My 10 year old son always tells me, “Being a mom is the hardest job in the world, but mommy you make it look easy”. I always smile and think, “Oh son, if you only knew!!”
That is where my story will begin, the day I learned that my third child would be born with Down Syndrome. I did not have my first child until I was 36, so having a Down Syndrome child was always a possibility, but like everything else, seemed impossible that it could happen to me. It was a normal day and I was dying to find out the sex of my baby. I quickly answered when I saw the doctor’s office calling. The news I was about to receive was not what I expected. In what seemed like the coldest voice the nurse told me, “The baby has Down Syndrome, you have three choices - terminate the pregnancy, continue with the pregnancy and place the child up for adoption, or continue with the pregnancy and raise the child yourself.” I was so taken back I had to have her repeat message. She hung up. I called back immediately and asked if they could tell me the sex of the baby. She said, “A girl.” I called my husband at work and had him leave to come meet me so I could share the news in person. We had a good cry, went home and shared the news with our families (who also all cried) and then my journey began.
I have to admit, I knew absolutely nothing about Down Syndrome. I had never even met a person with Down Syndrome. My experience was just seeing the faces in a crowd from time to time and assuming because they are intellectually challenged they did not have a very good quality of life. I thought my life as I knew it was over - how could I raise a child that was intellectually challenged, I don’t have that kind of patience, I am already so busy with work and my other 2 kids, etc. After a few days of feeling sorry for myself I decided it was time to take action. I thought, “Where do I even start?”, and decided it was time to educate myself. I honestly think for those first several weeks of my pregnancy I did not sleep. As soon as I got home I was on my computer. I researched every single thing I could about Down Syndrome.
I joined online support groups and I found local support groups where I could meet people with Down Syndrome and speak to the families. I learned about health problems, I researched challenges and how to overcome them, I learned about the impact they had on their siblings. I discovered many Down Syndrome people live successful lives, and I learned about THEM, each individual and what they contributed to this world. Slowly I started to realize that people with Down Syndrome were special in a most unique and incredible way. These families were happy and healthy and PROUD of this special person brought into their life. Much of my fear started to go away and I began to accept that things were going to be OK. I started to believe that the challenges I would have would not be different than the challenges I have with my other two kids. Our lives were just going to be different now but that different could be pretty amazing if we let it be. However, I was still uncomfortable telling the world. At this point the only people who knew my new baby girl would be born with DS was my family - no one else - and it really took me until my baby was born before I could open up to the world. I am happy to say today I could not be more proud of my daughter.
November 1, 2006, Greta was born! She was beautiful with big blue eyes. My husband immediately fell in love. My husband at that moment understood why the research and time spent was so important to me. He was so thankful that I had made the choice to not terminate my pregnancy out of a fear of the unknown. During the week in the hospital I had some ups and downs. Greta could not breast feed which broke my heart. She ended up with a bad case of jaundice and I was so dehydrated they could hardly draw blood. It was a long week. However, I also had my first of many special moments that I have had since the birth of my baby girl. For my third pregnancy I changed my doctor. My husband asked why as he knew I loved my old doctor. I could not really answer, I just said I wanted to try someone else. The answer came to me as to “why” when I was in the hospital. First thing, my doctor made himself available to deliver Greta even though he was off duty. When they went to whisk her way after she was born, he said, “No! There is nothing wrong with her physically, she just has DS, let her mother hold her.” Then the really special moment came a couple days later. He stopped by for a routine check-up. He sat down and said let me tell you about myself. He went on to tell me how he had raised a child with Spina Bifida. She has passed away at 23. He shared many special and happy moments from his life with his daughter with me. We both had some tears during that hour. To this day I know I changed my doctor because he had a similar life experience to share. That conversation was so important to me, a relative stranger pouring out his soul for the love of his child and to help me know life was going to be amazing. That was a beautiful moment in my life and I will never forget him for caring.
Greta joins our family and life together begins. Greta is now 8 years old. All the normal milestones happen, just a little slower! Greta learns how to eat, drink, walk, talk, and so on. There are some challenges along the way. For instance, at age 4 I realized as I heard a toddler tell her mom she loved her that I had never heard my baby girl say “I love you.” It was a big blow to my heart and it took two more years to hear Greta say “I love you, mommy”. However, hearing the words or not I always knew how much love was in Greta’s heart. Another challenge is that at age 8 Greta still has a hard time speaking. If you know her you can understand what she is saying, but she still has a way to go with her communication skills. This skill is an important one for her to master, as I have learned the better a DS person can communicate the more opportunities are open for them as an adult. So we work hard at this every day. The flip-side to this is Greta for years understands what we are telling her. I am thoroughly convinced some of a DS person’s ability to speak is based on the way their mouth is structured not on the intellectual inability to understand. I see it every day. I think DS people are far more intelligent than we think they are they just care about different things. Greta learns how to do everything she wants to learn to do, she even teaches herself. Sometimes I am beyond amazed at what she can do. She can pick up a remote, iPhone, or computer and navigate through and find what she wants to watch or play. She has even shown me a thing or two.
She swims, not self-taught, but she wanted to swim so she focused and learned just like my other two kids and she was swimming well at a young age. She points out if someone makes a mistake or does something wrong. She congratulates people when they do something right. She cares for people if they are hurt emotionally or hurt physically. She has an incredible sense of humor, always pulling a prank or laughing at everyone’s jokes. Greta loves the world. The little things that the rest of us just accept and go on make her so incredibly happy - it amazes me how happy she can be at the smallest gestures or accomplishments. Being loving is also a challenge I face as I worry about her being too friendly and people taking advantage or hurting her. I worry that her big hugs to EVERYONE can make some people feel uncomfortable. So, we work on how to say “Hi” to a loved one with the biggest hug ever and how to say “Hi” to a stranger with hand shake. We work a lot on safety. Teaching her things that can possibly hurt her and reiterating them more often. Mostly though, life with Greta is amazing. Her positive outlook brings my family joy every day.
Then there are her siblings. Greta is the youngest of three. She has a 13 year old sister and a 10 year old bother. Yes, there are moments of jealously - I do have to focus a little more time and effort with Greta. Not only to help her learn but also to monitor her to keep her safe. I take every moment I can to do something special with my other two kids. I spend time recognizing their accomplishments. Each day I make sure at least once they hear how much I love them and how special they are to me. My kids would never ever say it, but I am sure there are moments they feel embarrassed by Greta, but heck we have all embarrassed someone we love at some point in our life. However, mostly my kids have become more compassionate loving human beings by living their life with a special needs person. My daughter volunteers each year in the special needs classes. She helps the autistic kids because she wants to understand the different types of special needs that exist. My son tells Greta she is the most beautiful girl in the world; everyday they are joined at the hip and do everything together. My kids stand up for their sister and they make it a point to introduce her to their friends and teach their friends about people with DS. My kids introduce themselves to any DS person they meet and talk to them just like they would anyone else.
Another challenge I still have is that I worry that one day when I am gone Greta will end up in a home and want my kids to the care for her. I have said that to my kids and it makes me feel guilty for putting that pressure on them as they should be able to have the life they want as adults. I try not to think about it too much as I just have to trust when that day comes my kids will do the right thing by their sister and for themselves.
Next, I have to recognize all the incredible people in this world that dedicate themselves to helping those with special needs. I have found an amazing group of individuals that have made this journey possible. The teachers and social workers that have no connection to special needs people but sacrifice themselves daily to teach and support those who cannot always take care of themselves. The parents who have kids with DS or special needs that are willing to share their experience and journey in order to help others, even when that journey is painful. Through social media I have found a world wide support group. It is so cool to share stories and challenges with those around the world. I love the celebrities that also support people with special needs!! I want to thank the people who are accepting of those who are different and don’t judge. It has made a world of difference to Greta to be accepted. She is very popular at her school. I absolutely love that people are accepting and take a minute to make her feel important.
Although, it is not everyone, there are still moments when people treat her differently. I remember being at the playground and the kids yelled “Come on let’s play.” She ran over with her big smile and when they turned and saw her they told her, “Oh we don’t want to play anymore.” I felt horrible until I heard her turn and say “A**h**les!” Which I don’t really condone profanity, but I thought ok, you can stand up for yourself. One of my goals is to continue to build awareness and acceptance of people with special needs, especially DS.
The morale of my adventure so far is this...When something that appears to be bad happens to you in life it actually opens a new path up to something great. You will look back and say that was the best thing that ever happened to me. Yes I was right, my life would never be the same, but little did I know our lives were about to become so much more than I ever thought they could be. This journey has been widely exciting beyond my imagination! The life lessons just keep on coming and I wanted to take a minute to share some of those...
1. RESEARCH
Knowledge is key. Knowledge allowed me to take control. To this day I have become a hugely curious person. Anytime something comes up that I don’t know much about I take a minute to research it and ask questions. My ability to expand my knowledge and continue to learn has increased. I love how gaining knowledge helps my self-esteem. I challenge my kids to gain knowledge every day. I hope all women can take something away from my story and next time they are faced with a challenge or the unknown take a minute to educate themselves.
2. PEOPLE
People make a difference. Let those with something positive to share into your life. I could not have made it through this journey without the help of some incredible people. Family and their support is important. I am a relatively shy person at heart but since I needed so much support I allowed myself to open up to others. I also learned how to be more kind, more helpful and more loving to those around me. I learned how to not be afraid to show and share my heart with others. A great thing that happened was the more I gave the more I got back. I am not really shy anymore. I love to show people how important they are to me as I feel it’s a great gift God gave to me that I can give back. Through my experience I hope other woman can open and share their heart a little more. Women need to lift up and support each other.
3. LOVE
Unconditional love is real. There is a lot we can all learn about how to really love from people with Down Syndrome. The pureness of heart is unreal to see. Greta loves with her heart, not her head. If everyone had the capacity to share love in this way the world would be a better and more peaceful place.
I have to say my son has it half right, being a mom can be hard but there are so many incredible moments that it makes it seem easy. Being a mom makes you stronger. I have many more challenges to face as Greta grows up. I have may more life lessons to learn. The beautiful life I am sharing with her is an incredible journey. I thank my daughter from the bottom of my heart for showing me what really matters in life. I am still far from perfect; however, I love the person I am becoming. I am a better Mom, a better Friend, a better Woman and a better Person.
We want to share more with you! Click below.
Sending love, luck & calm vibes.
