by Maria McCutchen
In a perfect world, no one would suffer with illness or a disability. Instead, everyone would be healthy, and there would be no suffering of any kind. But this isn’t a perfect world – there are plenty of people who do have illnesses and disabilities to live and contend with.
Disabilities are a challenge for most people. They can make life a real challenge. If you allow it, your disability can bring you down mentally and emotionally, on top of physically. It is up to you; however, how you decide to live with your disability. It can either be a positive or a negative influence on your life, as well as the lives of others.
When I was diagnosed with a rare brain cyst called a Posterior Fossa Arachnoid Cyst in 2004, I was devastated. It was not only a rare type of cyst, but rare for the fact that it was so large — consuming nearly 1/3 of my brain. It compromised all my vital parts of my brain from cerebellum to brain stem. I needed a shunt to help keep the fluid from building on and around my brain. But soon, what was supposed to help me, would wind up hurting me. The doctor following my shunt allowed it to over drain for far too long, and this caused my brain to sag, and the brain stem to herniate, or fall, into my spine.
I felt defeated. As if I hadn’t already been through enough already, now I had even more horrific medical conditions to contend with, and life was becoming harder and harder to deal with. What may have been the hardest part of my disability was that I had two boys at home that were young. They were 5 and 7, and I was no longer able to be the kind of mom I wanted to be — that I should be. This realization caused a depression to sneak in.
Over the following years I began to see just how difficult being a mom with such a major disability was. I was no longer able to do the things I used to do with, and for them. I couldn’t remember things easily; primarily short-term memory information. I began to feel frustrated, and frustration even began to show in my boys’ attitudes. They didn’t fully understand why I couldn’t remember things; like dates, and homework assignments, things I needed to get for them at the store and much more.
I had to find a way to incorporate my new brain problems with motherhood. So I began to research my condition as well as well as research parenting with a disability so that I could learn tricks and tips on living with a disability — how to manage it, how to manage parenting with a disability and more.
I found out that you need to take care of yourself first, in order to take care of your children. This is even more important than when you have no disability. When you don’t take care of yourself, you can quickly become unable to care for your children.
I had to learn how to put me first, when it came to my kids. I know that sounds selfish or the opposite of what we always hear about being a mom, but you do — you have to care for yourself first before you can care for your kids. If you allow your health to deteriorate to the point where you can no longer care for your kids in a positive and substantial way, what good are you doing, really?
Another tip I learned was to not beat myself up for things that I cannot control. I was always in the habit about getting upset with myself for my inadequacies. The more I read about parenting while living with a disability, the more I realized that I have to be able to forgive myself. I have to be able to view my disability, not as something to get in my way of being a mom, but as a challenge I would have to learn new ways around. I had to view it as something that would strengthen me. And eventually it did.
Parenting with a disability is a challenge, especially depending on the type of disability. You may need outside help, and that is ok. You may need to reach out to friends and family, and know that most people not only want to help, but can feel as if you are shunning them if you don’t ask them to help. It is human nature to want to help, so let people. You may not be used to it at first, but you will get used to it. And you will grow to appreciate it.
Go easy on yourself. I found that I had to quit beating myself up for what I could no longer do, but learn to forgive myself and go with the flow. I am a different person than I was before my cyst started creating problems, and I have had to learn to accept who I am now, and not be upset with myself for not being able to be the healthier, more vibrant “me.” And the more I’ve learned to accept it, the more I’ve relaxed about it. I am who I am now, and no matter how much I wish I could be my old self, that will not change. So why stress about it? Relax.
The more you plan and prepare for things, the easier it will be to meld into your new life as a person with a disability. Read-up, study, prepare, and you will do just fine.
Maria McCutchen lives in North Carolina with her two boys. She is a freelance writer and author, publishing articles for the web and the book “It’s all in Your Head.” She has become an activist for brain cysts; speaking, educating and advocating for those affected by this rare brain disorder. Follow Maria on www.arachnoidcystsupport.blogspot.com. Learn more about Arachnoid Cysts on EmpowHer.com.