10/1/2018 0 Comments
The take home message...people with Down Syndrome are not to be feared.
They are beautiful, caring, capable and intelligent human beings.
Mother to a neurotypically developing child, Mother to a child with special needs, Wife, Doctor, Daughter, Sister, Friend... These are just some of the roles in my life. Which is most important??? Does there need to be one that takes priority or can I just fulfill them all fully?
We all have different lives, but we all have many roles in our lives. Which are some of your roles???
Up until 2 years ago, I just lived my life. I remember being young and wanting to be a doctor. I remember focusing on what I needed to accomplish in order to fulfill that dream of becoming a doctor. It was a lot of hard work, but my life was somewhat on auto-pilot...follow these steps and do well and I knew I could reach my goal. I was so focused, busy and exhausted that I didn't think much outside the box and just kept going.
I met Roberto, my husband at age 17, as I started my undergraduate education. He had the same goal to become a doctor...so together we accomplished it.
We got married after dating for 7 years, I was 24 years old. At that time, I was in medical school...still busy and focused.
I think I just kept doing what was expected of me...keep moving forward. I completed residency and started to practice medicine...as did Roberto.
We waited to start a family until we were "ready"...after we had great careers and a home. Again, I just kept following the path of what was right and was expected. Don't get me wrong, I was perfectly happy. I married the man I loved and I fulfilled my lifelong dream of becoming a doctor. However, I was so busy just staying on track and moving that I never really did any soul-searching...who am I truly as I embark and take on new roles in life? How is this all changing the core person that I am, or is it not changing me? Should it change me? I am happy, but where is this happiness coming from? From my roles in life (from being a wife and a doctor), or from inside? Does it matter?
After 10 years of marriage, Olivia was born...with a little surprise. Up until this point in my life, I felt everything had been perfect. At least, everything went as planned. For the first time, a curveball had been thrown my way. A child with Down Syndrome? That's not what we planned (of course nobody plans having a child with special needs), and at the time, I wasn't sure that's what I wanted. (read "I'm Sorry Olivia" post for more on this). I was suddenly learning to be a mother, and how to address my child's unique abilities, all at the same time. I learned of extra appointments and therapies that were going to be needed for a child with Down Syndrome. Due to all these changes, Roberto and I decided it would be best if I cut back at work to part-time.
Five months after Olivia was born, as I was starting to adjust to my new role as a mother and accepting the fact that our child was "different" (that's how I saw it at the time)...I found out we were expecting our 2nd child. Yes, I am embarrassed to say (as an OB-GYN) that the second pregnancy came as a surprise. It was too fast...too much.
Robert was born 14 months after Olivia. Another role now added to my already full schedule in my life. Mother to a baby boy with a difficult sleep pattern until age 3!
This is just a quick flash of my life. We all have so many roles and so many things to do, that I think many of us get lost in the chaos of it all. I know there are amazing, strong women who keep it together and multi-task as they juggle all their duties and fulfill all their roles. My hat goes off to all these women...and please give me advice on how you do it!
But for me, as I was dealing with two infants, therapy appointments 3-4 times a week, lack of sleep, getting called for deliveries at the hospital, coming home from work worried about a patient and following up on lab results, having some patients not listen when I said "smoking and drinking is bad for your baby", coming home to cook and put kids to bed...and having a husband who felt a bit abandoned through it all...it became a bit too much. I was exhausted, irritated and had a low threshold to explode when the kids acted out. For a while, however, I did not realize it...and I kept going. Trying to fulfill all my roles, and not really being good at any of them. Now, looking back, I absolutely needed to ask for help. In addition, at the time I didn't realize I was going through depression that I never voiced and I completely ignored. I told myself, "I can handle this...I'm a doctor...how can I not handle two kids? There are women who work with five kids, and they are fine...so I have no reason to complain. "
But the truth is, I was drowning. I was simply trying to stay afloat...as I pretended to everyone I was fine.
The last straw was one day coming home from work. I was cooking dinner and was tired after a stressful day at work and a sleepless night with my son on the sofa (because he went through a phase that he only wanted to sleep on the sofa with me, and I was too tired to enforce sleep training!)...I remember I was in the kitchen and Olivia came into the kitchen repeatedly calling for me, "Mommy, mommy, mommy...", it progressively got louder and louder, followed by "Play, play, play!". I remember I turned to her and said, "Olivia, please get out of the kitchen and be quiet...Mommy has to finish cooking! I can't play with you right now!"
I didn't realize at that time how horrible that was, but soon after, I couldn't believe I told my daughter with Down Syndrome who was clearly using her words to express her needs, to be quiet. For the two years prior to that, we worked day and night to get her to speak and use her words...and she was doing the one thing I had wished for so long, and I completely shut her down. How could I do that to her? What had I turned into???
Multiple things in my life felt to be spiraling out of control...and something had to change.
This happened almost 2 years ago, and I had to re-evaluate everything. Who was I and what were all the roles in my life?
Then, I realized I had forgotten the most important role of all...the role of being Mayra. I had to be me again, figure me out and figure out what I needed in order to be able to be good at all my other roles. I was stretched thin and I completely lost track of me.
Although it was difficult , I began to focus on me. I realized only I can take responsibility for my life and my happiness. I started to focus on my physical, emotional and mental well being, and became a bit more selfish.
It is soooo hard to do, but don't lose sight of who you are as life gets busy!!!
It's definitely a work in progress, but I am trying to focus on me...and that allows me to help make life better for all those around me, especially my family...
Roberto and I found out Olivia had Down Syndrome the day she was born. We had done the prenatal AFP genetic screen with the Nuchal Translucency ultrasound...all "normal". I am an OB-GYN and I know the "normal" result does not mean zero risk, it just means the results show a low risk of the baby having Down Syndrome. However, I was thinking like a new mom-to-be, not like a doctor- and I completely trusted the test results. Therefore, the news came as a complete shock when Olivia was born and we had no time to prepare mentally or emotionally for that news. Needless to say, the day Olivia was born was a hard day (that's an understatement).
Everyone has a different experience when it comes to when and how they found out their child has Down Syndrome. In addition, everyone has a different reaction. I know amazing parents that didn't shed a tear and just said, "Ok, it's just another child."
I was not that strong at all. I was terrified and didn't know what to do or think. Right after she was born, in a moment of grief and utter fear, I remember asking Roberto, " Should we give her up for adoption?" I am ashamed to admit that, but it was a fleeting thought in the midst of such confusion and pain. Roberto hugged me and said, "No, this is our little girl". We hugged and cried...but we knew we would all be okay.
Two days later, we went home with our Olivia Rose. We were sent home with a book about the medical facts of Down Syndrome and a phone number for the Regional Center in our area. ( The regional center is a non-profit organization that provides services for people with special needs.) No extra instructions were given to us, aside from a follow- up appointment with the pediatrician and the geneticist. That was it.
At home, everything started to sink in a little more. And again, the panic set in. I was reading the book I was given in the hospital, and I hated it! It told me all the medical conditions and delays my child was at high risk for, from birth to old age...including a shorter life span. Really??? Is that really the information they want to share with new mothers who are already sad and terrified? I quickly threw away that book and shuffled through the other pages they sent me home with.
Luckily, I stumbled across the phone number for the regional center...I had totally forgotten about it. I called them within 1-2 weeks of Olivia's birth and that was the beginning of our educated journey to raising a child with Down Syndrome. They did a home visit when Olivia was about a month old, they told me the services that were provided and recommended for a child with Down Syndrome. I became educated about a world I didn't know existed. The world of being a parent to a child with special needs. I learned about the therapies and support groups that I never thought I'd be a part of.
At 2 months of age, Olivia started physical therapy and occupational therapy. Through the regional center, I also learned of a great organization in our area that provided group therapy for Olivia starting at 3 mos of age. There, I met amazing families who had children with Down Syndrome and I was motivated every day to be an amazing parent like them. When Olivia began therapies, I was cautiously optimistic, not convinced it would make a difference. And like always, Olivia proved to me how capable she was. She was a fighter and everyday impressed me more and more.
Speech therapy was not covered by the regional center until approx. 18 mos of age. Roberto and I felt it was important to start earlier, so we took Olivia to an amazing feeding and speech therapist starting at 3 mos of age. To her, I owe how well Olivia is now speaking!
So, yes...lots of therapies...that's my point!!! Early intervention makes all the difference in the development of children with Down Syndrome, as well as children with other special needs. It is important that as parents we educate ourselves about the organizations in our neighborhoods that provide services for children with special needs. It is important to not be in denial about what our children need. It is important to not delay early intervention because it really makes a difference. It is important to believe in our children and know they are very capable of learning and meeting milestones. Yes, milestones may come a little later, but that makes the celebration even bigger!
And no, it is not easy. As you can see, suddenly there are lots of appointments...and this doesn't include doctor visits. But it is so worth it! And for parents (especially moms), it's important to find support groups with other moms who are going through the same thing. It's important to vent and be understood, and to learn from extraordinary people!
I've heard too many stories where children with Down Syndrome start therapies so late...a lot of times from parents' lack of education about early intervention, or fear that therapies are too expensive (most of the time they are covered), or just ignorance in thinking therapies will not help their children develop "normally". And if therapies are not provided in your area, there are You tube videos that show how you can do therapies at home with your child.
To this day, Olivia's schedule is full! She just turned 6 and is in kindergarten. She has Speech and OT therapy in school. We take her to additional private PT, OT, and speech therapy weekly. She receives behavioral therapy at home three days a week. We have a reading tutor work with her twice a week, and she's in swimming lessons!
I am not telling you all this to frighten you, but to reassure you that all this is doable and both your child and you will be stronger in the long run. The love of a mother is endless and the journey with your child will be remarkable...trust me!
Yes, our children bring so much joy and love to our lives. Yes, our children are blessings and make us better people. Yes, we wouldn't change our kids for the world.
But, let's be realistic...it is hard! It is hard work and there are many difficult moments.
I would like to share this poem with you because it has always helped me re-focus when life gets difficult...not just with parenting, but with all life circumstances that may be challenging.
Remember What is Most Important by Vickie M. Worsham
It's not having everything go right;
it's facing whatever goes wrong.
It's not being without fear;
it's having the determination to go on in spite of it.
It's not where you stand,
but the direction you are going in.
It's more than never having bad moments;
it's knowing you are always bigger than the moment.
It's believing you have already been given everything
you need to handle life.
It's not being able to rid the world of its injustices;
it's being able to rise above them.
It's the belief in your heart that there will always be
more good than bad in the world.
Remember to live just this one day
and not add tomorrow's trouble to today's load.
Remember that every day ends and brings
a new tomorrow full of exciting new things.
Love what you do, do the best you can,
and always remember how much you are loved.
I hope this poem helps you during those difficult days too! All we can do is the best we can do...sometimes it's enough and sometimes it's not...but it's ok. We can't be too harsh on ourselves and we just keep moving forward...
P.S. If you can squeeze in some "me" time during those hard days, even better!!!
I'm going to be very honest and sound probably like a horrible mother in this post. But I want to be real and tell my story to hopefully help others who may be experiencing the same emotions.
After Olivia was born, I was very sad. I felt cheated...like someone took away our little girl...the one we were expecting. I was grieving that child and trying to bond with this baby...one I felt I didn't know. I remember being discharged from the hospital, I didn't want to leave. I wanted to stay in that room...hiding from the world. I thought I wanted to hide to protect Olivia from the stares and comments she was going to encounter, but now I realize I was only trying to protect myself. I was being selfish and I was terrified of facing our new reality, terrified of not being fit to raise this child, terrified my marriage would not be able to survive so much added stress. I had so many fears of our future and Olivia's future.
I remember sitting on the wheelchair, waiting for Roberto to pull up the car so we could leave the hospital. I remember I was with the nurse and some women walked by. They said "Congratulations" as they were trying to look at Olivia. I held Olivia a little tighter...hoping they wouldn't notice anything wrong with her. I wanted them instead to look at all the flowers that were by my side and be completely distracted.
I will always be ashamed and regretful of those moments...moments that I did not give Olivia what she deserved. Moments that I, the person who was supposed to love her unconditionally and protect her from the world, did not acknowledge what a treasure I was given. She deserved me to have complete trust in knowing she was amazing and she deserved me to celebrate her coming into this world and becoming part of my life.
I'm so sorry Olivia. But thank you for letting me hold you and with each touch helping me realize how special you were. Thank you for looking at me and each time telling me everything would be okay. Thank you for smiling at me and letting me know I was doing ok. Thank you for everything you have given me...especially the wisdom to know you were the exact child I was meant to have. You have made my world a better place and I keep learning from you everyday. Thank you.
Now I wish I would have had a crystal ball as I left the hospital. I wish I could have looked into the future, to see that everything was going to be just fine. Better than fine. Actually, I wish I wouldn't have needed a crystal ball...and just known.
Of course life has it's challenges...everyone has challenges. But I wouldn't change anything for the world. Olivia is only 6 years old, but I know no matter what the future holds, we will be okay. We all just do the best we can everyday.
I'm no longer that scared new mother that left the hospital...I am now strong and oh so proud of my Olivia. I want the world to meet her and see how amazing she is!
Tell me about your amazing child...
We arrived home with Olivia 2 days after she was born...I went straight to my room, placed Olivia in the unused bassinet beside my bed and I lay down. I was physically and emotionally drained.
Immediately, Einstein, our Siberian Husky, jumped up beside me. He sat motionless and looked inside the bassinet, not taking his eyes off Olivia for at least 20 minutes, and I was able to capture this beautiful moment on camera.
It was almost as if Einstein loved her from the moment he saw her. He looked at her with such awe and he seemed to immediately take on a protective role over her. It's as if he knew she was part of our family, and he loved and accepted her unconditionally.
As I lay in bed, I cried. It was amazing how our dog managed to do what most human beings, including myself, are not capable of doing. He did not see any imperfections in her. He did not judge or stare with questions nor concerns. He was not sad, wishing she were any different. He simply loved her.
If only all the world could see through Einstein's eyes...we would live in a much better world.
We went to a get together with friends when Olivia was 8 weeks old. There was a friend sharing stories of her 6 week old baby. She was excited that he had just started to roll from his tummy to his back. I remember thinking to myself, "Olivia hasn't done that yet, but it's okay because she has Down Syndrome. I just have to be patient and she will eventually do it". That night, when we went home, I put Olivia on her tummy for a few minutes...she soon rolled onto her back! She did it multiple times thereafter. I was ashamed of myself...I had just assumed Olivia couldn't do it and I hadn't given her the chance to prove what she was capable of. From that day forward, I vowed not to use Down Syndrome as an excuse for anything, and to not limit Olivia. Everyday, she continues to prove to us how much she can do...and if she can't do it, she will figure it out!