Throughout my daughter’s 2 year life, my Mother was the only one who asked me out loud, “Have you ever thought about what you would do if Alyssa dies?”
Are you kidding me?.... I think (thought) about it every day! But I couldn’t really go there. What parent could go there? The idea of living without her for even a day was more than I thought my heart could handle. (Who knew that 12 years after Alyssa’s death, I would still be standing to talk about it)!
There was never a time when a doctor told me Alyssa was going to die. But with every health complication, the medical staff was very honest with me about not knowing what will be in the future. Each problem individually was fixable, but put together no one knew for sure.
More than a few times I asked what the long term outlook might be: surgeries, transplants, therapy, medication, special schools, IEP’s, shadow teachers, maybe a wheelchair…the list goes on and on. Every doctor told me they just weren’t sure. Once her heart was fixed they could do such and such…once her bowel was repaired then they would know such in such.
I knew Alyssa was “off” around December (1996). Her skin was getting darker. She was getting puffier. She was more agitated. I asked the doctors about the changes, but on paper they all said her numbers were normal for her. I felt very uneasy that New Years. I told my husband on New Year’s Eve that I felt like the other shoe was going to drop. I felt really sad and didn’t know why.
In March, the month she died, I got an itch to go to Disneyland right away! Looking back, I think my soul knew it was getting closer. “I” didn’t know.
I was so glad I listened to that itch. What a day we had! One we will never forget!
The day she died, looking back, my soul did know she was leaving. My heart didn’t know. “I” still didn’t know. How could I? How do you ever really believe it is going to happen until it does? Alyssa went in for surgery to remove a blood clot from her brain. I told the doctors that day I didn’t know if she was strong enough for surgery. They told me it had to be done or other complications would arise. I asked them how many people had died in this surgery. I was told none. (some people had complications after surgery, but this was considered a pretty routine procedure)…for brain surgery anyway!
Alyssa died in surgery. Her heart stopped and she couldn’t be revived. I was in the waiting room in a deep sleep when she died. My husband had to shake me awake when the doctors came to tell us the most horrific news I will ever hear. Actually they never told us. I had to ask. But I understand how hard that must have been for the doctors. ( Our worst nightmare…and theirs). They were explaining what had happened in surgery, but they couldn’t bring themselves to say she died. I asked.
Looking back, would I have wanted someone to tell me she was dying? I don’t think I would have been ready to hear that. But really…is a parent ever ready? Our situation was different. Alyssa didn’t have a terminal diagnosis. All but a half a handful of medical professionals were very careful and appropriate with how they dealt with our family. The ones that were honest and compassionate did the best with me. I don’t think anyone tried to tell me the inevitable. If they did then I totally missed it!
I think the one thing I would pass on is this: this is our child! Remember that even though the medical staff deals with death all the time, this is the first and only time (we hope) for us. It is new and awful and scary and so painful. Please be compassionate and empathetic. Try for a minute to imagine what we are going through. We really appreciate your human-ness!