My beautiful daughter giggled as if nothing had changed. Grinning with her bright eyes, my 3-year-old gave me a look that said, “Life is good, Mama.”
But something had changed for me. Because life didn’t feel good as we sat in that doctor’s office that day.
My baby had just been given a diagnosis that would stain our lives forever: Angelman Syndrome.
These two words sank me to the bottom of an ocean of grief and anxiety of which I barely stayed afloat. Over the next few days, I researched and buried the information that I didn’t want to accept. This rare genetic disorder causes developmental disabilities and neurological problems, including speech impairment or absence, seizures, sleep disturbances as well as physical and personality characteristics. It’s typically caused by a mutation or deletion on chromosome 15, known as the UBE3A gene.
Non-verbal, seizures, the forever intellect of a three-year-old– these words burned into my heart as I grieved my daughter’s disabilities. I wasn’t only grieving her disabilities. I was grieving the dream of helping my daughter grow into her career and watching her get married and have her own children.
This syndrome was not a diagnosis that we could overcome with the right specialists or diligent therapy. This syndrome was here to stay.
Seven years prior to the diagnosis, I had finished my OB/GYN residency, confident that I would have the skills to prevent bad birth outcomes. After 27 years of schooling, I was ready to start my career and become a working mother.
When it was my turn to get pregnant, I had stellar prenatal care. I ate well. I slept well. I followed the same rules that I would advise my patients.
And yet, when my daughter was born, we knew something was different. She could not be soothed, she could not eat and she screamed the first six months of her life. No matter what I did as her mother, it was never enough. As someone who loved to help others, I could not help the one I wanted to help the most. This realization plummeted me into a deep postpartum depression.
Motherhood broke me. But when I received this diagnosis of Angelman Syndrome, becoming a special needs mama shattered me into a thousand pieces.
I could no longer say, “This is just a phase” or “She will grow out of this.” Instead, I was trapped in the same day for the rest of my life.
There was nothing I could say or do that would fix her disability.
And so after I wallowed, I learned how to live with it. I learned how to pick up the thousands of shattered pieces and rebuild a new woman.
Before motherhood, my foundation had been built on what I could control (or at least had the illusion of control). After motherhood, my time, my body and my dreams were no longer just my own.
But in this quiet place of grief, new dreams were formed.
I went back to the basic building blocks of what I valued to rebuild the foundation of my mothering. I was no longer ‘just’ a mother to a toddler. I was a special needs mom now. And thus, I started my journey of answering these questions:
Building Block#1: What gives life its value?
Is it in the ability to contribute to society? Or is it found in the ability to love and be loved? My daughter will not be able to work a normal job. But her ability to connect and love without prejudice is one of the most beautiful things I have ever seen.
Before I had my daughter, I would have thought health was defined by traditional genetics. But my daughter, with her chromosome 15 mutation, has more healthy and beautiful dimensions than my “normal” genetics.
Building Block #2: Is there a higher power that can be trusted when I’m shattered?
At the end of myself, I found a new relationship with God. Before I had my daughter, I was self-reliant. But my daughter gave me a new relationship with God, where I saw God’s intentional creation as a gift. This relationship brought me peace and continues to bring me peace when tomorrow is uncertain.
Building Block #3: Is there a purpose for my grief?
Grieving my daughter’s disabilities helped me understand other women in their grief. Suddenly, I could relate to every woman who had experienced the loss of a dream for their child.
Grief gave me access to a more intimate world. Before my daughter, I had compassion for the grieving. After my daughter, I became an advocate for the grieving.
Building Block #4: How do I deal with being different?
Before I had my daughter, I cared what people thought about me. But after living a public life of disability on display, my daughter freed me from other people’s expectations. I no longer needed to live up to what others thought about me. I was free to embrace differences and even cherish them.
Building Block #5: How can I give back?
I see the world differently now. I no longer expect perfection from those around me, but have greater compassion for those trying to do their best. I am more patient with “incompetence.” I have learned to listen to non-verbal language and re-translate what the heart is truly saying. These are skills that I would have not learned without my daughter.
On that day in the doctor’s office, I died to my dreams for my daughter.
But in this same place, I learned to live for something more.
The broken pieces were built into a foundation that was stronger than if my motherhood journey had gone exactly as I planned.
My 3-year-old had been right all along when she “told” me that “Life is good, Mama.” I just missed it the first time when she said it because I was so focused on what I had lost instead of what I had gained.
But eight years later, she is now my rock. She is my cheerleader. She is the first one who comes to the door when I get home to greet me. She speaks love with her hugs. She speaks wisdom with her joy in all circumstances. I think about all of the things I would have missed if I would have continued to wallow rather than get up and rebuild.
I am thankful for the mother and the person that she has made me.
And so now I tell her, “Yes, life is good, because God made you just the way you are. Thank you for freeing me from myself! I am one of the luckiest mamas in the world!”
If you have just found out your child has a diagnosis you didn’t expect, it’s okay to grieve. It’s okay to wallow. It isn’t supposed to be this way.
But then you need to decide if you will drown in your tears or if you will let these tears water your roots to become a stronger version of yourself.
When you let go of control, you will become a part of something greater than yourself. When you let go of what it is supposed to be, you will find other mamas (most mamas) that don’t have that perfect life either.
Unconventional motherhood humbles us and then builds us on a stronger foundation.
Sometimes we have to be broken before we can be made whole.
It is where the story becomes richer. Your story isn’t over, mama. It’s only the beginning.
