It was a very remarkable moment for me when I first saw my kid holding his bottle. Just like any other parent, it was a very heartwarming sight knowing that my little one gave me a glimpse of his independence.
The only difference is that some parents see this in their kids in the early months upon birth but for me, I saw it when he was five years old. In case you’re wondering, yes, I am a special needs mom.
My son was diagnosed with Lennox-Gastaut Syndrome
My precious little one, Khalil Gabriel, whom I fondly call ‘Gabgab’, who is now six years old, was diagnosed with Cerebral Palsy, Global Developmental Delay and Lennox-Gastaut Syndrome.
Lennox-Gastaut syndrome is a rare disease, and a severe form of epilepsy which is characterized by multiple generalized seizure types; abnormal brain wave patterns, and cognitive dysfunction or developmental delay.
From the moment he was diagnosed, I knew our life would never be the same. There are times that I would be seeing other parents celebrate their kid’s milestones one after the other.
Don’t get me wrong, I am celebrating with them. However, if I’m being honest, it killed me bit by bit, knowing my beloved child would not be able to experience that-or at least not yet.
It was during those times that I started to unconsciously compare my situation with others. They hold birthday parties and celebrations while we stay in the hospital month on month. They share videos of going out and having fun in the sun while the videos I have on my phone were videos of him having seizures so that I can show it to his neurologist.
Some kids play around very early in the morning, while my kid can be awake for 24 hours. We see kids play and bicker around while Gabgab has nurses and therapists as his playmates.
Some parents are able to travel anytime, while we would need to bring about four bags, medicines, oxygen, and a wheelchair almost everywhere we go.
Pain. Loneliness. Anger. Frustration. Self-pity. Fear. Darkness. All of it. All at once.
Saying that it is difficult would be an understatement.
Coping up with Lennox-Gaustaut Syndrome
But in the midst of all these, there are times that I would see his eyes sparkle as he cheerfully smiles after a series of laboratory tests. While looking at him I realized that yes, it was definitely exhausting and heartbreaking but it was him who experienced the pain first hand yet he was the one that comforted me.
He was physically dependent on me because he could not walk and talk but he showed me that I needed him more than he needed me. His light and sunshine was just so contagious.
That was the beginning of an incessant fire within me. I started to research and deep dive about his condition. I’ve been with several support groups and I met people who really understand.
I am not alone, I became more motivated than ever. I was driven not just by providing for him but also in being a better version of myself.
People always tell me they wonder how I manage to do it and this is how I would always respond.
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Staying strong for my child
I am not as brave as you think I am. Of all things, I am afraid. I am afraid at the thought of death- at the thought of losing him or dying before him, I am afraid of him one day not being able to recognize me, and a lot of other things. Also, I am afraid of not being enough for him.
I am also not as strong as you think, I break down almost everyday. I burst because of little things. But at the end of the day, I drew strength and courage from him.
He is the reason for my existence, he is my core. He is the reason why I want to be great at the things that I do. I want to make him proud of his momma as his momma is very much proud of him.
So if you think I’m brave and strong, this is not even close to my little warrior’s strength and bravery. I am just his hands and feet but Gabgab is the true warrior.
This is for all the special needs families out there, may this be a reminder that you are not alone.
I am with you. The battle will be long, but the journey will always be worth it.
As a special needs mom, there are so many things I want to share specially about my child’s condition and the rare disease that he has. Parenting a child with special needs is challenging on its own but being able to share these stories would be in the light of understanding the situation better and spreading how kindness can be so special.
Every single day is an opportunity to be a little kinder.
What is Lennox-Gaustaut Syndrome?
According to National Organization for Rare Disorders, Lennox-Gastaut Syndrome is a rare form of epilepsy that affects a person during their infancy or early childhood period.
Symptoms of the said rare disease can mostly be observed in a child aged 3 to 5. Types of seizures are the most apparent signs that a child has Lennox-Gaustaut Syndrome.
It can be hard to manage because the illness can defy the effects of anti-seizure medications.
As of now, causes of most cases of patients with Lennox-Gastaut syndrome are not known. Researchers work to know which genes can be linked to the rare disease.