“A wife who loses a husband is called a widow. A husband who loses a wife is called a widower. A child who loses his parents is called an orphan. There is no word for a parent who loses a child. That’s how awful the loss is.” -Ronald Reagan
There are many events I imagined planning for Lea when I gave birth to her almost seven years ago. Her funeral was not on that list.
May 25, 2011
This is the part of the story when I tell you Lea didn’t make it. She wasn’t the one to beat the impossible beast. This is that horrific post where I tell you we watched our six year old daughter die in our arms. We heard her last breaths. We watched her lifeless body get zipped up in a body bag… an image that will be forever seared into my memory and one that will give me nightmares I imagine, for the rest of my life.
Harsh? Yes. The past nine months have been nothing short of harsh. Childhood cancer is harsh. DIPG? Even harsher.
Lea didn’t even make it nine months. She died two days before Mothers Day, and 15 days before her seventh birthday.
I have decided not to sugar coat any part of this journey in order to spread awareness and perhaps, help another family facing this mighty beast called DIPG.
We knew this day was imminent. I prayed every day and every night for a miracle… and then, asked God if He was not going to give her a miracle, may He show her, and us mercy. And He was. Our mighty God was merciful.
I was so fearful about the end, petrified of what we were going to face, and if she was going to be suffering in her last days. But she didn’t.
At the advice of our amazing team at Yale, Mike and I decided not to intervene. We were going to let DIPG run its course, even if it meant less time with our amazing girl, because it would mean less pain and suffering for her. I remember our doctor telling us that the only saving grace of DIPG is that if you don’t intervene, the end is usually peaceful. We had their word that they would do everything in their power to make sure Lea was not in pain and we felt supported. I am so glad we trusted their advice and listened.
Her last good day was Wednesday. It was a beautiful day filled with sunshine and a warm breeze. Armed with Oreo cookies and some friends, I pushed Lea around the neighborhood as she laughed and sang and snapped her “more powerful” hand. We had her favorite pizza. We ate a “Lea owl” ice cream cake. We watched her favorite show. She saw her favorite people.
Wednesday morning Lea was in a lot of discomfort so we gave her pain meds and called in the hospice team. She struggled for a few hours to get comfortable, and finally, at 11:30am asked to be put on her belly, a position she never sleeps in, but quickly fell asleep in. I stayed close by as she rested, writing a blog that will never get published, because her life ended less than 12 hours later.
After her breathing became very noisy and I noticed she hadn’t moved at all in several hours I went over and picked her up, attempting to wake her… but she wasn’t there anymore. At some point during her nap, she must have slipped into what appeared to be a coma. Her breathing was labored, she was unresponsive, her body limp and lifeless, but she didn’t seem to be in any discomfort or pain. She was not speaking or moving, only breathing.
We gave her medicine to calm her breathing and took her upstairs to our bed at 9pm, positioning her body on her side as our doctor advised us to.
I snuggled up next to her like we did every night that she slept with us, hand in hand, head to head. I told her I loved her so much. I told her how glad I am that God chose me to be her mom. I told her she was special, and safe, and loved. I told her she could go… and then thanks to Ativan, I drifted off to sleep. At 10:55pm I woke up to Lea’s jagged breaths and Mike praying over her. She took four, horrifying, jagged breaths… and then she was gone. Peaceful. Free from pain and suffering. Free from her earthly body that had failed her.
I saw her in my mind skipping the way she used to down the streets of heaven, which Lea hoped were lined with candy.
We sobbed over her. We hugged her. We told her we know she isn’t in there anymore but we love her. We shook our head in disbelief and cried out no, no no… We stroked her sweet face. We held her sweet, small, perfect hands. We smelled her and kissed her all over, knowing this would be the last time we would ever do this. We laid in bed with her for what was the quickest two hours of my life.
And then they took her away.
For almost seven years Lea has been with me… and then… she wasn’t. It the strangest, most awful, most nauseating, gut wrenching feeling in the world knowing you can never see or kiss or hug or speak to your child again in this lifetime.
The next morning I felt numb, but also at peace for the first time in nine months. There was a sense of relief in Lea’s death. We no longer have to watch our once healthy child lose function day after day, or endure constant tests and medical interventions, or wonder if she will suffer a painful death, or wonder how it will end. It is over. We are so tired. And so glad that Lea is no longer in pain, forced to watch as her body fails her day after day.
I have been blessed with a very special group of friends, who are amazing distractions, margarita makers and force-feeders. Unable to change out of the clothes from the night before, we drank margaritas, cried, laughed, and shared our favorite Lea stories. We set up flowers and pictures of Lea inside my family room for everyone to remember the gorgeous, bright, sparkling girl that she was.
We are experiencing a sense of pain and loss that is indescribable. Worse than I imagined. But I truly believe everything in my life thus far has led me to this place. God knew I would need this community for this tragedy. He knew I would need an amazing family and an army of friends who are literally holding me up and standing by as we go through life’s very worst.
Walking with a friend in the dark is better than walking alone in the light. -Helen Keller
Lea taught a lot of people a lot of lessons, including us. She has been a blessing in our lives as well as touched the lives of thousands through her sickness, and now, her death.
Because of the reach Lea has had, the thousands affected by Lea’s journey, and in order to do what is best for us during this impossible time, we have decided to make the wake tomorrow night private. Close friends and family are welcome at the wake, and Lea’s amazing community is welcome at the mass on Wednesday. We welcome you to wear your Lea Owl tee, or Lea’s favorite colors, green and blue as we celebrate the life of one amazing girl.
More information can be found here.
Thank you for your continued prayers and support during this impossible time.
This story isn’t finished yet.
You do not get to choose the events that come your way, nor the sorrows that interrupt your life. They will likely be a surprise to you, catching you off guard and unprepared. You may hold your head in your hands and lament your weak condition and wonder what you ought to do. To suffer, that is common to all. To suffer and still keep your composure, your faith and your smile, that is remarkable. Pain will change you more profoundly than success or good fortune. Suffering shapes your perception of life, your values and priorities, and your goals and dreams. Your pain is changing you. -David Crosby