teacher, Blind Low Vision Therapist and a Dietician. We were overwhelmed with appointments. But I know that early intervention is really important and I was happy to have so many people involved and I did everything they told me to do. Life immediately became all about Oscar.
People would come to the house, and I would ask my daughter to play nicely at her desk while her brother had an appointment. Or we would go to see his pediatrician, family doctor or the audiologist or go down to Sick Kids for the day for a specialist appointment. It all became about Oscar, but it had to. How quickly life changed for my daughter. I think every sibling goes through an adjustment phase when a new baby enters the home. But for my daughter the adjustment was huge. It went from her and I having a lot of one on one time, to me literally putting her in a corner with a coloring book for an hour while the rest of the room paid attention to Oscar. The guilt would eat me up. I really struggled with this. I cried almost as many tears for my daughter as I did for my son.
I think she was too young to really notice, but maybe she did? I felt like her behavior changed with her dad and I. She became a little bit more aggressive. But it is hard for me to determine whether this behavior would have been less had Oscar not had so much medical attention? I knew the reason why Olivia was behaving this way, and because of my guilt, I probably let her get away with more than I should have. Social workers said that we needed to stay consistent with her punishments, to keep structure for her. I think it helped, but it took awhile.
February 6, 2019, 4 days before Olivia’s 4th birthday party Oscar started having seizures again. I took him to Emerg at our local hospital and from there we were transferred back down to the Hospital of Sick Children in Toronto. This threw me for a loop. I was expecting that the medication would take care of Oscar’s seizures. I didn’t know (or hadn’t listened when they had told us) that seizure medication is weight dependent so as you gain weight, you outgrow the dose. And after more tests and a thorough neurology exam, they determined that nothing new was going on and that he had just outgrown his medication. They discharged us. Oscar was having a seizure about every 2 hours and we were sent home. I was terrified that this could be our new normal.
I would have been devastated had we needed to cancel Olivia’s birthday party. We arrived home just in time to celebrate her. Luckily, I had had her party all planned and prepped. She was finally the center of attention and I was so incredibly happy!! Oscar had a seizure during the party while my sister was holding him. Discreetly my sister and I took Oscar into the other room, away from the party until it was over. I didn’t want to make it a big deal, I didn’t want it to happen in front of Olivia and all of her friends. It was very important to me that this party, this day be all about her. When I look back at the pictures from her 4th birthday party I notice how happy she was with all of her friends and it makes me happy that we were able to protect her innocence that day.
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