Today’s video blog is very different from my other blog posts but it would mean a lot to me if you would take the time to read it.
It is very personal and longer than usual. Today I want to tell you about my journey as a mother. It is about me going through the darkest days in my life and coming out of it thriving. It is about my daughter, Nina, who is four years old. She is very active, curious, smart, loves to sing, cook and paint. She is the love of my life and the reason I do what I do.
5 years ago, my husband, Henry, and I were so excited to find out that we were expecting a baby. Carrying a new life in my body was a very surrealistic experience and I loved it. My life was perfect.
Then we found out that our baby would be born with Down Syndrome. We were devastated. We got scared, we panicked, we were angry and sad, and many negative emotions surfaced with the diagnosis. “Will the baby be able to talk?” Will the baby be able to walk?” The scariest part was not knowing what to expect. We cried so much during that time and I truly thought I didn’t have any tears left, at least sad tears.
Down Syndrome is the most common genetic disorder caused by chromosomal disorders. It is a developmental disorder and people with Down Syndrome have an increased risk of developing a significant number of medical problems. Children with Down Syndrome usually develop more slowly than their peers and have trouble learning to walk and talk. They take longer than normal to grow and they have weaker muscle tone.
I read so many stories about people that have children with Down Syndrome before Nina’s arrival. Many of the stories said that their special needs child changed their lives for the better and I thought “Really?” “How is that possible?” I was so skeptical and cynical. I initially thought that those people were trying to prove that they were happy even though they weren’t.
I thought my life was over. My dreams were all gone. I could not find a reason for happiness in my life anymore. Physically, I was alive but mentally I was dead. We were told at the hospital that we had another “option”. However, the only option we were interested in was to continue to love the baby as we had from the start.
I had to rewrite my life’s blueprint. I had to change my goals, and my dreams.
This is the email we sent out to our friends after the diagnosis…
Hello family and friends,
As some of you already know, Fumiko and I are expecting a baby in April. Of course we are excited and happy about sharing this news and about becoming parents. There is something we want you to know about our baby and we think it is best that you hear it now from us. Our baby has Down syndrome (Ds). While that was a difficult diagnosis for us to hear, we were prepared for the possibility and are adjusting to it well.
We realize that you may not know how to respond to this news so here are a few suggestions for now or when we meet again: if you are just finding out that we are expecting, it feels great to us to hear, “Congratulations!”. That is also what we hope you will say when the baby is born. Another response that has come across well is, “Thank you for sharing that with me.” Really, anything positive and supportive is appreciated. Please do not feel the need to say “I am sorry” or offer any sort of apology or words of pity. After all, we are happy to become parents and with the arrival of the baby we will be a family. With that said, please don’t worry too much about saying the wrong thing or feel awkward about saying anything at all – we will assume your intention is good. Please feel free to ask questions if you have them. We are learning about Ds and hope that in our positions we can increase understanding and acceptance of it. We have already met with two families of babies with Ds and will soon be meeting with more. The experiences so far have been reassuring.
Please also know that our baby is healthy, it just has an extra chromosome. Although about half of all babies with Ds are born with heart defects, we had an echocardiogram performed on the baby’s heart and everything looks fine. If you are wondering about the baby’s gender you will have to wait and find out when we do. Also, in case you are wondering, we received the diagnosis in time to have another “option”. However, the only option that we are interested in is to continue to love the baby as we have from the start. We hope to see all of you this year and we look forward to introducing you to our baby soon. Happy New Year!
– Henry & Fumiko
After Nina’s arrival, my life turned upside down. Surprisingly, in a great way! Yes, it took time but now I see my life differently. I see beauty in small things. I feel so much inside and I love to share it with others. I have so much more passion for what I am doing. Life is simply beautiful.
Still there are so many things I have to go through; endless doctor’s appointments, therapies, and sometimes worries. But these are all part of being a parent, right? Nina is doing great. She speaks Japanese and English. She takes care of me when I am not feeling well. She cooks, sets the table and cleans the dishes!
Now I have more dreams. Many people with Down Syndrome have weaker muscle tone. I truly believe that Nina can benefit immensely from practicing Face Yoga exercises! After Nina’s arrival, I just wanted to be a mother and end my career as a Face Yoga instructor. But because of her diagnosis, I decided to pursue my interest in face exercises more than ever. I want to teach Nina how to move her face muscles. I want Nina to be a Face Yoga Method instructor (if she chooses to do so!). She loves yoga so much already and always tells me how “silly” I look with my funny faces. She is, without a doubt, the biggest (and most critical) fan of the FYM.
Nina is my dream, she brings so much joy to my life. She reminds me that life is beautiful and that every day is a miracle. Every time I see her at night sleeping peacefully, I feel that she is the best thing ever happened to me. Now I cry with joy and not sadness!
Now I would like to ask for your help.
On November 7, 2015 in Sacramento, Nina, Henry and I are joining the Down Syndrome Information Alliance to raise awareness by participating in their Step Up for Down Syndrome Walk & 5K Run.
The money I raise will contribute to the incredible support, education, resources, and much-needed events DSIA provides to our community. To help DSIA continue its life changing efforts, I’ve set a fund raising campaign. I would love your help in reaching my goal. Will you consider making a fully tax-deductible donation of $25 or more?
You can donate online through my personal fundraising Web site by clicking here. It is called “Team Nina.” Your contribution makes a huge difference in my life, Nina’s life and many other people’s lives with Down syndrome!
Thank you so much for taking the time to read about my story, for your overwhelming support and love.
Much love and appreciation from the bottom of my heart,