MOTHERHOOD: Raising a child with Down Syndrome

"Faith can move mountains".  Several times in my life I've proven this, especially when there were trials. I always felt that God was with me all the time! ~ Carmina Huet

WHAT IS YOUR FAVORITE MORNING ROUTINE?

I wake up early, around 3:00 AM to 4:00 AM.  I cook for my family. While cooking, I open the TV and catch up on the news.  Next, I clean the house.  This is my weekend routine. When I have to work; I hit the road at 6:00 AM.

WHEN THINGS GET CHAOTIC IN THE MORNING, WHAT DO YOU DO TO CALM YOURSELF?

Would you believe that drinking coffee calms me?  Chaos happens when I don't plan well, and when I wake up late.

HOW DO YOU DESCRIBE YOUR DAUGHTER, GUADA?

Guada, 10, is a very sweet, smart, loving and independent girl. I even made a poem for her "A Hundred Kisses A Day”,  because she would hug and kiss you always. Physically, she's fat and has a round figure. I would say independent because she dresses up, takes a bath, eats by herself, fixes her hair (even puts on a little lipstick) and much more. She's very helpful, too.  She helps me fold the laundry, set the table, and prepare the ingredients for cooking. She loves to draw and paint.

WHEN YOU FOUND OUT THAT YOUR DAUGHTER, GUADA, HAS DOWN SYNDROME, WHAT WAS YOUR INITIAL REACTION?

I learned about her being a DS baby in the recovery room, after giving birth through caesarean operation.  Imagine, I could have been hysterical and would have hyperventilated, but I was composed. The first thing that came into my mind was how can I help her? How should I handle her? My husband even went home to research about it and brought back, to the hospital, a printed copy about Down syndrome.  Maybe, my being a Psychology graduate also helped. During my college days, Down Syndrome used to be called mongoloids. So I was also somewhat confused about her condition.  Honestly, I did not blame or question God.  Every time I'm pregnant, I pray that my baby will be healthy and that I will have a safe delivery and, most of all, that I will accept my baby whatever happens.

Guada's name was taken after Our Lady of Guadalupe because I prayed to the Virgin Mary while I was pregnant with her.

WHEN YOU LOOK AT YOUR CHILD'S FACE, WHAT DO YOU SEE?

She's cute! I always compare her to a Cabbage Patch doll! I see an innocent girl who will always be my baby.  Other parents with DS kids would say they are angels. I think so too. I'm so amazed why DS kids all look the same and I told myself I'm so lucky to have one because the condition is so rare occurring only to 1:800 babies.

WHAT ARE THE CHALLENGES OF HAVING A CHILD WITH DOWN SYNDROME THAT MOST PEOPLE DON'T UNDERSTAND?

People usually think that Down syndrome children are harmful and will hurt others. They think that they have tantrums all the time. One time, we were riding in a jeep, the mother pulled her child a little away from Guada.

One challenge for me is her speech. Presently, she can only say about 30 words; this is why she has speech therapy. In my case, I don't consider it much of a handicap because I communicate with her well and can understand her well.

DS kids almost always have health problems.  Guada has PDA-Patent Ductus Arteriosus. A hole in her heart that we addressed when she was almost 2 years old, the cardiologist placed an amplatzer device. She also has Mitral Valve Prolapse, that's why she's taking a maintenance medicine.

WHAT IS A NORMAL DAY LIKE?

A normal day is like taking care of the kids' needs and the house. I would also call on the kids to know how they are doing and ask if they have eaten. When at work, I would proceed as planned or scheduled.

On weekends, Guada and I love going to the supermarket. It is our bonding time. We frequent one store where the staff, cashiers, guards, sellers, even the managers know her.

YOU ARE A HAPPY AND POSITIVE PERSON.  DO YOU CRY? WHAT'S THE ONE THING THAT GETS YOU CRYING?

When Guada was born, I didn't cry or curse God or ask why He gave me a special child. All I want to do is think of ways to take care of her.  I do cry when I am alone thinking that I would loose her. That she will leave me. I can’t imagine life without her. They say that kids with DS don't live long.

WHAT IS YOUR WEAKEST MOMENT?

Everytime my kids are sick. Especially when Guada was still a baby, she would be in and out of the hospital due to pneumonia, scarlet fever, when she had her amplatzer to plug the hole in her heart.

I also had my weakest moment when my husband and I separated. I know Guada was angry and she said angrily, "Papa, Pa, MOA!" As if she was saying "why did Papa leave the house we would still go to SM Mall of Asia (MOA)!"  

After this incident, and up to the present, I need to get by and take care of my kids all by myself.

WHAT IS YOUR STRONGEST MOMENT?

My kids keep me strong. My love for them, and their love in return, makes my life meaningful. They inspire me to go on. Seeing them grow to be good kids makes me happy.

My strongest moment was when I discovered that I need to love myself before I can love others. 

My strongest moment was the time I got back my self-worth and self-confidence.

My strongest moment was the time I realized that my kids need me.

DO YOU GET TO TAKE TIME OFF FOR YOURSELF?

Oh, yes! There's ME time! Before, I felt that all my time was spent on my family and work, now I may be alone but not lonely. I went back to reading, writing poems, even fond of Do-It-Yourself stuff.

WHAT’S THE ONE CONSISTENT THING YOU DO AT THE END OF THE DAY?

I am still a TV addict! I feel relaxed when I watch TV. I also recap on the events of the day and plan for the next day. I write notes and reminders. I don’t forget to fix my bag; throw away receipts, tissues and other things. I also prepare my menu for the next day, or for one week. I check on my kids to see if they are sleeping, or not. I make it a point to remind them to go to sleep early. Needless to say, I also thank God that another day passed and a new day will come.

WHAT ADVICE WOULD YOU GIVE YOUR DAUGHTER?

Even if she is a special child, I always tell her to take care of herself. One of the first things she learned was making the sign of the cross.  Every time we pass by a church, she would make the sign of the cross. I knew then that I introduced her to God.

I also believe that she loves her brothers. She quarrels with them at times, but she knows that they need to be respected. In the same manner I explain to the boys to respect Guada despite her condition.

I also tell her to behave well. At the dining table, in stores, at school, when she's in a new place outside the house, when faced with other people, etc.

WHAT’S THE ONE ADVICE FROM YOUR MOM/DAD DO YOU REMEMBER THE MOST?

My parents inculcated the golden rule: Love others as you love yourself. I realized that God told us to love others NOT more than yourself. My parents were hardworking persons. They did not work to be rich but taught us the value of self-reliance. I would also remember how we place respect over elders, authorities and superiors. Lastly, they tried their best to send us to good schools, to realize the importance of education and earn a degree. My mom was a teacher while my dad was a lawyer. There were always rules to follow. They were strict, which I did not understand before. I discovered that in life one must also set principles and follow some norms.

WHAT’S THE MOST BEAUTIFUL THING ANYONE HAS EVER SAID TO YOU?

People would tell me that I'm a strong woman and that God chose me to be Guada's mom because He knows I can handle her condition. I'm so fortunate to have her because I have an angel!

Carmina, 52, a Psychology major works at a Human Resources and General Services division, was born and raised in the Philippines. She has 3 children (18, 15 and 10).