" Our amazing, darling girl is going to die. And there is nothing that we can do to stop that." Photo / Facebook
There are two ways to read the Facebook page created in Claire Aldrich's name. You can start with the last post and scroll down, or you can start with the first post and scroll up.
No matter how you unfurl the infant's story, it ends the same way - too soon.
The first post on Dec. 17 shows her in a red dress with a matching bow on top of her head. She is smiling and sticking out her tongue playfully.
Less than a month later, in one of the last posts, a photo shows an orange glow cast across her face. Her eyes are closed.
"I took this photo of Claire last night as the sun went down," it reads. "It was the last sunset she would see, but she basked in the setting light as it faded to dark. You fought so hard, sweet one. We are so, so very proud of you."
The Facebook page is titled "Claires Journey," and her mother started it after she and her husband, Jeff, learned that what they thought were febrile seizures from RSV, a common respiratory virus with symptoms that resemble a cold, were actually an indication that their 8-month-old daughter was much more Ill.
"It was her body reacting to the fact that her brain is, essentially, shrinking," her mother, Sally Aldrich, explained in a post on that page. The doctors, she wrote, told the couple that the frontal lobe of their daughter's brain had significantly deteriorated and she had minimal white matter. Doctors then informed them that she had a degenerative brain disease causing a rapid deterioration that would continue until she passed away.
"There is no treatment, there is no cure," Aldrich wrote in that post. "It was no one's fault. It was not something that we did, or did not do. It could be genetic, or it could be bad luck. . . . Our amazing, darling girl is going to die. And there is nothing that we can do to stop that. I am her mother, and I want to run away with her. I want to pretend that the doctors are wrong, that she is fine. But they aren't, and she isn't. I do not have the words to express how my husband and I feel. All I can say is that we are broken. We are deeply and utterly broken."
https://www.facebook.com/722040369/posts/10162937432275370?sfns=mo
Posted by Claires Journey on Tuesday, 14 January 2020
There is no set way to grieve, and if the family had chosen to shut their windows and close themselves off from the world, no one would have blamed them.
But they didn't. They shared Claire's last days with people who knew her and people who would never get that chance. They made the Facebook page public, and by doing so, they allowed others to witness what it looks like to go from believing your child has a cold to accepting she might have a disability to knowing you will soon lose her.
Parents from North Carolina, where the family used to live, to northern Virginia, where they now live, found themselves clicking on that page and checking for updates. They shared links to it on social media and donated to a GoFundMe page created to help cover Claire's care, and her eventual funeral. They spoke of broken hearts and prayers for a miracle.
I took this photo of Claire last night as the sun went down. It was the last sunset she would see, but she basked in...
Posted by Claires Journey on Tuesday, 7 January 2020
"Sally, please know there are hundreds if not thousands of women thinking of and praying for Claire, you, and your family every day," one northern Virginia mom wrote on an online forum. "Every one of us would work to change what's happening to Claire if we could. Know that when you feel alone there are women you've never met rallying in thought and spirit for you!"
"Please let us know how we can help," wrote another Northern Virginia mom. "We are your tribe."
"I can't stop thinking about Claire," wrote another.
I reached out to Aldrich to ask whether I could share Claire's story with you. She gave me permission and said: "Maybe, just maybe, parents around the country will hold their children just a little bit tighter, which is a beautiful tribute to Claire."
She recalled how easy it was to make her daughter smile. A laugh from her 2-year-old brother, Archie, or a lick from a dog could make her grin. And sometimes it took nothing at all.
Our beautiful Claire passed this morning. I don’t have the words at the moment. But we are broken.
Posted by Claires Journey on Tuesday, 7 January 2020
"I have never seen a baby smile as beautifully and as simply as Claire did," she said. "I would often find myself gazing into Claire's crib, just watching her, as she smiled into space. I hope that meant she was happy. I hope that meant she knew she was loved and felt safe."
She had noticed that Claire wasn't hitting the same milestones as other babies her age, she said, but thought it might have been because she was born a month premature. Or maybe, she thought, it was because she had experienced some early episodes of apnea.
The family doesn't know whether Claire's brain started to degrade weeks or months ago. An MRI taken when she was 6 weeks old showed a normal brain. The family has been told she had a form of leukodystrophy, but many uncertainties remain. What is clear is that her condition quickly deteriorated. On Dec. 9, Claire was admitted to the hospital for RSV. When she came home on Christmas Eve, she had a feeding tube because she was expected to lose the ability to swallow. And she was most likely blind.
On Saturday, the family plans to hold a memorial service for Claire in North Carolina.
They had been told she would probably live for six to 12 months. The Facebook page shows she survived only a few weeks after coming home.
A Jan. 8 post reads: "Oh how I wish I could tell you that Claire passed quickly, and quietly. But she absolutely fought her hardest to stay on this earth with us. . . . We told her how beautiful she was. How strong she was. That we loved her. She eventually passed in my arms. With her daddy by her side. It is not something I will ever forget. There will be days I will want to forget that final moment, but for the most part I treasure that I was lucky enough to see her to the very end."
If you read from that post down to the first one, you will see confessions of anger and professions of love. You will see a description of a feeding pump sitting in a space that should hold toys and a photo of Claire wearing matching pajamas with her brother for her first and last Christmas.
You will see how even before she was gone, her parents were mourning a loss that had come too soon.
On the same day they received her diagnosis, a post appeared on the page addressed to "Claire, my beloved daughter."
"When we found out you were coming into our lives, I thought, 'So soon?' " it reads. "When you arrived in our arms a month early, I thought, 'So soon?' When your first birthday became visible on the horizon, I thought 'So soon?' And then today happened. Why so soon?"
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