Four and a Half Precious Days

It was the equivalent of a long weekend.  Have you taken an extended weekend vacation lately?  Maybe headed to Vermont to enjoy a few days of the Fall foliage. That is about the extent of my beautiful daughter’s life.  Abigail Grace was born before the sun came up Friday morning and passed away on Tuesday afternoon.  I feel like I blinked and it was over.  Did I even wakeup on Friday morning, was it just a dream?

We knew the cards were stacked against her from the beginning; when we received her diagnosis it was made very clear to us that her condition could mean a very short life, and certainly a challenging one.  Matt took two weeks off of work so we could alternate nights in the NICU after I was discharged.  I made arrangements to work from home with the expectation of multiple early intervention therapies happening each week in our home once Abby made it out of the hospital.  None of that ever happened.  On my day of discharge it all just ended.

It was early, and I went down to Abby’s room to be there for rounds.  When the team finally made it over to 2445 we joined them in the hallway to find that there were no major changes, but that the MRI revealed Abby actually had the Middle Interhemispheric Variant rather than Semi-Lobar as we thought.  Just after hearing that, Abby’s nurses told me it was “almost time”.  I immediately took off my sweater and Abby rested her face against my chest.  I laid there holding her, kissing her head and inhaling her as deeply as possible; feeling like each breath would be her last.  Matt sat right with us, rubbing her back and holding my hand, and then he took his turn holding her for the last time.

Connor left school early to say good bye.  He really just wanted to color, but he gave her a kiss first.  We didn’t push him, as he was nervous.  We decided to give Abby a bath and dressed her in the pink two piece outfit Con had specifically chosen for her to wear home.  It was as I was dressing her that I realized she was no longer with us.  I picked her up and held her to my chest and cried.  It was like I was holding a baby doll, and couldn’t let go.  I don’t remember all of the conversation around me, but I was holding her with tear-filled eyes not paying attention to anything.  Eventually I had to put her down, which felt like the most unnatural thing in the world to do.   

We could have kept Abby around for a few more days on a ventilator, but that wouldn’t have done her any good.  Our objective for her short life was for her to be comfortable and to know love.  We did our absolute best to make that happen for her.  She was meant to get her wings and join the other HPE angel babies. 

I can’t even begin to describe how heartbroken we are.  After we explained to Connor, who has a reasonable 4 year old understanding of death and Heaven, that Abby’s body just didn’t work like his does, he replied “But we have a crib for her.  She can just sleep there”.  Oh Lord, I want her to.  I wish I could have just taken her home and tucked her into her beautiful girly crib to watch her sleep eternally. Instead, this morning Matt and I picked out a tiny casket that she will be laid to rest in after her mass at St. Teresa’s on Saturday morning.  ***We did not print an obituary in the paper, however anyone who wishes to honor Abby with us is most welcome to attend.  The service is at St. Teresa's Church on Newport Avenue in Pawtucket at 10AM, this Saturday, November 20th.

Thank you, thank you a million times for all of the love and support you have offered us.  Our family and friends, our new friends from the HPE community; I can’t even begin to express our gratitude for the support we’ve received.