The Sting of Back to School

I have been dreading the first day of school since school ended in May.

In my heart, I knew Soraya would likely not attend in-person school this year. I knew she’d started 6th grade on a modified 1.5-hour daily schedule, then told us in April her body was just too tired. I knew we’d pivoted to her attending only on Fridays for lunch. I knew the odds she’d regain the energy to attend 7th grade in person wasn’t likely...yet as this school year got closer, I’ve felt crushed, defeated, and just sad.

I keep thinking – how did we go from buying school supplies to installing stair lifts so Soraya can access the different floors of our home?

A big part of being a mother to a child with complex needs is advocating for them. We’ve spent so much time helping get Soraya integrated into our public school setting in a way that accommodates her needs...but there is no accommodation I can advocate for that would minimize her fatigue enough for her to choose to attend.

While Soraya is fine with her choice, I’ve realized how much of a struggle this is for ME. I am grieving! I suddenly feel like I don’t have a 7th grader anymore. Seeing every 7th grader in my office, I fight back tears. With every picture or post of 7th graders going to school, I feel a pit in my stomach and a sting in my heart. There goes another aspect of Soraya’s life.

Leena and Yasmeen both asked me to fill in their teachers and the vibe felt dismal all around. Leena was not excited about school either. She did not want to leave Soraya all day and wasn’t ready to be surrounded by peers who didn’t understand what our life was like.

When I asked Yasmeen what she hopes for this school year, she answered “for my sister to not die.” 💔

There you have it. We are surviving. I still took the pictures on the first day of school...as is and as is we are. This is the reality of anticipatory grief.

What’s helped:
- A comforting dinner from Soraya’s old classmate’s family
- Super kind adult friends (her besties Courtney and Josh) to hang with Soraya on what would have been her first day
- Leena and Y LOVING their teachers

What I’m learning is I am mourning something that Soraya is not. It’s so very interesting how we experience things.

Pictured: Leena on her first day of 4th grade, Yasmeen on her first day of sophomore year, and Soraya meeting with her two 7th grade teachers virtually.

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Why is Soraya Always Wearing Bandages?

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Soraya’s 3-Day Hospital Stay