Becoming big brother and sister is often a rocky transition, but when baby is so different than what we've all imagined and prepared for, when baby rocks mom and dad's world in a frightening way, it's really too much for any child to handle gracefully.  You've asked how Aria and Liam are doing.  Thank you.  It shows you care about them!  So far I've declined to answer because my first instinct is to protect their privacy.  And yet, my opposing instinct is to portray our reality with candor to help others who might read these posts.  Time has gone by now and things are starting to feel more... well, I won't say "settled", but they are starting to feel more describable.  I think I've found a way that feels right to share.

First, a little history.  When the neonatologist broke the terrible news to us that day, the "severe global brain damage" news, and we were bombed with the reality that this was not going to go away, Brandon wept for all of us, but especially for Aria and Liam.  You see, when Brandon was eight years old, his family was hit by a semi truck that rendered his big brother disabled.  That loss left a huge and decidedly negative mark on his childhood.  His parents are kind and loving people, but it wasn't enough to cover over that loss.  Brandon wept for he knew how Eleni's birth injury would radically change our lives.  Despite the optimistic things people say, based on his experience, my husband didn't anticipate anything positive to come out of this for Aria or Liam. 

How did they respond?  With shock and sadness, initially.  We showed them it was OK to cry.  At the beginning so much about Eleni was unknown.  We could hope that her damage was not as bad as the MRI indicated or that she would have an amazing recovery.  Aria worried, when Eleni didn't open her eyes, that she would be blind.  And I couldn't reassure her.  Liam didn't bring the subject up, I think because he could see how raw I was about it all.

When Eleni came home they were delighted, and the first few months were pretty good for Aria and Liam.  There was no need to worry them with all the "what if's."  If they asked me about her prognosis, I would answer truthfully about the unknowns while allowing for an optimistic outcome.  Aria was charting Eleni's progress, which wasn't far off a typical child at the beginning, since newborns do so little.  She told me that if Eleni couldn't see she would teach her to knit and crochet and keep busy with her hands.  I know she imagined it could be like Mary and Laura Ingalls.  She talked about how she could help me homeschool her.  I gently mentioned a time or two that Eleni may not be able to learn how to read or do maths.  It was so hard to know what hope to let live at that time.

Everything went south around six months old when it became clear to me that Eleni's deficits are severe and that her recovery may be minimal.  I sank into a depression that I could not and did not attempt to fully hide from my children, who are home with me most of the time because we homeschool.  Meanwhile, Liam was facing a challenging new school year.  He reacted with anger and violence when stressed with his work.  Between Liam's outbursts, my tears and baby's stiffening/panicking fits, our home was truly a miserable place several days a week.  I sort of mired in the mud a bit until Aria broke me out of it with a heartbreaking letter.  We have a notebook we use to communicate about the hard things from time to time. She wrote that our home was no longer a happy place to be, so she wanted to go away to school.  That set me to crying... again, but this time the tears led somewhere.  On the one hand I absolutely understood her desire to escape.  I felt the same way!  But, having it spelled out inspired me to rise up and changed my attitude.  Our home was never going to be a happy place again if I didn't lead the way.

Since then things have changed quite a lot for the better as far as my attitude and the tone in the house. Gone are Liam's outbursts and Aria's desire to escape.  We've met both children's needs in specific, tangible ways.  Liam started playing trumpet in a school band, where he is flourishing.  We enrolled Aria in a long distance learning program, Oak Meadow, which has been challenging her academically in a way I could not this year.  We also created a private work space for her where she can get away for some quiet study time if need be.  She hasn't been using it much, but at least she knows she's been heard and that her needs truly matter.

I think I'm getting used to Eleni's poor prognosis, but I believe it is just coming into focus for Aria and Liam.  Aria doesn't imagine any longer that Eleni will do school or learn to knit or join her in Tae Kwon Do.  She often comes into the nursery to ask, "How is Eleni doing?"  She craves a positive response, which I'm often unable to give.  On the one hand she chooses to offer to hold Eleni.  She chooses to be a good big sister, to help.  On the other hand holding Eleni is often a scary and stressful experience (even for a grown up), so she gets that trapped look in her eyes after holding her for about 5 minutes.  In those moments I know that Aria comprehends the tragedy that's been dealt our beautiful baby.  The other day it was just the two of us, Aria asking probing questions as she often will.  And I felt it the right moment to tell her that Eleni may not learn to talk.  Little doses of pain.  Little doses of loss.  She is a strong, smart girl with a good heart.  I hope it is not too much for her.

And Liam, he is just starting to grieve.  For most of Eleni's life he has been the one who could enjoy her most.  In his innocence he didn't see her injury so much as the rest of us.  He was able to hold her and smile and coo.  He still does.  But, he's also learned why we are grieving.  He sees it in our friend's baby who can play with toys and crawl and smile.  He doesn't share his grief with me, to protect me, but he shares it with his friends at times.  He loves our baby so very, very much.  I don't want him to know.  I so wish I could protect him from the truth.

Both of the kids starting seeing a children's counselor last week.  It felt like time to encourage them to talk to someone.  I told them they don't have to worry about making Miss Danielle sad.  They can complain to her about how much they miss out already because of Eleni - the cancelled play dates, the distracted mom, the loss of privacy due to in-home nurses and therapists, the homeschool co-op we can no longer join.  I hope they're also able to share their worries and to work towards some kind of wholeness.  Danielle said, at the end of our intake interview, that one of her goals was for the children to be able to look back at this part of their childhood and have positive associations with this time.

For it to be positive for them.  Wow.

I told her if she figures that out to be please let me know, and to be sure to tell my therapist!

*******

My friend photographed Aria, Liam and Eleni this December before baby's surgery.  I wanted to be sure to capture a nice image of all three of them together, because the future is anything but certain.  I love this photograph because it captures each child's true expression.  You can see the bond that is here despite everything.

And thank you, again, for the love you extend to us.  Please do keep Aria and Liam in your prayers.

xo,

Rachel Hauser