But first I will make you strong

My baby boy turns 12 years old today!

We spent the last ten days in the hospital, keeping Brennen comfortable with pain medication and going through all of the pre-op assessment and tests required before his surgery next week.

They did blood test after blood test to check his white blood cell count and hemoglobin levels. He had to be gradually weaned off of his seizure medication because it posed a bleeding risk for surgery, and he was started on a new one that seems to be working well with no negative effects, so far. We met with the anesthesiologist who will prepare him for the procedure, and the team from the PICU, who will be ready and waiting for him afterwards.

He had multiple x-rays and was injected with a radioactive dye for a bone scan in nuclear medicine. He had an echo-cardiogram as well as an EKG, which showed that his heart is good and strong (and full of love and life, which we already knew!)

We were able to take Brennen home for the weekend, to celebrate his birthday and to enjoy spending some quality time with him before his surgery. He will be readmitted on Monday, and surgery is scheduled for Tuesday.

Today we will celebrate our boy. Not with the biggest party or the most elaborate decorations, but by surrounding him with so much love that he never ever questions his place in this world. He will know that we are beyond overwhelmed with gratitude for the day that he was born, and he will feel how immense and deep the love of our family is for him.

We will hold him close and thank our lucky stars that he is here and he is ours. The next couple of weeks will be challenging, and Brennen will be in the fight of his life, but he is strong, and he will make it through. Brennen's disability has become second nature to us. It is a part of our lives that has become so intricately woven that it is impossible to separate from anything else, and we like it that way. We can handle it. But at times like this, the fear takes hold and brings back all of the feelings and emotions from when he was first diagnosed, and it's fucking terrifying.

My heart breaks because he has to go through this. The worry and sadness are suffocating at times, but I know that he is in the best of hands and will be back to himself before we know it. He needs this surgery, there is no question. He is extremely uncomfortable, and sitting has become impossible for him. The curve in his spine is severe, and poses a risk to his internal organs if left uncorrected, so we really have no other option.

I am so thankful to our family and friends who have been so supportive and helpful these past few weeks. I am thankful that we have so many people to count on and who are looking out for us right now, and I am thankful for my beautiful boy, who despite tough circumstances, still has a sparkle in his eye.

Happy Birthday, Brennen. I love you, I love you, I love you.

"You're gonna be happy," said life, "but first I will make you strong."

Celebrating the Janeway!

On August 9th, 2016, the Janeway Children's Health and Rehabilitation Centre will celebrate its 50th birthday! That's 50 years of providing quality pediatric health care services to the children of Newfoundland and Labrador!

I'm sure that everyone in our province can tell a story of how the Janeway has touched their lives, or why the facility is so important and special to them. The Janeway hospital was originally located in Pleasantville, in a building that once housed the American military hospital at Fort Pepperrell. I remember visiting the old Janeway as a child - never for anything overly serious, just a few typical childhood injuries. We were very fortunate to not require the services of the children's hospital on a regular basis, but my family always had the peace of mind in knowing that it was there if my sister or I ever needed it.

In 2001, Eastern Health opened a new, state-of-the-art building as part of the Health Sciences Complex, and this became the home of the new Janeway Children’s Health and Rehabilitation Centre.

Now that I have my own child, we are 'frequent flyers' of the Janeway. Brennen has been well cared for by many of the doctors and staff, and he has had some wonderful experiences with members of the Rehabilitation team. We have become close with the professionals who have treated Brennen over the years - the nurses who have held my hand through some really challenging moments, and the therapists who have lifted my spirits at times when everything just seemed so overwhelming.

To celebrate this big birthday, Eastern Health hosted a celebration for children who are currently or have previously been cared for at the Janeway. The party was a pirate theme, and it was so great to see so many of our friends there to celebrate the occasion! There was face painting, singing and dancing, and lots of fun photo opportunities!

The St. John Ambulance Therapy Dogs never miss a party!

I am so thankful for the supports and services we have received from the Janeway. It has been a second home to us on many occasions, and it is a place where we truly feel that Brennen's health and safety and our best interests as a family are considered first and foremost.

The families and friends we have met at the Janeway have become such a big part of our lives. Friends that we met early on in our journey - whether from being in the right place at the right time, or just being in the same place A LOT of the time - have remained close friends to this day. We have bonded over our special children. We have a lot in common, and we understand each other. We are the same in the fact that the love we have for our children is greater than the fears and diagnosis, and that is a powerful bond.

It was an honour to be able to celebrate this milestone today with the staff and patients of the Janeway Children's Hospital.

Happy Birthday, Janeway! Here's to many more years of exemplary patient care, and a future full of possibilities for the children of our province!

Here is a slideshow of some of Brennen's Adventures at the Janeway:


Brennen's Adventures at the Janeway by Slidely Slideshow

For your Birthday.. A New Cast!!

We had an unexpected visit to the Emergency Room last week.

They called me from school one day, saying that Brennen was very upset and they weren't sure what was going on. Andrew went to pick him up and brought him home, and I knew as soon as I saw him that something was seriously wrong. He was screaming in pain, and was holding his legs in a very unnatural way. He wouldn't let me touch him. My first thought was his hip - either the one he had surgery on already (see HERE), or perhaps his other hip had become dislocated. Neither option was going to be good. I rushed him to Emergency, where they brought us in immediately. He was given morphine for pain, and we were sent straight up for x-rays.

It turns out, his hips are fine (that's great news!) but there is a fracture in his right foot (the talus).
How did it happen??! We have no idea.

He was much more comfortable as soon as they immobilized and braced his foot. Brennen was admitted to the hospital for a couple of days so they could monitor and control his pain, and watch for any signs of swelling or infection. Andrew and I sat by his bedside, watching him sleep. Watching the monitors. Listening to the beeps and the buzzers and the alarms going off when his oxygen levels would drop or his heart rate would increase. It is so hard to see your baby in pain and not be able to take it away from him. To feel so completely powerless is the absolute worst. My heart has been broken, crumbled from worry and exhaustion, but we will carry on. Always. And with love.

I have so much respect for all of you warrior mamas who spend countless days and nights in hospital rooms with your precious babies. I can't even imagine it. Though we have had some trying times with Brennen, and plenty of hospital visits, we have been very fortunate not to have too many lengthy admissions.

Brennen (and our whole family, really) received the best possible care from doctors and nurses who understood that their job was not only to make people healthy, but to strive to make them happy, comfortable, safe and relaxed. We couldn't have asked for better treatment. The thing is, hospitals are always unsettling when you're there for your child - even if you know everything is going to be ok. 

I am feeling deeply grateful here today. After a scary time of not knowing what was making Brennen so upset, and blood tests and x-rays and heavy pain medication, we can breathe a sigh of relief that it wasn't anything more serious than a broken bone. I am grateful that my boy is as strong as he is. I am grateful for the comforts of home and the life we have right now. I am grateful for the support of my family. I am grateful, too, for the challenges we have faced and all that we have overcome together.

Brennen had a temporary cast for almost 2 weeks, and we had to go back to the Janeway today - on his birthday - for more x-rays and to get a shiny new red fiberglass cast. I can think of a million other ways I would rather spend his birthday, but life had other plans for us, once again, so we are rolling with it.

Today is Brennen's 11th birthday, and we will celebrate our boy like we do every day - surrounding him with love and laughter and people who make him happy.

Eleven!! Holy Crap. It has been a wild ride, but we are loving every minute! I feel like today is my birthday. I know it's not, but it sort of is.
Thank you, Brennen, for bringing me into this world!

Happy Birthday! I love you!

Today, and for the next three weeks, Brennen will be keeping me on my toes.. while I am trying to keep the pressure off of his! 

Celebrating Love

We had Brennen's 10th birthday party on Valentine's Day.

I can't think of a more appropriate way to celebrate such a special boy than with a big ol' celebration of LOVE, surrounded by our closest family and his dearest friends.

It really was magical to have everyone together in our home. Friends who are with us on this crazy journey - some new, and some who have been there from the very beginning, all brought together by our love for one little boy. I couldn't help but stop and realize how important these people are to us. It was an honour to celebrate with all of you. We are so thankful to have you in Brennen's life.

It was such a joy to watch him take in all of the excitement of the day. The balloons, the cake, the music. Sounds of laughter and love and parents and kids, and knowing that it was all in celebration of him. I struggled to keep it together, when I wanted to cry tears of joy and pride watching his eyes light up, seeing his big bright smile, and knowing that we were celebrating not only the joy that we are able to bring to him, but the incredible amount of joy that he brings to all of us.

Here are some photos from Brennen's 10th birthday party.

Truly, we are blessed.

The details:

Brennen's cake was made by our friend Kim Churchill at Carter's Cupcakes

Heart-shaped Valentines by Minted 

Brennen's star crown by Fancy Pants Kids 

Children's caricatures by Julie at Sassy Tuna

Photos by Nate Gates