This is a question that I have struggled with since discovering Scarlett’s conditions. Am I a “special needs” momma? Part of me has always said yes, but another part of me says no. So what’s the answer?
Merriam-Webster defines Special Needs as: “any of various difficulties (such as a physical, emotional, behavioral, or learning disability or impairment) that causes an individual to require additional or specialized services or accommodations (such as in education or recreation)”.
Per this definition, I am and so are many other mommas that may not feel that they are because their child’s condition is not one that is normally seen as special needs. With Scarlett’s condition of Persistent Hyperplastic Primary Vitreous (now more commonly known as Persistent Fetal Vasculature), we are still, four months in, learning exactly what it is. Our pediatrician, who has been in practice at least 30 years had never heard of her condition! So if a trained medical professional has not heard of it, why would it be one of the more mainstream conditions that are labeled special needs. Scarlett not only will require a prosthetic to help her eye orbit to grow properly, but down the road may need other therapy to help with depth perception. People with monovision can struggle with depth perception and right now we are not sure what will happen down the road as we live in the right now.
Special Needs Moms = Super Hero Moms
I know many moms reading this are thinking that all moms are super. Although this is true, Special Needs Moms have to educate themselves, their family and extended family about their child’s condition. It is a constant learning process. We have spent every day since Scarlett’s diagnosis learning about ocular prosthetics, possible complications if her orbit doesn’t grow correctly, and many other facts that I never would have thought I would have needed to know.
Special Needs Moms eat, breathe, and sleep their child’s condition and treatment. In addition to that, if they have more than one child, they are also trying to make sure that their other children understand why momma may not be able to spend as much time with them as they want her too. You have to find ways to carve out time just for your other children while making sure that whoever is taking care of your special needs child understands exactly what it takes to care for them whether they have autism, cystic fibrosis, or a prosthetic. I don’t know how to fully explain exactly how hard it can be at times if you have not been in this position. There are also different degrees of being a special needs mom depending upon your child’s exact condition.
In the end, I’ve learned that it can be lonely. There are times that all you want to talk about is your child, their condition, and what all you have to do for them. Other times, you just want to be alone and rest. This is not always possible, especially if you have other children. I have taken the role of being Scarlett’s advocate straight on and full force. I started this journey I am on, because it was hard for us to find information on her condition. I did this to help keep this momma sane. Both my husband and I feel that we were given this medically special child because God knew we would take the best care of her we possibly could. My granny, also, says that God gives special babies to special parents for a reason.
Shout out to all momma’s… especially those of special needs children… you have my love, respect, and understanding.