To The Mom Who Thinks She’s Doing It Wrong

This post is inspired by my first daughter Elle who turns 12 years old today.

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 therapies, 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.

You can read more of our story here, here, and here

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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/

Angela
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12 thoughts on “To The Mom Who Thinks She’s Doing It Wrong

  1. Vivien

    Beautifully written! Teary-eyed. I can totally relate to every sentence. Their hearts are as big as the universe. E is so beautiful, sending virtual hugs to you and E ??

    Reply
  2. Kerri Hansen

    wow Angela, what a beautiful post and such an insightful and helpful message! Both of my girls have epilepsy. Well, in my older daughter, as soon as she started medication, her seizures stopped and at the age of 8, her epilepsy resolved and she is now medication and seizure free. My youngest has had a totally different experience, the same medication is not working for her and she has tons of other health issues that we can’t seem to get to the bottom of. Your post really hit home with me, as I have been struggling and feeling the weight of it all. I was just asking myself this morning “what am I doing wrong, I feed my kids healthy food, I make sure they get enough sleep, I am trying to do all the “right things” but still I have a little girl who is sick all the time and still having seizures…then I stumbled across your post and it made me feel so much better. Thank you for sharing and Happy Birthday to your beautiful baby girl!

    Reply
    1. Angela | Mommy Diary Post author

      Hi Kerri, thank you for sharing your story! I had no idea you dealt with this with your daughters too. It’s definitely not an easy journey and it fills motherhood with so much doubt, worry and stress. I admire your strength and courage and it’s good to hear your older daughter is free from seizures. I think all we can do is do our best and accept the battle that we must fight for our daughters. My daughter’s condition is untreatable at this point and even researchers and doctors don’t know much about this rare and fairly new diagnosis. It’s still really really hard sometimes but I’m now able to see the joy and blessings in it. So glad to reconnect. Hope you and your girls are well! <3

      Reply
  3. jehava

    Beautifully said! My oldest is 11 and he has taught me so much about perfection and letting go of all of that. Great wisdom and beautiful party!

    Reply
  4. Diedre

    What a beautiful post. I didn’t know this about your daughter. You are doing such a great job mama. This post was so eloquently and sweetly written. High five mama.

    Reply
  5. Joyce

    Thank you for sharing the words of your heart on this platform! As a mother of a child with autism, I share many of your sentiments. Motherhood in itself is already a whirlwind of struggles and ups and down- having a child with special needs just elevates the parenting experience to a whole new level. While I am the first to admit that some days are HARD, I wouldn’t change a thing about our family. Except maybe have another kid, but that’s another story for another day. ?

    Reply

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