One of the most common things people say to me is, “I don’t know how you do it. I could never be a special needs parent. There is a reason Maya was given to you and not me.”
Well, I have news for all of those people. I have no super powers or special training. I don’t believe special kids are given to special people. It’s random. Nothing in my life before February 9, 2016 could ever have prepared me to be the mom to a medically complex child. I am not a teacher, a therapist, a pediatrician, a nurse. When g-d gives you lemons, you make the sweetest darn lemonade of your entire life because you have no other choice. Parents step up to the plate and you handle it. I promise each and everyone that if you were given a special needs child, you would be the best parent you can be. Even you would surprise yourself and find out you’re capable in ways you didn’t think you were.
The most important advice I can give to those who have a child with special needs/medical issues is to get yourself a “village.” Parenting is hard enough as it is, and if you have a child who needs extra help, you as a parent will too. The village is so important. You must learn how to ask for help and accept it. I woke up after diagnosis day and sought out my people. I joined Facebook groups for Williams syndrome and the WSA and connected with some amazing moms who I would want in my village regardless of our kids’ diagnoses. These moms picked me up and set me back on the right path. They talked me off the ledge at 2 a.m. when Maya was screaming or doing something weird that made me have a panic attack. You also need supportive family and friends in your village. We are so blessed our family and friends love Maya no matter what. The outpouring of love during open heart surgery was palpable across the country. #TeamMaya (fundraising team for the Chicago Carnival but also so much more) got so many get well signs and care packages. Our friends and family never hesitate to babysit if we need a break. They are first in line to donate and attend our annual walk events for the WSA. And finally, your village must have the best doctors and therapists you can find. If you have a pediatrician who won’t listen to you or a therapist who doesn’t have patience for your child, it’s time for a new one. Your child is only as strong as the village behind her, and we have no time for mediocre villagers.
It is no secret that the divorce rate among special needs parents is twice that of typical parents. In fact, some studies have quoted as high as 80%. Now, I know that there are plenty of single moms and single dads out there who are rocking this special needs parenting thing alone because they have to, but if you are married, it is so important to focus on your marriage. Scott is my rock and my best friend. He would be an amazing father regardless but he’s extra patient and loving with Maya. Their bond is beautiful — many days I’m jealous of that. While Maya still doesn’t call me momma, she now has TWO names for him — she calls him dada and Scott! My village may have crumbled years ago if it wasn’t for my excellent co-captain, and I will do anything and everything I can to make sure our marriage is as healthy as it can be (except keep the house clean/organized, I’m just not good at that).
I DO think our marriage is stronger because of Maya, but I’m NOT embarrassed to admit we had to go to therapy when she was initially diagnosed, and we have to keep very open lines of communication in our house at all times in order to make this work. As a special needs parent you cannot forget yourself or your marriage. You must make arrangements for date night or little trips away. You cannot help someone else if you haven’t taken care of yourself.
--Jenna Ottenheimer, with assists from her daughter Maya and husband Scott.
