By: Amanda Davis, Guest Writer
April 20, 2022
Having a child with special needs is a life-changing experience in more ways than one. My daughter, Kaylee, was born with Down syndrome, underwent heart surgery, dealt with various complications and spent 5½ months in the NICU before coming home. Today, she is in kindergarten — succeeding, thriving and bringing joy to everyone she meets. I’d like to share some of the lessons I learned about having a child with special needs.
1. You Are Not Alone
When Kaylee came along, my first thought was how am I going to do this? I quickly discovered that I had unknowingly joined a club of the most supportive people I had ever met. Parents who have kids with special needs are quick to reach out and help others. There are many parent support groups to join and organizations that share information. You will also develop a team of nurses, doctors and therapists who will guide you along the way as your child develops.
For those who are just starting, you are not alone. Your sphere of influence is about to grow, and you are going to build many new, wonderful relationships with people you never knew existed.
2. It’s OK to Ask for Help
Before Kaylee, I tried to do everything by myself. Now I know the value of asking for help. I learned it takes strength and wisdom to recognize your limitations and to reach out for help. Allowing others to help gives them an opportunity to be a blessing to someone else and allows your relationship with them to strengthen as well.
3. There is No Need to Compare
It’s so easy to get sucked into the comparison game. However, when you play this game, no one wins. The most important thing you can do to help your child succeed is to recognize the unique individual they are and rest in the knowledge that they will get there at their own pace.
4. Celebrate Every Single Milestone
I can’t stress this enough. I learned to celebrate everything. We celebrated when Kaylee could wear clothes in the NICU, move to a crib, breathe on her own, etc. And we never stopped celebrating each milestone — big or small — because there is so much value in recognizing that progress, no matter how small, is still progress. It is in the step-by-step process that we grow. Small steps lead to big achievements over time.
5. Empathy Is a Superpower
I’m certain I didn’t fully understand the difference between sympathy and empathy until Kaylee was born. There are those who are quick to say, “I’m sorry,” and then go about their lives. Then, there are those who are willing to sit in the dark places with you. The ones who are willing to listen to your true emotions without choosing judgment or offering advice. These experiences taught me how to treat people and the value of reaching out to those in need. I have learned that sometimes in life there are no adequate words, but your presence and listening ear is invaluable.
6. Look for the Blessings in Life
I learned to recognize and acknowledge the many blessings that surrounded me daily — whether it was the expert care a nurse was providing for our baby, a successful surgery, a skilled therapist who helped Kaylee achieve a long-awaited milestone or even a kind note found in my mailbox. This experience taught me how to be a blessing to others. It’s motivated me to reach out to others and help them find the blessings in their own lives.
7. It’s Not As Scary As It Seems
Fear of the unknown can be paralyzing. If I could do this experience over again, I would quickly tell my scared self that it’s going to be OK. You will have support. The medical field is full of options. Your baby will grow and succeed. You will meet some of the most amazing people. You will never be the same, but in the best way possible.
8. The Storms Make the Sun Shine Brighter
If there was never any rain, the plants wouldn’t grow. Just as if we didn’t have trials, our character wouldn’t grow. It is through the storms that I have learned to appreciate everything. Having a child with special needs has made the colors around me brighter and my world bigger. It has changed my perspective on everything. I now know what is truly important in life, and I live each day focused on those things.
9. Presume Positive Intentions and Educate Others
People will make comments when you have a child with special needs. Sometimes those comments will unexpectedly hit a nerve and cause hurt feelings. I have found that instead of getting upset, it is best to presume that the person is trying to be nice or lacks experience when it comes to kids with special needs. I have learned to take the time to explain Kaylee’s diagnosis. If people don’t know better, they can’t have the opportunity to do better.
10. Slow Down and Enjoy Life
I used to live a pretty fast-paced life. I had my lists, and I checked them off. I made my plans, and I got things done. Then, Kaylee came into my world at a significantly different pace. She immediately taught me to slow down. I learned that the day can still be enjoyed, even if my list is not complete. In fact, in the big scheme of life, my list really wasn’t that important after all. I learned that living in the here and now is most important.
11. Give Yourself Grace
Mistakes will be made. Kaylee came home with a feeding tube, and I had a crash course in nursing. Honestly, I made every rookie mistake I could make, and Kaylee survived. I learned to give myself grace as I navigated these uncharted waters.
When I look back at myself as the terrified mother who just found out her child would have Down syndrome and need heart surgery to live, and then look now at the person I am today, I wouldn’t trade a minute of it for anything. Not only has my child with special needs changed my life for the better, but she has improved the lives of every person who has come into contact with her. Kaylee leaves a positive impression on the heart of every person she meets. For those who are blessed to be a part of Team Kaylee, she has broadened their perspective and enriched their lives. Children with special needs make the world a better place.
Next Steps and Useful Resources
- Want more? Read Kaylee’s story