7 Life Lessons I Learned From Parenting My Toddler With Special Needs

The longer you wait for life to calm down, the less time you can have to actually enjoy it. From time to time, I have to remind myself of that, particularly as a first-time mother with a child who has special needs. I get so absorbed in our routine of medicine administration, scheduled meals, weekly home health nurse visits and appointments with specialists that I forget to live in the moment.

For a mother, it’s natural to worry about your child. I’ll be honest, for my partner and I, accepting diagnosis after diagnosis and all that each one defines has been difficult. What has helped me get through the stressful moments was finding the light when darkness was trying to prevail.

I found the light when I recognized the important life lessons my 2-year-old with short gut syndrome (also called short bowel syndrome) was trying to teach me. There are seven lessons I carry with me that I’d like to share with you:

1. Children have their own developmental milestones that they’ll reach in their own time.

As my son has been trying to overcome oral aversion, he reminds me that development isn’t a competition with others, it’s a personal celebration.

2. Children can be more resilient than we realize.

Sometimes, we have to let them show us how to be resilient, too. I’ll never forget how our son experienced a near-fatal case of gastritis. It was terrifying. Within a couple of weeks, he was back to his happy, smiling self and home in time for his first Christmas with his big brother.

3. When facing adversity, look for the silver lining to rise above your circumstances.

Although our son’s disease is incurable and challenges arise with his central line, G-tube or digestive system, we’re learning from our experiences the best ways to keep him healthy. As a family, we work as a team to overcome these challenges, which inevitably make us stronger and more experienced.

4. You’ll come across opportunities to step outside of your comfort zone.

Take advantage of those opportunities because they can help you realize your strengths, such as compassion and patience. You may also discover talents you never knew you had, such as being resourceful and a great problem solver.

5. If you’re a Mama Bear, own it.

You are your child’s best advocate. One of my son’s doctors called me “hot-blooded” because I’m passionate about advocating for my son. I’m grateful my son challenges me to be a better mother every day.

6. There may be people who don’t get or who won’t try to understand a diagnosis.

When you come across people who do get it, embrace them because they see you. Lean on them because their support can make you stronger.

7. Love your partner or spouse as much as you love your child.

Who better knows what you’re going through than the person going through it with you? My partner is my person and I am his person.

Despite the challenges, there are many joys my partner and I experience as we see our son grow and learn. After all of the emergencies and bouts of illness and the long hospital stays and IV fluids, we remember to cherish our son. Just like life, we continue to move forward because our son has given us the strength to choose joy when life gets hard.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.