I remember Barry telling Alyssa "I don't know what I would do if anything ever happened to you; you're like the daughter we never had. I don't think you know just how beautiful you are inside and out, and what a great person you are." Then I jumped in and basically repeated most of what he said, yet added that it's so hard to believe with her great personality and smile and beauty that she was not more confident about her friendships. Little did she know, she had friends in every group. I told her to wait until high school, since that is when I met Sheila, and look how close we've been all of these years. She always wanted to be like me and have great long-time friends.
To me, this day was a gift, because many times on the weekend she was off shopping with her friends, at parties, or just hanging out and not doing mom things. As much as she said she wanted to go out that night, I know she really enjoyed the day as well.
That evening, she got a phone call to go shopping and got ready, but then began screaming and crying that she had the worst headache. I've never heard her sound like this in my entire life. Steve ran up to be with her, and then Barry, and Sheila and I followed and called 911. We knew something was drastically wrong, as did she. I heard she had major fear in her eyes as she was so unsure what was happening. She could not feel her arms and legs, and her vision kept coming and going. She kept crying that she didn't want to leave the house, but we reassured her that we loved her and we'd be with her at Condell and we had to find out what was happening. We continued to talk with her and reassure her until she went for a CT scan. Afterward, she was to be transferred urgently to Lutheran General Hospital as they are a Trauma 1 and better equipped for this neurological disaster. Soon before we left Condell, Tyler and Lindsay arrived from school.
We left to drive to Lutheran General and she was to be airlifted. She did not arrive until more than two hours later. I have never felt time pass so slowly. No one could tell us where she was or why the delay. We finally got word that she was minutes away. They rushed her in to put a shunt to drain the blood out of her head but unfortunately it would not drain properly. She then went for another CT. The doctor showed us the new scans compared to the first ones from Condell and there was a dramatic change. In one scan she had flow to the brain in blood but the second scan showed major bleeding with a clot at the base of the brain that blocked the blood supply for oxygen to reach the brain. The doctor told us it was called a "sick brain" because she was most likely completely brain dead at this point. After a series of brain activity tests, she was pronounced dead at 9:00 a.m. on Feb. 27, but they kept her on life support as we chose to consider organ donation.
As of now, we still await autopsy results to learn what caused this to even happen to our healthy 14-year-old. The neurosurgeon seems to think she may have had an arteriovenous malformation (AVM) or an aneurysm most of her life that just suddenly burst. She was also very recently diagnosed with having the VHL gene but luckily we had not yet told her. I don't know what is taking so long to complete the autopsy.
The nurses, physicians, social workers, and chaplains were all incredibly supportive at Lutheran General. I sill have a lot of unanswered questions about what happened at Condell for the hours she was there.
All of our family and friends were also wonderful. Robin, Jeff and their families; Sheila and Barry (and family who flew in later); Lindsay and Jo; Steve's brother Mark and family, Suzanne and Mindy, and others - we all sat at her bedside for days while they planned her organ donations. Due to the fact that Alyssa was otherwise healthy, we decided it was best to give forward the gift of life and sight. After being an organ recipient myself, I can only tell you what an incredible gift it is. The process took until 5pm Wednesday to find and schedule recipients and then harvest her organs in surgery.
So now her corneas are in the eye bank; her liver went to a local 4-year-old child; a local 30-year-old received her intestine; a 60-year-old from NY received her lungs; and her heart went to a woman in her early 50's who, by the way, was a perfect match to Alyssa and lives in Pittsburgh. All the transplanting was done by Wednesday evening and everyone is most likely home and recovering. If they're so willing, we would be honored to meet the people who received her organs and see that Alyssa is still here with us in part.
As most of you are probably already aware, we had a wake and service on March 4th and an open house the following day so kids could come with their families, be in Alyssa's room, see all her things, and say their last good-byes. From most of the people I spoke with, they said this was probably the largest wake they had ever seen. The mass at the end of the wake was standing room only and there were speakers so those in outer rooms could hear what was said. The pastor and youth minister were wonderful in explaining to the kids and families why bad things happen and where you go when you die. Alyssa's cousin and close friend Emma from Colorado and two of Alyssa's dearest friends all spoke, followed by my sister reading Tyler's eulogy, and then Alyssa's Godmother Debbie reading mine. It was a very emotional day - there are no words to describe it. I'm still in shock as the day was so wonderful and the rest seemed like a bad nightmare and felt so surreal. My hardest part is I will never get to see her again or any pictures and videos. All I have are my dreams and memories.
I'm hoping this will be the worst blog I ever write in my life and I look forward to updating you shortly, telling you how easy my surgery was, that my tumor is benign, and I'm looking forward to eye surgery to hopefully see a little something again. In the meantime, we are enjoying the many little signs that remind us that Alyssa is still with us.
I would like to thank everyone who was here to surround us during this difficult time. In addition, I would like to especially thank Oak Grove School teachers, students, and their friends and families. The outpouring has been so overwhelming and so appreciated. Not a day goes by where I don't receive about 100 texts and 20 phone calls trying to make sure we are all okay, and what, if anything, we need. Finally I'd like to thank The Chapel's pastor and youth minister for making this an easier time for all of us and Alyssa's friends. One of the most remarkable things I've heard is that all the children are now talking about becoming organ donors, and many have joined the morning youth group, and many believe that Alyssa is in a much better place and is probably enjoying a baked potato bar as we speak (ha ha).
Finally, not a minute, hour, or day goes by without Steve, Tyler, and myself feeling surrounded by Alyssa's presence. We've all had difficulty sleeping, and keep awakening with nightmares of that dreadful week. I don't know when, if ever, you can get over losing a daughter or sibling. Please keep Alyssa alive in your memories so that she will live on forever.
No comments:
Post a Comment