Friday, December 1, 2017

Facing Facts

I am sitting in my newly renovated master bedroom, listening to the musical sounds coming from a swinging baby cradle swing holding a 67-hour old baby boy, and diagonal from another newly renovated space whose occupant is currently sleeping downtown.  It is probably not a fair week to judge me on my emotions, but my heart is bursting at the seams and simultaneously broken into pieces.  Most of these emotions I expected, but then there are the others, the sneaky ones, the ones that I wasn't aware even existed.

We introduced Sonzee's baby brother to all his siblings when he was about 14 hours old.  He was sleeping and content and doing exactly what a typical newborn baby should be doing.  He wasn't hooked up to any oxygen or receiving any antibiotics, and he didn't provide me with that lingering feeling of "something just is not right".  Our oldest two children were beyond excited to run over to the bassinet and see him inside, while our third child was a bit nervous and reserved.  Then there was Sonzee, sitting in her wheelchair, kicking her feet, moving her body, and I wondered, "Does she know what's going on?".  I quickly moved on from that thought, because honestly what almost three-year-old really understands the gravity of what having a new sibling means?!

Each sibling took turns saying, "hi baby", patting him, and holding him, and before it got too crazy I wanted a picture of my 5 babies, so I gave our oldest our youngest and I snapped about 40 pictures.  My heart exploding the entire time as I sat with them all, and then it was time for everyone to go home and get ready for bed.  After they left I took out my phone and reviewed the pictures of the meet and greet.  They are some of my most favorite pictures on a whole, but then it hit me like running into a brick wall.  4 out of 5 of our kids were sitting on the bed, while Sonzee was in her wheelchair.  In that moment it was a colossal explosion in my brain.  

I could have 10 more children, but none of them are going to make her typical.  Did I subconsciously think that a healthy child would erase the last 2 years and 9 months of pain I have experienced by watching her endure all she has?  Did I think that a new baby would suddenly cure her of her CDKL5 mutation and she would get up and jump on the bed with her siblings?  Did I think the memories of her NICU stay and the initial unknown worry, panic, fear, and confusion surrounding her first hours of life would be replaced by a new experience?  What exactly did I think would happen when this little man was born (g-d willingly) healthy?  


When Sonzee was the youngest her experiences were removed from those of her siblings.  There are years between when she should have completed certain skills and the moments her older siblings mastered them.  When I see other children Sonzee's age it doesn't bring me pain, and I have 3 other typical children I can quickly swap out the experience with, so I am no longer focused on "what if that were Sonzee?".  I don't think I fully realized that by having these amazingly positive experiences as we move forward, I will now have to really deal with the pain and the heartache of what we never had and won't have with our Sonzee.



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