I am a very lucky man – I’ve got an amazing wife and am the father to three wonderful kids. Lylli was born on Halloween in 2008, Gracie was born November 2010 and although she only lived for 17 months, she will remain as much a part of this family as the rest of us, and Mickey Gray, our first son, was born in June of 2012. I’m not going to say that life has gone exactly as I would have wanted, but it is a good life and I am determined to make the best of it.

This blog is an attempt to document my quest to become a dad that my family can be proud of.

Tuesday, April 30, 2019

7 years

Today and tomorrow each year are always tough days – it is hard to believe that early tomorrow morning will mark the 7th anniversary of the day we lost our Gracie.  I always feel sad on these days and in an odd way, giving myself permission and purposefully being sad, reminds me of how important she still is to me.  As a parent that loses a child, you get-by by forcing yourself to become numb and you spend a lot of extra energy forever wondering if you should stop yourself from being happy when things are going well because part of you just wants to be sad forever – Its strange to say, but part of me feels guilty to be happy.  However, I also know that is no way to honor my girl, so I try to keep things together when it comes to Gracie most of the time and give myself permission to be sad on May 1st every year – And somehow writing this out and sharing it helps me although I’m sure it also illustrates some alarming shortfall that I have to need to do it, but I frankly don’t care.


When our first born, Lylli, was a baby she caught RSV and had to spend a couple of nights in the local hospital.  I remember how scared we were and how we freaked out when her Oxygen level got in the low 90’s and how they finally brought a bed into her room because they busted Carrie crammed into her crib sleeping with her too many times.  I guess they figured the risk of her falling out of a bed onto the floor was less than the risk of being smothered by Carrie (Although after what I’ve learned from watching Carrie as a mother to Gracie, I know that laying there crammed in with Carrie was the safest place Lylli could’ve been).  We were so scared and I’m certainly not discounting those that have had a bout with RSV with your typical child because it really is scary regardless.  I will say however, that it’s crazy how a parent’s perspective can change once they live with a medically fragile child – For reference, Gracie, until her heart had 4 chambers, lived her life with her Oxygen levels in the 70’s.  Mid-April 2012 Gracie had a follow up appointment with her cardiologist Dr Hills who noted how amazing her heart looked.  We did it! All of the traveling and surgeries and ignoring those that said it couldn’t be done was worth every second – Our Gracie’s heart was whole and stronger than ever.  However shortly after, she caught a cold and on April 21st Gracie was admitted into Minneapolis Children’s hospital with pneumonia.  I was reading the journal on her Caringbridge site and after going through all that we had with her, the journal entry noted how it wasn’t a big deal and that we were excited to get her home and joked about how we would someday sit with her and read through all of the entries to show her how much of a miracle she was. 


We had been through it several times before – Carrie, Mama bear, stayed with Gracie around the clock to make sure she knew that her Mama was always there.  That last stay was amazing because Carrie was 36 weeks pregnant with Mickey and would still stand on her feet for hours over Gracie in her bed so she could hold her hand or console her or whatever she could do to make it easier for our girl.  My job was to go to work and take care of home and shuttle Lylli back and forth to the hospital each night so we could have dinner together as a family.  After dinner, Carrie would spend some time with Lylli in the Ronald McDonald house while I spent some time upstairs with Gracie.  That was the routine almost every night, except for on April 30th.   Gracie had improved enough to be taken off the ventilator but as often happened after extubation she was very crabby.  Carrie didn’t feel right being away from her for any period of time that day, so since I had to take care of some things around the house, we decided it would be best for Lylli and I to stay home that night and have some Daddy/Lylli time.  Later that evening, Lylli and I were able to skype with Carrie and Gracie.  Gracie was doing a goofy little thing similar to how a kid kind of hiccups or catches their breath with a small huff-huff when they are trying to regain composure while they are crying.  It was a bit odd, but was so much better than seeing her on a ventilator.  I often feel guilty for not going to visit her that night, but at least we got to Skype so Lylli and Daddy could tell her we loved her.  As we ended our Skype call we agreed we would keep our phones nearby for any updates on either end.  I can’t remember exactly what we would say when we would get off calls during these times apart, but it was something like “You take care of that one and I’ll take care of this one”.  Knowing she was there with Gracie during her many hospital stays made it possible for me to function outside of the hospital and I hope she felt the same about me taking care of the outside details.  Without her, there is no way I could’ve done things like flown home from Boston while my daughter was on a ventilator.


We got off Skype and I read Lylli a story and tucked her in next to me.  She was always so excited that on the nights when Gracie and Mommy were in the hospital she got to sleep next to daddy, but truthfully, she was the only part of my whole world that wasn’t away in the hospital so it likely helped me more than it helped her to have her right there next to me those nights.  The next chain of events play way to often in my brain like a movie – Sometime after midnight I got a call from Carrie saying that Gracie was not doing well and they were working on her and I better get there ASAP, that she crashed and they were working on her.   I quickly woke up Lylli and told her how forgetful daddy remembered a meeting that we were supposed to have at the hospital and that I was late.  I wrapped her up in a blanket and had Carrie call her mom to meet me there.  I swear I drove from Coon Rapids to Children’s as fast as that car would go but it still felt like a two hour drive.  I remember Lylli being confused and asking lots of questions - I think I even told her at one point that Mommy really needed her glasses to read something.   I’m sure I was not doing the best at hiding how scared I was but I was trying anything to not freak her out as I was screaming inside!  I got to the parking garage where I normally park and ran to the door, since it was that early in the morning, it was locked.  I remember the feeling so vividly as I ran carrying Lylli in her blanket as fast as I could down one flight after another of stairs trying to open the doors on every floor until I ran out of doors and was below ground – We made our way outside by running up the down ramp and somehow managed with her in my arms to climb up a retaining wall and forced my way while covering her up through a bunch of bushes in a flower garden and ran across Chicago avenue through the front doors of Mpls Children’s hospital.

Carrie’s mom was there waiting for us, so I handed her Lylli and I remember fumbling through my wallet to find my license to get through the guard, but then finally saying, you know what I don’t have time for this I need to get to my wife and daughter – I’m not sure if I threw my license to him or my mother-in-law, but nobody stopped me as I ran to the elevator.  I went up to the Cardiac intensive Care unit where Gracie was and I remember hurrying around the corner and seeing Carrie standing there scared outside the wide open doors of her room while people frantically ran in and out of it.  Carrie looked at me and said “I can’t tell them to stop”.  I looked in the room and saw a bunch of people frantically trying everything they could to get her back.  Then I looked back next to Carrie at Dr Kendra - I don’t remember her whole name, but feel the need to personalize it a bit because she was much more than just a doctor, she was an intensive care doctor that  we were very thankful for because she had saved her life in the ER on a previous visit.  I asked her (more like told her) “ she’s going to be OK, right?”  I will never forget the look in her eyes when she told me “No”.  At that moment, it became very obvious that they had been doing CPR on her since the phone call with Carrier telling me to get there and I’m pretty sure most of that time was for us to make sure I was there with Carrie before they stopped.  The hardest thing I’ve ever had to do was walk into that room and say “Hey guys, thank you, but that’s it – Please stop”.  One by one, people started clearing from the room.  They took Carrie into the room next door while stood over her shaking so bad and started pealing wires off of our girl.  The nurse helped me wrap her up in a blanket and I carried her into the room next door where Carrie was.   We were both in shock.  I remember standing on one side of the room holding her so close, rocking back and forth and patting her bottom like I would often do to sooth her.  Carrie and I spent some time with our baby and then we had to hand her over to a nurse for the last time.  And that was it, we were done, she was gone – it was time to go home.  Since we had been there for about 10 days, we had a bunch of stuff there. I asked the nurses to bring our stuff to the front door for me to pick up and Carrie and I slowly and in shock made our way to the car.  I drove like a robot away until we realized we had to go back to the front entrance and pick up our stuff.  I can’t remember if a word was said on our long ride home.  I just remember getting home around 4 am on May 1st without our girl and realizing that our lives would never be the same. 

Not a day goes by that I don’t think about Gracie - Not a holiday or life event or first time experience by one of our other kids passes without a little pain wondering what her same experience would’ve been like.  She continues to be very much a part of our family and I miss her every single minute of my amazing life.  I know we are very blessed, but today and tomorrow, I will be sad.