I had two tickets to a Mavericks/Lakers game in Dallas. Something came up and the friend who was suppose to go couldn’t. It was one of those things where the flight, hotel and game tickets were paid for and I didn’t want them to go to waste. My daughter at the time was in the last stages of her illness – even though most days I was in such denial. I was her caregiver the last two years of her life and we now were getting Hospice care. When we realized Hospice was necessary – Queah (Quaya) and I told the nurse under no uncertain terms the ONLY reason we wanted it was because we believed some extra medical care would not only make her comfortable but give her what she needed to make her better. We heard somewhere that it happened for some people – they got Hospice and eventually didn’t need it anymore – and we just knew it would happen that way for us. The nurse shook her head in agreement and from that day forth we had Hospice.
If you know anything about Hospice, you know they give you a lot stuff – medicine, equipment – we even got our own Chaplin. Chaplin Charles. My daughter took to him right away. Each time he’d visit she’d make him promise to come back. And each time he did. About two weeks out from the game in Dallas, I asked Chaplin Charles if I should take Queah. I had been thinking about it for a while but was not sure because of her illness. As much as I was in denial there were moments of clarity. She was very frail, so sick and not at all the person she once was. She was more like the baby that I nurtured years ago. I would mash up her food and feed it to her hoping that would make it stay on her stomach. I would bathe her – when she felt like getting in the tub – otherwise she’d get a sponge bath. I would change her soiled clothing and bed sheets till finally diapers were more suitable. She had so little energy and would fall down a lot so Hospice gave us a walker. But instead, many times I would stand her up, put my arms around her and she’d put her arms around me facing each other. The sides of our faces would touch or she would lay her head on my shoulder. I would say “Queah we’re dancing” – as I walked backward and she walked forward holding each other. Each time I promised myself I would never forget that feeling. The feeling of how she felt in my arms. I still remember.
So when asked that question, Chaplin Charles response was – “Absolutely”. He told me I would be creating another memory. So I told Queah – “guess what? – we’re going to a Mavericks game”. Deep down inside I hoped the thought of getting out bed, out of town, on a plane to another city would make her try harder – would make her want to live longer. I thought maybe – just maybe – this could somehow motivate her to beat these ugly odds we faced. She was excited about going and would tell anyone who’d listen that she and mommy were going to Dallas to a basketball game. Most days she was very much aware and could hold conversations until she tired out. There was a lady named Laura who’d come each day to look after her while I was at work. The two of them went to the drug store and bought lotions, toothpaste, face creams and a bunch of other little things so that Queah could packed our toiletries in plastic baggies to carry on the plane. Our carry-on toiletries were packed and ready to go long before the trip. That’s just how excited she was.
By the time the weekend arrived for us to leave her condition had worsened. There were times she didn’t quite comprehend things so well and she slept more. At this point she had lost more weight because she couldn’t keep food down. She didn’t want the feeding tube anymore because whatever it put in her stomach it would come right back up. I was afraid to take her out of state – but still determined – so I asked the Hospice nurses what to do in case of an emergency. If she needed a doctor – the hospital – or if the unthinkable happened what was I suppose to do. Hospice alerted their counterpart in Dallas that I may be calling and gave me all the necessary contacts should I needed them. Oh – and they gave me this really cool – somewhat sophisticated – portable oxygen device to take with us because Queah was getting oxygen at home.
On the day we arrived at the airport an attendant helped me wheel her through security and to the gate. We took our own wheelchair instead of bothering with theirs. As I gave another attendant our boarding passes he saw that I had oxygen so he stopped us from boarding. I don’t know, something about not getting prior approval and wanting me to verbally promise to not use the oxygen under any circumstances while in flight. I wanted to tell him he was crazy and if my daughter needed oxygen, she was going to get oxygen. But clearly this was a situation where if I said the wrong thing we were not going to be allowed on the plane. So I said okay. Queah never needed oxygen 24/7 anyway – but had she needed it on that flight she was going to get it. And had anyone tried to stop me - I guess I would have been arrested once we landed. Small price to pay.
Queah mostly slept the entire way from the airport to the cab to the hotel. Then that evening I got her up and ready. We haggled over what to wear. I had to dress her and she didn’t like the outfit. She could barely speak but she knew how to say “no” quite clearly. Finally, we reached an agreement and I wheeled her to the Mavericks game. Our hotel was right across the street from the arena which helped. I kept talking to her to keep her awake and excited as I wheeled her inside. The game was packed. There were tons of people and I needed to find the place where you exchange your tickets for special seating in the wheelchair accessible section. A process that was much easier than I thought. And then, there we were – in our seats. She was smiling. She stayed awake through most of it – the first two quarters. I got her some food. Pizza. That’s what she wanted – she shook her head yes when I asked. She didn’t say much. She didn’t eat much. She just smiled – a lot. And wouldn’t you know it – the cheerleaders came and danced right in front of us for a while. During all of this excitement – Queah and I ended up on the jumbo-tron. Yes – there we were – I said “wave!”. She waved – so did I. By half -time she had about as much excitement as she could take so we went back to the hotel. I couldn’t sleep that night. I was so afraid I was going to lose her. I kept getting up through the night to give her pain meds and all the other pills she had to take. She was always in pain but not this night. She wasn’t talking. She was just sleeping. And I kept watching to make sure she was breathing.
It was not an easy flight home. Well, one easy thing was the person who took our boarding passes saw the portable oxygen. As I was about to explain she politely cut me off in mid-sentence and said – “don’t worry it’s not a problem”. And yes, this time we used it on the flight. I don’t know if she needed it but I was scared . The moment the wheels on the plane touched the ground I called Hospice and pleaded that a nurse meet us at home the minute we arrive. Queah was unable to get out of her seat by herself and could barely stand let alone walk – so I got in front of her and tried to lift her. As small as she was she felt heavy from this position. I said, “Queah you gotta help me”. She softly said “I’m trying”. Those two words – I’m trying – gave me enough energy to lift her. I got her out of the seat – once again as though we were dancing – and placed her in a wheelchair small enough to fit in the isle. The attendants buckled her in tightly. People were watching us as I tried to maintain my daughter’s dignity. I always tried – she expected that from me. My goal now was to get her home – in her bed – where it was peaceful – where she belonged.
When we got home, the nurse and the Hospice doctor were there. They examined her and then the doctor sat me down on the couch in the living room and said, “Well she’s young”. There was something about hearing the words, “she’s young” that for a split second gave me hope. I expected the next words to be …and she’s a fighter and there’s a chance she’ll make it. But the doctor followed up with - normally she’d be gone tonight, but because of her age she’s probably got about a week. And at that point denial came back. Forget what had just happened in Dallas and on the flight – I told that doctor she was wrong and that my daughter was going to make it through this. I believed she could still make it.
By mid-week it seemed I was right. She had a burst of energy.
My daughter died early that Saturday. One week after the basketball game.
I find it’s the longing that hurts worse. Missing her. Wishing she’d come back. I might cry a little less – but I hurt deeper – especially remembering things like care giving at the basketball game. I thank Chaplin Charles for encouraging me to take her to that game. It did create another memory – and right now I’ll take all I can get. As hard as it is to be a caregiver I’m blessed I had the opportunity. It was an honor.