3 years.

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My daughter Lily was born still.

That’s what would have been my statement had we waited any longer. She was born blue and was resuscitated; because of her beginning without oxygen she suffered brain stem damage, she was frozen for 3 days to help heal her brain damage, the first time I held my baby girl she was 4 days old. But she was alive so I was grateful.

Weeks passed with so many tests, all with a negative conclusion and after having a feeding tube surgically placed into her gastro intestine we were able to take her home. What gets me is that even though they did 3 MRI’s and multiple other scans, they missed what would eventually kill her. That was her trachea. They were so close too, they found the holes in her heart, they found the valve that pumped the wrong way, all of these would need surgeries to be fixed but she needed to be bigger and stronger to endure them, had they looked an inch higher they would have seen her abnormal trachea.

The night Lily stopped breathing and I performed CPR on her plays out as a nightmare in my memory, for the longest time I wanted to move because every time I looked at that spot on the  floor where she lay, my heart stopped, but then we replaced the carpets with hardwood and I was sad that that was now gone too, so I knew I couldn’t leave the one place she had been. When they found out about Lilys trachea, the doctor phoned and told me she would need a tracheotomy to live- that’s a hole in her throat to breathe, he said she would never have a good life, would never speak, would never taste anything and would have a shortened lifespan because of it. That surgery was on top of the other 4 heart surgeries she needed. This one would now be 1rst though. He said I will do it if you tell me to but even on a healthy baby the chance of survival is slim. What the fuck do you say to that!? We had company downstairs that day, I didn’t go back down.

We went back to the hospital 1rst thing the next day probably our 100th drive then. I suffered from ptsd every time I got into the car after she died. 4 days later we signed a do not resuscitate order, they took out her breathing tube and we held her until she died 30 minutes later at 4:55 pm on February 18 2012. I am forever haunted by this. What if we did the surgeries? Most likely she wouldn’t have died in our arms but on a table. What if we accepted the transfer to Canuck Place? We probably would have had a nicer end of her life together as a family. What if she was born still? None of these traumatizing experiences would have happened, we would have still grieved but differently I imagine. The hardest, what if she continued to breathe, what if she was that 5% that survived.

So as life goes on, as we try to understand the why’s of it all, we want to grow, we hope to learn, we try to accept, we continue to live. We chose to remember.

Wed.Oct.15th 2014 Child Loss Memorial Service for Pregnancy & Infant Loss Awareness Day

langley lawn cemetery childrens plaque

Mourning Mothers held their 12th annual Child Loss Memorial service at 1:30 yesterday(October 15th- Pregnancy and Infant Loss Awareness Day) at Langley Lawn Cemetery4393 208 St, Langley, BC There was  a dove release and a display of “Angel Gowns” made from wedding dresses, for stillborn babies or those who have died after birth. We lit a candle for Lily, placed an angel on the cemetery’s Angel Tree. I am so grateful to have found this place, I have been longing for a place to visit where I can remember my girl, having had her cremated, her ashes sit in a love box on our fireplace, we always felt like we had nowhere to go. We wanted to ‘buy’ a bench and have an in memoriam plaque placed on it but unfortunately Langley has decided it appears too negative to have ‘In memory of’ or  birth and death dates, so we decided against it. I cant even begin to describe the anger I felt when they told me this. Anyway, we do have a plaque outside the NICU where Lily spent most of her life but its just too far to visit and a little awkward to stand in a hallway with people and doctors passing by, also when we saw the plaque for the 1rst time we of course took a picture and a security guard told us we were not aloud and questioned why?? We thought are you kidding?! this is OUR plaque for OUR daughter, WE paid for and we will take a picture if we damn well please! Anyways after the service yesterday I felt so completely and utterly drained. But so glad I went.

“I find hope in the darkest of days, and focus in the brightest. I do not judge the universe.”
― Dalai Lama XIV

lily dovetree

Happy Birthday Lily

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Happy Birthday Lily

Today we should be your celebrating your birthday. I am sorry. I love you more than I can ever tell you or show you. I miss you more than my heart allows without losing myself. I remember you and what life put you through. I thank you for what you gave me and have taught me about life, love and most of all what matters. Happy Birthday my sweet angel.

“Those who contemplate the beauty of the earth find reserves of strength that will endure as long as life lasts”     -Rachel Carson

Time only gives you space to cope, it does not heal.

Aside

February 06, 2013

Don’t say time heals all.

You don’t know.

Time heals nothing, it simply passes and unbearable feelings become bearable – not healed. I am not choosing to be sad. The heart chooses when it wants to hurt. I can tell my brain the logic but it tells me to fuck off.

Grief is  a never-ending and very narrow spiral staircase, you slowly go up, its hard, its dizzying, sometimes you trip or stumble but keep going forward and sometimes you fall back hitting your head the whole way down. Time heals nothing it just makes it easier to get back up again and again because you have to keep going. All you have is hope that it will be ok.

February 11 2013

One year ago today I had to give you CPR on my floor until the ambulance came….. One year ago tomorrow you smiled at me for the last time and then doctors surrounded you as you began to struggle, I walked away not able to bare the pain of witnessing what was happening to my child, my baby…. in a week- one year ago you died in my arms and took a part of me with you forever. I miss you my beautiful girl. I thank you for teaching me there is nothing to fear or worry because right now is all that matters.

February 18th 2013

Lily’s “anniversary” of her death came and went the lead up to it was much worse than the day. I hate the word anniversary- as if we celebrate it. I did spend most of the week purchasing any and all bouquets of Lilies I could get my hands on. My house was filled with beautiful flowers for you my beautiful girl.

 

March 22 2013

Lily has been dead for one year and one month, I remember leaving the hospital, walking out feeling empty, feeling relief, and feeling confused, what just happened? I couldn’t look at her as she turned blue, after they took her breathing tube out, I was scared of having that image etched in my memory forever- so I didn’t look, I wish I had. I wanted to run out that hospital, I now wish I had stayed longer, held her longer, kissed her more. But I didn’t. I spent the following weeks in a daze- a zombie like state where I did what I needed to do, I avoided most people- they all looked at me with pained, pitied expressions anyways. I made pictures of her, I laid in bed a lot, I cried a lot. After five months the shock wore off and I think that is when it hit me…. I had a baby girl, I watched her suffer, I watched her brothers and her father suffer, and I then watched her die. What the Fuck!? I went on long walks, I hid my tears from all, no one deserved to come to the land of tears with me. Steve and I got incredibly close, and then drifted apart our grief taking separate paths. We are close again but we needed that space.  I have little triggers now that inevitable have me thinking of her, crying for her, certain songs, certain words –olive, trachea, February to name a few, some specific things I see- a rainbow, a lily flower.