Wouldn't it be nice if, when a woman got pregnant, she had the option to sign up to be a Super Mom? Isn't it only fair? No mother-to-be ever says, “Sign me up to give birth to a child with special needs. Perhaps my marriage will become extremely complicated or even end. I hope to lose many of my friends after the baby is born. I look forward to my body deteriorating much faster than women my age. Put my name down for depression.” Yet these are all common realities the Super Mom faces.
It is a fact that the majority of parental caretakers for special needs children are mothers. In today’s world, most dads go off to work not fully aware of what happens at home. Many times, dads turn their backs on their families all together because they are not able to handle it emotionally. I can’t even imagine walking in the shoes of a single mom raising a disabled child. Again, another choice these amazing moms do not get to make. Allison and I have a hard enough time and we are both engaged.
Allison’s body is under constant stress. If she is not talking on the phone to insurance companies or setting up doctor’s appointments or maneuvering Livy or ordering medications, she is driving Livy to therapy or taking Hailey to soccer or preparing dinner. It is not the traditional things that frustrate her although cooking is far from her favorite pastime. It is the additional more complicated issues thrown in on top such as timing a blood draw correctly or giving Livy extra medication if she is having a prolonged seizure or following up on test results that never seem to make it to the right place. The list is endless and it is a constant push and pull for balance. We have friends who have children with special needs and it is a very similar story.
The common theme is that these moms are warriors. They battle insurance companies, school systems and government bureaucracy. They advocate for their children and educate others. They constantly fight to fund programs that are invaluable to their kids and their families. They often sacrifice their own dreams of a career or even a life outside of the home because of the varied and unpredictable schedules they keep. One moment, they may be peacefully picking up some groceries and the next, they may be rushing off because there is an emergency at school. Allison has received phone calls from Livy’s school while sitting in the dentist chair undergoing a root canal. The timing is unpredictable. Thankfully, I am there as a back-up as well as our families but there are plenty of moms who don’t have that luxury.
When talking to a special needs mom, please keep in mind that they would like understanding, not pity. If they are late for an event, seem flustered or have to run off early, please just say, it is okay. They go through so much preparation and angst just to get out the door. If they want to vent, please be considerate and listen. Try not to offer words of advice unless you have gone through it yourself. It is similar to telling her where to eat in a foreign country you have never visited.
If you think these moms have changed, they have. They go through so many different phases of acceptance, denial, anger, frustration, enlightenment and a litany of others. Many lose a piece of themselves forever. The dreams of seeing their child grow up and not do all the typical things kids do is a big part of that. But they have also been given a tremendous gift which helps them to view life from an entirely different perspective. They may not want to talk about all the usual gossip or trends moms discuss. Those types of topics have far less significance in the world of medical crises where every day is one step away from the ER.
If you really want to help a mom taking care of a child with special needs, be there for her. Offer to help with her other children if she has them. Support her cause or philanthropic endeavor. One of the biggest gifts these moms are given is wanting to make a difference in the lives of others. Following her and standing behind her will likely make you a better person as well. Please be forgiving if she takes a while or even days to call you back or answer an email. There are so many things that have to get done on a daily basis and often times, being social is the farthest from her mind. Finally and most important is be accepting of her children. Please look at them and consider the living, breathing miracles that they are. Many have endured serious medical challenges and will forever fight with physical and mental impairments. They will brighten your day and change your perspective. If you open your heart, they will inspire you and give you hope.
To all those Super Moms out there, especially my wife Allison, who gives all she has to make Hailey and Livy’s lives the best and most special they can be, Happy Mother’s Day! Please know that what you do every day is nothing short of amazing! We honor you for your dedication, your courage and your commitment to your families.