Thursday, June 2, 2016

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 15th, 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 24th, 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 5th 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! 

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