Celebrating the Child I Have

 “Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher who turns you into the person you are supposed to be.” - Joan Ryan, The Water Giver

I love him so much. Every inch, and every detail. Sometimes I can't believe that he belongs to me. I am so fortunate. Contemplating how he has changed my life, how he needs me, and how I need him - it overwhelms me. Brennen, you are amazing, and I am so proud to be your Mom.

photos by Nate Gates

A Picnic in the Park

Stella's Circle is a leading social services agency here in St. John's that offers programs for adults who have barriers to full participation in the community, including poverty, homelessness, and health issues. Stella's Circle offers help through counseling and support programs, emergency shelter and affordable housing, as well as education, training, and employment opportunities.

The Hungry Heart Café is an initiative of Stella's Circle that helps vulnerable adults access careers in the food service industry so that they can achieve independence and meaningful employment. All revenue generated by the Hungry Heart Café goes right back into the operation to fund employment training.

This Summer, the Hungry Heart Café is offering 'Loop Bag' picnic lunches (inspired by the new skating surface, 'The Loop'), and we were so excited to try them! Andrew and Brennen and I enjoyed a lovely picnic this afternoon in Bannerman Park, breathing in the sweet Summer air and just appreciating our gorgeous surroundings. Seriously, how beautiful is this park right now?

Andrew had the Ham, Gruyere & Avocado on Ciabatta with a chick pea salad, a brownie, and iced tea. I had the Vietnamese Rice Noodle Salad with Mint and Cilantro Dressing, topped with a Cinnamon Pork Paté and a cream cheese square. So delicious!!

I love that Stella's Circle helps individuals by combining education with natural supports, providing a fully inclusive experience aimed at preparing individuals for employment and independent living. They ask questions like, "What is it that you want to do?" and "How can we help you get there?"

I am so thankful for the questions that they are asking, and the great work they are doing to respond to the needs of our community.

People are capable of having a very full life, if you let them, and give them guidance. It starts with accepting others and ourselves as we are, and learning to thrive as unique individuals.

Stella's Circle and the Hungry Heart Café are opening hearts and minds, encouraging people to be tolerant, compassionate and empowered. They acknowledge the fact that everyone has the right to be who they are without judgement and without shame. Everyone matters. Everyone's uniqueness contributes to our community, and that's exactly the type of community I want to live in.

Click HERE to reserve your Loop Bag Picnic!

*****

After our picnic, we took a walk around the grounds of nearby Government House, including a visit with the horses of the RNC Mounted Unit!

Such a fun day! Brennen was exhausted by the end of it, but we were so happy to be able to get out and enjoy the sunshine! 

The forecast is calling for continued warm temperatures, and we will be making the most of it. Happy Summer!

This boy..

“... and she loved a boy very, very much - even more than she loved herself.”

― Shel Silverstein, The Giving Tree

There has been a lot of sadness lately - with the passing of a dear friend, the many tragedies that are happening in our world these days, the general stresses that come with raising a child with a disability, and thoughts of the future and what it might hold for us. It can be hard to put a positive spin on it, and to find a silver lining. There are no magic words to make the world a better place. I have to remember, though, that this is my life, and I am grateful for it. All of it. The beauty and the pain, and the ever-expanding definition of what motherhood truly is.

This boy. He reminds me that true joy is experienced most often in the regular old every day moments - the hard moments, the beautiful ones, and the moments in between where I sometimes forget to notice it. There is a lot of good out there, we just have to keep it in focus. I have to work really hard at that, but this boy shows me every day how much good is in our lives, and just how good that good is. 

Thanks so much to Melissa Pelley for these beautiful photos!

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.

Canada Day

July 1st is Canada Day, but it is also a day of remembrance here in Newfoundland and Labrador. Every year we remember the soldiers who fought at Beaumont Hamel, and this year marked the 100th anniversary of the battle that saw hundreds of Newfoundland soldiers slaughtered on the French battlefield. 801 Newfoundland Regiment soldiers went into battle on July 1st, 1916. Just 68 answered roll call the next day.

Andrew and I paid a visit to the Garden of Tears - a visual memorial to members of the Royal Newfoundland Regiment who died in the First World War. The lawn outside of the St. John's Arts and Culture Centre is covered in 1,500 forget-me-nots - one for each Newfoundlander who died in the war. The flowers symbolize and celebrate the lives lost, and serve to honour the memories of the fallen soldiers.

Of course, we also took the time to celebrate Canada Day, with a party at my parents' house! 

The weather was just right, and we enjoyed the day with good food, good music, and great friends.

I feel so grateful for occasions like this one that bring us all together, and I have so much pride and gratitude for the fact that we live in a country where we have the privilege to enjoy so many freedoms.
Happy Canada Day!! I hope you all had a safe and happy weekend!

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).