Having only been on this journey into Down Syndrome for a year now, I only just learned that World Down Syndrome Day is on March 21st each year. I had the want to do something to honor the day, but on such short notice I wasn’t left with many options. While laying in bed the night before, the idea to compile a list of the 21 things I have learned so far on this journey came to mind, and I just knew I had to do it.
These days, social networking is the best way to get your message heard quickly. While Facebook can leave a bad taste in my mouth most of the time, I have realized it can serve a purpose and be very effective when it comes to soliciting the attention of a large, and very captive audience. I knew if I was to do this, Facebook was the best option.
That morning I hesitated. I suddenly felt slightly embarrassed and nervous to be writing such personal and raw emotions for the world ( the world of Facebook) to critique or judge. I reached out to a good friend that I always turn to when I need nothing but total honesty. I was somewhat surprised about how adamant she was that I do it. Her words exactly, “I think its absolutely imperative that you do this.”
And she was right. Not only was it therapeutic, but the reception received was more than I could have ever imagined. I have never before seen such beautiful things be said about me, my husband, and my son. I walked away from this feeling refreshed and reflective of the last year of my life. I feel stronger than ever, and confident of the future.
With that said, I hope you enjoy them and thank you for taking the time to step inside my world as a mother of one very special little man.
21 Lessons I Have Learned From Being a Parent To a Child With Down syndrome
2. Always trust your instinct as a parent. You, and nobody else, knows what’s best for your child.
Photo Credit~Lindsay Lanier
3. Milestones are priceless. Never take for granted each and every little thing your kiddo does. Ignore books and their so called “timelines”.
4. You’ll get support in many different ways, whether it’s silent support or vocal advocacy. Even though at times you may not understand the support, eventually you’ll see that every type will help you in one way or another-and you’ll realize this just when you need it the most.
5. Take breaks. In order to be the best we can be, we must always allow ourselves time to do things that make us happy.
6. After being on this journey for a year, I realize the essay “Welcome To Holland” isn’t as accurate as I once thought. It helped me a lot at the time, but now I see it’s not the whole truth for us. We are still going to Italy, just taking the longer, more scenic route to get there!
7. We feel lucky because not everyone has the opportunity to take time to appreciate the present, especially when considering that we live in a society that constantly pressures us into rushing towards the future.
8.Never allow all the bad people in the world to let you stop believing in the good. In this journey, we have met total strangers that are passionate about our son’s success. We have realized that although our laws and government resources are flawed, there are so many incredible resources/programs that strangers have fought to give us access too.
9. Reach out to the others that are going through similar experiences. Even though you already know it, you are never alone.
10. When you lose patience, have the courage and strength to ask for help. I have no idea what I would without my partner. Anyone who does this alone, with or without DS, has my utmost respect.
12. It’s ok to not be your child’s therapist everyday. Allow yourself to just be the parent and not feel pressured to have every activity be a means to help them progress but just to be silly and play.
13. Choose happiness. When plans change, we only have control over how we handle it. Once the dust settles, choose happiness.
14. You are never, ever, too old to need your girlfriends. I am blessed to have such a strong support system, and my kid has no idea how much he is loved by so many crazy ladies…
15. At first I thought I would hate the attention Avery would get from strangers since he has to wear glasses.But that’s simply not true. People are drawn to him, and it makes me happy that he can change someone’s day by just a smile. At times, a stranger’s compliment has completely kept me from going to the dark side on a hectic day.
16. Doctors don’t know everything. They make educated guesses. It’s okay to advocate for yourself and your child-ask more questions and seek alternative opinions.
Photo Credit~ Heleyna Holmes Photography
17. I had no idea there are three types of Down Syndrome. Trisomy 21, Translocation, and Mosaicism. Avery has Mosaic DS and it is the most rare, occuring only in 1-2% of all cases. This means he has some typical cells and not all are affected. To learn more….
18. Feelings are ok. Even if they are uncomfortable. I had many scared, ignorant feelings when we first found out Avery’s diagnosis. The best advice I was given was that all we can do is think them, process them, and move on.
19. All kids have special needs. They are all unique, and as parents we all share a common bond of triumphs and losses. What is easy for some, may not be easy for others- DS or not. Parenting is universal at its core. It’s really hard, and really wonderful.
20. Someone once said life is a series of experiences- each one making us stronger. This experience has made my eyes open to a new part of the world I otherwise would not have known. My heart is bigger, my world is bigger. For that I am thankful.
21. “Let go, let go. Oh well, what are you waiting for? It’s all right. Cause there’s beauty in the breakdown. So let go, let go. It’s so amazing here. It’s all right, cause there’s beauty in the breakdown.” ~Frou Frou
Photo Credit~ Heidi Caldwell Photography