Day 4: DARK + LIGHT – Dark and light? Good and bad? I once thought these two couldn’t both exist in the realm of grief. I was wrong. And I’m still learning about the new ‘lights’ as they come.
Oh the dark side, I know it too well. Anyone who has lost a child can tell you of all the dark places. In the darkness where the tears cover your face. The blankets that hide your frail body from the rest of the world. The rock you wish you could actually climb under. The many masks you learn to wear daily in hopes of concealing your true pain. Darkness becomes a very present part of life after you’ve lost a child.
Finding the light can be hard and leave you feeling guilty at times. I was afraid to be happy at some points following Parker’s death. I was fearful of the judgement I thought would come with it – it turns out I was the one judging, judging myself. I hated myself for wanting to smile. I remember we had people over after Parker’s funeral – our friends and family accompanied by food and alcohol (much needed) and a picture was taken of me with 3 of my close friends. I was smiling. I can’t remember now if it was fake or not. Pretty sure it was real because even though the situation felt surreal the love and support was very much true and real. But I hated that picture for a long time, probably until recently. I was mad that I could smile and have fun while my daughter had died only one week before. I was mad that any of us could muster a smile. I mean we had just celebrated her life. But what are you suppose to do? Stand in a circle crying? Maybe singing kumbaya? Nope.
It has taken me a while to see the true light of this situation with the dark being so present and overpowering. But in the light I see the beauty Parker brought upon this world, the hearts she opened, the lives she changed. In the light I see her beautiful wings. Her dancing. Her singing – oh how she loves music. Her practicing the word ‘momma’ for when we meet again. In the light she’s free of all that ailed her here on earth. There isn’t anymore ICU visits like above, no trachs, no feeding tubes, no seizures, no more restrictions. She’s free and she’s beautiful. In the light I see her smiling and proud of all Phillip and I do in her honor. In the light she’s making us who she’s always seen us as, she’s guiding our way, and watching over us. In the light I see a pristine view that we will share together when my time here is done.
You see, it’s now that my darkness has cracked more and more over the years the light has begun shining brighter and brighter. My heart has always known about the light but didn’t always focus on it. I still have my dark days where I try to hide my frail soul, but I have noticed the more I speak about the darkness, the less hold it really has.
The house is pretty much completely packed and empty now. The movers came last Friday. It’s been a week of adjusting, going between two houses, and finding the time to settle into our new home. I’m excited, truly, but I’m also sad.
Parker and I moving to the new house.
I’ve found myself feeling completely shattered this week. My heart is in a million pieces, some too small to gather. I know they’re too small because I’ve tried. I’ve tried all week to unpack the pieces and put them into theyre new places. I’ve tried to place some of the pieces into storage bins. I’ve even mailed a few pieces (that will always be attached to Parker’s belongings) to new homes this week. And there’s pieces that I know will never leave our old house – no matter how hard I try. The tears have been present all week – at all times. I’ve broken down even when trying to keep them at bay. I’ve cried more this week than I have in months.
The silence has become my enemy. I’m scared to turn the tv off at night because that’s when I can no longer breathe, when my chest starts to hurt, when the pain becomes sobs. The music cannot be loud enough when driving in the car. When I don’t know the words to the song that’s on, my mind immediately drifts off to Parker and the tears are right behind.
The move is good, what we need. But the new house has three rooms, not four. The new house is just an example of the finality of all of this. A reminder that Parker is no longer here – there’s no longer a need to have a room for her. I know I’ll get used to it but I think it’s going to take longer than I originally thought. But this finality of this move also has me feeling angry, the natural, grief-makes-no-sense kind of angry. And I not fine with the angry part of grief. Though it’s natural, I feel it’s the selfish part of grief. The anger comes from what I want, how my life has been effected, what I’ve lost, what I’ve suffered, what I wish life was now – and those are selfish things. Parker was given to me for a reason. He took her back for a reason. Her life was not lived in vain, I will make sure of that. I also have to trust in that, in His reasons.
Today I left more of my shattered heart all over Parker’s old room. I opened so bags that I haven’t opened in a long time, almost 2 1/2 years actually. Today I found the stuff from Parker’s funeral. Fresh tears landed on cards of condolences – right along side old tear stains from the first time I read them. Then there was a few envelopes, in a plastic bag, that I didn’t remember, with her name typed on the outside. I opened it and found something I never thought I’d see again – my daughter’s hair. A locket, one perfect curl, sealed in a tiny ziplock. I had too many emotions to count. I found myself, once again, on my knees – saying ‘no, no, no’. I pleaded – with what, I don’t know – but I remember that same plea, that same voice, that same emptiness that came moments after Parker took her last breath. The hair was accompanied by her foot print. I honestly don’t remember her feet being so small. But how can I forget that? How have I let myself forget anything about her?
I then found a copy of her funeral – that the officiant apparently had typed out and given to me. Reading over it, I’m not sure if I was present that day – mentally. The words I read – that he spoke that day – seemed foreign to me. I felt I just went through the motions that day, but it must have been worse than I thought. I remember I didn’t cry. I couldn’t. I think I had disconnected myself so much – for my own sanity. I found the words that I wrote, but couldn’t speak that day. Someone read it for us. I’m not even sure who. Our thank you for the support, for loving our daughter, for coming to celebrate her life. Celebrate the life that i cherished more than my own.
So please understand that today I’m mad. Today I’m hurt. Today I’m broken And shattered. Tomorrow is new. Tomorrow will be different. Tomorrow I will wake up and hopefully remember my purpose, my desire to keep her legacy alive. Tomorrow I will sew my shattered heart back together, patch it as best I can. Tomorrow is a new day. But today I’m shattered.
As a special needs parent you face many obstacles, one of which is just trying to navigate your way through this world. To give your child the very best life they can have. And there’s really two worlds we exist in – your family, friends, and life that was before your child’s diagnosis and the special needs community you find afterward. Because once you have a special needs child it’s a battle of dealing with a whole new way of life. A new journey that leaves you not knowing exactly where you fit in. Trying to balance these two different worlds.
Once you have a special needs child you feel isolated from the life you had before, especially if you’re a first time mom. You feel no one truly understands your situation- and quite frankly, they don’t. Just as you wouldn’t have understood until you were made to. It’s learning to juggle a new language that most don’t understand. You speak in acronyms that you never knew existed like DME (durable medical equipment- your supply provider) or LMN (letter of medical necessity) or even PRN/BID and so on for medications. You juggle specialists that you never thought you’d have to take your child to. And you might even have to figure out how to live life with a stranger in your home (your child’s nurse). Learn how to balance your mothering against their job and duties. And do you think the people from your old life grasp the frustration when you’re complaining about the nurse using the last of something and then not telling you? No. They might listen, but they don’t understand. And they probably laugh when you tell them you had to fire a nurse over a pulse ox probe. Seriously, a pulse ox probe. I even chuckle about it now, but at the time it was a serious offense that left us without one for days – not being able to know her oxygen saturation or heart rate. Big deals in our world. Your old life doesn’t understand that you might not make it to a lot of functions or that you might have to cancel last minute because your child had too many seizures for your comfort that morning. It doesn’t mean you don’t want to be there. Your priorities have shifted and you’re not just a mom who can hire a babysitter. You’re also a nurse, an advocate, your child’s lifeline. You’ve become the recognized voice to the after hours operator for your child’s doctor. A regular face at your local children’s hospital. You’ve pretty much have become a whole new person still trying to stay connected to a world that supports and loves you but doesn’t understand. And you will always need these people, your old life. They will be crucial to your sanity at some point in your journey. They’re not replaceable, disposable, though they might feel like it at some times (and you’ll feel you’re replaceable for them too), it takes effort – lots of it at certain points – effort and understanding from both sides. Like I said, they don’t understand but there are some who are learning and trying and loving you the entire time.
And then there’s the world that does understand….that have children just like your’s. That have been through the same challenges. They, too, have had to remind themselves to breath as their child is being taken into yet another surgery. They, too, have stayed up too many nights watching their child while they sleep, afraid of what the future holds. But where do you fit in there? The newbies? The veterans who know way more than you? The parent that researches too much and over thinks things? The parent that is naive in their lack of researching and learning – ignorance is bliss to some? Parents are all different and still manage to understand and help each other. There’s parents that have been around the block more times than you can count. They’re like your Yoda. They’ve been through it all but they also see the reality now. The reality of what the future truly holds. The reality that you, as a new special needs parent, sometimes refuse to see. They still hold on to hope, just like you’re doing, but they’ve seen it all. They’ve released too many balloons for their friend’s children who have left too soon. They’ve watched everyone of their friend’s fight a huge fight at some point. Some kids recover and some do not and they’ve watched it all. They’ve prayed for days on end for children they only know through pictures. They’ve answered a million questions- sometimes the same one over and over. When you’re new to this group you still don’t feel like you fit in. You’re new. Inexperienced. Looking for hope and answers. You finally find your way. Find those parents that you connect with. And you fall in love with children you’ll never get to meet, but it’s a world that understands. A completely different world than what you’re used to, but they understand your frustrations, your fears, and your dreams. They truly get it.
And then, one day, the unimaginable happens. Your child dies. And you’re stuck. Completely stuck between two worlds. Hovering in this space of unknown – where few have been. Where trying to navigate is just as hard as having to be there in the first place. You feel like you’re no longer a mother. You can now go out and do things with your old life, but sometimes it’s still hard and they still don’t understand. You feel like you’re no longer a special needs mother. Like you have no more input or answers to the questions your support group asks and now they don’t understand. You almost feel like you’re no longer a valuable asset to either life. You’re just there. You’re an example of the reality that none of the parents what to see. You become highly vulnerable to all situations. And awkward. Your new friends don’t know of your life as a special needs mom. Your struggles, your pain. And any new special needs mom friends are curious of your struggles, your loss, and how it became that way. It’s a great balancing act that isn’t easy or pretty.
Where do I even begin. My emotions and grief have been running rampant lately.
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.
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.
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.
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? 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.
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: