We got a call this morning that Hope's port removal was scheduled for TOMORROW morning. Within a few minutes it was being rescheduled for a later date because of a cough she is still kicking from last week, but for a few heart-pounding moments I was overwhelmed by the realization that our last visit to the "downstairs doctors" was at hand and that a huge milestone would soon be behind us. (Stay tuned for a new date!)
After the adrenaline subsided, I thought about how this is just one in a series of big scary-happy-thrilling-anxious moments we are in for in the next few weeks - including Hope's entry into kindergarten two weeks from today. It's momentous for every kid - to start "big kid" school, to spend more of the day with peers and teachers than at home or tagging along on errands or doing little kid classes and preschool. For Hope, however, this step seems monumental for reasons big and small, some obvious and some perhaps less so.
When we first heard how long Hope's leukemia treatment would be, I remember thinking that it would be over right before kindergarten began. And during the darkest days we, of course, worried we would not make it to this moment. (God, I hate even writing that down.) But now here it is.
She is sparkling, full of energy, curious and chatty. Ready for new friends and adventures. She's been working on letter recognition, counting, and writing her name all summer. She's been drawing some mildly recognizable stick figures, putting together larger puzzles, playing card games with attention and stamina.
We have, like most parents of kids with Down syndrome, been preparing for this since the earliest days of her infancy. All the home therapy, the IEP prep seminars and conferences, trading fears and lessons learned with other parents, and late nights spent poring over horror stories about segregation, abuse, and low expectations on Facebook, and then later nights feverishly researching special education law and suggested accommodations for her IEP.
But here's the truth: none of the parent seminars, legal advice, therapy sessions or skills we've been checking off the list are really worth a damn thing if the school doesn't want her. If the educators don't believe that every child is vital to the community, that learning is more than a one-way street of dumping facts in and tracking the data to define success, if we'd had to fight for the number of minutes she could spend in the "regular classroom." (Does that shock you? I've been learning about special education for almost 6 years and I am still dumbfounded that the battles often revolve literally around the number of minutes that children are "allowed" to be in the classroom with their peers.)
While I'm sure there will be bumps and we may end up with our fair share of battles and disagreements, we are starting at a place unfathomable to most families in our shoes - a school that wants her, that fundamentally believes in inclusion, that celebrates learning differences as one more form of diversity. The open arms awaiting Hope at City Neighbors have been preparing for her since she was born. (Check out Baby Hope in her "Future City Neighbor" onesie!!).
Shortly after she was born the principal and the founder/executive director both told me point blank that "of course" Hope would come to City Neighbors. More recently, teachers have been reading and attending professional development in preparation. And in the last year we've been meeting with her future teachers and talking and thinking about what will ease the transition, what accommodations will be needed, and always building the trust and communication that are ultimately way more important to the success of this adventure than how many letter sounds she knows coming in or whether speech services will be provided pushed in or pulled out.
Does this kid look ready for takeoff or what?
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That picture reminds me that I never posted anything from our big trip this summer - to Orlando for the Down syndrome convention with bonus days at Disney World and Universal Studios. As far as Hope was concerned, I can summarize the trip as follows:
1. She met Mickey Mouse.
2. She met Barney (!!!!)
I would add a few more details. We discovered that Hope loves fast roller coasters (nothing too crazy or upside down, but still legitimate roller coasters), but hates any ride (even totally tame, pleasant "kiddie rides") if it's dark. She loves meeting characters - Mickey, Minnie, Goofy, Donald, the Cat in the Hat, whoever - if they had on a funny suit, she would give them giant hugs and pose for a picture. She loves all forms of transport - moving walkways, trains, boats, buses, whatever - but was too scared to look out the window of the airplane. All of us minus Hope loved Harry Potter at Universal. And the Down syndrome convention provides some of my favorite days of the year. Next year, Sacramento!
