My daughter turns 12 years old today. Every time her birthday rolls around I can’t help but to pause, drop everything that I’m doing and reflect on all that transpired since she was born. A child’s birth is monumental and life-altering for many women because it fulfills a lifelong dream of becoming a mother. For me, her birth was life-altering because it led me to completely step outside of my comfort zone and find peace, love and healing in a new realm as a special needs parent.
My daughter is a special needs child. She learns and processes information differently than her peers and takes daily medication to control her epilepsy. Her formal diagnosis is SYNGAP-1, which is a gene mutation that causes developmental disability, seizure disorder, autism-type of behavior and speech delay among others. It’s a pretty serious and rare condition that requires lifelong intervention and therapies, one we will deal with for the rest of our lives.
Parenting a special needs child is not easy and we deal with many trials and difficulties that only families with special needs children understand. There were many tearful nights, heartbreaks and disappointments in the past 12 years. And we are fully aware that our lives will never be truly easy. But I can authentically say that I'm at complete peace with my daughter's disabilities and that our family is so much better because of them. Here are ten things my daughter taught me over the years.
1. Be thankful for every little thing
There are so many things to be thankful for in life, even ordinary things we take for granted like talking, walking and writing. There are millions of people in the world whose muscle tone is so weak that they have trouble holding a pencil or use scissors. Next time you talk to your child about his messy penmanship or not getting straight A’s on her report card, think about that for a moment.
There are people who can’t see, who can’t hear and who can’t talk. There are people who lack limbs, fingers and toes. There are people who can’t function without taking medication everyday for the rest of their lives. There are people who can’t read, who can’t process thoughts and emotions, who are exceptionally sensitive to sounds and lights that are so normal for us.
So what do we have to complain about today? Be thankful for every little thing, even our breathing is a gift from God.
2. Statistics are irrelevant to fate
1 in every 691 babies in the US are born with down syndrome. About 1 out of every 88 children in the US have autism. 1 in 500 babies is diagnosed with Cerebral palsy. 1 in 3 of them cannot talk, 1 in 5 cannot walk. Approximately 6.5 million people in the United States have an intellectual disability and 48 for every 100,000 people have epilepsy.
Today, none of these statistics and diagnoses matter. My daughter is who she is because she is meant to be who she is. It’s fate. It’s a part of her presence in the Universe. It’s how God created her. It’s that simple.
3. Growing pains are real
Growing up is hard. Growing pains are real. Being a mother, wife and adult means pushing ourselves to new limits and dealing with problems responsibly and wisely. I don’t know if life will ever get easier- but what I do know is that every obstacle challenges us to new awakenings, encounters and experiences.
Growing pains isn’t just the title of a 80’s sitcom. It’s life’s necessity. No, it’s life’s gift.
4. Perfection is elusive
Growing up as the first child of a strict family, there was a lot of pressure to be perfect- to aim for straight A’s, never cause trouble, only make good friends and not make mistakes. Its long term effects didn’t quite settle in until after I became a mother and today, I aim not for perfection, but for imperfection.
Perfection in motherhood is elusive; a fallacy, an urban myth.
Through my daughter, I learned early in motherhood how detrimental perfection can be to ourselves as well as our children. We are not designed to excel at everything, just that one thing that strikes our fancy is most likely our God given talent. Discovering our innate talents and passions, is road to true success.
5. True happiness is simplicity
True happiness doesn’t come from wealth, fame or an ivy league education. We chase these things because we complicate the meaning of happiness for ourselves. We forget what simplicity means, because the world is full of greed, desires and longings.
True happiness comes from simple things in life. It comes from being present in each moment free from worry and fear. It comes from saying thank you, I’m sorry, I love you often and laughing a ton. I know this because I have yet to meet a person who is happier than my daughter.
6. True love is earned, not given
True love takes courage, strength and perseverance. It takes time and pain. The love we feel towards our significant other on our wedding day and the love we feel for our child the day he/she is born mark only the beginning of a lifelong journey. True love is earned, not given.
True love exists for everyone. We just must be willing to work for it.
7. Rainbow is more beautiful than a clear sky
I used to pray for a clear sky, where I experience no sorrow, pain or loss. I viewed these things as negative, unnecessary and avoidable. Now that I’ve seen the magnificence and beauty of the rainbow, I handle rainy days with more grace, strength and hope. Pain is a natural part of life. As long as we keep our eyes and hearts on the rainbow, rainy days are no longer unbearable.
8. Pay attention to your surrounding
When we have it all- a home, a car, a family and healthy children- it’s difficult to remember those who don’t have these things and it becomes too easy to take things for granted. I too, am guilty of this. But raising a special needs child serve as a blessing in this way, as it is a constant reminder not to take things for granted and to always be mindful of my surrounding.
It helps me to forgive more easily, give back more generously and count daily blessings, no matter how difficult the situation.
9. God really only gives you what you can handle
I heard this a lot- that God only gives us what we can handle. There were moments when I wished He didn’t trust me so much, and wondered how I can get out of the situation alive. What lessons can I learn, when everything hurts so much? I asked. Why are you letting these things happen to me and my child? I cried.
Now looking back, I realize I’ve grown tremendously. I no longer think, why me?– because now I know.
God gave me Elle because He knew I would be the best mother for her and she the best daughter for me. He couldn’t have been more right.
10. God is in your child
God does not reside “out there.” He lives in us and especially in our children. I see God in Elle’s eyes all the time. Sometimes she looks at me tenderly because she is frustrated that she can’t communicate as freely as her sister. I feel her frustration and pain. And I see God during that vulnerable and aching moment.
Sometimes she throws a tantrum, kicking, throwing and screaming, unable to process her surrounding or control her emotions like a typical child. If we’re in a public setting I panic and if we’re in a car I feel anxiety as I have to focus on driving, yell at her to put on her seat belt AND calm her down all at the same time. Even during these high stress moments, I know God is present.
Ten minutes later, my sweet angel daughter comes back as if nothing happened. She hugs me and tells me she is sorry. And we move on.
In that moment too, God is there- smiling, nodding and reassuring us that we are doing a great job as mother and daughter. We were meant to be together in this world, I just needed a little time to learn and grow.
SYNGAP1 is a rare genetic disorder highly associated with developmental disability, autism, and epilepsy. It is caused by a mutation on the short arm of chromosome 6. Currently there are no treatments as researchers and clinicians are still trying to understand the biology of the disease.
You can find more of author's writings on her personal blog, Mommy Diary.