Friday, 27 October 2017 11:46

The Gift of a Child with Down Syndrome

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Each of our children is precious, and each is an extraordinary gift from God, but there is something very humbling about having a child like our Helen - something that can only be described as a gift. Since October is Down Syndrome Awareness month, and since our daughter will be turning 13 on November 1, All Saints Day, I would like to share a little about this young lady with whom God has allowed us to share our life.
 
When I was pregnant with our eighth child, our oldest was only thirteen, and we were homeschooling. Needless to say, life was very busy, but we were overjoyed at the thought of another child. Even though my doctor knew we were staunchly pro-life, he asked me, since I was over 40, to have a more detailed ultrasound so we “could be prepared if there were any complications”. Because an ultrasound is non-invasive, and would appease the doctor, I agreed. I truly believe what happened that day was from the Holy Spirit, and helped bring me the peace I would need through this journey with our daughter. When the technician was done with the ultrasound, I asked her if the baby looked okay, not worried at all. I will never forget how she looked straight into my eyes and said, “Your baby is just fine.” But at that moment, even though she was telling me the baby was just fine, I knew without a doubt that my baby had Down Syndrome. It is difficult to explain, but it was one of the very few moments in my life where I’ve had such clarity.
 
I will never know why the technician said that — maybe she missed something on the sonogram altogether, or maybe she didn’t have enough information to make a definitive prognosis. But I like to think she was trying to save a life, not knowing if I would be among the vast majority of parents who choose to end a pregnancy when there is a possibility of a congenital disorder. Regardless, she was the instrument through which the Holy Spirit spoke to me.
For the rest of my pregnancy, I never heard a word from the doctor about any problems with my baby. But when Helen was born, I knew the second I looked into that beautiful face, that she had Down Syndrome. The doctor didn’t say anything, my husband didn’t say anything — it seemed no one knew. Everyone just cooed and fawned over the sweet baby.
 
Soon after, when Helen was brought into the nursery, I walked down to see her. Through the window, the doctor was lifting up Helen’s hand and pointing out something to several nurses standing over the bassinet. A common characteristic, I had learned in the one book I read about Down Syndrome, is the single palmer crease. Most people have two major lines across their palms, but often people with Down syndrome have only a single line. I had my confirmation right at that moment, and, oddly, I was completely at peace. The doctor came out and spoke with us in our room, suggesting we get a simple blood test done to confirm his suspicions. Kevin looked to me nervously, but because I was calm, so was he. “Just tell us what we need to know, and God will give us the grace” was his response.
 
After the blood test confirmed the diagnosis, we were encouraged by the love and support from family and friends. I remember well calling my husband’s brother, who also has a child with Down Syndrome. As soon as we told him, he shouted, “Really?? Congratulations! How wonderful! What a gift you have been given!” He was the only one who had that reaction — others were more taken aback or sympathetic — but his response gave me such hope.
 
Another gesture that helped me tremendously during that time was from a friend. Anticipating what my concerns and fears would be, she found and purchased a stack of volumes on everything I would need to know to homeschool Helen. She showed up at my door, put the stack of books on the kitchen table — everything from Teach Your Child with Down Syndrome to Read to Teaching Math to the Child with Down Syndrome, and several more. Here Helen was barely a few days old, so delicate and tiny, but my friend knew — as a fellow homeschooler — other than her health, her education was what I feared the most. Truly this was a gesture I will never forget. Just knowing that children with Down Syndrome could be educated, could be taught to read, write, and learn their multiplication tables — that’s all I needed to know. My feelings of being overwhelmed were put to rest. If there was a way to homeschool her just like her seven siblings, then that’s what we would do.
Falling head over heels in love with Helen was so easy. She was, quite honestly, the most beautiful and precious baby one could hope for. But it was not without its crosses. Because of her low muscle tone (hypotonia) and shape of her palate, latching on when nursing was very difficult for her. I remember spending a lot of time in tears while I nursed her, frustrated and exhausted. But God gave me the grace to persevere and she eventually learned, which was especially vital now that we knew she had a problem with her heart.
 
Half of all babies born with Down Syndrome have heart issues, and we soon learned that Helen would need open heart surgery when she was strong enough — hopefully by 6 months. We kept her very close to home those first months, because, due to the large hole in her heart and faulty valves, the leakage of blood caused her heart to overwork and her heart muscle to enlarge. She was weak, fatigued while feeding, and more vulnerable to illness.
Helen’s surgery was both one of the most difficult and beautiful days of my life. Handing her over to the doctor, I buckled in the hallway and wept. She was so very tiny, and they were about to open her up and repair a large hole in her heart while a machine breathed for her. We went back to the waiting room and Kevin’s brother and wife — the ones with their own child with Down Syndrome — stayed with us. Together, we waited and prayed the rosary, laughed, and cried. When the doctors came out and told us all went well, we rejoiced together. I hugged the doctor and told him I would forever thank God for giving him the skills to fix our baby.
 
Helen came home and began thriving, literally from the first day. She grew steadily, just not as fast as our other children. Because of her low muscle tone, she wasn’t able to crawl. Instead, she scooted on her bottom, propelling herself with her arms, to get from one place to another. For the next few years, we saw how Helen would, again and again, figure out how to do the same things as the other kids did, just in the way that worked for her… and usually with a big smile on her face. Her ingenuity and creativity always made us laugh.
 
Probably because her siblings are all very musical, and she heard plenty of it while even in the womb, Helen seemed to love music. Any time she was fussy, we would put her next to the piano and one of the kids would play. Immediately, she would quiet down and be calm. She loved nursery songs and lullabies, and would be almost instantly soothed if someone sang to her. Even today, one of her greatest joys is music — singing her heart out with the karaoke machine, playing the piano, or dancing to salsa music with her Papi.
 
When she was around two years old, we invested in a children’s sign language program and together, we all learned to sign. She loved this, especially because the videos were musical and fun to watch. Her older siblings constantly wanted to practice their signing, so she got a lot of practice. The auditory and visual repetition of learning to sign helped to expand her receptive and expressive vocabulary and language skills. Because of this, she started to speak from an early age and transition away from signing.
 
From the beginning, we decided we would not speak “baby talk" to her. She needed to be surrounded by people who were verbal, articulate, and would help her to learn to speak coherently — something that can be very difficult for children with Down Syndrome. We read to her constantly, stimulating her, and encouraging her to sound out words as well as sign. Tactile and musical books were her favorite; something that stimulated more of her senses. Thankfully, with so many older siblings, constant stimulation was not a problem in our home!
 
And God, in His perfect family planning, gave us another child four years after Helen was born — a little brother for her to play with and to love. No amount of therapy could match the amount of learning possible from loving a younger sibling, and then, chasing after him as he began to outgrow and outrun her. These two have grown up to be the best of friends.
 
helen salvador
 
As she continued to grow, we came to realize that Helen was just another child who needed love and stimulation, lots of one-on-one attention, and the family was the best environment in which to provide this. We didn’t want to look at her and just see Down Syndrome and all its limitations. We wanted to (and still do) look at Helen and see a beautiful child with endless possibilities. Other than speech therapy, we weaned off other therapists, and decided to homeschool her like her other siblings. Teaching her to read was the first step.
 
Using a solid foundation of phonics, and with a lot of repetition (and praying daily for patience!), Helen learned to read beautifully. It is difficult to think of anything else that has given me more pleasure than to see her, lying on the couch nose deep in her book, giggling at the funny antics of Pippi Longstocking. She carries a book wherever she goes, and the gift of reading brings her such joy.
 
She is learning right along with the other children, both academically and in life skills. This summer, after years of trying to teach her to swim, she decided she was just going to do it. She said, “Look, Papi, I can swim”, and with all of us holding our breath, we watched her paddle across the pool, smiling all the while. She never ceases to surprise us.
 
I could go on about all the things Helen has “accomplished” — learning to play the piano, learning to dance ballet, singing in a children’s choir, attending her first week-long summer camp and being awarded “Best Camper” for her joyful and obedient spirit. But what we really love are the little things — like how she makes us laugh with the mismatched clothing she says are “stylish”, or how she wakes up smiling virtually every morning. Often she will jump out of bed excited because it’s so-and-so’s birthday, or saint day, or anniversary. Sometimes I don’t even know whom she is talking about — but she knows. She remembers all these special dates, whether it is a family member or another child she just met, and to her, every one is a cause for celebration.
 
I have learned over the years that God only gives us the grace we need for the moment. I don’t worry about the future for Helen. God has big plans for her, and she has the love and support of her family to help and to guide her. We give thanks daily to Our Lord for entrusting our family with His gift of Helen.
 
Helen has changed the hearts of many, even beyond our family. Everywhere she goes, she radiates goodness, innocence, and pure love; something that is so very needed in today’s world. People recognize it immediately and smile. Simply put, she makes people happy — and isn’t that in of itself such a beautiful reason to be?

Cheryl HernandezCheryl Hernández and her husband of more than 30 years, Kevin, live in Florida. They have nine children, including a daughter who is a Servant Sister. They are lay members of the Home of the Mother.