Child loss is a never ending and debilitating journey. The days are long, the nights are longer. When the sun starts to set, memories seep into our veins and we wait for the world to fall asleep so we can fall apart. Sleep evades us and tears soak our pillow. We bow our weary heads knowing we are lost and scared that we will never find our way again. If only others could see into the window of our soul, they would see how much we’re drowning in our grief and constantly struggling to surface for air. Bereaved parents are swans, we appear composed and graceful above water all the while paddling like hell underneath. Guilt and regret confront us every chance they get. There’s always some painful reminder lurking around every corner. Gone are the days when we didn’t have to hide in the dark shadows of grief and pain of child loss. Oftentimes, after the death of a child the world looks and feels as if it’s been turned inside out. We fear the quiet and will do anything to drown the silence because it screams out what’s missing. We are physically exhausted, mentally drained and emotionally depleted, but we can’t escape it enough to fall asleep. The storm rages on between our mind and heart. Our mind knows the truth, but our heart refuses to accept it. When we express our sadness we don’t want pity, we want understanding, because we are the victims of a horrific tragedy. Our children lost their breath of life. Their permanent absence causes deep suffering for us, but we have no other option but to factor it into our daily lives. Please be patient with us. We are fragile and weak. We are lost at sea and long to calm the waters. Hold our hand and help us swim to shore.
With my son’s one year mark closing in, I am reminded of exactly how short lived our time here on earth really is. I can’t believe a whole year has almost come and gone, That’s 365 grief-stricken days since my Husband and I lay in his hospital bed with my head on his rattling chest as he struggled to breathe and we said our final goodbyes. Holding his little hands in mine and wiping the tears steadily falling from my eyes away with his tiny fingers. I had so much I wanted to say to him, but so little time to say it. I just kept telling him over and over again how sorry I was, how much I love him, and how we would be together again soon.
Most days I feel as though the world is moving on without me. No matter how much time passes, It’s like I’m still in room 548 on the 5th floor of the Hasbro Children’s Hospital, the clock on the wall still reads 5:45am and I can’t seem to pick myself up off that cold hard floor and put my life back together. It’s as if the world has forgotten about me, it has left me behind. It seems the more things change, the more they stay the same. I just wish I could tell my heart what my mind already knows. But sometimes, I still can’t believe he’s really gone.
I never pictured my life this way. These kind of things only happen in the movies or to other people. Not to me. Not to my family. Not to my blonde haired, blue eyed, freckled nosed little boy. I’m completely frozen in time. Honestly, I feel like I haven’t taken a whole breath since he took his last one.
My calendars aren’t marked by birthdays and anniversaries anymore. Those happy days are long gone. I have 2 days out of a whole year that mean anything at all to me. August 31st, a day that use to be a celebration, the day Rylan was born. Now the only significance it holds is a reminder that he will be 8 forever. He will never make another wish and blow out his candles. There will be no more parties or presents. It’s Just a sad day to sit along side his grave and grieve for what could have been. Then there’s September 24th, a day that needs no calendar to mark it’s place. It’s forever embedded in my mind. The day my soul was ripped from my body and the life was sucked out of me. The day my family fell apart and a day that I will relive for the remainder of my entirety here on this earth. The day Rylan died.
It’s hard for me to remember what my life was like before Rylan came along. I’m sure it was just as empty as it is now that he’s gone. I can’t recall a single memory without him in it.
See, when you lose a child, those 2 days are what a 12 month calendar consist of. We just survive every one in between. I mean, how can you move forward when so much of you is missing?
Unfortunately, people are completely oblivious to the profound grief that follows the death of a child. They could never possibly understand nor comprehend such a loss. Only someone who has endured the same fate. Find those people because rest assured, they’re looking for you too.
Regardless of our religious beliefs, we as humans question the “afterlife”. We all wonder at some point if there truly is some other dimension out there that awaits our arrival, a beautiful place where the souls of our children are waiting for us and when we expire here, will we really spend eternity with them there? Especially a grieving parent. We cling to the hope that life after death does in fact exist. Don’t feel ashamed for doing so. God understands.
Sadly, contrary to what we’ve been made to believe, time does not heal all wounds. At least not this one.
It’s okay to shut the world out and fall apart. Some days we are just barely hanging on and it takes every ounce of strength we have to put one foot in front of the other. So, be proud of yourself at the end of every day. Even if you did nothing else. You managed to survive another day without your child and that’s everything.
When you lose a child, it’s difficult to agree with others that their death was part of some grand plan. Just be mindful to the fact that they mean well and honestly, they just don’t know what to say.
Both, guilt and regret are a normal part of the grieving process, but we tend to live in our heads and sometimes allow the “could’ve, should’ve, would’ve” to entirely consume us. Just be careful, It can swallow you whole.
All those people who are constantly telling you how incredibly strong you are and how they can’t even begin to imagine what you must be going through. Believe them, they’re not lying. You are the warrior of all warriors! and let’s be honest, they really don’t know how you do it. I mean, “WE” don’t even know how we do it.
Everyone has their own cross to bear. This is ours and sadly, it is a heavy one to carry.
Your grief journey is like your finger print. It’s different, it’s unique and it’s your very own. You should never apologize for the way you choose to weather the storm. Grief is one of those things in life that you can’t go over it, under it or around it. You must go through it and come out on the other side. If you try to run from it, you will only die tired.
Stop blaming yourself for their death. There’s absolutely nothing you could have done differently to save your child’s life. Instead, try spending less time apologizing to them because you feel like a failure and more time focusing on ways to save yourself from feeling this way.
and last but not least, moving forward with your life doesn’t mean you’re leaving your child behind. It simply means that although their physical body has perished, you understand that their soul never dies. They will always live within you.
I’ve learned so many things since Rylan’s death; I’ve come to realize the importance of being a good mother, being a mother my daughter will remember. I have definitely fallen short of spending “quality” time with her, especially before Rylan’s passing and I find it even harder to do so now. Sometimes I look up from what I’m doing and watch her. I am so amazed and intrigued with how absolutely beautiful she really is. She is changing so much everyday, she is so incredibly smart and I know deep down, it’s no thanks to me. I wasn’t here. I didn’t teach her how to sit up, crawl, walk or grow into the silly little girl that she is. She has been moved around a ridiculous amount of times in her short life, she’s seen so many new faces, tons of non familiar places but, she always adjusted. I assume she just knew that was how things had to be.. I’m sad because unfortunately, I never thought of her. She was never the focus. She was never taken into consideration. I hate it. I regret it but, I can’t change it. Cancer was what my life revolved around, it was relentless, it demanded all my attention and it got my undivided. my daughter just happened to be caught in the middle of all the chaos that came along with being a sibling to a child with cancer.
we came to visit my family here in SC a few days before Christmas. I’m not really sure what I was looking to accomplish by doing so. I guess I wanted to run, get as far from Rhode Island as I could, even if it meant leaving Rylan laying in that cemetery to come a thousand miles in hopes of hiding away from the world. But I found that life doesn’t stop for me, for My grief, I must gather myself, piece together what’s left of my family and do what we have to do to come out on the other side with our sanity intact.
I know my daughter needs me, and it took me quite some time to realize I need her. I need her to remind me of why there is always something good in every day. I need her to know that I may not have always been the best mom, but I was a loving mom. I was a giving mom. I’m her mom, I’m Rylan’s mom and I’m the mom that learned that I never want to look up from what I’m doing one day and not be amazed and intrigued at how beautiful she is because she is gone.. she is all grown up and I unable to recall where all the years went.
Time Hop is an app that is available for download right on your phone, it allows you to see what photos you took, along with all your posts on facebook and instagram on this exact day a year ago, 2 years ago, 3 years ago and so on and so forth. although I do enjoy seeing what I posted over the years, sometimes I find it to be a double edge sword. It’s just as sad as it is happy to see. It reminds me of the last heart breaking year my family has endured. It also reminds me what cancer has stole from my family. Rylan did alot of suffering in those 9 months and 8 days while he battled the goliath of diseases.. Childhood Cancer. It also reminds me that I could not save him, it was a death sentence from the very beginning and Time Hop is always there to make sure I know that. Thank you Time Hop.
I’ve spoken with many mother’s who have very recently lost their child to the awful disease we call cancer.. they always say they find themselves in a very dark place and some days they feel like there’s no way out.. I always tell them I was right where you are not long ago and to just hang in there, it will let up soon. Grief is a strange thing and I have found that you just have to go through it and come out on the other side. It never gets better, the best way to describe it is.. It becomes different. I still live on a prayer daily. I wake up in the morning some days and say to myself “there are 24 hours in a day, if I can sleep 12 of those, I only have to survive through the other 12 without losing my mind.” It’s no easy task. every single day is a struggle. It still hurts just as bad today as it did the moment it happened. Time changes NOTHING. He is the first thing I think of when I wake up and he is the last thing I think of before I fall asleep. Missing him is easy, it’s the knowing I will NEVER see him again that’s hard, at least not physically anyway. 😭 I’m not where I wanna be when it comes to dealing with Rylan’s death but, I am making progress. So I say to all the moms out there who just lost their child and feel like your world has completely shattered around you, let the pieces fall where they may and leave them be until you feel that you can piece it back together, although it will never be the same.. It is a constant reminder that you have come so far.. don’t give up now. 💜
The 24th was not only our first Christmas eve without Rylan but, it also marked 3 months since his death. We came back home to South Carolina to spend the holidays. I didn’t even put our Christmas tree up until 3 days before Christmas. If it weren’t for my daughter I probably would have slept the day away. After spending the last 7 years watching Rylan get so excited in the days leading up to Christmas, and the look on his face as he opened his gifts, it was unbearable to think there would be an empty spot under the tree where his presents use to be. I managed to make it through Jordyn unwrapping her gifts and not shedding a tear, hell, I wasn’t even happy to watch her and I feel so guilty about that. I haven’t been happy since he died. What is there to be happy about? I tried to tell myself that he was there in spirit or that God somehow opened the heavens to allow him to watch.. But, I try to tell myself alot of things.. It never helps me though. My husband is just here. He always looks so lost. I try to help him but, how do I help someone when I’m unable to help myself. Rylan consumes my every thought, I think of nothing else.. I spend my days thinking about what could have been, what should have been and what life is like now without him. I aimlessly walk around trying to figure out what to do with myself. The New Year is around the corner. I am not happy to see 2015 go, although it was the most painful and horrible year of my life, it is also the year I last saw my son alive.
My little Rylan graced the world with his presence on August 31st of 2007 at 11:40am by an emergency c-section, weighing in at only 2 pounds and 11 ounces, after I had spent exactly 2 weeks to the day in the Hospital with severe Pre Eclampsia. He was a little over 8 weeks early. He spent the next 2 months in the Neonatal Intensive Care Unit. When I think of Rylan’s birth, I always think of his death. everything was almost the exact same. The very first time I held him, It was in a Hospital room, he was only in a diaper, wrapped in a blanket I had bought just for him, listening to beeping machines, surrounded by doctors, nurses and other sick children fighting to live another day and each night I would kiss him goodbye until I would see him again and when he died, the very last time I held him, he was in a Hospital room, he was only in a diaper, wrapped in a blanket I had bought just for him, listening to beeping machines, surrounded by doctors and nurses and other sick children fighting to live another day and I gave him a final kiss goodbye until I would see him again, the only difference was, one was the beginning and one was the end and I knew after Rylan’s death I had nothing to look forward too, that was it. There would be no more tomorrows together.. not physically anyway. Night time is always the worst for me, sometimes I go outside, look at the night sky and wonder where he is. I carry so much guilt inside about Rylan’s death. I made promises that I couldn’t keep. I always told Rylan one day he would get better, he would walk again, he would go back to school and make new friends, I always told him just to hang on a little longer, there were better days ahead but, I lied. There never were better days ahead, he never walked again, he never got to return to school or make new friends. I lied because I simply didn’t have the heart to tell him the truth, who was I to even say what the truth was.. I’m not god, I had always hoped he would get better, even though deep down I knew It wasn’t likely and I didn’t ever want him to be scared or give up and ruin what time we had left together. I never told him about heaven or what would happen if he never got better. I didn’t want him to worry about things like us being apart so, I lied. I try to tell myself I did what any mother would do.. but, it never changes anything. I just like to think god explained those things to him and that when my time here on earth is over, we will be together again forever.
My daughter is growing up so fast and learning so many new things, I’m just as sad as I am happy, because Rylans not here to see it all. He loved her so much. No one could make him smile like she could, and Rylan didn’t smile that often so, it was so amazing to watch them together but, cancer stole that too. She was robbed of a big brother, a sibling is a special thing, and it is just another thing this disease took away from her, from him, from us. My babies are my heart and soul, they are the reason I breathe but, it’s hard to wake up and face each day knowing one is missing.. god only lends us our children, and they say you don’t know what you have until it’s gone but, the truth is.. you knew what you had, you just never thought you would lose it.. even though it hurts so badly that he’s gone, I do thank god every single day for the 8 years we had together, I’m proud of the young man I raised, and even though it was short and I will never feel like it was enough, I’m thankful for all the things he taught me, he taught me how to be brave, how to be strong and that tomorrow is not owed to us, it’s a gift, and above all, Rylan showed me how to live and he showed me how to die and for that alone, I am eternally grateful.
So, the other day I was scrolling through Facebook and I came across a REALLY cute idea for Rylan’s grave, a friend back home (long story for another time) in South Carolina made a “Letter” Jar for her friend who passed away a few years back. It’s a jar, decorated and is set on his grave for anyone who would like to leave a “Letter” to him. I thought it was such an amazing idea! Tons of our family members have been wanting to place “something” sentimental on Rylan’s grave but, we have an exceptionally huge family and with his headstone being small, I didn’t want to over crowd it. I loved the idea so, I immediately went out and bought the biggest mason jar I could find, once I got home, as hard as it was, I went into his room where most of his things are in boxes, because it was everything he had accumulated from his many long stays in the hospital, such as all of his Birthday gifts and tons and tons of toys that family and friends bought for him to try and cheer him up or make him happy over those 9 months, everything was boxed up on the morning he passed and my husband just piled it all up in the corner of his room. We haven’t touched a single thing since then, but I knew there were lots of his favorite Avengers stickers somewhere amongst all of it. I didn’t want to go through his things but, I really wanted to do this for him, for us, for our entire family. I picked up the first Avengers book that looked like it may have stickers in it and low and behold, I needed to look no further! (Thank you Rylan!) he knew how hard this would be on me. I opened it and there they were! It’s been awhile since I could look at ANYTHING avengers and not immediately look away. It’s too painful. That was his thing. The Avengers. His favorite superhero is the Hulk and always has been since as far back as I can remember. I went back downstairs and placed each one so perfectly on his Jar. It was so cute! I tied his favorite color (orange) ribbon around the top and waalaa. I loved it. I wanted to be the first to write him a letter, I kept it short and sweet, then I wrote one for my daughter, my mom was there so she too, wrote him a little letter, before I closed the Jar I placed a picture of him and I in it, one that was used on a college for his wake and funeral. I closed the Jar and later took it and placed it on his grave. I let everyone who loved him know about it. I am sure the Jar will fill up fast, when it does, I will take what’s in there and place it in the box that I keep very sentimental things of his in. I’m sure over time the weather will pretty much destroy the Jar but, I will continue to make new ones. I will do this for him for as long as I live. This will help me in more ways than one! There are so many times I find myself wishing I could just tell him something and now, I can.
Yesterday was Thanksgiving. Our 1st Thanksgiving without Rylan. I cried a few times before I finally gathered myself and we headed to my sister in-laws for “Thanksgiving Dinner”. It’s suppose to be a day of giving Thanks for everything you’ve been blessed with, I didn’t feel very thankful. I didn’t feel blessed. Last year on Thanksgiving wasn’t all that I had hoped for because Rylan had already been in the hospital and had his skull drilled in, a drain put in to relieve pressure and to drain backed up spinal fluid and placed on a high dosage of steroids to keep the swelling on his brain down but, still no answers as to what was wrong, we didn’t know what monster was lurking in the shadows and it would take another 2 months before it would finally reveal itself, but it was okay because Rylan was here, we took pictures together and we we’re happy. My daughter was a little shy of 4 months old, and Rylan was so excited to have what he had longed for, for so many years, a baby sister, a sibling. He was an only child for so long that he was beside himself with this new baby girl that he would grow up with. That still gets to me, he waited most of his life for a sibling and it became just another thing cancer stole from him. Right after Jordyn was born in the beginning of August was when his headaches began so, he always felt so bad and in pain that he wasn’t able to do all the things kids his age do when they have a new baby at home, such as feeding her, helping me get her dressed etc. Sadly, cancer stole those things too. Thanksgiving will never be a day I give thanks anymore, to me it’s just another reminder that Rylan is gone and life will never be the same. Christmas is right around the corner, and if it wasn’t for my daughter and not wanting to rob her of a happy childhood, I wouldn’t even celebrate. Christmas just isn’t “Christmas” anymore, not without my little Rylan, my heart, my soul, my everything.