And so it begins

Life shattering heart break brought me here.  Its a strange thing…to start, something, anything.  I want to just give a little introduction to our story, our journey that we’ve been on.

Seventeen weeks ago my world changed. We were given the life changing news that our beautiful baby had a serious heart condition.  A Congential Heart Defect, or CHD as i’ve so unfondly come to know it.  That day is a story in itself.  And i’ll save it for another day…it’s a hard one, and I just dont have the energy tonight.  Fifteen weeks ago I packed a single suitcase and left my home, my husband and my two beautiful boys to move 5 hours away. I was expected to be there until the birth, and then for a few weeks after. My then not quite four year old and not quite two year old were completely rattled.  They simply didnt understand why Mama was suddenly gone. All I heard most nights on the phone were tears, from my end as well as theirs. But that too is for another day.  I moved to be close to Mt. Sinai Hospital in Toronto, ont. to wait for the birth of my baby boy. He would need to be transported to Sick Kids directly after birth.

Killian Mather Mckessock Waddell was born at 9:38 pm on September 4, 2018.  He looked perfect.  He looked healthy.  He wasn’t.  He had a severely broken heart.  I didn’t think that my soul could handle any more that day.  Two days later I learned that I didn’t have a choice.  It was discoved that Killian’s heart was far more damaged than initially thought.  He would need to be listed for a heart transplant.  We were told to expect to be inpatient at Sick Kids for a very long time, a year or more not being unheard of.

So we adapted, again.  We worked out travel, child care, kids, Killian, life. And we waited for that call.  The big one. A heart.  It was hard. It was really hard, and really scary. But we found our groove. Killian was a beautiful, funny, calm baby.  Just looking at him you would never once guess that his body was betraying him.

The weekend of October 13, my husband Dean came down, by himself, so we could spend a weekend together. We enjoyed each others company, went shopping for all the tools and equipment that I needed for Killian. So we could give him the best possible upbringing we could. We spent time just sitting with him, together, the first time we’d been able to do that since his first week of life.

At 11:10am on October 15, Dean text me from his room.  “You should get here, now”. I was putting some things in our car.  I ran. I ran into a room full of Doctors and Nurses. They weren’t panicked, but they were working.  Trying to even his heart out.  By 11:25 they were doing chest compressions on him while we held his hand. At 11:40 they unhooked him from all his IV’s and probes, and put him in my arms. He died at 11:45. A day shy of six weeks old.

This blog is for him, about him, about me, about grief, about hope, about the truth of this horrible hand of cards that no one wants. I have so much to say. I have so much to remember, and I hope you can remember him with me.

When Children Grieve

Experiencing grief as a child must be indescribeable.  For most of the kids who experience grief first hand, the amount of confusion, fear and anxiety must be very difficult to process.  We all know that kids are constantly learning, that they thrive on routine and predictablility. When death and grief invade a family, these “normals” change. They fall by the wayside as the family adapts to this new life they’ve been handed. The emotions that come with death and grief are very different that the emotions that we experience on a daily basis, probably even more so for children. Watching the people -YOUR people – who are your constants and your stabilizers cry, crumble and change, without really understanding the why and how must be so difficult.

When there’s a death within a family structure, we’re given resources, information and support from trained professionals. As a parent or caregiver that is responsible for the kids in the family, YOU become that person. You need to provide the resources, the information and all of the support.  A child can’t tell you when they are unable to process the heaviness, when they need a higher level of support. It’s like walking tightrope. Trying to find the balance between maintaining a semblance of normalcy for your kids, and addressing the elephant in the room…the death of a family member. In our case a little brother.

I think that knowing what is age appropriate in these cases is very important. Understanding what to expect, and how to react to these situations, is vital. That being said, knowing your children is the most valuable piece of information in this house of cards.

My youngest, Malik, is 2 years old. When Killian passed, he didn’t understand what was going on. Even now, almost 3 months later, he doesn’t ask questions about Killian. He knows who he is, he mentions him by name when we look at pictures, but there’s no sadness or questions associated with that. But he has severe anxiety since all of this happened. His ability to control his emotions is limited. Take the typical toddler, and add some severe anxiety. He clings to me like his life depends on it. To him, his mom was suddenly gone for 9 weeks, and now she’s home. He’s not letting me out of his sight without a fight. Some days his hightened emotions and iron arms around my neck can be beyond tiring and draining. But I always stop myself and try to remember that his entire world was shifted not so long ago. Everything he knew changed. And I try to recognize that he can sense my emotional state. He is tuned to the changes in me. So my job right now is to support him. To do everything in my power to give him his security back.

My oldest, Ryker, who’s 4, is a whole different ball game. He’s a smart little guy, and he’s asked lots of great questions. We’ve been very conscious to not exclude him from the conversations and talks we’ve had about Killian. Through keeping him involved in this process, we’ve been able to keep the communication open, and i’m so thankful for that. I think that we often try to shield kids from the hard things, the sad things, the tough times. But maybe if we kept the dialog open, by describing our emotions, and being honest about what we’re feeling – sadness, fear, anxiety to name a few – our kids would be more willing to talk about these tough things with us as well.

At bedtime, Ryker and I always lay in bed and chat about our day. One night I could tell he was feeling off, yucky. Eventually he told me that he was scared to go to the Doctor. He knew that Killian had lived in the hospital, and he didn’t want to die like baby Killian. He thought that the Doctor’s had made Killian die. I explained to him that the Doctor’s had tried to fix Killian’s heart, but it was too sick. I explained that the kind of sick that Killian was, wasn’t something that he could catch, it wasn’t the same as a cold that made him sneeze, or when his belly was sick. The next day, I made a Doctor’s appointment for him. We went together and it was a comforting experience for him. Thankfully by really talking to him about his fears, and by addressing what had happened and what it all meant, we were able to tackle something that was giving him anxiety.

As the support systems for kids dealing with grief, I think that we need to reassess our reactions and expectations for them. Our instinct is to send the kids to another room when things get emotional and raw.  We don’t always ask them if they have any questions. Ryker has asked a lot of philosophical questions that i’ve had to tell him I simply don’t know the answer to, because i’m still learning too. If his question is something that I don’t know the answer to, I am honest with him, but I also tell him that I will try and find him an answer.  Children are often scolded in extemely emotional situations for their bluntness. Ryker recently told a lady at Tim Hortons that “Killian is dead and he’s not coming back”. Try to recognize that their bluntness isn’t meant to cause pain or sadness, they’re simply stating the facts of the things that are surrounding them. A few weeks ago, a friend stopped by. Ryker was playing with his playmobile. The game he was playing had a lot of death in it. His “guys” were dying, and his other “guys” were crying. My friend asked me if that was upsetting to me, and if I allowed him to play that. My answer? Of course I do. Children learn through play. They process emotions and lessons by playing them out. It actually gives me some peace knowing that he is processing all of this heaviness through healthy avenues.

I think that by allowing our children to be part of our grieving process, we will help them learn how to accepts and work with their own grief. Because they do grieve. Differently than us, but that’s how this grief thing works. We need to allow them to be open and honest with their fears and their emotions, and I think we can give them permission to do that safely, by sharing ours. Obviously there needs to be boundaries with our sharing, that’s where the literature on age appropriate dialog needs to be referenced. But we need to stop sending our children away to shield them from pain. Because they are so sensitive to us, their people, and to the air around us. We need to show their process the same respect that we want in these situations. And we need to give them the tools they need to navigate their new normal too.

We talk so openly about Killian with the boys. Our bedtime routine is my favorite. Every night I tell Ryker that I love him all the way to the moon, and he tell me that he loves me all the way to Heaven, where baby Killian is. My heart swells a lot and breaks a little bit everytime he says it.

Supporting someone through grief

Dealing with the loss of a child is very tricky. It’s full of contradictions and mixed feelings. For the parent who has lost, and for the friends and family of said parent. Learning to live with grief is hard. Very hard. You think you have something figured out, and then you get blindsighted. But I also think that learning to live with and support someone in grief is hard as well. I don’t think that because you, the friend, family member, co-worker, spouse, neighbors, and so on and so on, haven’t suffered the same loss, you’re not learning and growing and trying to find a way to live with this as well. The name of this blog isn’t what it is because I think that you are all a village that centers around me, the griever. It’s our village, all the people who were impacted by Killian’s life. I’m sure that almost all of you were somehow effected by his life and death. So the grieving process is something everyone goes through. You now have to learn how to live with someone who is living with grief. We, the parent, have experienced a loss that has profoundly changed who we are as people. Learning to support that is not something can be expected to just know how to do.

I have a lot of friends who have young children, new babies, or are currently pregnant. I can imagine that it’s strange waters for them to navigate. They don’t want to seem ungrateful for their healthy babes. They don’t want to be too excited about their baby’s milestones or talk too much about them. They don’t want to “complain” about their kids colds or “minor” health worries. It’s all done in love. No one wants to rub salt into our wounds. Unfortunately it can also cause a disconnect from our friends. When our closest people are hesitant to share the big things in their lives out of fear of hurting us, it can sometimes do the opposite. Through a want to save us added pain, we sometimes end up feeling alienation.

I can tell you through my personal experience. That, yes, sometimes seeing babies close to the age Killian should be at can tug on my heart. It is painful. But I want to see those babies even with that pain sitting with me. I want to experience the joys and frustrations with you, my friend. Just because I was dealt a nasty hand, doesn’t diminish the joy I feel for you. I’m so so glad that your kids are here. That you have to deal with teething and sleep regressions and breast or bottle frustrations. I wish that I was dealing with those issues, with every fiber of my being. But i’m not. I can’t lie, sometimes when I hear anything but the joys of parenting, I feel a small twinge of irritation. But I fully recongnize that those feelings are stemmed from sadness and jealousy. I put them to rest, I don’t allow them to stay.  To expect people to never complain and have frustrations with motherhood is completely ludicrous. I remember it all of those feelings well. Although I crave it, I don’t want you to shield me from it. Like I said, the mixture of emotions throughout this grieving journey are on a huge pendulum.

It’s ok to not know how to act around us. I think it’s understandable. Being unsure of what to say or how to act around someone who has suffered unimaginable loss is to be expected. My advise to you would be to simply ask. Ask your person what they are ok with hearing and what they aren’t. Like i’ve said so many times, everyone grieves differently. What to one person is too painful to hear, is healing to another. By asking, with kindness and tact, you can better learn how to support, and help yourself learn. I’ve talked so much about destigmatising grief and death. If we could encourage the narrative around this tricky and unpredictable part of life, the strength of our connections and support could balloon.

So to my friends, please don’t ever feel like you need to shield me from your lives. I know i’m a little disconnected right now. I think that’s part of this process as well. But I love seeing your pictures and hearing your stories. If you have a question about something baby related, don’t ever be afraid to ask me. Although I don’t have all my babies with me, i’ve had the gift of carrying 3 babies to term, having a natural birth, an induction a          c-secton, a VBAC. I’ve breast fed, bottle fed and exclusively pumped. I’ve dealt with all the hardest parts of parenting. And just because I had to experience the one thing that none of us can imagine, I’m still just a mom, trying to do the best I can for my beautiful babes.

Death and grief – Part of the human experience.

I’ve been strugglng to write these last few weeks. It’s been busy, yes. It’s been emotionally draining, more so than I expected. But that’s not why. I really do have so much to say. I write and write and write. I have a journal beside my bed that’s slowly but surely filling up. But I haven’t been sharing. If I type it out, it ends up deleted. I just haven’t been able to push that publish and share button.

It all seems so redundant. To continuously be talking about these things. Death, Grief. It’s dark and nasty and scary. They’re the things that hide under that horrible troll’s bridge, the one no one wants to tip tap and disturb.

Why bring people down? Why rehash the hardest moments of my life and the darkest memories and thoughts in my head? It’s not for pity, I don’t want that. I don’t want to drag others down, bring tears and sad thoughts. So why? Why remind people that this darkness is around? Shouldn’t we bring happiness and light? Lift people up?

Writing about Killian’s death won’t bring him back to me, as much as I wish it would. So shouldn’t I start to put this to bed? Start to move look ahead instead of behind?

Then I started to have some clarity. I’ve been talking to quite a few mothers who have lost their children. Some recently, some years ago. The commonalities between us all still surprises me sometimes. Not our views on what happens after death, or how we grieve, that’s all so very individual. But we all have faced grief head on. I think that death becomes less  intimidating when you’ve experienced it at it’s worst. We talk so frankly and openly about the process. Of death, of grief, about our loved ones who are not here with us anymore. Talking so openly about it tends to make a lot of people very uncomfortable and can suck the air out of converstion quickly.

I wish that death and grief could be destigmatised. It needs to be. We have to stop alienating grieving people because we’re scared of saying the wrong thing. We need to stop whispering about death in the corner. Avoiding the topic like the plague. It will come into all of our lives, at one point or another. We will all experience it in some capasity. It is a guarantee.

Grief is a very strange and confusing. It comes with so many emotions, it makes it difficult to explain. There’s so much sadness, that ones expected. But there’s love and guilt and enlightenment and knowledge. There’s fear and relief and even more guilt for having those feelings. Dealing with this grief, i’ve found strength in me that I never would have expected. Not in a million years. Just like you, I used to say that there was no way i’d survive the death of a child. But here I am. I’m standing. Maybe that’s because I have been so vocal in all of this. I chose to not hide away all this nastyness. To face it head on and share it, and use all the support and realness and openness to support myself. Standing tall is easier when you have lot’s of people standing around you. In a crowd it’s hard to fall down.

There’s such a spectrum of death. The expected and unexpected, the planned, the young and old. I can’t speak for most of those, but I wish that others would. I hope that we can open the conversation about death in all its uglyness and it’s beauty.

I already know Killian was here to make a difference, somehow. So maybe it’s through me. Maybe I can help change the narrative. Encourage and inspire people to ask those hard questions. To be honest and open about your fears and feelings. To feel grief is part of the human experience. To feel grief is to show love. I still get people apologizing for showing emotion when they see me. Apologizing for showing me you feel love and sadness. Why? Why do we feel shame when we show that part of our heart? Thoughts and prayers and condolences are wonderful. But I wish that we didn’t need to check the guidebook on how to respond to death. To be honest and transparent with your sadness and love for someone else can never be wrong. I believe that we all have kindness engrained in us, don’t be afraid of showing that.

So I hope, through my sweet boy, I can help change the fear and alienation around grief and death. That we can start to drop the mask and not just embrace, but bear hug those in the depths of it. Be our village. Be our crowd that helps us stay standing. Be our life line in those dark waters. If we build these villages with bricks, they’ll be strong enough to support me, and they’ll be ready to support you when the time comes.

 

famq

 

The darkest time

Everyone knows the cliches, the sayings, the inspirational quotes.  They all boil down to one thing, “you’re never given more than you can handle”. This rages me. It minimizes and simplifies the hardships we all go through. And boy, do we get some tough things thrown our way. This isn’t just from a grieving mothers position. Just because you haven’t lost a child, doesn’t mean that your struggles are less. I’m so glad that most of you won’t experience this one, but that doesn’t make your dark times less real.  Everyones struggles are different, and they are authentic and you have the right to fight through them without shame or fear of judgement.

When we found out that Killian had a Congenital Heart Defect, I felt like I was suffocating, I didn’t understand how it could happen to us. I cried every single day, hard. How could I have a baby and then have to live with the fact that I would possibly outlive him? I’m in the heart of the thing that scared me the most. And i’m still standing, with support, but i’m up. I’ve seen so many parents go through this journey, and everyone of them is still standing too, even when they feel like they can’t. You have strength inside you that you never knew was there. And when you need to, you will tap into that strength.

Before Killian was born, we all believed that he was going to be a candidate for 3 surgeries that would help bandage up his heart. I say bandage, because CDH is not fixable, its never healed. I was expecting to be at Sick Kids for anywhere between 2 and 4 weeks after the surgery. I was so upset. The thought of being away from my boys for that long was terrifying. How were we going to do it? How were we going to make it work?

Then, at my 28 week appointment, we found out that I would have to move to Toronto early, to be close to Mount Sinai for delivery. I was devastated. Tacking weeks onto my time away was heartbreaking. I was going to miss Ryker’s first day of school, miss getting him on the bus for the first time.  I was in Toronto for 3 extra weeks. I cried daily. We would facetime with the kids at night, and would all cry. It really was hard, and i’m still dealing with my boys anxiety over me being away for as long as I was.

Killian was born at 39 weeks. For the first few day’s I was a basketcase. The machines, the beeping, the alarms, the medical talk. It was intimidating and emotional and just plain scary. Three days after he was born, we found out that he wasn’t a candidate for the surgeries. There were more complexitites to his heart than we originally knew. So the transplant talk started. I was a total and complete mess. Not only did we now have to process the fact that our baby was in need of a heart transplant, but we were told that we should expect to be in Toronto for 12 months plus, waiting for the transplant, and then 3 months after that dealing with recovery. I was dumbfounded. There was no good answer. There was no question that we weren’t going to fight to get Killian on the transplant list. That simply wasn’t an option for us. But we had to decide if we were going to uproot our entire life, quit jobs and school and leave family, and move our family to Toronto, or be separated for that very long period of time. The decisions seemed impossible.

Unfortunately we never got to make that decision, it was made for us the day Killian died.  After more than 2 months separated, and 5 months of preparation, planning, fear, anxiety, sadness, hope…we packed our bags and came home. Without our baby. With stuffed animals, blankets and clothes, and a box with his ashes.

We made it through every step of this journey. Not easily and not gracefully. And that’s ok, there’s no shame in that. I’ve cried and yelled and screamed. I’ve taken anger out on the wrong people. I’ve broken things and said things that were untrue. But we’re getting through it. I’m holding on to everything and keeping my head above that water. Looking back, I could easily say how I was over reacting through the steps, that I had no idea how bad it was going to get. But I won’t do that. This entire journey has been difficult. I’ve had to feel things that I never thought I would. I’ve had to do and see things that I wouldn’t wish on my worst enemy. Every single step of this process is uniquely mine and I have the right to every tear, laugh, emotion and scar. I earned them.

I’m in the darkest time of my life, I hope to God that this is the darkest that i’ll ever see. I’m so lucky to have my kids, my husband, my family and my friends. They have given me the support that I need, when I need it. They haven’t questioned my feelings or told me that things could be worse. Because things can ALWAYS be worse, we all know that, but that doesn’t mean that your current worst isn’t justified.

You CAN get through these times, I promise you. But sometimes we need to get through them with help and support and with tears and anger and rage. By simply saying that you’ll get through it, because you are meant to, makes these deep and real feelings seem weak or unjustified. That’s not fair. And it’s not helpful. It’s not healthy. When you’re in the deepest, darkest moments of life, you just need someone to tell you that they’re there if you need them, and that you’re entitiled to every emotion you have.

For those of you who are struggling right now. And for the rest of you when your next challenge rears it’s ugly head.  I want you to know that you CAN get through this. Even when it feels like things couldn’t get worse, and just won’t get better, you CAN. You hold on to the things and the people and the memories that you need to. Cling onto them and hold on like your life depends on it. You’re in the craziest, scariest storm right now, the waves are crashing into you so often that you can hardly breath. But they will subside. They’ll calm. You’ll get through it. Just find a way to keep your head above the water. Don’t let anyone tell you that your raw feelings are unneccesary or unjustified. They are yours, and you have the right to them. Reach out to those life preservers you have around you, be it family, friends or the random (me) who will hold your hand if you need it. You can do this.

born

 

Soak it in – One day everything will change

The holidays are here. Christmas, Hanukka, Kwanzaa, Sinterclass. No matter what, or if, or how you celebrate, the holidays can be tricky. I mean, it’s the most wonderful time of the year, but it can also remind us of the important people who we don’t have with us. They tend to remind us of the past. I was prepared for the holidays to be very hard, losing Killian just a few months ago. My babe never celebrated christmas. He’ll never sit on Santa’s knee, open presents with his brothers and cousins, go sliding down the driveway with our family.  That’s a hard thing to know. It can eat at me if I let it. This Christmas Killian is a memory, he’s a decoration in the tree, he’s the Christmas gifts that we brought to Sick Kids, he’s the stuffy Ryker holds in our Santa picture. I miss him. I miss everything about him. I wish, more than anything that I could have him in my arms Christmas morning. As the song goes, “All I want for Christmas is you”.

But as hard as that all is, Killian has given me a gift this Christmas. He reminds me every single day to soak it in. Soak everything in. Soak in your kids excitement. Soak in the busy stores and the dinners and shopping and the chaos. It’s overwhelming and its hectic and its tiring. But thank God we have the need to be so busy.

Be thankful you have friends and family to have for dinner. Be thankful you have people to buy gifts or bake for. Be thankful your family is around to drive you crazy this holiday.

Find joy in this journey. Find joy in the chaos and the loud and the mess. Because the alternative is heart breaking.

I’m so thankful for my kids, my husband, my family and my friends. I’m so lucky to still be able to have the ability and the support to still be excited for Christmas, even in the hardest days of life. I’m so excited to watch my boys and my nephews open their presents, to see that amazed look on their faces when they see that Santa came. I want to soak in every second I have with them and with the rest of my crazy, big, chaotic, busy family. Because if I learned anything this year, it’s that absolutely nothing is promised. Nothing.

There is no one on this earth that can reassure you that next Christmas, it will be the same. That next year you will have the need for the chaos and over exitement and the calender stuffed with parties and plans and chores. So soak it in. Please. Do it for Killian, do it for me, do it for every person who is missing someone this year. Remember that the hectic days, the early mornings, the late nights and the chaotic moments mean that you’re here today. You’ve been given the gift of your family and friends. Love to you all. I hope you have a holiday full of mayhem, chaos and havoc. That its loud and busy and you eat to much and laugh so hard your stomach aches. I hope your kids or nieces and nephews are so excited for Christmas that they can’t sleep and are up at six am. I hope that you need strong coffee in the morning and a stiff drink at night. You are so lucky to have that need. Happy Holidays friends.

christmas1

Anxiety and grief

This whole grieving thing is tough. Every time I think I have something figured out; a coping mechanism, an expected reaction, an anticipated emotion,  it sneaks out and gives me an unpredicted surprise.

I’ve always been a bit of a hypochondriac. When my kids get sick I can get a bit crazy. I’ve ended up jumping to conclusions and scaring myself much more than is necessary. Thankfully I have Dean, who’s on the other end of the spectrum. The boys could have their hair lit on fire and he’ll calmly tell me relax and blow it out. Well maybe not quite that extreme, but you catch my drift.

When we found out about Killians heart, I was petrified. I didnt know how I was ever going to be the mom with a seriously ill child. As someone who once wanted to take my baby to the hospital because he threw up…once, I just didn’t know how I was ever going to possibly survive. But once he came, once we got to Sick Kids, I did. I survived. With the things being thrown at me, most things that would have people in hysterics, I was ok. I got tough. My skin got thick. I did it because I  had to for Killian. I had to hear these terrifying things daily. I had to sign release forms that had extreme brain damage and death as a possible side effect. I had to understand that even when a transplant came, life was going to be constant monitoring and medicating, hoping that his body wasn’t rejecting the thing keeping him alive. I had to watch and prepare for the possibility of cancer attacking his body because of the life long medication he would have been on. I was strong. And im proud of that.

I remember sitting with Dean at the hospital late one night and saying to him, “Well, if I can deal with this, I can handle anything now. A cold can’t scare me now”.

Then, two nights ago, Malik woke up with a nasty cold. I was fine all day, didn’t really think about it. Stocked up on some Tylenol and fluids. Night time rolled around   I tucked him in, gave him some meds and went about my evening. Got into bed, and my brain started to do what it does now. Race, think, plot, remember. My anxiety came into full fledged crazy mode. Thankfully Dean kept me from jumping over the panic attack ledge, but it was close.

I spent the night in and out of his room. I layed there for hours, one hand on his chest and the other holding my phone, staring at the timer. I timed his breathing rate and his heart rate over and over and over. I would shake him a bit, just to see him react to me being there. I cried off an on all night. I kept remembering the machines in Killian’s room. The numbers that his breathing, saturations and heart rate needed to be in. I remembered seeing those numbers start to drop lower and lower the day he died. I was absolutely consumed with the fear that something was going to happen to Malik. I was already thinking about how I couldn’t survive going through it again. How was I supposed to be a mom to Ryker if Malik left too. How was I supposed to live knowing that two of my boys were gone. My brain was betraying every logical part itself. It was going to the worst of the worst of the worst. Logic was telling me I was being irrational and crazy, but I couldn’t shut it down.

He’s been fine, he’s fighting a cold but is his regular, stubborn self. I’m still trying to keep my anxiety down, im actively talking myself out of it daily. Self talking the reality of the situation. I think we all have anxiety, it’s part of being alive. We can’t ignore it. But then we need to get up, brush off, and try again. Take it on head first and not give up. Im so thankful that I have the ability to give anxiety and fear it’s time, and then to get back in the ring and keep fighting it. But i’m also not embarrassed to say that if the time comes, and I just can’t control the anxiety flare’s, I will gladly get into some councelling. Self-care is so very important, in not only grief, but in life.  There’s no shame in admitting that your brain is trying to sabotage your peace. We need to fight to keep our peace any way we can.

malik

Supporting grief during the holidays

We all know that the holidays can be a difficult time for a lot of people.  Dealing with grief during the holidays can be exceptionally difficult. While the cheer, happiness and busyness is so big and strong, the grief, memories and realization of loss is bigger too.  Supporting someone who’s grieving through the holiday season is intimidating. It must put a weight on your shoulders. It’s scary, what if you say the wrong thing? Do the wrong thing? I get it. I’m obviously not an expert in grief, but I know how life changing it is. I know how difficult it is. I hope that writing this out can help someone, anyone, feel more confident in supporting their friends or family throughout some of their largest moments of grief.

Please ask us how we want our loved ones remembered. Do we want pictures, stories and memories shared throughout the holidays? Do we want some memorial items given or displayed? It’s ok to ask. Some of us may want to include our littles (or bigs) as much as possible. Some may want to just have private moments with their memories. Please don’t be afraid to ask the hard question.

Understand that the holidays will be different.  Losing a piece of your heart has consequences. For us, but also for you. It’s ok to acknowledge those feelings. It’s ok to wish things could “go back to normal”. Believe me, we wish they would too. Embrace the change, and approach it gently and with kindness and support. We will all find new normals for the holidays. Will develop new traditions and memories. Change is healthy and theraputic. If we don’t accept the change, and embrace it, healing can’t happen.

Know that social situations can be very difficult. We end up seeing more people around the holidays. More friends, more family.  Seeing someone who’s lost a loved one (child or not) is uncomfortable. Especially the first year. As a griever, seeing people who you haven’t seen since the loss can be hard, it’s emotional. So offer us support in those situations. Offer us a quiet place to go to take a break, offer an out if it’s needed. Please don’t be offended if we choose to not attend an event, or need to leave early. The most improtant thing right now is self care. We simply don’t have the energy to worry about offending someone.

If you send a Christmas/holiday card to a family who has experienced a loss, acknowledge the missing piece. A simple “Remembering Killian this holiday season” is a beautiful things. It lets us know that our person hasn’t been forgotten. And that’s what we all want.

Say their name. Please. More than anything, don’t pretend that they were never here. It may be hard, it may be sad and bring some tears. But thats OK. Every single grieving parent i’ve talked to has told me the same thing, “I want to hear their name”, “I don’t want them to be forgotten”.  We LOVE to hear our loved ones being remembered and acknowledged.

Don’t be afraid to cry with us.  Since losing Killian I found a very common theme. Nurses, staff at the hospital, family, friends, aquaintences and even strangers; everyone has apologized for crying when talking about him. Please don’t.  It isn’t offensive or upsetting. If you need to cry for us and for them, do it. We may cry with you. You are crying because you loved them, or loved us, or are feeling compassion for us. That is never a bad thing.

Offer support and help. Anyway you choose to is OK. But please don’t be insulted if we don’t reciprocate or accept. We all grieve so differently. Some of us need help in certain areas, and not in others. Even if we don’t take you up on your offers, they are so appreciated. Just knowing that the support is there is more than enough in some cases.

Don’t make us the center of attention. Offer a gentle, warm and loving space to enjoy the holiday’s the way that we need to right now.

I’m sure there are many other ways that you can help and support someone grieving. These are just a few things that I hope for. Above all else, remember our babes. We wish more than anything in the entire world that they were with us. That they were here celebrating our family traditions and events. So, involve them the only way that we can now, through memories, memorials and acknowledgement.

christmas

Grief – Keeping my head above water

Grief is so unpredictable. It’s hard to put into words. It’s hard to describe the feelings that come along with it, the timing, the depth, the triggers, the encompassing numbness. Because its so hard to verbalize, I can imagine how hard it is to support someone in the depths of a deep grief.

Some days and nights I feel like i’ve fallen through the ice of a frozen lake. Like I was slowly walking across that unstable ground causiously, and I misjudged a step.  The water is so cold it’s shocking. Its all around me, taking away all other feelings. Just full body shock. I feel like i’m reaching out of that water, trying to find something solid to grab on to. To grasp something that will help pull me out. But everytime I get ahold of that invisible thing, it breaks off and I slip back under.

I want to scream. I want to cry. I want to break things, and blame someone. But there’s no use in that. It won’t change a thing. That’s a hard thing to come to terms with. That you just have to accept the hand you’ve been dealt, and find a way to live with it. Its very intimidating.

You are all my cheerleaders, just know that. You are all calling me from the shore on the other side. Encouraging me to keep fighting, to keep trying. To keep holding on and to keep my head above water. It may not seem like you’re doing enough. It may seem like I don’t hear you, that i’m not acknowledging your voices.  It may seem like im controlling the situation myself, that I’m not thanking you for the support. But that’s so that I don’t start to panic. I need to stay calm so I don’t swollow more water and lose the strenth I need to keep my head up.

The smiles and happy times that are here now are all real. I love the life I have, I love my family and friends. But it has all changed now. There’s a different quality to that happiness. That’s just the reality of living without your child. No memory, good deed or picture will change that. It patches up the wound, and takes the edge off of the pain, and for that i’m forever grateful.

So please, don’t give up on me. Don’t give up on the person who you’ve been trying to help and support through grief. Keep throwing those ropes and life preservers. Keep the blankets warm. Keep shouting your support and encouragement. Just keep checking in that we’re ok. We may say we’re OK…we probably will. But the support is what is keeping us there. Its more appreciated that I can ever say, I just don’t have the energy to say it. Every ounce I have is being used to keep fighting that undertow. Don’t give up on us, you’re appreciated more that you will ever know.

cropped-d0bb57c2-2a56-4551-9146-85d0f503399d.jpeg

Going back to his home

Yesterday we went back. Back to the only place Killian ever lived. The place where I spent every moment with him. The place where he lived his short life. The place where he died.  Dean and I went back to Sick Kids.

We went to see the people who spent his life with him. That was Killians home. The people there knew him, held him, changed his diapers and fed him. It was a very bittersweet day. Seeing the people, seeing the hall where he lived. It was hard. It just brings all those memories and emotions back to the forefront. It reminds me, again, that my time there is done. That my baby is gone. I remember going onto that floor for the first while we were there and being scared of it. Scared of the machines, the tubes, the beds, the medical equipment. I was so anxious to be able to leave that place. To pack Killian up in his stroller and walk through those doors, and to go home. Yesterday, seeing all those things, I just wished I could be back. I wished that I was sitting in those hard, uncomfortable chairs. That I was learning medical terms and how to give needles. That I was tired from the constant buzz and busyness. I wish I was still there, because that would mean Killian was still there too.

The PACT team (what we would have previously called palliative care team) is amazing. They stay in contact with us through social media and email. Once you leave Sick Kids for the last time, they don’t wave goodbye at the door. They make an amazing effort to stay involved with the families of the children who lost their battles within those walls. Thats such a wonderful thing. We brought them some stuffy blankets to distribute to families.  My mom had given Killian a beautiful blue elephant one when he was born. He had it in his bed with him every day.  I don’t know what I would do without that elephant now. I haven’t washed it yet, so it still smells like the cream I put on him everyday. I sleep with it every night. Tuck it in beside my face so I can smell him. It gives me so much comfort. I feel a connection with him through this silly blue stuffed elephant. When you lose your baby, you hold on to them any possible way you can. Im so thankful to my mom for giving him that. I simply wouldn’t have thought about it when he was born. When your mind is so overwhelmed with the trauma that has hit you, that last thing crossing your mind is getting a stuffed animal. Your mind is overflowing with medical terms, fear, machines, beeps, sadness and terror. Thinking about a toy is just not on any radar. I learned the hard way how valuable those little things become. So we wanted to give them some to pass out. I hope for every single child that gets one, it becomes a nice memory for them. I hope that it goes home with them and gets packed away in a cupboard and eventually forgotten. I truely do. But if things don’t go well. If things turn out for those momma’s and daddy’s the same way our’s did, I hope it gives them something to cling to.

Walking back up to the floor Killian was on was scary. But I was greeted with hugs and smiles. One of the nurses came out and hugged me so hard and cried with me.  She had been out of the country when Killian died, and actually found out through other nurses that he had. The night that Killian was born, I was stuck at Mt. Sinai to recover, so Dean went with him and slept sitting up in a chair, with his hand in Killian’s incubator. This same nurse, Kathy, covered him in a blanket and tried to keep him comfortable. Members of the team we worked with asked to come and see us, to give us hugs and see how we are. These people are the best kinds of people you’ll ever find.

We left the hospital to go have some lunch, while eating, we were talking about how much we would have loved to see the Doctor who worked on him that last day. The one who called all the shots those last 45 minutes. The one who made the final call that they couldn’t do anymore. He was the one who told us our baby was dying. He was the one who called his time of death while he was in my arms. He was phenominal. Seeing him work, we never once questioned the quality of Killian’s care. He was compassionate, kind, and the best Doctor i’ve ever seen. After lunch, we walked back into the hospital to go get our car, and there he was. Standing right in front of us was our Doctor. I’m pretty sure we both looked stunned. He came right up to us and shook our hands. He remembered everything about us. Down to the colour of my hair. This man. This ICU Doctor remembered a family who he spent an hour with, 8 weeks ago. It felt so nice to see him, to thank him again. To know that Killian is remembered by these people makes my heart so very happy.

So going back to Sick Kids was the most bittersweet moment i’ve ever experienced. I hate that we had to be there, but i’m so thankful that it’s there to help me remember my      Mr. Bean

teddyu

Finding some peace in Grief

Have you ever had strange occurences, things that keep popping up?  These instances can easily be chalked up to coincidence.  Our cynical human nature seems to push us in that direction.  We think that its good luck or just wishful thinking.  Maybe thats true.  I don’t think we’ll ever really know, until we move on from this place.

When Killian died I started seeing a fox.  I mentioned this in a story I had told early on after his death.  His beautiful blanket that he was cremated in had a little orange fox on it. He came into this world and was wrapped in that blanket, and he took that with him in the end.  The monday after he passed, I was out and stumbled across a ceramic fox.  It was a physical adaptation of the fox on his blanket.  Exact same colour and stance. I picked it up in the store and cried. I felt like a crazy person, but I think we’re given the luxury of being crazy right now.  That fox has been sitting beside Killians ashes, a home for his bravery beads, since.

When Killians ashes were delivered home to us, we opened the box he was in and saw his ashes wrapped in a fox stuffy.  Again, I started to cry.  Maybe he was telling me something. Maybe he was telling me, in the only way he can, that he’s with me. He see’s me. I felt a sence of peace. And thank God for that. Any peace is welcomed with open arms.

I’ve been searching for a fox everywhere I go…urging it to show itself.  And I wasn’t seeing it.  I felt like my heart was getting a little more damaged again.  Started to feel like I had fabricated these signs to help with my grief. That it was probably a coping mechanism. I was questioning these signs.  That nasty part of my being was trying to steal that from me.  Steal the peace that I was getting from that simple little fox.  That feeling was giving me such strong anxiety.  It was adding to the sadness that is always there. I was feeling disconnected. Feeling like I was forgetting him.  Those feelings are brutal on an already weakened soul.

We had an appointment to get Killian’s memorial tattoo with his ashes in them.  Initially I wanted to get his fox on me. But with that cruel doubt wispering in my ear, I started to change my mind. I didn’t want to get something that I had made up in my mind…so we decided to get his heartbeat. But my gut told me that wasn’t right. I knew I needed to get a fox…his fox. When we got to the tattoo parlor, I was feeling off. I was putting so much stock into this tattoo. It means so much to me. Our artist had drawn out the fox, and the heartbeat, so I could decide which I wanted. I took the paper, looking at both, and looked up to the table with the equipment. A fox was on the coffee cup there. I knew what to do. It feels right having it with me.  I feel linked to him through this small, simple fox. Thats such a gift to get…to feel a connection with him.  I crave it every minute. I just want to feel like he’s with me, that we’re still together. So having this thing…this symbol of him is so very welcomed.

I started writing when we were inpatient with Killian. I’ve never really written anything before. I’ve never seen writing as something that I was meant to do. But once I started, it felt really right. So when Killian died, I decided to keep writing.  For my own form of therapy, and to share Killian with anyone I possible could. When I was being encouraged to start this blog, I was so hesitant. Do people want to read my writing? Is it doing any good? Am I bringing people down? As I was doing some work on the blog, still strongly questioning this new chapter, a website opened on my laptop (i’m not very technically savvy, so I tend to open things and close them unintentionally, oops). The symbol of this website was a fox. The website was a guide on how to start to write a book. I think maybe Killian was telling me something. Telling me that our stories need to heard.  That we can help someone, anyone. And that feels so good. I think this is right.

So maybe it is just wishful thinking. Maybe i’m holding onto this fox, because I can’t hold on to Killian. Maybe they are coincidences or something else much more logical. But maybe they aren’t  Maybe this fox is my babe. Showing me he’s with me. Showing me that im not alone. Pushing me and guiding me somewhere I never thought I would go. I like that. Im going to choose to believe that. And im going to thank my sweet baby for giving me some calm in this crazy storm.