Sleeping through a home PT session, July 2019

After a fairly typical morning of physical therapy, followed by a visit from Adelaide’s palliative care team, immediately followed by an oxygen tank delivery, I finally closed our front door and briefly contemplated installing a revolving door before remembering that they aren’t stroller or wheelchair accessible. Our condo’s front call box rings to my phone and this happens so frequently that our dog, Tabasco, now associates my phone ringing with someone coming into the house. Every time my phone rings he runs to the door barking and scratching waiting for the visitor that has obviously arrived with the direct intent of providing him attention. He is visibly disappointed when it is an actual phone call. Pavlov fail.

As part of our morning routine, Adelaide’s nurse and I discuss what appointments she has for the day - even though I’ve cut back significantly on her therapies over the last year she is still a busy little girl. At one point we were traveling 45 minutes for bio-feedback therapy and another 45 minutes for hippotherapy - all in the same day. Then on another day we would go 20 minutes to an amazing therapy clinic that had every piece of equipment under the sun. As Adelaide has grown more and more unstable, extended drives in the car no longer feel safe. At this point, we only utilize services that can be offered in our home since the less transport the better, both for her health and my sanity.

Adelaide and her horse Ernie at hippotherapy October, 2017

Quick break here to note that I LOVE that everyone is able to come to our home. Not to mention, that without Adelaide’s Army I would have mentally, physically and emotionally combusted by now. This is definitely the best option, but its just another way that the special needs and medically complex “normal” is soooo very abnormal. For most people, home is their private space, a place where they can be their true selves with all pretenses removed. Imagine waking up in the morning: yesterday’s mascara that you didn’t get entirely off the night before smudged under one eye, braless, in your PJ’s, pre-coffee, and maybe you’ve brushed your teeth. You walk out of your bedroom and are greeted by the cheerful night nurse ready to give you a verbal medical report before she heads home for the day. When we had our first night nurse, I made sure I was mildly presentable before leaving our bedroom in the morning, both out of vanity and courtesy. This lasted all of a week until I relented to usual habits - I mean it’s early and the coffee isn’t event brewing yet - lets be realistic here, people. If I’m completely honest, I’m doing well if I’ve added a bra by the time our day nurse arrives. We’re all women, so it’s cool right? Please tell me it’s cool. When Miguel enters the room with his long curly hair all astray, looking borderline homeless, I decide it’s cool.

To provide the best care for our daughter we have invited the world into our most sacred of domains, our home. Perhaps, that is one reason that it is so easy for me to share in this blog. On any given day, complete strangers have seen our baskets full of clothes, toys and shoes strewn throughout the room, dishes in the sink, and a garbage bag by the door needing to be taken out. All the things you scramble to tidy and hide when you know you have guests coming over. We’re not slobs but our home is lived in… because we live here… and as a result our proverbial and, not-so-proverbial, dirty laundry is out for all to see. Keeping our home guest-ready 24 hours a day ain’t gonna happen with a dog and two, who am I kidding, three children.

Of course, I can’t bring any of this up without commending the nurses, therapists, social workers and technicians that bear the sometimes awkward responsibility of coming into other people’s homes. This bizarre reality is a two way street and, oh, the tales I imagine they could tell. Somehow, I think my empty wine bottle(s) and Miguel’s dirty socks are the least of these horror stories.

I call this one “Yes, Jackson?” taken gleefully by Jackson himself September 2019

I still have occasional moments of vanity or embarrassment but not nearly as often as I once did. Living and growing with Adelaide over these last nearly four years has humbled me in ways I can only begin to describe on these pages. For example, I never used to leave the house without make-up, but you know what? Adelaide’s medical team has seen me without my face on and they didn’t turn to stone, so chances are no one at the grocery store will either. Ok, maybe that’s not the most positive example but you get the idea. We do attempt to keep some semblance of privacy by keeping our master bedroom and bathroom off-limits for any of Adelaide’s guests. A small sanctuary from the beeping machines and general coming and goings. There I know I wont be disturbed… well, until, Jackson throws open the bathroom door while I’m sitting on the toilet. Ah, parenthood - isn’t glamorous?