Raising a child with special needs is not easy.
It’s nerve-wracking. It’s exhausting and can sometimes be traumatizing because it’s often dealing with the unknowns.
But, despite it all, I do know that there is a superhero in my home!
At 4 years old, our son Hezekiah has already overcome a lot of physical, emotional and mental challenges. He was diagnosed with Down Syndrome (Trisomy 21), a genetic abnormality that affects everything in his life.
He’s also been through a major surgery to repair his heart when he was 4 months old. We’ve also had more than our fair share of ER and ICU trips.
He is, indeed, our superhero!
Today, he is standing strong and is still fighting whatever comes his way. Someday, he will tell his own story. He will share his own life’s adventures. His life will speak to many as he is already doing so today.
But, in the meantime, I want to share three important life lessons I’ve learned (so far) from my son who has taught me a lot about being his mom:
Take it one day at a time
Taking care of my son can be overwhelming.
There’s a mountain-load of things to do every day. My schedule is filled with doctors’ visits, therapy appointments and school. We see all kinds of specialists who check on him to ensure that he stays healthy and strong.
When he does get sick, my world stops to attend to him, hoping and praying that it’s not an emergency that will send us back to the hospital again.
However, amid the overwhelming work, I have learned how to take things one day at a time.
I carefully plan my day and deal with the other things later. The worries of today are more than enough to think about and don’t leave room for tomorrow’s concerns. Because even if I am prepared with everything related to his diagnosis and know what to expect, there are still things beyond my control.
Ultimately, God holds his life in His hands, and I choose to trust Him every day for our son.
I just have to take things one day at a time.
Find your village
They say it takes a village to raise a child. It takes an even bigger village to raise special needs children.
I know I need help.
Taking care of my son can feel like I’m working every day — holding both day and night shifts plus weekends with no paid leave. As his primary caretaker, I find that I cannot do it on my own. I need to ask for help from people (my husband, siblings, my in-laws, friends, and babysitters).
Some bring him to his doctor’s appointments and some play and entertain him when I am not able to. No matter how big or small, my village helps me carry the load and, for them, I am forever grateful.
In addition, I also try to connect with other parents who are also raising their own superheroes. Whether online or in person, I find it helpful and reassuring to have support groups — families who are on the same journey with me.
I am learning so much from their experiences and how they handle the pressures and challenges of life.
They have also helped lead me to the right resources for him.
I am thankful to be part of a village who helps me get the tools I need to serve Hezekiah better. It really does take a village to raise a child. (More so, one with special needs.)
I encourage you, find your tribe.
It’s a marathon not a sprint
I learned that taking care of my son is like running a marathon and not a sprint. It is a long-distance race of caring for him from the moment he is born and probably until his adult life.
Currently, I am preparing for the Honolulu Marathon, and I am applying the same principles in raising Hezekiah.
It starts with mental preparation.
It’s disciplining my mind that I can do it and that I can finish strong. I don’t run the entire time. I set a comfortable walk and run in intervals and keep at it for miles and miles.
If I am continuously running and not pacing myself, I will wear myself out quickly and probably not finish the race. My goal is to finish the race, no matter how long it may take.
Keeping myself “fueled up” also helps me in this goal. Physically, I need to sustain myself with food and water. With raising my child – exercise, rest, quiet time and even a hobby are all needed to fill up my physical, spiritual and emotional tanks.
We are running a marathon for our superheroes. It’s not a sprint. It’s an endurance run.
So, let’s run wisely, walk with purpose and commit to finishing the race. We can do it.
I know there is a lot more that I will learn and experience as a mother of a special needs child.
There will be hardships and there will be celebrations of success. But I will keep on going and not give up. I will be here for my child as long as he needs me. I will take things one day at a time. I will get help from my village, and I will run this race of life as if I am running a marathon.
After all, I am raising a superhero. (And if you are too, be assured, momma, with planning, prayer and a lot of help from people who care, we can find the “super” in us too.)
