As I sit here thinking and dreading and debating if I can sleep right through this Mother’s Day I wonder if last year was this hard. Was the one before that? This is my third year celebrating (or surviving) Mother’s Day while no longer having my child in my arms. This year is hard – feels to be the hardest one yet, though it seems unlikely. My first one had to be harder, it just had to be.
Mother’s Day has been one of my hardest holidays since losing my daughter. I’m guessing it’s because she was my only child. I will never have anyone to call me mom. Ever. Sure, I’m a stepmom and I hope one day to be an aunt and grandma, but I will never again be mom to anyone. A heartbreaking reality for me.
Like most women, the greatest day of my life was meeting my child for the first time….becoming a mom. She was and will always be my greatest accomplishment. And this Mother’s Day, any Mother’s Day, reminds me of exactly what I’m missing and longing for…..my child. It’s not that there’s ever day – or moment really – where she’s not on my mind, but Mother’s Day is a painful reminder that even though I’m a mother it sure as hell doesn’t always feel like it. I have to remind myself – I’m still a mother. It’s extremely difficult being a mom to a child you can no longer touch, hold, kiss, make new memories with. And I would give anything to have Parker still here.
So tomorrow, on Mother’s Day (on each Mother’s Day and every day in between), honor every woman. Post adorable pictures. State your love for your mother and for the little ones who gave you the honored title. And please say a special prayer for us ladies with broken hearts on this day – for those who have lost their mother, have lost their child, have miscarried, or who still long to be a mother.
Happy Mother’s Day to all the different kind of moms. And sending kisses to Heaven – to my daughter and every child and mother who join her. I miss you, Parker, beyond words, but love you even more.
‘We had to learn how to bend without the world caving in. I had to learn what I got, and what I’m not, and who I am.’
As of today when someone asks me how long ago my child died, I have to say 2 1/2 years. Where has the time gone? And why hasn’t the pain gone with it? At least some….Granted I’ve made leaps and bounds within my journey of grief, but the pain is no less. How I handle it has changed. How it effects me is different. My tears are not as frequent. But the pain is exactly the same. My heart hurts just like it did as I watched her take her last breath. It’s shattered. It’s broken. Never to be fully repaired.
I know it might seem to some that I’m in constant grief, but, I promise, I’m not. I just try to be very open and honest and true about the journey I’m in. When I first lost my daughter I struggled with more than just her death. I felt alone. I felt my husband, who witnessed what I did, was the only one who understood. He did his best to keep me occupied so the grief didn’t completely consume me. It took a little bit but then I started having fun again. And I felt guilty. Like cry because the guilt was horrible.
I disconnected from social media for fear of being judged. I didn’t want to post my fun, happy times because my child had just died….how could I be smiling and having a good time? I didn’t want to post my true, heavy times either…. I felt I was depressing my friends (I was because I was unfriended by quite a few- people can only watch a train wreck for so long), that people thought I should be ‘over it’. I felt judged no matter what I shared with my ‘friends’ on social media. I think the truth is, I was judging myself and I felt ‘wrong’ during most of my moments. I truly only saw 2 kinds of bereaved parents on social media – ones who disappeared or never posted anything of their child and the ones who only posted their grief, every day, and spoke of their struggle and reasons to continue living. I eventually realized there was no ‘wrong’ way to grieve but I knew I didn’t want to be either type of bereaved parent. I had/have plenty of reasons to continue on – sharing my daughter’s legacy is one. And I needed to speak my daughter’s name freely and often.
I decided during my child’s first Angelversary that I needed to share – for my therapy process as well. I wanted parents to know that grief is hard. Bottom line. But I wanted to share that it comes and goes – riding the roller coaster and letting the highs and lows happen as they do is so therapeutic. I wanted to share that even after 2 1/2 years my heart is still broken. I know it will stay this way, but I also know that I, myself, is not broken. I’m capable of receiving great happiness in life – all while keeping my daughter’s memory alive. I wanted to share moments (like my nightmare – refer to the last blog ‘Dream….I mean, nightmare’) so parents can relate and know they’re not alone. No bereaved parent will have the same journey through grief, but they, at least, can know they’re not alone in the craziness and that no part of their journey is ‘wrong’.
I’ve really struggled over the past month with trying to corral the words that are running rampant in my mind. They haven’t been so easy to gather. It’s been hard enough trying to understand my own emotions with the move….packing up Parker’s stuff….passing her bed onto another child….saying goodbye to that chapter- that house….moving into The Parker Lee Project warehouse….receiving the blanket that was made from Parker’s clothes….to making our tv debut on our local news channel. See what I mean? So much stuff has gone on….so many emotions, not too mention so many emotions happening just at one time. I had some mini meltdowns while packing up and moving, but nothing too terribly bad.
Now, today…..today’s a whole other story. I had full on blind sided by grief, ugly cry, melt down today. You see since the day that Parker passed I asked her and prayed for her to come visit me in my dreams. I imagined it would be like movies or like the dreams some other parents tell of…to see her, again, laughing, or finally dancing, or saying momma for the first time. I honestly just wanted to see her happy. That’s it. However it came. Just happy. Well it took 2 1/2 years but she finally made her appearance within my dreams…or really I should say nightmares. It was horrible. I woke up abruptly, gasping for air. You see I finally saw my daughter again and it wasn’t a video that’s been etched into my memory, it was her. It felt so real. And it broke my heart. There was my beautiful daughter, in her car seat, on a porch, surrounded by feet of snow. She was wearing a shirt and pants and she was screaming. I could tell she was screaming because she was in pain. She was freezing. And she was looking right at me. Her eyes were begging me to help and I couldn’t get to her. And then I was awaken.
I was startled originally. And then I tried to tell my husband about it and it was hard just to get the words out. I cried as I told him and then I thought I was ok. An emotional release helps me process and move forward usually. As I started my drive in I realized I wasn’t ok. All my mind could do was replay that image. That screaming. It was horrible. I cried. I tried singing. I cried some more. Tried to distract my mind in other ways to no avail. In between the replays my mind raced and played tricks on me. I questioned it all. Why did she finally appear in my dreams? What did it mean? Why couldn’t I help? I felt like a horrible mom. I immediately felt like I had put her out there. Why? There’s no way in hell I would’ve done that! What did it all mean? I couldn’t stop crying.
Once my shirt, arms, whatever had taken their fair share of tears and couldn’t hold anymore I searched for napkins, tissue, something. What did I find? The package of tissues that I used at Parker’s funeral. All I did was cry harder. Damn triggers. I was so distraught I couldn’t even do all that was on my itinerary today – I can only remember a handful (or less) of other times that I let my grief control what needed to be done for the day.
I had a few people mention that maybe it was her way of wiping my tears for me. I think that’s a good way to see it. I do know I won’t be begging for dreams any longer. I’ll keep an out for signs from her instead – like the first Cardinal at the new house coming right up to the window on Easter as we were all eating. She was with us.
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.
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. 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.
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.
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:
There’s something that all of my fellow special needs parents should be used to…..death. But, trust me, none of us are. I mean, how can anyone be used to death? Does anyone truly become desensitized to the loss of a life? The loss of a child’s life? I know it’s something I will never grow accustomed to.
There’s nothing like the utter despair that fills your heart when you open social media only to see that another child passed away the night before. A child that you ‘followed’. A child you rooted for. A child whose story brought you joyous and sad tears. A child whose pictures brought a smile to your face. A child and family that you ‘knew’, felt connected to – even if never meeting in person.
When Parker was alive these deaths hit like a ton of bricks. Most of us in the ‘cephaly’ community have been told our children have a limited life expectancy – it differs with each child and each situation. So when you read of another child becoming an angel you can’t help but cry – for the loss, the heartache of the family, for your own child. After all, you’ve been told this is your future too, right? Even if it’s not spoken, as a parent who has been told your child will die before you, you grieve. You grieve from that day forward. Not always actively. But the moment another angel earns their wings, you grieve again with the fact that your’s might be next. You can only imagine what the parents are feeling – even though deep inside you’ve tried to prepare yourself. You send condolences and the words flow so easily. You say things you’ve always thought were the ‘best’ things to say. And you mourn the loss and celebrate the child’s life along side the rest of the community.
Parker’s decline was fast, but noticeable, so she was put on hospice and I had the ability to ‘prepare’ myself for what our future held. I say ‘prepare’, because there’s no way to ever prepare yourself to say goodbye to your child for the very last time. It’s truly a gift and a curse at the same time to know your child is dying. I got the luxury of never leaving her side, holding her at all times, singing to her, memorizing every inch of her, take our first (and last) set of family pictures, and overall cherishing every moment I had with her. (Note: not that I didn’t before this, things are just different in an ‘end of life’ situation.) The curse is that it truly is this awful countdown. It’s a ‘hold your breathe every time she holds her’s’ situation. It’s torture to watch your child’s body breakdown – their organs failing. And even harder to have your child unresponsive and just hoping and praying they’re still hearing your words of comfort and peace. And through this all I tried to ‘prepare’ my heart for the inevitable. I even knew the morning of October 20th that it was going to be her last day – knew it deep in my soul. But at 7pm that day, when she took her final breath, there’s was nothing that could have ‘prepared’ my heart for the pain it was to feel. A pain, that still has the ability to physically hurt my chest and make it so hard to breath. An emptiness your soul automatically knows and despises. Nothing can ‘prepare’ you for the loss of your own child.
So these deaths, after losing my own child, still hit me like a ton of bricks – just now I don’t feel like I’m being slapped with reality, I feel like another brick is being laid down upon me, in the pile I’ve accumulated. Now I cry for the reality that the family is facing. Now I cry because Parker gained another friend in Heaven. Because my heart instantly relates to and relives the overwhelming loss the parents are feeling. And now I really, really struggle with the words to say. I’ve come to the conclusion, it’s because there aren’t any. Because no words made me ‘feel better’ after Parker died, there were only the words that stung. And the words that did manage to help weren’t words at all, but hugs, embraces, and tears. If only I could actually send a hug through social media, I would – attached to the simple phrase, ‘I’m sorry’.
These deaths also spark a new feeling in me since losing my own child – apprehension. For the journey the parents are about to face. The journey of grief. The realization that life does have to go on and how they’re going to make that happen. The comforting of the angel’s siblings, if there are any. The ability to grieve in their own healthy way. And the fact that there’s no time limit on their grief. I fear for their hearts the first time a stranger asks them how many children they have and the endless times the words will be lacking when trying to delicately explain their situation. For there is a fine line, a balancing act for bereaved parents. We truly live in two different worlds. One is the past – in our memories, the lives we once had, in all that we had, all that we lost, and all that we thought our futures were to be. The other is now, the present – truly enjoying life the way our child would want us to, keeping our child’s memory alive, and rejoicing in the fact that we will see our children again (where ever we feel that may be).
Every special needs child changes the world – I truly feel this way. They have the ability to live and love with a pure, nonjudgmental heart. To see only the good in every person and situation. To be happy and bright no matter the challenges they face each day. To be the student and the teacher every day.
Below are some children who left us too soon. They continue to change the hearts of others, to change the world even as angels. Some joined the angels before Parker and some after, but all of them (and their parents) hold a special place in my heart.
So there are many faces of grief. They come, they go, come again. A lot of times they’re hard to differentiate between. And sometimes they even gang up on you and hit you all at once. I stopped trying to truly figure it out a long time ago. I just ride the ride – actually I just hold on for dear life – I found it to be the ‘healthiest’ way for me to deal. But there’s a face, emotion, feeling that I don’t like, that I don’t like to spend any time on…..anger.
It’s super easy to be pissed after your child has passed. And even easier to stay pissed. True, it’s not fair that I lost my child, but it’s not fair for any parent to go through that. True, I feel I should’ve had more time, but who doesn’t want more time with someone they love?
There are a lot of things I could be angry with, but I try not to be. I could be mad at her diagnosis, her prognosis. I could be angry that she went downhill so fast and our time was so limited. I could get jealous over my special needs friends who still hug their children each night. I could be upset that I lost my only biological child and I’ll never hear a sweet voice call me mommy. I could hate every special date, like holidays, that will always remind just what I’m missing in my life. I could be mad that I’ll never see my child’s face glow with happiness when going to prom, walking down the aisle, or have a child of her own.
Here’s the deal, I can’t say these things haven’t effected me – ever – or still don’t. I’ve cried over these things at some point. I miss my daughter and the memories we could still be creating daily. But I do refuse to let things like this anger me. To make me mad. To make all of my energy completely negative. Because at the end of the day I’m blessed. I would never know this life and be the person I am without my daughter. I would never have a special needs community that I belong to and cherish. I would never know the need that existed and start (The Parker Lee Project. I would never know that my child didn’t need to speak to tell me she loved me. I would never know the meaning of true, pure, unconditional love. I would never realize to make every special day and holiday the most memorable because you never know when it’s the last. And I would never know just how deep my faith runs. I know we’ll be together again, some day, and my love for her keeps me going happily until then.
As a good friend said tonight that rings so true (in an unrelated post), ‘I don’t think we ever really know how much we believe in the power of prayer until it’s the only thing we have left.’ Well said, Mindy Owen.
Tonight you made a comment that isolated a large group of people, whether you realize it or not. We are also very much alike, whether you realize it or not. Our children even share the same diagnosis, only mine is now an angel.
Tonight, in a ‘support’ group a post was made to say (me paraphrasing) ‘trust your gut, YOU are the parent, discuss with your doctors, etc’. The post also stated the parent might be sensitive to the recent discussions in the group due to his angel’s birthday being earlier this month and that the holidays are hard on bereaved parents. But your reaction/comment only further isolated bereaved parents like myself. To say (once again paraphrasing), maybe there should be a group for angel parents because the rest of you haven’t experienced that yet, hurt. That you live in hope and only for today, hurt. Do you not think us bereaved parents did or still do?
It’s already extremely hard to even still participate, even if infrequently, in these ‘support groups’. But we still do it because we have experience and have witnessed the unimaginable. We still want to share that knowledge and expertise. We still want to keep up with children (so much like our own). We still want to hope, pray for, and cherish these children (so much like our own). I can say from my experience that these ‘groups’ can be pure torture at times and that’s why so many bereaved parents choose to separate completely from them and things like them (and I sometimes wonder why I haven’t) But to some of us, it’s still ‘home’. It’s also extremely difficult to speak of our children’s finally days/weeks/months, whatever it may be. But some of us choose to be open and honest with other parents in similar situations.
To be a bereaved parent is very isolating, because, truly, not many people understand and we know that. Being part of a ‘support’ group is suppose to feel safe. We’re all suppose to do exactly what the title says….support….each other….including ones who have been or are in a situation ‘we haven’t been through yet’. We do have a group for angel parents but we shouldn’t be made to feel like we should be exiled to that group only.
You were right saying we all live on borrowed time. But some, like our children with shortened life spans, are not guaranteed as much time as we would like. You’re right in saying people diagnosed with terminal cancer don’t just lay down and die, as they shouldn’t. But no one said that our children or us, as their parents, should either. I know I never once felt that way. I lived every day like it was Parker’s last, but planned for her future like she’d live to be 100. Just like I’m sure you do for your child. But should I not speak of any day being her last, because you don’t like to think of it? I didn’t like thinking of it either, but it was also my reality. I just never dwelled on it.
You live in hope. So did I. Every second of every day that Parker was alive. I still live in hope. Hope that she’s dancing, singing, and playing. Hope that she’s watching over me. Hope that she’s proud. Hope that the day we meet again will consist of her jumping into my arms and speaking the words, I love you mom. Hope is essential in the life of a special needs parent and a bereaved parent. But just because I speak of life as a bereaved parent doesn’t mean hope doesn’t exist.
Please remember that next time you post/comment in any ‘support group’ that we’re there to support each other. We all have different experiences, different outcomes, and a wide arrange of opinions – and they’re just those, opinions – that’s what makes these forums so invaluable.