#dsact

well, it finally happened. 

after a month of summer vacation (13 days with me in chattanooga, 18 days with my parents in montgomery), my child is back in school! as it turns out, she is not completely feral after that long of a break, and today was a very special day in that she started at a new pre-school that we are pretty darn excited about.

when we arrived in austin, rose was receiving supplemental oxygen for pulmonary hypertension, was almost completed tube fed via gtube, and could sit up on her own but at 11 months had very limited mobility. i was primed for a major back injury from carrying all that shit around (which did, in fact, knock me sideways later that year - just the day before chase and i were supposed to hike down the coast of portugal. i will lie and say i have recovered from that devastation). it was extremely difficult to find child care facilities that were willing to take her on, even centers that were accustomed to supporting kiddos with special needs or medical issues.

sammy’s house entered our life at exactly the right time, and i will always consider that place home. they specialize in care for children that require ongoing medical attention and/or with developmental delays, and create an equally welcoming environment for children with special needs and their typically developing peers and siblings. when i brought rose in to discuss childcare, the program director didn’t even blink. i will always be grateful for that. it was the first time i had some hope that what our child was experiencing wouldn’t be an insurmountable burden. having places like that in the community is everything.

as rose has gotten older and the list of chronic medical considerations has gotten shorter, we have made a point to increase therapy visits and do everything we can to expose her to music, art, experiential play spaces. this push has been really rewarding and we have watched our daughter blossom. for me, it has also resulted in what feels like a constant battle with my insurance company to cover speech and physical therapy. in case you didn’t know, if you have a stroke, speech therapy services are covered. this is good, and important. however, if you have a genetic condition that causes cognitive delay, low muscle tone and fluctuating hearing loss...you’re going to need to be prepared to pay for therapy services out of pocket. at some point, the money and energy available to constantly put towards this battle just dry up. 

i learned about the rise school of austin through other parents in the down syndrome community, and when i visited for an open house last year i was at a complete loss for words. it was literally ALL THE THINGS i have ever dreamed for my child. the rise school is austin’s only pre-school that provides an inclusive curriculum for children with and without disabilities, and their faculty includes amazing teachers but also speech, occupational, physical and music therapists. the goal is to provide a structured curriculum that allows kiddos with special needs an opportunity to learn the skills to be as independent as possible, and model behavior after their peers. for typically developing children, this gives them exposure to different styles of communication and a chance to practice patience, compassion and empathy (all toddlers are extreme narcissists - EMPATHY IS AN IMPORTANT SKILL). all children can remain enrolled until age 6, at while point they would (hopefully) smoothly transition to kindergarten.

so, this is a big change for us, but an exciting one that we hope opens up new friendships and challenges for our daughter. today she basically sprinted into the classroom, promptly abandoned me, and had a really terrific day. we have learned that she is very into carrying a backpack, despite the fact that her backpack is too small to actually be useful.

Angèle Delehoussaye, Ryan Delehoussaye's wife, is auctioning off 5 of these Consent to Treatment Posters.The poster was donated by Blue October and will be autographed by the band, with a special thank you note from Matt Noveskey, as 100% of the sale of this poster will be donated to 'Liam's Lions' for the 2014 DSACT (Down Syndrome Association of Central Texas) Buddy Walk.  The links are as follows:

Life isn't fair. Nothing lasts forever. Time heals all wounds. 

These clichés sound vapid and trite to anyone who suffered a devastating loss. And yet, they endure. Maybe because they contain a degree of truth. 

Of course, bromides like these aren't always true. Once we become parents, for example, we are parents forever. Nothing can change that.

Three hundred eighty-two days ago, our daughter Amalia joined us. Seventeen days later, she died. Which makes today an anniversary (one of many for us). 

Time has taken on new meaning since Ama entered our lives. Every day brings a new milestone, each connected to Ama and what her life has revealed to us about the world.

Of all these revelations, the things we've discovered about Down Syndrome loom large. But while a diagnosis of DS is a sign of challenges to come, it's also the beginning of something incredible. And thanks to the support of people who care, it's becoming more and more possible for children with DS and their families to enjoy life to the fullest. 

Amalia was a beautiful and serene child. She exuded a sense of calm, and brought joy into the lives of everyone around her.

We have no choice but to accept and embrace our loss. We will always love Ama. She will always be our daughter and our first child. We will never forget her, and she will continue to teach us new things for the rest of our lives. 

If you'd like to help children like Amalia and parents like us face the challenges of DS, please donate to the Down Syndrome Association of Central Texas.