Monthly Archives: February 2015

I survived

I did it! I survived what I felt would be a devastating ordeal. I went through my daughter’s clothes and by myself.
Last Wednesday I felt the time was right. Not sure why, I just did. I went and opened her closet – probably for the first time in almost a year. What memories this small closet has held onto for years now. This closet had become the keeper of my treasures. On the right hung all her dresses. Such beautiful dresses, some still with tags attached because she never got to wear them. I grabbed a handful that I instantly knew needed to be kept in some way. And then, as I moved one dress past me on its hanger, My tears began to flow. There hung her gray dress with the embroidered flowers at the bottom. My heart skipped a beat. This dress is what she wore for our family pictures. EG3 - 1 Our first and only set. It was the top thing on mine/Parker’s bucket list. Parker was already in hospice when we took these photos. She was already puffy. She honestly didn’t look like herself anymore – well to me anyway. She didn’t smile for any picture. She just laid there. That wasn’t ‘her’. That wasn’t her personality. But these pictures were so important to me. I knew she would be gone soon. Too soon. Way too soon. I clutched the dress in my hands and felt my body get weaker. My knees shook. I cried uncontrollably into this dress for what seemed like eternity as I gently sat myself down on the ground.
How could this be all that I have left? My life, my everything has become a room of clothes, shoes, toys, therapy equipment, and dust. That has never seemed fair – but it never is, is it?

I got myself together and continued – I needed to, I had already begun the process by just opening the closet – why stop now? I gathered her first birthday dress, her second birthday dress, her last Easter dress and a few others – tears still flowing. And then I really had to prepare myself…..her ‘real’ clothes, the clothes that she wore on more than just one special day, the pajamas I dressed her in every night, her cute matching sets from her grandparents, Doug and Lihn. I knew this would be the really hard part.
I knew that every shirt, skirt, pajama set would hold a memory, an image, a new yearning for my daughter and the life I once had. Every drawer I opened brought new tears, new emotions. I was mad. Mad that this was my life. That her life was over. And I was left to package up what she left behind. And then I was hurt that I got mad in the first place. Someone even called me in the midst of this challenge and said, ‘her clothes should make you laugh’. I quickly replied, ‘no’. To which she said, ‘but you can remember her personality and how silly and funny she was in them.’ And then the tears burst out, ‘I am. That’s what hurts so bad.’ The whole time I shuffled through more Hello Kitty clothes than I ever remembered buying all I could do was think of the good times. The outfits I always chose for dr appointments – you know, the ones that actually matched. The shirt that had formula stained all over it because her button came open and spilled her feed all over someone. The pajamas I always felt were the most comfortable and I’m sure she would agree if she could’ve talked. And all the things I wouldn’t have bought her but her nurses did, like her leopard print faux fur coat.

Not happy in her leopard coat. lol

Every thing in her closet and in her drawers held a great memory, in one way or another, and that’s why this was such a challenge for me. The good times, pleasant memories are what bring me the most pain. The most tears. The most sleepless of nights. It’s the thought of no longer having new memories being made, no new pictures to share, no new clothes being bought, no new ‘inch’stones to rejoice in, no birthday parties being planned. Those facts are what break my heart over and over. Because I do know how lucky I am. I know I’m beyond blessed that I was chosen to be her mother. Me. Out of millions of women, it was me. And that fact has never left me. But it’s also because of that that I cry. Because I wasn’t done being her mom. I wasn’t done with every beautiful moment she brought to my life. I just wasn’t done. There’s that meme that says, ‘If I had to chose between loving you and breathing… I would use my last breath to tell you I love you.’ And that’s true. I would have chosen it to be that way but it wasn’t meant to be. God had other plans. And it’s because of Him and His plans that I also rejoice – for the time I did get, the memories we did make, the pictures I did take, the life I was thrown into and learned to navigate, and the desire to help other children like my daughter and other parents like myself through The Parker Lee Project. I also rejoice in the fact that I survived. Survived something that for the last two plus years I thought would bring me to my knees harder and longer than it did. I thought I would crawl into a hole from the ache in my heart. I thought the pain from missing her would have me postponing this necessary step even longer. But I didn’t. I survived. 496


Such changes…..

Where do I even begin. My emotions and grief have been running rampant lately.

Parker (3 days old) & Mommy

Today is a big marker. A weird one to most probably, but it’s one I’ve been dreading for years. Today means Parker has been gone the same amount of days as she was here. Meaning tomorrow she will have been dead longer than she was alive. To say this messes with my mind is an understatement. My sense of time has become very distorted since either she was born or she passed – I can’t even truly remember which life changing event warped it.  I do know that it felt like I had Parker in my arms for so long. In a good way. In the best way possible.  Maybe it’s because I knew she could leave at any time, maybe it’s because I truly enjoyed every single day with her (even the ridiculously hard ones), or maybe it’s both. I’m not sure. But those 2 years and almost 4 months felt like eternity. And, now, saying she’s been gone for that long blows my mind. It seems unreal. It wasn’t yesterday? It wasn’t a year ago? The time has flown by. And with today marking what it does it makes my heart and mind work extra hard to comprehend that those two feelings, two time lines are actually one in the same. This day has been etched into my brain for a long time. And as its drawn near I think it’s brought on a whole new level of grief. My heart feels like it’s so fresh, like I just lost her. I’m such a mess lately and all the big changes happening aren’t soothing my soul any.

Parker in her Kid Walk

Last week a therapist contacted me (through The Parker Lee Project) about a local boy needing a gait trainer. The boy’s therapist explained the size they were needing and I knew we could help.  Parker had one. A Kid Walk. She loved and hated it. She would usually be ok just hanging out in it, but shortly after someone tried to make her work in it, it was over. Pouting, yelling at you, and sometimes even some tears. I knew after 2 years of it sitting there mixed with TPLP’s other equipment that I finally found the home it would now belong to. I was happy about that, yet the tears flowed anyway. I had given other things of Parker’s away in the past, but this seemed to bother me. But I packed it up, delivered it, and then cried. Cried hard. It was expected some, but I wailed, sobbed, screamed. And then…like magic…..I was pretty good.

Parker in her Big Joe chair

While dropping off the gait trainer I was speaking with the therapist and the boy’s father – the boy needed a seating arrangement. Something. Anything. Besides constantly laying.  Before I could stop the words from leaving my mouth like vomit I offered up Parker’s Big Joe chair. This chair was a big part of her life. She sat or laid in it at least once everyday since we bought it. She loved it. We could always make it contour to what position she needed. I would even sit in it and hold her. (Which might explain why it needs beans added to it to make it full again.) I was almost mad at myself after offering it. Only because I wanted it. But for what? It’s been in a room that’s pretty much been closed off for over 2 years. I’m glad my heart didn’t get in the way of my head giving away her chair. The boy NEEDED it. Truly. And I NEEDED to give it to him – whether I knew it then or not.

The next morning when I woke I was already sad – I needed to say goodbye to a piece of my child. I took it out of her room and placed it on the floor of the living room as I gathered up all the other items I needed for the day. As soon as it hit the ground Sugar/Boogie/Boog/Sug Nite/Asshole, our cat (and a few of her names), immediately went to it and looked for her baby, her Parker. Sugar never wanted much to do with Parker while she was alive, but she always watched over her. She laid in her room (even with the nurses – she typically hates most people) so she could watch the going ons and I can’t even watch videos of Parker without Sugar looking for her in my phone and in my lap. So when I saw her looking for Parker I went and sat in Parker’s chair. Sugar immediately jumped in my lap and laid down. I cried. I know Sugar felt my sadness. I could feel her’s. I knew she missed her baby as much as I did. We sat for a while. It was nice.

Parker watching over Sugar and I in her chair
Tristan in his new chair from Parker

When I delivered the chair and I know I was awkward because I was never going to see it again. I was like a child having to share my favorite toy – I wanted to keep my hand on it.  I wanted the family to know how special it was – I think they knew without me having to say it and that helped a ton. This time when I left I felt somewhat satisfied. And the picture I received later that night of him in it made my soul know that it was the right thing, the best thing. Please, don’t get me wrong, I’m more than happy that another child gets to use and benefit from these things of Parker’s, this is just the journal of grief that comes along with giving them away.

Last week’s adventures made me realize that, though I’m not ‘ready’, I can handle the one thing I’ve been dreaded for so long – packing up Parker’s room. We rent our house so we’ve always been aware that one day we might have to move. We did initially think about purchasing our current home, but after long, hard talks and using logic (not grief) we decided it’s not the best choice for us. So, with that being said, we’re moving.

The anxiety and pain that came with even the thought of going through Parker’s room has now become my reality. I started yesterday. Giving myself weeks to fully accomplish the task. Because as soon as I walked into her room yesterday to get started I felt paralyzed. Paralyzed with grief, with pain, with what was, with what could have been. How could I seriously package up my daughter’s entire life? IMG_7331 Her therapy toys, her cute outfits, her embroidered towel, her favorite stuffed animals? It’s not that some of it wont be used in our new house or my office, but her clothes won’t. Her drawer full of hair accessories won’t be used by me or her again. Her lotion bottle, her comb, her shoes, her Halloween costume she never got to wear.  It just feels so FINAL. So real and apparent that none of these things are needed anymore. The girl who used them, who needed them is gone. She’s been gone. For over 2 years now. And I can’t keep it all. I know I can’t. That would be unhealthy, just like getting rid of it all. So I’ll use the next few weeks to try and find the happy medium. And also use the weeks to try and not feel like we’re leaving her behind. Or leaving a piece of our lives behind. Because as much as it was/is Parker’s room, it was our’s too. We lived in here too…with her – therapies, long nights, long days, play time, cuddle time. I literally slept in her bed, by her side, every day for the last few weeks of her life. And taken plenty of naps with her there. I’ve cried in that same bed, longing for her, since she passed – too many times to count. My mind knows that she’s such a vital, beautiful part of my life and who I am now that she could never really be left behind, but my heart feels different.

Med list from 8/12

Yesterday as I went through the papers left behind, nurse’s notes, daily planners, Med sheets, nursing guidelines I found Parker’s vitals for her last day alive. A full sheet depicting her respiration count, heart rate, oxygen saturation.  Seeing that rapid decline in her numbers that day was like reliving it all over again. Seeing notes that her face and extremities were cyanotic sucked. Remembering that she hadn’t urinated in days (complete renal failure), hadn’t had a bm in over a week (couldn’t process food and was third spacing due to organs shutting down), and that she was completely unresponsive even to stimuli made my heart break all over. I told her that day that I was ‘ready for her to go when she was’. I assured her that it was going to be ok. Phillip promised her that he would take care of me. And I was ready that day. She was so tired. She was hurting. She was done fighting. I was strong for her that day and I needed to remember that – I need to be strong like that again as I get through these steps.

I’m hoping and praying that this time in my life, my grief, my journey will prove to be therapeutic, because I do refuse to sink. So I’ll take this time to apologize, in advance, for the outpouring of memories and tears that will fill this blog as I go through her stuff. I know putting it here is my therapy and I know if I summarize each day I do this I can get through this being stronger than I am now.

Ernest Hemingway once won a bet by crafting a six-word short story that can make people cry.  Here it is:


“for sale:   baby shoes, never worn.”