Written by Jaclyn Skalnik
“Holden is the most incredible gift, we didn’t know to ask for.”
This is a phrase that I am reminded of daily, even when we have hard days. Within the Down syndrome community, there are ranges of emotions that a parent can cycle through on a daily basis. There are some days that there is no cycle but just an overwhelming feeling of responsibility. Some questions that run through my head are:
1. Do we have the right medical care for him?
2. Are we doing enough for him?
3. Are we doing too much for him?
4. What do we want for him?
5. What will he want for himself?
6. How will this supplement affect our son?
7. Is this new treatment worth the risk?
8. Will others accept him?
9. Will he understand what his extra chromosome means for him?
10. What would he be like without the Down syndrome?
11. Do people see Down syndrome when they look at my son?
12. Our life would be so different if Holden wasn’t born with the extra chromosome, but how?
13. I can’t protect him forever, so what do I need to do to equip him and others?
14. What will his voice sound like when we can carry on a conversation?
15. Will others be patient with him?
16. Will others have expectations of him?
17. Who will care for him after we die?
18. How does his Down syndrome impact his older brothers life?
19. Will he live past the age of 6?
20. Will he ever get married?
These are just a few. They are honest questions. But when I step back, I can actually ask most of those questions about my older, neurotypical son as well. So what’s the difference? They are more alike than different, but I’ve realized it’s more about how others perceive my child than anything. So many of my questions come from a place of fear for how others will treat him and how others will come to him with a set of their own stereotypes. My concerns about how he may not get the same chance at opportunities because of others ignorance or lack of awareness. I want to inform others. I want to share my Holden with others. I want others to see what he is capable of, but at the end of the day, I want HIM to know who he is, regardless of how others perceive him.
My son is Holden. He happens to rock an extra chromosome. It’s a part of who he is, but not all of who he is.
Jaclyn, thank you for sharing your beautiful story with us! We love you Holdy!