On April 19, 2018, I had the normal 20 week pregnancy anatomy scan. My husband and I were so excited to find out just 5 weeks prior that we were having a baby boy, and were just as excited to see him during this ultrasound and find out that he was so healthy! I was so excited to post after that scan “he looks so happy and healthy! everything went just wonderfully!”. Little did we know, there were slightly different plans for us that day, as we also found out about his heart defect that day. I decided the next day to write my feelings down and I haven’t shared it with many people.. until now. And boy, does this make me relive that day all over again, but also makes me wish I could go back and tell myself then not to be scared. Aside from the medical hardships, down syndrome is such an amazing unexpected thing that’s happened to us and we’re so thankful, because our Ryan is absolutely the biggest blessing in our lives! I am a better, more patient, and more understanding person because Down Syndrome has come into our lives.
See below what I wrote in 2018.
Finding our your child is different.
Sitting in that office room, hearing the words “Now there are a few abnormalities..” the rest of the words she ended that sentence with didn’t even make it to my ears. The doctor gently handed me that Kleenex box, and my eyes began to fill with tears. I felt like my world was crashing down all around me yet again, and that my baby wasn’t going to be okay. You never ever want to see that look in the doctor’s eyes, hear words come out of their mouth that could possible change your life the way we’ve heard and seen not once, but now twice. Different words, different situations, different babies, but all the same in that they change things.
Baby boy has a few things that our doctor is concerned with, and she had me immediately take a blood test to determine exactly what we were dealing with. She also let us know that she was making us an appointment with a doctor in a specialized clinic that we will become very familiar with very soon. That our plans of birthing our child in a hospital just a few blocks from where we were sitting in that office, was not going to take place, and that the picture we had in our brains of our lives was going to be just a bit different. Now, that word I speak of, different, doesn’t mean bad. It doesn’t mean embarrassing, it doesn’t mean regret. It just means that things will be a little different in our lives than we had imagined. Is this baby going to live a happy, healthy life? God, I hope so. If I have anything to say about it, he will live a better life than I even expected from the start, and that he will flourish into an amazing adult who dreams of big things, cares unconditionally about each and every person he comes in contact with, and that he will, most importantly, be happy. He will understand that he is no less than anyone else, just that he has to be mentally stronger than most, not to let society determine the person he is destined to be. This little boy is destined to be whoever he puts his mind into becoming. He will grow up to be the very best person he can be, he will push himself to better himself every day and not let these struggles he will have to overcome, make him feel inferior.
We will all have struggles to go through, obstacles to face head on, and things to overcome as a family. What I have already experienced through losing a child, is that with my husband by my side, we will get through and come out better than before, in any situation we are put in. Now, am I scared? Absolutely. I think any mom wants to make sure that their child is able to live their fullest life and has good health. Am I confused? Well sure, no one expects news that we’ve gotten. But am I going to let myself or anyone else think of this as a negative situation? No. What good does that do? We are all born special, and my baby will be born with nothing less than anyone else, but rather something extra. An extra chromosome. That chromosome will end up making him be seen by doctors more, will be seen differently in society’s eyes, and will have even more love from his family because he will be the best thing that’s ever happened to us.
Written by Victoria on 4-20-2018
Ever since we decided to make it public during my pregnancy that he will be born extra special, to now we have gotten nothing but the most amazing support. I have also met some absolutely amazing Moms and families who have babies with Down Syndrome and I cannot say how much I appreciate how open and accepting those women are, who I’ve been able to reach out to during this last year of trying to learn all that I can. Our son is certainly loved without a doubt by all that know him, and so so many who don’t. Throughout this hospital stay, and even before, he has had hundreds of people following his journey, praying for him, helping us with anything we may need, and just watching from a distance while he takes on the hardest thing a person can go through and come out on top. My husband and I are so excited to continue to watch him grow and be the amazing Ryan that he is, no matter what obstacles we will face. We know a love that we wouldn’t know if it weren’t for him, exactly as he is.
The next time you hear that someone you know found out their child has Down Syndrome, please don’t say “I’m sorry.” There’s absolutely nothing to be “I’m sorry” about when it comes to an extra chromosome that makes a person look at the world with such joy. We’re definitely not sorry that Ryan always has a smile on his face, or that he will grow up to see life in a far more beautiful way than I will ever see it. He isn’t Down Syndrome; he is a sweet little boy who happens to HAVE Down Syndrome.
Today, and everyday, we celebrate him and everyone else who is made so unique and beautiful, just as they are! Thank you to everyone who loves our boy for the person he is, and will be.
For our first World Down Syndrome Day, we sure weren’t at home where we would prefer, but we celebrated alongside all of the Mercy PICU staff and families with a potluck, treats and smiles all day. While the reasons we’re here aren’t preferred, we were glad to be around those who appreciate everyone who rocks that extra chromosome. We can’t say enough good things about the PICU floor that we’ve been on for a month now at Mercy.
