This post is inspired by my first daughter Elle who turns 12 years old today.
Raising a child with special needs called SYNGAP1
My Special Needs Parenting Story
My first daughter Elle 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.
If you’ve been following my blog for some time and read some of my personal posts, you would know that Elle 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 therapy, one we will deal with for the rest of our lives.
As a special needs parent, writer and blogger I find myself faced with this dilemma. Do I use my daughter’s special needs to raise awareness, educate my surrounding and advocate for more special needs children? Or do I keep her hidden away from public eye and protect her in the privacy of our home? Do I use her story to inspire and empower or do I keep her story locked up in a vault with hope that silence will ensure her safety?
I still haven’t figured out the right answer so I won’t go much into detail today– but what I do know is that twelve years ago, I thought I did it all wrong. When I observed her miss most of her important milestones with a broken heart, when I sat through yearly IEP meetings filled with worry and stress, when I desperately researched various disorders night after night for an answer that no doctor can give, I thought my life was wrong.
I thought I had it all wrong, that something went horribly wrong with my life, my marriage, her life, her destiny. None of it made sense and I couldn’t see just what God had in store for me when He entrusted me with a special needs child. I thought why me? Why her? It was hard to accept. Yet I had to. I had to just accept, embrace and have faith. Because God had a plan for me. And everything was going to make sense one day.
Today through the grace of God, it does. Today my beautiful firstborn turns 12 years old and we just celebrated one of her best birthdays. We invited her closest girlfriends, a few of them whom she has known since preschool. She’s surrounded by so much love and support by friends, parents of friends, teachers and aides. She invited her school teachers to her birthday party and they showed up with some of her favorite things. She received a special Birthday bear wearing a shirt that smells like cupcakes. She got not one, but three pairs of pink sunglasses that she’s been asking for months. Each gift contained so much love and thought for her, I couldn’t believe just how much impact this one child has in her surrounding.
She blew out 12 candles from her favorite blueberry chiffon cake. We sang her a birthday song four times, once with her friends, once with her grandparents and cousins, and twice on our way home from dinner just the five of us. We ate good food, we laughed a lot. While we were walking out to the car after dinner, I told her thank you for being born. She held my hand tightly. I looked up at the sky and thanked God for choosing me to be her mother.
Everything was and is perfect, just the way it’s supposed to be….and every year her birthday comes around I see this more clearly.
If you’re a mom who thinks you’re doing it all wrong, hear my story. You’re not. There is a reason, there is an end. Life is never free from struggles, because we would never grow this way. We need pain to grow because we’re human. Growing pains isn’t just the title of a 80’s sitcom. It’s life’s necessity. No, it’s life’s gift.
If life is making you feel like you’re doing it all wrong, it’s the universe’s way of teaching you humility, forgiveness (mainly of self), perseverance, courage and most importantly, faith. It’s hard to believe but everything passes and one day you’ll realize you weren’t doing it all wrong. In fact, you were on your way to make things right, living a life that is full of unexpected blessings and unforeseen wisdom.
Unexpected blessings and unforeseen wisdom.
Repeat and believe in them. Because they’re on their way. Sometimes it just takes time for the fog to clear.
Once the fog lifted there she stood, my beautiful firstborn who is perfect in every way. She is so special and so much more than her diagnosis, it’s difficult to put into words how much love and blessings she brings to our family.
Happy birthday to my beautiful, courageous, smart, sweet, loving daughter who radiates her surrounding with her special traits. Thanks to her sweet disposition and strong heart, she makes the world a better place by teaching us that everyday is a blessing and that everything is grace.
Everyday is a blessing and everything is grace.
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.
Early developmental intervention is important to insure that affected children reach their full potential. Most children benefit from occupational, physical and speech therapy. Currently there are no treatments as researchers and clinicians are still trying to understand the biology of the disease. Every family and every child with SYNGAP1 provides information that can guide us to a cure. http://www.bridgesyngap.org/