Little Rumble

Yesterday, we said goodbye to our Little Rumble.

Rumble was a retired race dog, who we adopted seven years ago through the Newfoundland chapter of Greyhound Pets of Atlantic Canada (GPAC-NL). He spent the first three years of his life on the track, before retiring and finding his forever home with us.

Rumble has been such a big part of our family, and he has been a wonderful companion to Brennen. He was always so gentle and careful with him, and would walk along with his wheelchair, never pulling ahead or veering off to the side. Rumble was not just a good dog. He was the best dog, and we loved him very much.

Rumble has been on a steady decline these past couple of months. It started with him just acting a bit funny - staring off at nothing, pacing around the house at night, a lack of appetite, losing clumps of fur, and it seemed to go downhill from there fairly quickly. We brought him to the vet for a check about a month ago. They did some blood work, which didn't show anything obviously wrong, and we were referred to the Veterinary Specialty Centre, where they performed an ultrasound just last week. The results were inconclusive, meaning that, again, there was nothing obviously wrong.. but there was obviously something wrong. By this point, he had stopped eating altogether, and had lost a ton of weight. Andrew and I have been up with him all night, every night this week, and he was not doing well. We could not allow him to suffer any longer, and so we consulted the vet and determined it was time to say our goodbyes.

We are heartbroken, and feeling a tremendous sense of loss right now. Rumble was our boy. Our big baby.

Rumble loved to run, and we loved to watch him! He was in his element when let to run free. In his earlier years, he could fly like the wind, doing loops around us but always coming back to stop at our feet. He was built for speed - a canine athlete who could hit 45 mph in a double suspension gallop. Greyhounds are the second fastest animal on Earth, just behind the cheetah, and Rumble loved to show us what he was made of!

We are still a little in shock, not really believing that he is not coming home. There is an emptiness in the house, although it is full of activity. We miss our sweet Rumble. Our family is not the same without him, but we are better for having had him in our lives. He was the perfect dog for us - loyal and loving and super laid-back. He was a gentle giant who craved attention and would sit up on your lap if you let him. Rumble had no concept of how big he was, and would try to squeeze into the smallest spots just to be close to you.

I will miss his wet nose nudging my elbow. I will miss the sound of his heavy paws on the hardwood floor. I can imagine that for many years to come, we will be saying things like, "Remember when Rumble ate a whole cheese log off the coffee table?!" and "Remember that time Rumble got away from Mom and Dad's house?!" - To follow up on that, we were all out by the lake, and he wandered off. It was no time before I received a text saying, "Julie, is Rumble missing?" I'd hardly had time to realize that he was missing! Someone nearby saw a Greyhound walking casually down the road (by himself), and knew that wasn't right. They picked him up and called our friends at GPAC-NL. One of the members recognized him, and knew to contact me. Unreal. It was seamless - like the whole thing had been planned. My love goes out to our GPAC friends and family. We are so thankful for your support all these years. You guys do great work, and I am so proud to have rescued our sweet boy through such a compassionate organization.

Rumble had a wonderful life, and he certainly enhanced ours. We will miss him forever, and remember him often.

“A dog doesn't care if you are rich or poor, educated or illiterate, clever or dull. Give him your heart and he will give you his.” 

Wyatt's Stars

"The brightest stars burn but for a short time."

Wyatt Lane was only 6 months old when he passed away just before Christmas in 2012, but in his short time his ever-present smile touched the hearts of all who knew him. Born in May, Wyatt spent his first three weeks at the Janeway Children’s Hospital in St. John’s, Newfoundland before returning to his family in Port aux Basques.

In November, Wyatt, their "Little Star", returned to the Janeway where he was diagnosed with an extremely rare heart condition. Under the attentive care of the Janeway team, he fought bravely, never losing his signature smile, for 33 days.

The Wyatt’s Stars project is an initiative of his family to provide support to the Janeway Children’s Hospital to honor his memory and help ensure that other children can receive the same dedicated and loving care that he did in both his first and last days.

Each Wyatt's Stars ornament features:

Teddy Bears - A source of comfort for children, Teddy Bears are also closely associated with the Janeway Children's Hospital.

Angel Wings -  For our Angel children who could not stay with us longer, they also honour the medical angels - doctors, nurses and medical teams - who work tirelessly and with so much compassion to care for our sick children.

Stars - Wyatt was always our "Little Star", and stars represent hope and guidance, both for medical teams and families when children are sick. Also a symbol associated with Christmas, our "Little Star" passed away just a week before Christmas in 2012.

Now in it's fourth year, the Wyatt's Stars project continues to raise much needed funds for the Janeway Children's Hospital, and purchasing an ornament is a beautiful way to honour the memory of this precious little boy who was taken too quickly.

Losing a child has to be the most difficult, the most devastating and life shattering thing a person can ever endure, and I hope that Wyatt's parents - Yvonne and Jimmy can find strength in the outpouring of support that has come from their community and all across our province. Having the opportunity to love a child, even for a short time, is a gift and a blessing, and Wyatt was loved fiercely.

Visit http://www.wyattsstars.ca for more info. Click HERE to download an order form, or visit their Facebook page HERE.

Strong Wise Women

"Here's to strong women. May we know them. May we be them. May we raise them."

On Thursday evening, I joined author Kelly Buckley and Tracey Hennessey in celebrating the resilience of strong wise women. 

Strong Wise Women is a community inspired by conversations Kelly Buckley had with thousands of women who were navigating some of the most challenging life situations. Coming back to her home province of Newfoundland, Kelly was excited to share her own story and the resulting groundswell that spurred a global conversation with women about finding balance and purpose in the darkest of times. 

Kelly's own personal journey is one of healing after the unexpected loss of her son transformed her life. She says, "In the darkest of moments I rediscovered the simple truth of happiness, and living a joyful grateful life. So often, we wait for our circumstances to be perfect, "and then" we will be happy. But happiness is there for the taking for each one of us. We find it by giving thanks for the simple joys of life, even as you navigate through difficult times. I've dedicated my life to helping others rediscover their own unbreakable self, and realize that they can embrace a beautiful life in an imperfect world, one little thing at a time."

Kelly eloquently spoke of life, gratitude, compassion and resilience. She touched the audience in a way that only a strong wise woman can, and let me tell you, there were tears.

Kelly's definition of a strong wise woman continues to evolve, but it rests on these four pillars - We are perfectly imperfect. We are open-hearted. We are grateful. We are change makers.

Perfectly Imperfect: We see the beauty in our imperfections. Truly accepting and loving ourselves no matter what difficult decisions we’ve faced, questionable choices we’ve made or defeats that have broken us. Even with cracks in our armour, we know the heart, soul and spirit of who we are is still very much intact and deserving of love.

Open-Hearted: We know that love is all that matters. No matter how difficult the circumstances, we recognize that a closed heart prolongs the hurt and we understand that there’s always room for love.

Grateful: We choose to feel the goodness that surrounds us. We understand that no matter what we face, being grateful for even the smallest of things is the foundation to a happy life.

Change Makers: We make our little piece of the world a better place. As natural nurturers, we support one another in our daily lives; our families, our neighbours, our communities. We share our life experiences to help ease those around us and lift each other up.

 

It was a very moving experience connecting with these women, each with their own unique stories of hurt, courage and resilience. The room was filled with a tremendous sense of community, of belonging, and of understanding. It was beautiful.

Kelly described how she first started writing after her son's death. She wrote in order to process her loss and to transform her grief into gratitude. She wrote for self-discovery and for personal inspiration. She wrote to turn her thoughts into something concrete, and she wrote to share her perspective with other women who might be grieving in some way.

She says, "By writing about my experience, I was lucky enough to connect with thousands of other people who were looking, as I was, for a positive way to shift their perspective on life, even in the toughest of circumstances. Some had lost loved ones; some endured a painful divorce, or debilitating illness. So many I connected with had lost jobs, homes and stability. We all have our stories of pain, and we all just need something to hang on to, to let us know tomorrow may be a better day."

Kelly has since published two books, Gratitude in Grief and Just One Little Thing, and she has an incredible online community - Just One Little Thing - that encourages readers to take a moment each day to focus on one little thing you are thankful for, no matter what your life circumstances. Kelly says, "The idea of “Just One Little Thing” gently grew following the unexpected death of my son Stephen on July 4th, 2009. In desperate need of something to hold onto following the loss, I told myself that if I could find just one little thing to be thankful for, I would make it through the day. With each passing day, I was able to see that even though my heart was breaking, much goodness still surrounded me."

None of us are immune to loss, and we will all face challenges and adversity at some point in our lives. I recently went through an exercise where I completed a 'loss history chart', reflecting on losses I have experienced in my life, and how I grieved some of these losses. As you can imagine, this was a very emotional process. I find it hard to talk about, and I feel so much guilt in saying that the greatest loss of my life - greater than the death of a loved one, or the break-up of my marriage - the greatest loss for me occurred when my son, Brennen was born. You see what I mean? Oh My God. So much guilt. What a terrible, horrible thing to say. To clarify, I don't mean that Brennen is or was ever a loss - he is the greatest joy of my life. He is my sun, moon, and stars. He is my everything. The fact is, however, that when he was born and diagnosed with cerebral palsy, I grieved the loss of the child I thought I was going to have. I grieved the loss of the mother I thought I was going to be. It was a tremendous sense of loss at the time, and it was very difficult to come to terms with both being happy for the child that I had, and at the same time grieving the loss of the dream that I had for my family.

Kelly spoke of a similar struggle when her son, Stephen was first born as one of a twin - Stephen and Matthew. Stephen survived. Matthew did not. She says that from the very moment she became a mother, she learned that life is a balance of happy and sad, and that the key to living life to the fullest is in learning how to coexist between those two things. Kelly, you are a strong wise woman indeed.

Kelly is right when she says that happy and sad can co-exist, and when we allow ourselves to learn from pain and loss, we evolve into more compassionate human beings.

I am learning, always. I am learning every day about grace and hope and love and the power of community and togetherness. I am learning that the messiest parts of our lives are also the best parts of our lives. Relationships, marriage, parenthood - they are all messy and beautiful, both, never either or. I am learning to love better. I am learning to accept challenges and adversity.

I am a strong wise woman. I am.

Diane

A couple of years ago, my beautiful friend Diane Coffin wrote the story of her little boy for my Tulip Tales series. Benjamin was just three years old at the time, and she wrote about his condition and how it affected their family. Benjamin is similar in a lot of ways to my son Brennen, and I could certainly relate to her when she said things like, "There have been many ups and downs on our journey. We have had some really dark days when it is hard to believe that there is a light at the end of the tunnel. Thankfully, there are also some really great days where people rally around us and inspire us to keep fighting. Sometimes it is anything but easy to raise a child like Benjamin, but one look into his beautiful eyes melts my heart."

You can read Benjamin's story HERE.

Diane was always very positive and upbeat. She poured her heart and soul into her children, and went above and beyond to advocate for her son, Benjamin. She was a fighter in every sense of the word, and she had no idea, at the time, what was in store for her family.

Diane passed away yesterday, after a short but heroic battle with breast cancer. I am absolutely heartbroken at the loss of my beautiful friend, and I just can't even begin to think about what this must mean for her husband and children.

People say things like, "God won't give you more than you can handle."

Bullshit.

That's like saying, "It's ok that your wife died. You can handle it." "It's ok that your child has a life threatening condition and will never live any sort of 'normal' life. You can handle it." No. These are not things that people can handle.

I cannot believe that someone would look at a family like Diane's and say, "Let's give them more hard things. They can handle it."

It is not fair, and some families just have too much heavy stuff on their plate to even be considered 'manageable'.

I used to believe, when Brennen was younger, that he was my one 'hard thing' in life. I thought that I wouldn't be affected by things like cancer or disease or other devastating health issues because this was my hard thing and that was enough. Well, obviously it doesn't work like that. There isn't someone up there evenly doling out hard things, who stops when he thinks you've had your fair share. There is nothing fair about it. Life is completely unfair, and unpredictable, and undeniably cruel.

Tomorrow, our close-knit group of Moms - parents of children with special needs - will gather together at Diane's visitation. We will hold each other up, like we have done so many times before, but never in a situation quite like this. We have been there for each other through all of the things that come with raising a child with a disability - appointments, admissions, surgeries, sickness, close-calls, and even for the tragic losses of some of our children.

I always thought there could be nothing harder than that. How do you come to terms with the death of a child? How do you go on after something like that? And perhaps, there is nothing more difficult, but thinking of Diane and her family and how they will carry on without her is really tearing me up right now. The thought of her saying goodbye to her children, and for her to know what she was leaving behind is almost unbearable.

Diane faced her battle with grace and bravery. She has given me hope, in a weird way, that one day I will be able to face my biggest fear just as bravely as she did.

It wasn't until I had a child of my own that the fear of death - both for me and him - became something really heavy. Andrew and I have spent countless hours talking about life, and loss, and children, and family, and the what-ifs. It is a LOT to think about, but what we always come back to is love and human connection. Really, when we strip everything else away, that's always the one thing that's left. Our love for each other, and our relationships in this life.

I know I will hold my loved ones closer, and cherish the time I have with my precious little boy. I am thankful for the support of our group of Special Needs Moms, and the strength we gain from each other in times of sadness. But, what can we do in times like this? What can we do to show our love and support for one of our dearest friends?

I think something each of us can do to honour Diane is to work on being a good person, on living a good life, and to work on making this world a better place than it was when we arrived. At the end of the day, it's sort of all we can do, isn't it? Be the best mother, the best friend, the best partner or spouse we can be. Love your kids. Teach them to be grateful. Live by example. Make the choice to be happy, to be compassionate, and to look out for each other.

We all have it in us to be able to improve the world, to make it better and brighter, and Diane did exactly that. She was a bright light in a world that holds a lot of darkness. There are so many people who's lives she touched, and so many people who are grieving her loss right now.

We will never forget you, Diane. You are an inspiration. You are loved, and you can be sure that your children will always know how much you love them.

Tulip Tales: Billy

Today's 'Tulip Tale' is an especially difficult one. We know as parents that pregnancies don't always go as planned, but some things you can never quite prepare yourself for. Please take the time to read Adina's story. It is heartbreaking, yes, but it tells so much about what it means to be a mother, and the terrifying beauty of parenthood.

*****

The majority of my life, I had myself and my entire circle of friends and family convinced that I wasn't having children. Ever. Then, at the age of 33, something in me changed and my heart yearned for a tiny human. I wanted to be a Mommy.

I was very fortunate to become pregnant after just 4 months of trying. The day after my 34th birthday, I saw the positive sign on my test. We were beyond excited! Thrilled was more like it! My doctor confirmed it two weeks later. And set up my first ultrasound for May 30th. That put me at 19 weeks. 

It seemed like an eternity for that day to arrive, and when it did I was a nervous wreck, but also anxious and excited to find out the sex of the baby. Lying on the bed at the ultrasound department, holding Will's hand and staring at the screen, waiting to see the first ever glimpse of our baby, and to hear the heartbeat for the first time is a moment I will never forget. 

And then I heard the words "It's twins!" Wait? What? No that can't be right. I was bawling. I wasn't expecting this nor was I even remotely prepared to hear those words. 

Before this news had time to sink in, I heard "Oh no. Oh no. Oh no." My heart sank. What was she seeing? What was wrong with them? And then, "There's a third baby. It's triplets!" I couldn't breath. I couldn't look anymore. I covered my face and turned my head away, sobbing. Will was silently leaning against the wall, unable to move. Mom came to me and kissed my forehead and whispered "It's ok, it'll be ok."

But it wasn't ok. 

After several hours of lying on my back and several different people looking at the babies, we were given the most horrific news of the day. 'Baby A' was really sick and had very little amniotic fluid. A club foot could already be seen. We learned that the position the baby was in made it impossible to determine the sex, and because there was so little fluid, the chances of turning was slim. So 'Baby A' remained Baby A. 

We were told that Baby A had a congenital heart condition called Hypoplastic left heart syndrome. There was no chance of survival. But every day that Baby A stayed alive gave the other two babies a better chance of surviving. 

How in the name of everything good, could this be happening? How could a day that started off being so exciting end in such despair? How was I going to get through the rest of this pregnancy? What did I do wrong? Why, why, why????????

Regular appointments at the maternal fetal assessment clinic became routine. Every time I saw three beating hearts I let out a sigh of relief. We're good for another day. The babies have another day to grow and develop. It was nerve wrecking and scary and beyond worrisome.  

Every day I woke up with the thought "Is today the day that we lose Baby A?" I hated thinking it but couldn't stop the thought from entering my mind. But then I would see them on the screen and for a brief moment I would allow myself to feel ok and excited again. I would lay there and watch Baby B and C, both boys, be so active and I would pray that they would be ok.

I lived as normal a life as I could. I rested as much as I could. And I tried to push all the scary thoughts away and enjoy being pregnant - a near impossible task. And then, during a regular appointment, I was told that my water had broken and I was admitted right then and there, on strict bed rest. I was 24 weeks.

On the morning of June 11, 2015 at 25 weeks plus 3 days, I woke up at 4:00am with cramping and spotting. I knew deep down that something wasn't right. At 6:30am, after an internal exam, my fears were confirmed. I was two centimeters dilated. Once again I was crying, they're too little, it's too early, no, no, no!!!!!!!!!!!

I was told throughout the day that I wasn't necessarily having contractions. I could have a UTI and that this was the cause of the cramping. I was offered Tylenol for the pain. The cramping became more intense as the day went on. My mom was timing them. They were getting closer together.

But still I was told it wasn't labour.

At supper time I was brought down to the case room just so I was close to the resident on call that night. Still, no one would say the words "You're in labour." I accepted the offer of morphine for the pain. I was hooked up to a fetal monitor to keep an eye on the babies. They were all doing ok. No one was in distress. The hours ticked by. I lost track of time. I was in and out of it. Breathing through the pain. Finally, the words that I had known since the time I woke up, were uttered. "You're in labour and were going to try and stop the contractions."

More meds were given to me. They didn't work. I was in full blown labour. They waited too long. I was given an epidural. Sweet relief. I slept in between contractions. I savoured the wetness of ice chips. And then I felt the pressure. I told the nurse who ran for the doctor. Billy/Billie was on the way and was breached. I was scared out of my mind. I knew what was happening. I knew how little they were. I knew what this meant and there wasn't one thing I could do to stop it. My babies were coming. I was going to try having them naturally but was prepared for a c section just in case.

Baby A - Billy (a boy!), was born at 2:49 am June 12, 2015. Weighing just 1 lb 3 ounces. He was held up for me to see and then rushed through the doors into the waiting hands of the NICU team. My water broke again and Baby Boy B - Zander, was born at 2:56am weighing 1 lb 9 ounces. I heard a tiny sound, a "mew", and then he too was whisked away.

Then nothing. No more urge to push. Baby Boy C didn't want to come out. Dr Pike, the ob on that night, attempted to guide him down but I protested in a very loud way. The pain was excruciating. I was given more epidural but even that didn't help. The pain of the doctor's arm inside my body was too much for me to bear. A third epidural was given and a stern talk from Dr. Pike, who told me that the baby needed to come out NOW. I took a deep breath, grasped the hands of my Mom and the anesthesiologist, nodded at the doctor, and breathed through the pain of my baby boy being pulled out.

Lyndon was born at 3:29am and weighed 1 lb 4 ounces. Once again my baby was rushed away. 

I lay there afterwards in shock. Boys.. 3 boys!
Where were they? 

Are they ok? 

When will I see them?

I had just given birth to three babies and I only got to catch a glimpse of them. I never got to hold them, not even a touch.
My heart ached. It wasn't supposed to be like this.

I was wrapped in a heating blanket. My teeth were chattering uncontrollably. My body was shaking. I was tired. Physically and emotionally. I was brought back to my room and I tried to sleep. 

A few hours later, a nurse came and asked us if we wanted to see Billy. My eyes filled with tears and my heart broke. Every parent's worst fear was about to happen. The first time I was to hold my baby boy would also be my last.

He was wrapped in plastic and was wearing a little green hat. He had wires all over his little body and a breathing tube down his throat. He was perfect. He was laid in my arms and I just wanted to stare at him and freeze his image in my memory. I wanted to remember every single detail of his sweet face. I told him how proud of him we were for being so strong and brave. For hanging on long enough for his brothers to grow strong. He was our hero. Our precious baby Billy. And then, though I could barely speak, I sang to him the song I sang every night while they were in my belly - 'You Are My Sunshine'. Because through all the dark moments of my pregnancy, those boys were the sunshine that got me through. 

The priest came and we had him baptized. As he was being blessed, Dr. Templeton came to me and said the words that broke my heart in a million pieces. "He's gone." Two little words that you are never prepared to hear. "He's gone." He had his little hand wrapped around my pinkie. I didn't want to let him go. I gave him a final kiss and passed him back. And then I was wheeled away.

My heart aches for Billy every day. I wonder what he would be like. What kind of personality he would have. What he would look like, although knowing that he and Lyndon were identical twins helps answer this question. I love him and miss him but I am very grateful to have met him while he was alive and that he was lovingly tucked in my arms when he took his last breath. Billy earned his wings and he gracefully flew home to be with the Angels. He is with us always, and I know he is still guiding and protecting his brothers as they continue their ride on this roller coaster we call life. 

Now and forever, Billy, you are my sunshine.

 ***** 

Adina, my heart breaks for your loss. You have walked a road that most hope never to go down. Words are failing me right now, so I'll simply say thank you for sharing your story. You are one strong mama, and I have so much respect and love for you and your beautiful boys.

I know it's hard to believe it, but sometimes the greatest gift the world can give you is the life you didn't expect. Zander and Lyndon just recently celebrated their first birthday, and we look forward to hearing all about how they are doing! (Another blog post to follow).

Baby Riggs

A couple of months ago I received a beautiful email from a Mom whose young son had just been diagnosed with CP.

Jennifer said: "My baby boy was born 15 weeks early, weighing in at 1lb 8.5oz on September 22, with his due date of January 6, 2016. He was almost an hour without breathing when he was born, and on his second day of life, he had 2 brain bleeds - one on each side of his head. Yesterday we were told that he would have severe cerebral palsy. When looking online for support groups in this province, I found your site. I read each and every "Tulip Tale", and each one made me realize just how lucky we are to have Riggs, and how special he really is."

Jennifer and her husband, Steve had tried for ten years to get pregnant, before they were blessed with their precious baby boy.

Just over a week ago, on his six-month birthday, Jennifer wrote: 
"6 months ago we were in complete shock, and upset. We didn't know if Riggs would survive, he had a very, very hard start at life. The last 6 months have been a very bumpy, rough road, but every single day he amazes me more and more. Riggs you are mommy's entire world. You are who you are supposed to be, and you have given me the most blessed life lessons."

I was saddened to learn that baby Riggs took his last breath last night, in the arms of his Mommy and Daddy, and surrounded by his loving family.

Jennifer, I do not have the words to tell you how incredibly sorry I am. I cannot even begin to imagine what you are going through. I know that you will likely live with the pain of this loss every moment for the rest of your life, but I hope that you will also live with the joy and love that your sweet baby brought to you. You will always have that love, and the bond you shared will never be broken.

Remember your boy. Remember every detail, every expression and every sound he made. Celebrate his life, and know how many lives he has impacted.

Riggs was a fighter and a hero. Jennifer said, "He fought harder than anyone I have ever known, and I lost both of my parents to cancer."

Losing a loved one, someone who made up your whole world, will burn you into a million pieces. There will be darkness, and you may be overwhelmed by the rawness of emotion. But, there is also light in the process. If you give yourself permission to mourn, knowing you will rise from the ashes, it will allow you to break and feel and truly process the unimaginable loss. And this allows for hope.

Jennifer, I wish you and your family much love, strength and hope. May your son's memory always be a blessing.

My sincere condolences to your family.