Welcome to Holland (Nurseries)

This weekend involved a bit of trial and error for us. Ok, a lot of trial, and a lot of error. It was the first long weekend of the Summer, and the weather was beautiful, with temperatures in the 20's and the sunshine streaming down. It's the type of weather where us Newfoundlanders get sunburned quickly, because we are just so excited to see the sun, we spend all day out in it without the required SPF.

With such a short window of Summer weather, we feel obligated to enjoy outdoor adventures as much as possible, and we had big plans for this weekend. On Saturday, however, Andrew woke up with a cold, so Brennen and I headed out to Bannerman Park to take some pictures. It was beautiful and sunny and warm, but he wasn't really feeling it, so we made it a quick trip. Saturday afternoon, Andrew was feeling a little better, so we decided to drive up Signal Hill and walk the trails around the Geo Centre. Again, it was beautiful up there and there were loads of families out enjoying the sunshine, but Brennen didn't like the wind, so we headed home.

On Sunday we planned to take Brennen out to Petty Harbour - a picturesque little town on the Avalon Peninsula. We have been out there many times before, and we just love to walk around and take in the views, and the salt sea air. We packed up our things (snacks, drinks, sunscreen..) and drove out around the bay. As soon as we arrived in Petty Harbour, we noticed that it didn't seem to be as warm as it was when we left St. John's, and it was pretty windy. Brennen wanted no part if it. We did manage to have lunch at the Water Shed Coffee Shop out there, which was really lovely, but then we knew it was time to get Brennen home.

It is frustrating, I have to admit. There are so many things that we would love to be able to do together as a family, and we see so many families and young children out enjoying the parks and all of the attractions that the city has to offer, now that the kids are on Summer holidays, but it's just not always that easy for us. Brennen doesn't like the wind. Or the cold. Or if it's too sunny. Or too loud. Or too busy. Or too anything. I know that we just need to stop putting too much pressure on ourselves, and to just go with the flow. Brennen dictates our schedule and our plans, so if he is done, we are done. That's it. We will keep trying, and we will have some great days, but not all of our outings are successful.

Monday (today) was a holiday for Discovery Day, and we had planned to give Brennen a break. He was going to hang out with Nanny and Poppy for the day while Andrew and I went for a hike on the East Coast Trail, but we woke up this morning to pouring rain. Honestly. It was warm, but calling for showers all afternoon, so we changed our plans. We thought, where could we take Brennen to enjoy a couple of hours where it is out of the rain, and the wind, and is temperature-controlled?!

We went to Holland Nurseries! It was like a bloody sauna in the greenhouses, but there was no wind or rain, and the flowers were out in full bloom and it was beautiful. Brennen didn't even hate it!

These beautiful blooms were a welcome pick-me-up, and the skies even cleared while we were there, allowing us to get outside and enjoy the fresh air. See? It's not all bad. We will carry on, making plans, making changes, going with the flow, without too many expectations, and without so much pressure for everything to be perfect. It is difficult sometimes, and in the challenging moments it can be hard to remember that everything is usually fine.. and manageable.. and pretty darn perfect.

Stroll and Roll 2016

Today, we strolled and we rolled for Easter Seals! This was the 5th annual Stroll and Roll, and our family has participated every year! (I wrote about previous years HERE and HERE.)

The Stroll and Roll was developed as a fundraiser for Easter Seals, and also as a way to bring together a community of families, parents, caregivers and volunteers, all united by a common goal - to love and support children and youth with disabilities.

It is a wonderful feeling to be surrounded by people who "get it". Moms and Dads, siblings, grandparents, teachers (Brennen's awesome teacher came today!!) and friends, offering support and encouragement because they love our children. It is hard not to. These kids are amazing, and I am so grateful to be blessed with such a wonderful support system who allow us to live this life in the best way we can.

I am thankful to everyone who sponsored Brennen this year. Really. Thank you!! All money raised goes directly into Easter Seals programs and services for persons with disabilities, and those programs are life-changing. We know from experience. Brennen has been involved with Easter Seals since he was very young, and I can't say enough about the quality of the programs and the opportunities that are made available to our children.

Here are some photos from today!

Thank you again to everyone who sponsored Brennen, and for all of your support over the years. Life is a journey, and we have come a long way in learning about challenges, acceptance, and most of all, love. Thank you for being part of our journey. For listening and contributing and caring.

If you would still like to donate to Easter Seals, you can do so HERE.

Miracles Can Happen

We love to watch the Janeway Telethon as a family. We watch to see the familiar faces of people we know - the doctors and nurses, surgeons and therapists. And we watch to see the touching stories of hope and healing, and the introductions to the Janeway "Miracle Kids".

Ava Mooney was one of this year's Janeway Miracle Kids. A while back, I shared Ava's story HERE.

Ava was born with Arthrogryposis Multiplex Congenita, a condition in which the joints become permanently fixed in a bent or straightened position. For Ava, this condition is quite severe. The joints of her arms, hands, elbows, wrists, legs, knees and ankles are some of the areas that have been affected, allowing her very limited mobility.

When we first met Ava, we didn't know anyone else with her condition, so we really didn't know what to expect from her, but it became clear very early on that she was a very determined little girl. She found ways to get around, and to do the things that she wanted to do. After months and months of working with Ava, and supporting her through surgeries and therapies, she took her first independent steps with Andrew and I. We were completely amazed and so excited for her! I was happy to have captured some of her first steps on video, as you can really see how happy she is, and how proud we all are!

Here is Ava's miracle story:

Working with children with special needs is both challenging and rewarding, and it is a learning experience for us each and every day. It is a tremendously rewarding role that we have as educators and child care providers, and we don’t take that for granted. We have had the incredible opportunity to witness some really special moments with our children, and we are honoured to be a part of their success stories.

We have an amazing little group of children here at Little Tulips, and we are thankful for the opportunity to work with each and every one of them!

It is exciting to think of what the future might hold for Ava. There is nothing stopping her now!

Our City's Most Accessible Hotel

This past weekend, Andrew and Brennen and I had the wonderful opportunity to stay in our city's newest and most modern hotel - The Holiday Inn Express & Suites.

The Holiday Inn Express is a uniquely accessible hotel, and is the Children's Wish NL Chapter's hotel of choice for Wish families, as they go to and from their Wish destinations!

Located directly at the St. John's International Airport, the hotel is easily accessible from the Trans Canada Highway, and is just minutes from Stavanger Drive, or just a short drive away from vibrant downtown St. John's. The convenient location is perfect for anyone with an early morning flight, or a stop-over in the city.

I am always excited to learn about the great things that are happening with accessibility in our community, and I was super excited to take this opportunity to learn about the accessible features of this beautiful new hotel!

Andrew and Brennen and I packed our bags and checked in for the night. We had so much fun, pretending to be tourists in our own city!

This particular Holiday Inn is a global icon with local flair. The hotel lobby is full of local artwork that was custom made for the space.

Our accessible room had a king size bed, and a washroom with a wheel-in shower. Our room connected to another room that also had a king size bed, so it was essentially a two bedroom suite with two washrooms. We had tons of space! I honestly feel like we could have moved into that suite and stayed for a long time!

After settling in to our room, we just chilled and hung out for an hour or so before hitting the pool. The indoor heated pool has an automated wheelchair lift. We all got in for a little swim before dinner!

The hotel also has an on-site health club with state of the art equipment.

As the hotel is brand new, they do not yet have an on-site restaurant, but they are in the planning stages to build a restaurant in the parking lot. They do offer a complimentary hot breakfast buffet each morning, and they have delivery options set up with a number of local restaurants as well.

We ordered dinner entrées from Boston Pizza... so good!

I just love this family of mine. A friend of ours told us recently that we can make an adventure out of anything, and that is the truth! It can be daunting at times. Just the thought of packing up your family when you have a child with special needs, and staying in an unfamiliar place, gives me all kinds of anxiety, but we know now that the Holiday Inn Express is fully accessible and able to meet all of our unique needs.

The owners of the Holiday Inn Express & Suites have gone above and beyond the minimum requirements to ensure that their hotel is fully accessible for all of its guests. Not only is it "wheelchair friendly", but they have incorporated many special features to meet the needs of people with disabilities other than just mobility limitations.

We were pleased to see a good number of accessible parking spaces with priority location in the parking lot, and step-free access to the main entrance of the building.

The hotel has six accessible rooms, two of which have wheel-in showers with wall-mounted shower seats, and grab bars in the washrooms. The bathroom in our room had a sink that you can wheel under (see photo of Brennen above!), and a beautiful sliding door with a large handle to accommodate people of varying heights.

Our room had plenty of space to maneuver Brennen's wheelchair, with lots of extra space on either side of the bed. There were mid-height light switches and power outlets, and a visual door knock indicator in both the main room and the bathroom. A doorbell outside of the room made a sound and flashed inside, to accommodate both hearing and visually impaired individuals.

Each person with a disability will have unique needs, but any building or room that is accessible to persons with disabilities will be accessible to ALL users. Providing full and equal access is essential when trying to make an inclusive society a reality, and The Holiday Inn Express has considered the needs of most everyone in seeking to create a hotel that is usable by the greatest number of people, regardless of ability.

Our overnight stay exceeded our expectations. The friendly staff were super helpful, and we couldn't have asked for better treatment. We are so grateful for this fun opportunity to stay in this beautiful new hotel. Thank you to Holiday Inn for hosting our family. We had such a great time!

Tulip Tales: Ryan

You guys! I've got the sweetest little boy to introduce to you today! 

At just six months old, baby Ryan has already become a teacher in the lessons of unconditional love and acceptance. Ryan is the pride and joy of his Mom, Dad and big sister, and he has captured the hearts of his family and friends.

Ryan's Mom, Courtney shares their story:

*****

I had a very normal, healthy pregnancy. I started taking prenatal vitamins months before I conceived, as my husband and I were trying for a baby. I ate well and exercised. I believed I was going to do everything I could to make sure this baby growing inside of me was healthy. Throughout my pregnancy, I experienced extreme morning sickness and at 5 weeks I was prescribed Diclectin. After a few weeks with no improvement, I began trying every non-medicinal option to help ease the sickness. Herbal teas, ginger, acupressure.. you name it, I tried it. Finally when I was eleven weeks pregnant, I was prescribed Zofran as a last resort. To my knowledge, Zofran is typically prescribed to chemotherapy patients to help with nausea, and is very rarely prescribed to pregnant women. But trusting my doctor, I started a very low dose of Zofran and was told that with the dose being so low, I wouldn’t have any worries about it affecting the baby. After 2 months of taking this medication, I decided to stop because the dose I was on was no longer helping me and I did not feel comfortable increasing the dosage. Morning sickness was a big part of the remainder of my pregnancy.

Aside from the morning sickness, everything was great. The baby was growing beautifully, heartbeat was always strong, and on July 15^th, 2015, I had my 19 week screening where we found out we were having a boy! The screening ultrasound was completely normal, showing nothing at all out of the ordinary.

November 24^th, 2015 at 3:42 in the afternoon, our precious baby boy made his way into the world. A very quick labour and delivery (so quick I almost didn’t make it to the hospital!) put stress on Ryan’s heart, so as soon as he was born they whisked him away from me. I was reassured over and over again that he was fine, that he was just being checked out. About 10 minutes had gone by and I still had not laid eyes on my baby boy, but I was so overwhelmed with how quickly everything had just happened, I hardly noticed that they were taking a very long time with Ryan. Finally, a pediatrician came to the foot of my bed (with no bedside manner at all, I might add), followed by about 6 residents, and the first words out of his mouth were ‘We are concerned about your son's muscle tone. It is very low, which is not normal for a baby born full term.’ I could not wrap my head around the fact that they had a concern already. My baby was supposed to be born perfectly healthy and normal. He then went on to tell me he was also concerned about the shape of my son's head, the shape and size of his ears, and some subtle facial features. How could this be happening? Not once did this doctor say ‘Congratulations! You have a beautiful baby!’ or any variation of that. All I was hearing was concern after concern. And then I heard it. The words that made my heart sink. Down syndrome. The doctor said he had reason to believe that my baby had Down syndrome. He and the residents then all just stared at me, waiting for me to have some sort of response. What was I supposed to say? I just nodded my head and they cleared the room. As soon as they were gone I started crying uncontrollably and saying ‘I hurt my baby’ over and over again. My only thought was that it was all my fault from taking Zofran during my pregnancy. I couldn’t believe I had done this to my baby boy. (I do know better now, and that my son had Down syndrome from the moment he was conceived. Taking Zofran had absolutely nothing to do with it. But in that moment I blamed myself and I was devastated).

Finally after what seemed like hours, they handed me my baby. To this day I feel like I was robbed of those precious first moments with him because as I was holding him for the first time, I was crying. The tears were not tears of joy. The tears were from fear, worry, disbelief and sadness. Why couldn’t they let me hold him first, and talk to me about their concerns at a more appropriate time? I ask myself that question a lot. It goes to show that after all of the advances made in medicine and the medical field over the years, some doctors have not yet mastered compassion. All I could think in those first moments with my baby were ‘What are they seeing? How could there possibly be anything wrong with him?’ he looked perfect to me.

I was later brought up to the recovery room, where I spent the next 2 days. Thankfully, aside from concerns about Down syndrome, Ryan appeared to be perfectly healthy. We were seen by another pediatrician, who was more sensitive when talking to me, which I appreciated so much. We were also seen by a geneticist, who gave Ryan a quick but thorough physical examination making note of any and all features that seemed to correlate with Down syndrome. She also said to me that in all her years of being in the field, she has met very few babies who have Down syndrome and she wasn’t able to spot it right away. Ryan was more of a tricky case because the concerning physical features were quite subtle. Once the geneticist was finished with us and left the room, I broke down crying. This was all becoming too real for me. I still could not believe this was happening. On our second and final day in hospital, Ryan had a blood sample taken that would be sent to the lab to determine for sure whether or not he had Down syndrome. I was told that I would get a phone call the next day with the results, and then we were discharged. I was happy to be leaving the hospital, to finally go home. However, when I got home, the reality of what might be, hit me much harder than it had in the hospital. That first night home was the most emotionally draining time I had experienced in my life up to that point.

The next day, at 1pm, we got the phone call. "Ryan actually does have Down syndrome." were the doctor’s exact words. I remember feeling in shock, but also not surprised, all at the same time. The following days were filled with panic, crying, fear and uncontrollable anxiety. I was so afraid of what life was going to be like for my son growing up with Down syndrome. Will he get through school and graduate? Will he ever get a job? Will he be able to live independently? Will he get married and have children of his own? My baby was barely 2 weeks old and I was worrying and obsessing over things that were years and years away. I was even more afraid of how I was going to handle this. How am I supposed to raise a child with Down syndrome? I didn’t know anyone with Down syndrome and I had no idea what to expect. Am I strong enough to be the mom he needs? These questions swirled around my head all day every day. Down syndrome was on my mind 24/7.  Then one day, something amazing happened. I was out running errands, just me and Ryan (he was about 12 days old), and when I returned home I suddenly realized that I had just gone the whole day without thinking about Down syndrome. I just spent the day with my baby and I felt normal for the first time since he was born. It was in that moment that I told myself everything is going to be fine. This may not be the path I expected to be on, I didn’t ask for this, but neither did Ryan. This was the hand that we’d been dealt and it just so happens that we got really lucky. There’s no better hand than ours. We won the jackpot. I stopped just thinking about myself and how scared I was and thinking about what I was going to do, how I was going to cope, and I thought about my son. He didn’t need me to be afraid and worrying. He needed me to love him and accept him for who he is. No matter what. It was just that simple. I haven’t looked back since. I am so thankful that I was able to get to a place of being at peace with our new normal when I did, because I started being able to really enjoy my son. Ryan is just that - my son. He was made perfectly for me, perfectly for this world, and ‘extra’ special. I made the choice to live day by day, moment by moment, right by Ryan’s side. Sure, there are a lot of unknowns when your child has special needs, but life is full of unknowns for all of us. We can drive ourselves crazy worrying about what the future holds for us, or we can live enjoying every day as it comes. We are not promised 10 years from now, 5 years, 1 year, or even tomorrow. I would be lying if I said I never worry anymore. Of course, we all worry about our children, but I can honestly say that I couldn’t possibly be happier.

I know that I am the best person to raise my son. No one could ever be a better mom to Ryan than I can, and no one will ever love him more than I do. I never thought that I would ever get to a place where I was even ok with Ryan’s diagnosis, so to be able to say that I not only accept it, but I embrace it, and I am thankful for it, is an amazing feeling. I am so thankful for Down syndrome because it has made my son who he is. He is so bright, funny and charming. He has the most infectious smile and the way he looks at me melts my heart every single time. He is loving, playful and so smart. He is perfect. He is my greatest accomplishment. I am so thankful that I am the one who gets to go on this amazing journey with him. Every accomplishment we will celebrate together, and every obstacle we will face and overcome together. Down syndrome is just one of the many things that make my son special. What will this diagnosis mean for Ryan's development and his future? No one knows. But I do know that anything my boy wants to do, I will do everything I can to help him make it happen. He will grow up being loved and adored, and appreciated for who he is. He will know nothing but unconditional love from his family every single step of the way. He will be a wonderful teacher of acceptance, patience, and love. He will have the happiest life possible, I'll make sure of that.

Ryan has brought more joy to my life than I could ever have imagined, and he has touched the lives of so many people. He was meant for this world, to make it a whole lot brighter. Ryan makes it so easy to feel like everything is going to be great. He always has a smile on his face, he is always happy, and his happiness is contagious. As long as Ryan is next to me, life will always be good. It might not always be easy, but it is good. Down syndrome is one of the best things that has ever happened to my life. 

Today, Ryan is a happy 6 month old baby boy. So far, he is meeting all of the milestones expected of a typical baby, and I couldn’t be happier with that. Ryan is being followed by physical therapists, occupational therapists and speech therapists because it is expected that he will at some point start to show delays in at least some areas of development. There is an incredible Down syndrome clinic at the Janeway Children's Hospital, and I am so thankful that Ryan will get all the help he needs to live the happiest, most fulfilling life possible. Everyone deserves that.

With Ryan's diagnosis came an overwhelming number of doctor’s appointments. Since children with Down syndrome are at a higher risk for everything from hearing and vision problems to cancer, Ryan was seen by a multitude of doctors to either discover or rule out any health problems. Everything came back normal and healthy, except for his heart. It was discovered at 8 days old, that Ryan had a large hole in his heart that would require surgery to repair. In just a couple of days (on June 5^th 2016), I will be taking Ryan to the IWK Hospital in Halifax to have open heart surgery. When I first got the news of his heart condition, I thought, what else could possibly go wrong, my baby doesn’t deserve this. Now after 6 months of putting up with being poked at and picked at, needles and blood work, Ryan is stronger than ever and totally ready to take on this next adventure. His strength gives me strength, and assures me that no matter what comes his way, he is going to face it with a smile. And I will be there right next to him every step of the way. 

***** 

Courtney, what a beautiful boy you have! I can relate to so much of what you wrote here. I have said many times before that when you have a child with special needs, regardless of the diagnosis, many of the feelings and emotions us parents go through are the same, and this is evidence of that. Like you, I remember crying tears of fear, worry, disbelief and sadness. I remember feeling helpless and scared. But, like you, I also have embraced our circumstances, and we live life to the fullest, feeling very lucky to have such a special little boy in our lives! I know that my son's diagnosis is a blessing, and has not only made him the person that he is, but has also made me the person that I am today. I hope you always know that you are not alone. You are the perfect mother for Ryan, and he will get through anything with you by his side. 

I know that everyone who reads this will be thinking of sweet Ryan over the coming days, as he undergoes his heart surgery. We wish him all the best with the surgery and pray for a speedy recovery! Much strength and love to your family! 

Teachers Change Lives

The Newfoundland and Labrador Teachers' Association is celebrating the important role that teachers play in the lives of students in our province.  "Teachers Change Lives Every Day" is the theme of the NLTA's public awareness initiative to promote the teaching profession and show the profound influence teachers have on the lives of the students in their care.

They have developed a series of television, social media, and print ads that portray how the power of the student-teacher relationship transforms lives. On www.teacherschangelives.ca, you are able to read and watch personal stories from students who want to thank teachers who have made a positive difference in their lives, and you are invited to share your own story of how a teacher may have influenced you and changed your life.

In thinking about teachers I have had over the years, there have been some great ones, for sure, but none that I can say really changed my life or impacted me in the way that Brennen's teachers have.

One of the hardest things we ever have to do as parents is be away from our children, and when your child has extra challenges, that can seem even more difficult. Just the thought of sending my child out into the world without me, without my help and support and guidance is a terrifying thought, and I don't know if I would have been able to do it without the love and support of Brennen's wonderful teachers.

Last November, I shared the "Thank-you" that I submitted, which was posted to the NLTA website, along with many other beautiful messages of thanks to so many of our province's incredible teachers.

Click HERE to read my "Thank-you" to Ms. Kelly Lucas and Ms. Penny Fitzpatrick!

I was asked recently by Wavelight Productions to come in and record part of my Thank-you message in a short video clip, which you can see below:

"So many of us have had great teachers - those that have inspired and encouraged us, and changed our lives for the better. Their influence on us extends beyond the classroom and into our community, enriching our whole province."

Teachers really do change lives every day. Please take the opportunity to thank a teacher who has made a difference in your life!