Missing Chloe

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A month before Chloe got sick

Chloe on the swing a few days before she became ill

A couple weeks into our PICU stay (out of coma)

This day will always feel raw.  It makes us come undone.  We wake feeling beaten. It is hard to take a breath.  I am always hit with the same questions - what if I had gone to the doctor one more time, what if we had gone to the ER sooner, what if I didn't stop to buy that pumpkin or take the long way home, what if it didn't turn out the way it did, what if this never happened?? And, the forever question of WHY??? So many questions, so much guilt, so many emotions before even turning over in bed to start the day.  With trauma, you push through it and cope and find ways to move forward - it never goes away... you live it, you wear it, you fight it, you learn from it.  Some days (weeks, months) are seamless but sometimes a moment takes your breath and it knocks you down. 

We miss Chloe being at home everyday.  It's harder on days when we have family moments and she is not there.  I fight that feeling that creeps into my heart - that I wish she were there with me, laughing and holding my hand.  I try to live in the moment and enjoy but sometimes her absence is very much felt.  I notice when Olivia and Jackson bicker (as siblings often do) that they miss the middle child as a buffer.  I often wonder how their dynamic would change if all three were together.  It feels empty when we wake to special days (like birthdays or holidays) and she is not immediately there.  She misses moments and we miss her.  It really is still raw some days. 

Still, she continues to amaze us and bring us joy when we are around her.  She giggles a lot more these days.  It's a little mischievous but we kinda enjoy it because you can tell she is being playful.  We visited her late one day, over the summer.  She was tired and ready for bed but we wanted to spend some time with her.  She was not having it and showed no interest.  We tried to take her for a walk, bring out her toys, talk to her - nothing worked.  As we started to say good bye, she began this playful game of 'if you kiss me, I will laugh' and so began our 20 minute good night kiss that we all truly enjoyed.  She is smart and gets us to linger when she does not want us to go.  And, she loves peek a boo and seeing faces up close.  It is clear that she recognizes familiar faces.  Chloe has never been one for toys; she has always been a people person and loves to look at faces.  She lights up when grandparents come and becomes light and playful.  With Olivia, she is at ease and lets her play with her hair.  The two girls cuddle or stare at each other and get lost.  Jackson is still trying to make sense of what she likes but has learned to proudly take her for walks on his own around her floor unit.  Brain injuries are so difficult and her seizures (though they are better) do not make this easier.  There were times that we thought she would never smile.  There were times that we would question if she were really seeing us and understanding that we were mommy and daddy.  Chloe's smile, as a baby, was EVERYTHING!!  She lit up the world with her smile and laugh. It is still difficult to look at her old pictures.  So now, when she giggles and shows her gummy smile, it eases my heart a bit and I can breathe a little easier knowing that she recognizes those who love her.   

It's been a long road!

Chloe continues to grow and is still doing well going to school off hospital grounds.  We want to take a minute to thank all of those who helped to support our fundraising for Chloe's new wheelchair.  It is amazing to see the difference.  She sits up high and strong in this new chair.  It is clear how much support it offers to her trunk and neck control.  As we went through initial fittings for the chair, I remember Chloe smiling and sitting straight.  It seemed to help her feel more confident and we were so happy to know that this would provide her with so much more stability and support.  We could not provide her this without your help and we are so thankful.

MUCH LOVE (with a big gummy smile)