13 Awesome Things About Parenting a Child With a Disability

1. You leave behind all the competitive playground talk. “Little Timmy can say 20 words and he’s only 18 months.” “Well, Tallulah did that, but at 16 months.” Okay Barbra.

2. You see milestones as milestones. When you’ve spent years learning the process inside out of taking a first step and put in the hours of physio, standing and walkers, getting close fills your heart with more joy than you ever could have imagined. Being part of the process is magical.

3. Learning empathy and compassion for everyone’s situation — we’re all on completely different paths. It makes you realize the struggles we’re all going through in life. Be kind, always.

4. Becoming an expert in your child means being a semi-specialist in nursing, speech and language, physio, the health care system, the social care system, so many alternative therapies, diets, etc. Being able to fight for your child means knowing their development, being one step ahead and coordinating all the support your child could need.

5. Understanding labels can only take you so far. Having a disability doesn’t define you. You can never know what it’s like for a disabled person anymore than you can know what it’s like for anyone who is different from you. No two are exactly the same. You can have more of an idea, but every person is an individual and finding their ability is your special mission.

6. You learn not to strive for “normal.” It’s overrated.

7. Everyone tells you what a great parent you are. Which of course you take graciously but in all honesty it wasn’t a choice. We all have life challenges and it’s the way we face them that defines us. The only other choice would be walking away, some do, but being the best parent for my kids is what I strive for.

8. You don’t take anything for granted. You know to be the best you can be at anything takes time, dedication, and a hell of a lot of passion. People may say “make time for you,” but your child always comes first. The time you do make for you becomes so much more meaningful ensuring you make every second count just walking up a hill or swimming. Keep the balance to keep going — it’s a marathon, not a sprint.

9. The other parents you meet along the way. They are all strong in my eyes. A fount of knowledge, a shoulder to cry on and someone else who can relate to a sometimes strange sense of humor you develop.

10. It’s a kind of Zen training. You really do have to let go, detach from expectations, create space inside yourself. Learn who you are to not allow the weight of future fear freeze you. Being present and waking up to the beautiful precious time you have together. Tomorrow may be harder, so living for today is a must. Letting go of fear has beautiful echoes throughout the rest of your life.

11. You learn to talk without words. You tune in to people’s energy and learn to slow down. Every person has a space within them where the universe resides. Tune in. Listen. Namaste.

12. Sometimes it means getting a great parking space wherever you go — your child needs it. When you have so many balls in the air, it’s OK to use accommodations.

13. You wouldn’t change it for the world. If there is one thing I could do, I would help others see that having a child with complex needs can be a challenge, but it’s also the absolute best thing in the world. You learn to love it and that has been the biggest gift.