A Sad Farewell

When we first got Stellan’s diagnosis, the neurologist told us NOT to turn to the internet for information. And of course I understand why. The surest way to get incredibly freaked out or depressed over anything medical is to Google it.

So for some time, Quentin and I obeyed the rule. I purposely didn’t search for anything about Pachygyria, Lissencephaly, or anything along those lines. We were so early in the process, with so much uncertainty ahead of us, it didn’t seem to make sense to read something that may or may not have been completely irrelevant to Stellan’s case, and ours.

But after a while, we wanted at the very least to find out if there were other kids out there like ours, other parents like us. How were their kids doing? And how were those parents coping?

I still limit my internet research because I don’t want to end up down a rabbit hole of horror, sadness, or fear. But I did one day come across a remarkable family whose son Elijah was born six months before Stellan, and who had also been diagnosed with Pachygyria. They seemed to have gone through all of the same ordeals, only six months ahead of us. The tests, the doctor’s appointments, the therapists… I started reading their blog, then reached out to them via Twitter, and eventually became Facebook friends with them. It has been incredible to know and be able to offer support, even just through the internet, to another family going through the same difficulties. For Christmas I sent Elijah a Brooklyn Nets onesie, the 18-month size so he could grow into it. His dad posted an adorable picture of Elijah with it on Twitter.

Unfortunately around that same time, sweet Elijah’s health took a turn for the worse. His incredible parents did everything they could to care for him and comfort him.

Elijah lost his battle yesterday evening at 5:05pm. And though I never got to meet him, I cried as if I had. I’m crying now as I write this. I cry for his big sister Adrienne who, at three, has already been through so much as her brother battled. I cry for his parents, and I cry for Elijah. And I guess I’m crying because I still like to believe that everything will turn out alright in life, and clearly it does not.

Becky, Chris, Adrienne and Elijah, my heart is broken for you. I’m struggling to put my feelings into words. You are an amazing family and I wish you comfort and peace, now and always. Elijah will always shine bright.



And what we can still do forever is celebrate love for the siblings, parents, families, friends, and memories of superstar kids. Tears and smiles do the same honor, strangely. :) <3


So sorry to hear about Elijah. Stay strong, Noelle, Quentin & Stellan. WE LOVE YOU!!!


So now I am practically crying too. Noelle, as always my heart goes out to you, Quentin and Stellan, and all the other little boys and girls out there. I love you. There are no more words to describe it. Iris


My heart too breaks for their family. Praying that our little angels welcome their ‘superhero’ to heaven with slobbery baby kisses and love. Tears.


My thoughts and prayers go out to all of you. Everyone’s battles bravely fought, tears painfully shed. I’m so sorry Noelle- stay strong. My thoughts are with you.


Thank you Jenny! xo

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