As the saying goes, “family is forever.”  Every single human being on Earth has some sort of a family.  Obviously, there are several different kinds of families.  Whether it’s blood relatives, a church family, a family of friends, or another combination of people, families are what get us through life.  Family members celebrate the good times together and are there to embrace one another during the difficult times in life.  In past entries, I’ve discussed how my disability affects my immediate family (my mom, dad, and sister).  I’ve also shared about how I’ve been blessed with an amazing group of friends who accept and embrace my unique circumstances, but my disability also affects another group of people who I dearly love.  My extended family—my grandparents, aunts, uncles, and cousins.

My mom and dad each happen to be the oldest of four children in their families.  They were the first to get married, and they were the first to have a child.  My grandparents were filled with excitement with the expecting of the first grandchild.  My aunts and uncles were eager to meet their first niece or nephew.  As I’ve shared in previous entries, my mom had a completely normal pregnancy and I was born on my due date.  The complications happened during the last few minutes of delivery.  I can’t even fathom what it was like for my grandparents, aunts, and uncles to get that call saying that there were complications and it was unclear if I’d survive.  What an awful phone call to get—especially when they were anticipating joyous news.  In the days following my birth, my grandparents and some of my aunts and uncles came with my parents to see me in Neonatial Intensive Care Unit (NICU).  Visiting the NICU isn’t a walk in the park.  It’s a frightening place.  Even though medical professionals assured my parents that it was a fluke mishap, my traumatic birth put a scare into the entire family—especially since some of my uncles and aunts were planning to have children soon after.  Thankfully, the initial shock did wear off, and it was realized that it wasn’t anything genetic.

During the first few years, my grandparents, aunts, and uncles did whatever they could to help.  My grandparents and aunts and uncles who were in the area learned how to take care of me.  It’s not uncommon for grandparents or aunts and uncles to babysit, but my relatives had some additional responsibilities when they watched me.  That didn’t stop them though; they were always more than willing to take me for a night or weekend so that my parents could enjoy some time out.  I had one set of grandparents who lived very nearby.  Some of my best memories from my childhood are when my grandma took me to physical therapy in Oshkosh on Friday mornings (because I didn’t have Early Childhood that day) and then I’d spend the day with her and grandpa.  It wasn’t what grandparents did with “typical” grandchildren, but that didn’t matter to them; they wanted to spend time with me.

My first cousin was born when I was two or three years old.  Relief came in the family when she was perfectly healthy.  My parents were overjoyed to have their first niece; however, I think at times it was hard for them to see her meet the normal milestones like walking and talking because I hadn’t done those things and they knew I’d likely never would.  My mom has told me she remembers having to explain to me why my cousin was able to walk and talk, but I wasn’t.  I can’t imagine how hard that must have been, but I know she did it in a positive way. 

My sister and many more cousins came in the following years.  It has never been discussed in front of me, but I’m sure my aunts and uncles had to have conversations with their children about my disability.  I’m sure that they made it clear to their kids should greet and hug me (we’re a hugging type family) when they first see me.  I’m sure they were told to try to include me in everything too.  Having to explain my disability to my cousins couldn’t have been easy for my uncles and aunts—especially since there’s quite an age range among it my cousins.  Like most little kids, many of my cousins went through a stage where they were scared of me because I was visibly different, but my aunts and uncles did their best to try to encourage interaction with me.  I’m sure my cousins asked lots of questions after seeing especially when they were really young, and I can only assume that my aunts and uncles did their best to answer them. 

My grandparents and relatives continue to help as I get older.   When I went to school at UW-Whitewater, I was fortunate to have my other grandparents and an uncle and aunt close by.  My grandparents came up every week to do my laundry for me.  It was very nice to see them so often.  It also gave my parents piece of mind that if I ever had an emergency, people were close.  When I’ve had medical issues the past few years, my grandparents, uncles, aunts, and cousins have been always right there to offer support in any way they can.  I also think they realize that seemingly minuscule achievements for most are often huge accomplishments (graduating college, moving into an apartment, getting a job, etc…) for me; they understand we celebrate the small victories in my life.

As my cousins have grown up, they have gotten better about interacting with me.  Obviously, like in all families, some cousins are closer than others.  Overall, though, in recent years, I’ve noticed that many of my cousins are taking time to interact with me without being prompted to.  I can’t tell you what an awesome feeling that is.  I’m well aware that it takes some extra effort and patience to have a conversation with me.  It’s to the point where many of my cousins are dating, getting married, and having babies.  I know that my aunts, uncles and now cousins probably have to explain my circumstances to their significant others and children. Again, I know that it can’t be an easy conversation to have, but they do it because they want them to feel comfortable around me.

Having somebody who has a significant disability in a family has its challenges.  Extended family has a choice whether or not to accept the circumstances the person has.  I’m beyond blessed to have an incredible extended family who not only accepts, but embraces the person I am.  For that, I’m forever grateful! 

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.