One year ago today, my oldest daughter died in her sleep, in our home. She was 8 1/2 years old. She had fought hard for every breath she took. She was born with severe and complex congenital heart defects, suffered a brain injury resulting in severe cerebral palsy, and faced a myriad of additional issues. Her needs transformed our lives. We made many adjustments to our home, vehicle, and lifestyle to accommodate her needs, and were making long-term plans to care for her as she — and we — grew older.

Her death was both unexpected (in that we had no warning that she was in any sort of distress) and expected (in that given her conditions, we knew she was at increased risk for many life-shortening complications). Now that she has left us, our lives have changed yet again, more than we could ever have dreamed.

Then, and now

  • Then our kitchen and pantry doubled as a pharmacy. Open any drawer or cabinet and you were equally likely to find syringes, silverware, medications, plates, feeding supplies, spices, formula, or cups. I had an arsenal of equipment to manage her illnesses at home, including breathing treatment machines and pulse oximeter (reads the level of oxygen in your blood and provides a pulse). Now, most of that space has been reclaimed by kitchen items, except for half of a shelf which now holds dog treats and grooming supplies. And we’ve donated nearly all of her medicines and supplies.
  • Every spare nook and cranny served as storage for Elli’s equipment, such as her wheelchair, stander, walker, bath chair, and Dynavox communication device. Now we keep our dog’s crate where we used to store the stander. And I miss my nightly routine of plugging Elli’s Dynavox in to the charger and programming it for her day.
  • Hardly a day went by that the mail didn’t include either a letter from the medical insurance company or from the hospital. Now, I admit that I relish the decrease in the volume of paper coming into the house.
  • Then, sleeping all night was a rare and celebrated occurrence. More often, we were awakened by a sleepless little girl who didn’t seem to care that everyone else was sleeping. Elli would make all sorts of racket in her bed for hours on end, which meant that I, who awoke at a single sneeze or moan from a child, couldn’t sleep either. Now, the kids are all great sleepers, so we only get up at night when someone is sick or falls out of bed or has a nightmare.
  • Then, our family calendar was full of doctor’s appointments, therapy sessions, and reminders to have certain blood tests drawn. Now, our calendar is more empty, and we rarely, if ever, see all those people who used to be a regular part of our lives. And I sometimes wonder if they know what happened. But I can’t bring myself to talk to them about it.
  • Then, I knew that we would never get all our kids out of diapers or reach the stage called “the empty nest.” Elli would always need our help for everything and live with us until we couldn’t care for her ourselves anymore. And I was OK with that. Now, Little Boy might actually be ready to potty-train, which means we will actually close the diaper chapter. And the future, well, we’ve learned not to try to predict the future.
  • Parking our van was an ordeal — despite the fact that most places do designate many handicapped parking spaces, very few create those spaces with extra room on either side of the space. I needed a full 8 feet and often had to resort to double-parking way out in the parking lot in order to guarantee that no-one would park too close for me to get Elli back into the van when we were done. Now, I think of Elli when I drive past the handicapped spaces, especially when I see tiny little sedans parked in the rare van-accessible space. Please don’t do that, people!
  • Then, extra-curricular activities were completely out of the realm of possibility. With four kids, one in a wheelchair and one in a stroller, trying to get the other two into soccer or baseball or dance simply could not happen. These days, Big Boy is enjoying karate, Little Girl is trying out ballet and tap, and I am actually getting to the gym on a semi-regular basis.
  • Then, I was so tired that anytime I would sit down for a minute, I would get sleepy. This meant it was nearly impossible to read to the kids — there was something about warm bodies snuggled up against me on the couch that put me right to sleep. I also couldn’t read anything for myself either — I couldn’t read more than a paragraph without drifting off. Now I still get tired, but nothing like before. I am steadily working my way through several books and can stay awake to read to the kids.
  • Then, I completely underestimated the relationship my two girls had. Little Girl had an ally in her big sister. Elli was a girl with whom she could enjoy girlie things. Now, I’m the only other girl in the house (unless you count the dog, but since Xena can’t play princesses, she doesn’t really count!). And Little Girl tells me often how much she misses her sister.

So, the changes since Elli died are bitter-sweet. But being Elli’s family changed who we are and how we see the world permanently. She made us confront our inability to fix everything and begin to accept things — and people — the way they are. She forced me to overcome my fear of hospitals and needles (ironic, don’t you think?). And she showed me that you can find amazing people hidden away inside malfunctioning bodies if you’ll slow down, take plenty of time, and keep trying.