The house is coming together. Only a few scattered boxes are waiting to be unpacked and we’ve even started hanging pictures on the walls. There are traces of Adelaide everywhere in the house: a photo here, a ladybug there. But, in addition to her physical being, there are a few other Adelaide trademarks noticeably missing. Most obvious is her equipment. It was sort of hard to miss when anyone would walk into our Chicago home. Her stander or gate trainer was tucked - not so conspicuously - in the corner of the living room, her feeding chair at our dining table, her bathing chair a permanent fixture in the bathtub, and of course the IV pole for her tube feeds, oxygen concentrator, pulse ox and suction machine clustered around wherever Adelaide was currently lounging. Out of all of that the only piece to come with us was the IV pole. The rest was returned to the medical equipment companies or donated to families that needed them.

Returning/donating and just generally going through Adelaide’s belongings shockingly began the night she died with the hospice nurse going through her meds and taking the more potent drugs out of the house per law. Then in the days to come the medical equipment companies wanted their stuff back. I also rode a small wave of relief the week after she died and leaned on my mom to help me sort through Adelaide’s belongings. 

That’s actually something I haven’t spoken a ton about because at the time I was a bit embarrassed. Clearly, I was devastated at losing Adelaide but there was also this sense of relief that she wasn’t struggling anymore, that I no longer had to worry about how much pain she was in and how to help her. Those early days are a bit of a blur but with my mom still in town we managed to do an initial purge - setting aside items I wanted to hold on to in giant plastic tubs and donating much of the rest. When it came time to put our condo on the market there was another purge and a third when we packed up to move. As the realization has settled over me that all I have physically left of her is these things, it’s become increasingly difficult to part with them. Though, I did manage to finally toss the ladybug washcloth we had used most frequently when bathing her. Somehow I’ll manage without it.

I think for many parents grieving a child it would be the clothes and toys that would be the most difficult to part with but they were remarkably easy for me to let go of initially. Ever since she was a year old, I had glared at her toys with resentment. It was around then that they had ceased to be technically “age appropriate” and were a difficult reminder of the child she wasn’t. It was actually parting with the meds and equipment that tore me up. I hated the meds for their side effects and I hated that we had to have all the equipment but they had helped me keep her alive and in caring for her we had connected on a level deeper than words. 

They were also symbolic of a life that had become our normal but was far from typical. As much as they reminded me of Adelaide they reminded me also of our journey together and how proud I was of our family for going through everything we had.

The cabinet dedicated to her medicines and medical accessories was one of the last I packed. I knew there was no reason to hold on to most of it. That in our new house there wouldn’t be a cabinet designated for her many meds, no med schedule secured to the fridge, no syringes laying out to dry on the counter. Our life here looks so different - our normal is more typical.

I still can’t quite wrap my head around how that was our life for years and then literally overnight it all changed. It’s like going to sleep left-handed and waking up right-handed. Everything you knew, everything that was comfortable is all of a sudden altered. 

Physically settling into this new house has allowed me to begin emotionally settling into this new life. The boxes will have long been broken down before this new normal feels comfortable but progress is being made. Her IV pole stands in the corner of her room/my office with tokens of our prior life dangling from it and I might have stuck a syringe in a cup of pens on my desk for good measure. You can take the mom out of the special needs life, but you can’t take the special needs life out of the mom