I have been debating whether to write a post or not during this whole pandemic situation because it seems all you hear in the news is the negative. Life right now in the world is much like the name of my blog. Life is beautiful yet the world right now is in complete chaos. Lets choose to find beauty in this difficult time by showing appreciation and gratitude in the simple things and hope that tomorrow will be better. I’ll start.
I loved it when people and businesses in our town put teddy bears up in their windows for kids to count on their bear hunt. I love that my boys are learning how to cook and clean and drive me crazy. I’m grateful that this is only temporary, that there is a light at the end of the tunnel and someday we’re going to look back on this and say we survived!! As the ole saying goes….”this too shall pass”. Don’t wish our time away for this to be over because life is short. We can never get this time back. Lets not waste it because we’re stuck home. Instead, maybe make a goal to make a new memory or start something new each day with your family. Perhaps learn a new card or board game, or draw a new picture or write a new story…..or do nothing. That’s fun too! If having lazy days and watching movies or tv shows are what keeps you at peace, then that’s great! That’s still a fun memory! The kids will be like ” hey, remember that time the school closed and we ate junk and watched tv for a month? It was awesome!” Right now, it’s about keeping the kids happy, healthy and without fear and anxiety.
I’m an introvert so staying home and social distancing has been easy for me and my family. I know this is not the case for many. Do what’s best for you and your family and don’t compare yourself to others. Who cares if Judy down the street is posting about all the math she has taught her kids and you’re struggling to get them dressed. Yay, they’re dressed! Good job! Or if John made forts and camps with his kid and you’re letting your kids have too much technology. Who Cares!!! This. Is. Temporary. Just wash your hands and stay home!
Here’s a poem I wrote about it all…..enjoy!
The world has become overwhelmed with fear
The negativity from the virus is all you hear
Stay home and isolate from your family and friends
Waiting to hear when this pandemic ends.
To find a light at the end of all this
A purpose for all the loved ones we miss.
Perhaps a lesson for more quailty time
to spend with our loved ones and even human kind.
Wash you hands and stay home is simple to do
Cover your mouth when you cough or sneeze is nothing new
Yet we find it hard to follow what the Government recommends
don’t spread the virus to your neighbour or friend!
Christmas is my favorite time of year. It’s a time where my heart is full of gratitude and love. My memories of Christmas growing up are filled with Dolly Parton and Kenny Rogers Christmas music, Simani and other Newfoundland music. The Mummers Song is still a favorite. I’ll never forget the time my Nan dressed up as “Granny” when our Grade 12 class acted out the Mummer Song. It’s a memory I’ll always cherish.
I remember visits with family and friends. It was always a time of Christmas drinks, hor d’oeuvres, dancing and great laughs. Sometimes mummers even showed up! Now, it’s so different. It’s not the same. Unless we are hosting, it seems like not many get together and celebrate like we once did. Makes me sad. Oh if our boys could only grow up and experience Christmas like I did as a child….. The memories they would have!! It’s my responsibility as a parent to ensure we create traditions and fun memories instead of gifts.
Anyone who knows me well can tell you that I tend to drop a few f-bombs. Well not a few, I say it A LOT. I mean it’s not a big deal is it? I was raised in a good ole Catholic home where saying something as innocent as shut up or stupid was not acceptable. Both my parents never said a bad word to save their life and now their three children……well lets just say we’ve made up for them.
For me there is no better way to vent frustration than to let a good ole “fuck” out. I know it’s not appropriate for women to swear or Mommy’s (insert eye roll), but it’s a very good stress reliever, right? When something goes wrong, saying “oh, sugar”, or “darn”, or any other less vulgar word doesn’t really seem to help. But a good ole fuck do! I’ve heard people say that there’s nothing worse sounding than a woman swearing. Why? Because it’s not lady like? I don’t put the Lord’s name in vain since well that’s breaking the ten commandments and my catholic roots tell me not to, but any other curse word is fair game!
What about swearing in front of the kids? Yup I do that too. I know, I know, I’m a bad mom. I mean my poor boys will never grow up to be kind, considerate or loving men having a Mom who swears? Whatever! They know it’s not nice. And yes there are times when even they say “Mom!” when I let more than one word slip out. I do try to be more aware around them when I say it…..so it’s more intentional. There have only been a couple times when they’ve picked up my bad habit. Like this one time when Todd was 3 or 4, he was downstairs playing on the floor when Shane and I hear “Fuck, fuck, fuck.” We look at each other and then back to Todd. Uh Oh. We didn’t think he understood what he was saying so we asked him.
“Todd, what are you saying?”
“Awful fucking state here” he replied.
At least he used it in the right context right? Mom fail. So we were quick to teach him that word was not a nice word to say and we’ve tried to be more aware with our choice of words around the boys. A couple days later he was watching Elmo. Coincidently the letter of the day was “F” (You know where I’m going with this right?). He seemed to be very interested in this episode, absorbing all the knowledge. Then Todd turns to me and says “Mom, F is for fuck!”
“Well, umm yes it is. But little boys don’t say that word. Let’s have another chat shall we?”
He didn’t say that word in front of us again. It makes a funny story now but when it was happening I felt embarrassed. Whose kid swears? Not Mine!
Fast forward to this year and well lets just say I felt a little guilty when my 9 year old made us a swear jar. Oops. Although in my defense, I think he just wanted the money for v-bucks on Fort Nite. When I swear I don’t do it to hurt or offend people. I genuinely use it as a form of expression. The kids hear a lot worse in school. Take for example this one day when I was running around the house playing with the boys when all of a sudden Todd looks at me and says “Mom, you run like a bitch!” He’s smiling at me as proud as ever as if he’s giving me a compliment.
“What did you call me?”I ask.
“A bitch.” He says innocently.
“Do you know what that means?” I ask.
” Yes, it’s a female dog.” He answered.
My son thought he was giving me a compliment when he called me a bitch. I mean I know I’m a fast runner and all but I’m not that fast! Where did he hear that word? Because lets be honest, bitch is not my word of choice when I swear. “On the bus.” He answers. Exactly. If I never said a swear word in my life, he still would hear it in school! Time for another chat.
In all seriousness though, I think swearing is not that big of a deal, but I do think it should be said as an adult. I think our kids need to be informed and educated on the meaning and use of the words so that it’s not used to hurt someone. We told the boys if they want to swear they have to wait til they’re an adult. Then they are free to use whatever forms of verbal expression they want.
Words are only damaging or hurtful if you give them power. If poop had the scientific name shit, it wouldn’t be a big deal, right? Instead of saying shit happens, poop happens? Nope, don’t sound right. What about instead of saying “oh, for fuck sake”, we say, for Pete’s sake or Heaven’s sake? First of all, who in the heck is this Pete guy and what did he do to get his name in here? To me, saying fuck sake, expresses how pissed off I am. Heaven sake or Pete sake seems a little less frustrated. I don’t know, am I the only one that feels this way?
The most important thing about swearing for me is that I try not to do it in public. If I do, I make sure there’s no one around close enough to hear it, especially kids. Like for instance, going to the grocery store here for the millionth time to get fruit and there’s none there or it’s all rotten…..Well, I might mutter a fuck sakes under my breathe, but I don’t shout it so the entire store could hear…..although if I did, would that help in getting better quality fruit and veggies? I’m asking for a friend. It’s not that I think swearing is wrong, it’s that I care about people’s feelings and I try to respect them just like I hope they would respect mine.
The point is that I’m not perfect, nor do I try to be. Maybe one day I’ll try to stop. Or maybe one day I’ll realize that it makes me who I am, and I like who I am. Swearing does not make you a bad person. Being a bad person makes you a bad person. Simple. So if you like to swear, swear! And if you don’t, don’t!! Most people are just trying to survive and get through the day and if that means saying a few fucks along the way, then do it! I know I do!
After the last three posts about grief and Lily’s journey, the grief wave hung around a little longer than normal. I knew it would be difficult sharing our story and with this dreary depressing weather (like seriously Mother Nature, wtf??!), it was harder staying afloat. I was sad and emotional, but as per usual, I made it through and all is well again! So now what? Well, I wanted to share my perspective and outlook on life and how it has changed.
Before I experienced child loss, I was someone who put too much thought into everything! I worried about the littlest thing and cared about what people thought. I was an overthinker. I worried about my work and if it was good enough. What if I made a mistake? Was I a good mom, wife or friend? I wasn’t confident. I was a worry wart and stressed a lot. Now, I don’t care. Well it’s not that I don’t care, it’s just that in the grand scheme of things it doesn’t matter. I have perspective-I don’t sweat the small stuff! My new way of making decisions is if no one is going to die or their health is not affected, than it’s easy peasy! It’s not worth losing sleep over. I no longer take the joy out of my days over something I can not control. (Thanks to my therapist for helping me realize that!) Do I still have anxiety and trouble sleeping? Of course! I am human but what has changed is how I deal with it. My worries that keep me up are about my boys and I know it’s normal given our circumstances. I tend to worry more about my boys more than the average parent because I know what it’s like to feel that unbearable loss. I use to worry and care what other parents thought about me being an overprotective or nervous parent but now I don’t. I don’t fear being judged. People are going to judge you regardless. I read a line in Rachel Hollis’ book Girl, Wash Your Face, and it said “someone else’s opinion of you is none of your business.” She’s right! So why waste time on something you can’t change? I don’t anymore.
I don’t let my fears consume me. Fear means you’re alive!! So I face them head on. Writing this blog and putting our life out there is scary, but helping others in Lily’s honour make it worth it. When I do anything that I’m nervous about, I think about Lily’s life and how everything in my life that I endure is nothing compared to what she went through. If she defied everything against her then something as simple as daily life, work or financial decisions are minor.
I often struggled to find purpose from Lily’s life. How can I honour her? Besides this blog, what could I do? Well after a lot of soul searching and reflection, the answer is I can keep living! I can live my best life and choose to be happy and in doing so, I’m honouring her. I believe our loved ones would be sad and disappointed if they saw us not finding joy and happiness in our life. They wouldn’t want us to not live our life too. We can grieve and miss them and still find joy! That is the best way to honour Lily, I can live a happy life FOR her!
I asked Todd and Matthew this past year what they’d like to do to honour Lily. They wanted to write a book about her. So we did. The boys and I wrote a children’s book about child loss. They named it Lily’s Wings. We wrote it to help other families with young children explain what happens when you die. The books we had given to us at the time just wasn’t enough. The boys still had too many questions. This book is their story told from their perspective. They want me to publish it and I promised I would. (Stay tuned for that!) That’s how we will honour her. As the boys grow up, I’ll teach them to live life to the fullest, follow their dreams, do what they love and always choose to be happy. In doing all of that, they will honour Lily!
My biggest take away from child loss is that life is short. I use to say that before Lily. You only live once (or YOLO)!!! But it doesn’t mean the same now as it did then. Now, life IS short! It is precious time, especially with our kids. We only have a finite about of time with them and I don’t take one second for granted. We focus our time together as quality family time. Friday nights are movie night, I play the Xbox or Nintendo Switch with them almost every time they ask and most weekends are spent at our cabin. I’m the Mom who is playing soccer and baseball in the backyard and hide and seek at the cabin. When Matthew asks me about a dozen times each night for an extra hug and kiss, as much as it might annoy me, I do it. Because I want as many hugs, kisses and bedtime cuddles as possible. Is it easy? Hell no!! Being a parent is about sacrifice and it’s hard. Shane and I get frustrated and lose our patience too. There are times we want just the two of us to take a vacation or night away. It doesn’t happen often or easily for us. But we know when they are older, then it will be time for us again. Before you know it, they’ll be grown and on their own and I don’t want any regrets. When they’re moved out and I’m home alone reminiscing about their childhood, I’ll have all those happy memories to rely on and so will Todd and Matthew.
Our family is no different than yours. For us, we’ve kept living. Even on the hardest days, we choose to keep living and be happy. Tomorrow is not promised. If you’re reading this and struggling with your own issues, remember life will go on with or without us! Being happy is a choice we have to make everyday. No person or thing will make you happy. You have to choose to be happy. I know that’s easier said than done. Believe me there are days where I get stuck in a rut and I’m mad or sad at the world. Then I feel guilty wasting a day of my life being everything except happy. So I take those days and learn from them. What do I need to do to change how I’m feeling? Maybe I need to get outside with the boys, workout or go for a walk by myself. Maybe I need to chat with my sister or Mom and they can offer advice. The point is to keep trying and never give up on life or yourself!
As I sit back and think about everything we’ve been through, the Beatles catchy song “Ob-La-Di, Ob-La-Da” comes to mind. Life goes on! Just because you experience loss, heartaches, or traumas, life doesn’t stop. Even if we want it to at times, we have no other choice but to embrace it and live through it. By living through the hard times, it allows us to appreciate the little things more and be grateful. When your heart is full of gratitude, happiness seeps in more easily and life is beautiful again!
Lily’s coming home! We were so happy and relieved, yet nervous and scared. It was difficult and stressful travelling to the Corner Brook hospital. We tried our best to go daily or every second day, but it was hard. Travelling with two small boys is a bit of a challenge on a normal day….packing the snacks, gravol and activities to keep them occupied….but daily, it was a struggle. Matthew was two and didn’t travel well. He would get car sick and cranky on every trip. Todd would have his moments too. We would spend our days visiting Lily making memories doing things like feeding or bathing her and reading or singing to her. But after a while, the boys would get restless and who could blame them! Their daily routine was totally gone and they were adjusting to this new normal. So bringing Lily home was a big relief. The boys could get back to their routine at home which now would include Lily and our life could begin its new normal.
I had so many fears with Lily coming home. I was scared she would die at home and it was a good possibility she would. I mean, we were bringing her home to die! I had no control on when her time with us would be up. What if she died around the boys? How could I protect them from that? What if she aspirated while I was feeding her? I know these are normal fears to have when you bring your dying baby home so I could do nothing only face them.
The first couple weeks of Lily being home was an adjustment for all of us. The boys were so excited to have their baby sister home. To prepare them, we explained that Lily was very fragile and special. We told them that she would only be with us for a short time so we would spend as much time with her as possible making happy memories. Trying to explain death and sickness to a two and four year old was a challenge. To them Lily was a perfect healthy baby. It was so heartwarming to see them embrace Lily with all her imperfections……it was unconditional love in its purest form. Sure Todd and Matthew noticed Lily was different. They asked about her pointy ears and we told them they were just like their ears even if they looked different….they thought she had elf ears and that’s what made her special. If it were only that simple.
We tried to include the boys and let them help with Lily as much as possible. When the boys would take baths, I would take Lily and dip her toes in the bubbles with the boys. She would smile and the boys loved it! They helped pick out her clothes and get her milk ready like many other brothers and sisters do. When I would lay her on the floor for belly time, Matthew would lay down next to her and hold her fingers. Lily loved them. Sometimes Lily looked like she was in her own little world and never focused on anyone….but when Todd and Matthew entered the room….she would follow them around. If Todd kissed her (and he was rough), she would smile. I know she loved her brothers. They still talk today about those memories and as heartbreaking as it is, I’m glad they have those memories. I remember the first time she smiled at me. It was New Years Eve and I remember talking to my mom on the phone and I looked down at her. She had this huge smile on her face. It was the best way to end and start the year. We have a lot of happy times to remember. Even on the hardest days, Lily found ways to make us smile.
It wasn’t always easy though. In fact, it wasn’t easy at all. Feeding Lily was a task. She only drank small amounts and it would take her an hour to suck it with long breaks in between. Usually shortly after she drank, she’d throw it all up. Then there was her sleep or lack of. I think that was the hardest point for me. Lily did not sleep. This is a common symptom for trisomy babies. Sure she would have catnaps in my arms but if we laid her down, she was up and fussy. The only spot we could get her settled was down in our rec room with the hum from our pellet woodstove…..even then it was only naps for an hour or two. I remember I would be so tired sitting up on the couch rubbing Lily’s back and Shane would get home from night shift and ask me if I slept yet. No, not yet or not much I would often reply. I don’t know how I found the energy to take care of the boys with little to no sleep. Lily also had many apneas and for long periods. There were so many times I would panic when she turned purple from not breathing. I’d think, ok this is it, she’s about to pass and then she’d take a deep breathe and then be fine. It was such an emotional roller coaster.
Lily continued to defy the odds each month. The doctors would be puzzled at each checkup. When we took her to see the cardiologist at her 6 month checkup, the hole in her heart had healed on its own. We were amazed. She still struggled to breathe and eat, yet she was thriving in other areas. It was so hard to not be hopeful. Maybe she’d be a miracle and wouldn’t die after all? But the apneas were increasing and lasting longer and feeding her was getting more and more difficult. Oh and the lack of sleep and fussiness was taking its toll on me. I was trying to be strong and keep going for the boys sakes but I was struggling. I remember falling down the stairs one day. Thank god I never had Lily in my arms. My entire butt was bruised black. I was like a zombie. I was so tired. I couldn’t do it anymore. I finally broke.
I remember Lily had just thrown up another bottle I had worked so hard to get her to drink and she was extremely fussy. The boys were downstairs playing so I laid her down in the bassinet, went to the patio door, and fell to my knees. “Please God, Help me!” I remember saying while sobbing and staring out at the sky. ” I can’t do it anymore. Give me strength. Please give me a sign that you’re there. Show me I’m not alone.” I sobbed harder. “Please!!”
I never got a sign that day. I never felt more alone and I decided then and there that my relationship with God was done. I would get through this on my own. Yes, I had family members that tried to help, but Lily was my responsibility. I remember crying on the phone to my Mom shortly after telling her about Lily and her suffering and how I don’t know how to do it anymore. That was the day that I had my ah-ha moment. When we decided to put Lily in palliative care, there wouldn’t be any extreme measures, or IVs,…. nothing extra. She was home to die. My mom made me realize that day that I was Lily’s IV, I was keeping her alive. So I stopped. I decided that day that when Lily stopped sucking her bottle even if it was still full, I would no longer keep trying. I think that was the hardest decision I have ever made, knowing that in doing so, Lily would die. But I couldn’t continue to be selfish, I wasn’t being fair to Lily. Her gasps for breathes and struggles to feed and sleep were because she wasn’t supposed to be alive. I wasn’t giving her any quality of life by forcing her to be alive.
Lily lived about a month after I stopped. It was unbearable to watch. She was hungry but couldn’t suck. She was trying to breathe but struggled with every breathe and her apneas got more intense and she grew weaker. We still included Lily in everything. We took her camping with us in our travel trailer, I took her for walks in my snuggly and brought her to visit friends a couple times. We had to continue living as a family even though it was heartbreaking. Then one day we noticed Lily had a fever and her oxygen levels were dropping. We brought her to the ER where the doctor said she had an infection. He prescribed her antibiotics and sent her home. That night was the first time Lily slept through the night and it was also her last night at home. I remember checking on her in amazement that morning. She was finally sleeping! A miracle! I went back again an hour later and she was still asleep. Uh oh. I knew something wasn’t right. Shane called home from work to check in and I told him Lily was still asleep. Not a good sign he said. My heart sank. I knew it too but he confirmed my fear. I checked on her again a few minutes later and she was awake but very weak and moaning. I picked her up and she was limp in my arms. Oh no, I thought. I brought her upstairs caressing her and kissing her. I remember telling her it was okay to let go, to go be with the angels. Mommy, Daddy and her brothers loved her forever and we knew she was tired….just wait for Daddy to get home I whispered to her. I called Shane and told him to come home. My heart told me it was time. I called a family member to come stay with the boys while we brought Lily to the hospital. I told the boys that Lily was going to the hospital and probably wouldn’t be coming home. I remember Todd asking if she was going to heaven. I think so, I replied.
We arrived at the hospital and the doctor saw her right away. He checked Lily over and then we were given a private room. It was time. I remember the nurse coming back after seeing Lily arrive, wiping her tears and apologizing for crying. It must of been hard for the staff to see. Shane and I were numb I think. I don’t think it really sank in what was happening. We were only in the room a few minutes when we watched our beautiful baby girl take her final breathes. It was so peaceful. Shane and I cried together. Lily’s journey was over, she finally gained her angel wings.
During Lily’s 8 and half months with us, I worked on a poem for her. I finished it two weeks before she died and I read it at her funeral. I posted it below. It describes our journey with Lily. As I sit here overwhelmed with sadness as I share Lily’s journey, I know we did right. Lily is free from pain and suffering. As hard as it is now, five years later with all our struggles, I know we did right. We gave our baby girl love and family and in turn as short as her life was, she taught and gave us, unconditional love.
Perfect Lily
Against all odds you were given to us
A gift so special, only God did trust
Time
and future unknown
Yet each moment with you, our hearts have grown
Imperfection
inside gives perfection in heart
For
the love of a child grows from the start
Brothers
so proud and in awe of you
Your imperfections unseen by them, and their love so true
Our
special Perfect Lily you’ll always be
Our
one and only daughter & sister for eternity
A
gift so special and in time we’ll see
Why you were given to us to only leave
Lily,
if only your problems were mild
We
wouldn’t have to say goodbye to our child
Your
life from the start seemed so unfair
To watch you suffer, our hearts could not bear
To
watch Matthew give you a kiss
Makes
us wonder if he will ever miss
His
special sister he loves so much
But thankful for his life that you did touch
Perfect
Lily our lesson from you is unconditional love
Not
given by us or God above
But
from the innocence of Todd, your brother
The purest genuine love, like no other
Your
eyes glowed when you looked up at him
With
the purest love, so genuine
That
beautiful smile would make every heart melt
But in the bottom of my soul is where I felt
That
deep tender love for your child
So
unfair your short time, it makes my blood wild
The
overwhelming guilt I feel like no other
For being frustrated and tired, not like your brother
Your
life hasn’t been easy, you’ve been so tough
Your
tiny body has had enough
To watch you suffer was hard to bear
But now I know why, you had so much love to share
So
Perfect Lily with your angel wings may you soar
To
be with our lost loved ones, meeting you at heaven’s door
A
beautiful angel flying so high
You’ve left footprints on our hearts until we die
To
say you won’t be missed would be untrue
For
now we feel a greater love we never knew
Our one and only daughter and sister you’ll always be
Beautiful Chaos 