Some may call me strong, driven, determined, a secretary, a financial analyst, an accountant, an advocator, a decision maker, or the ultimate CEO of a corporation called Cameron. But the only thing Cameron calls me is mom. If you have a child with special needs, you know exactly what I am talking about. All of a sudden, you become a person of many titles. You are constantly scheduling doctors’ appointments and therapy appointments while juggling everyone else in the family. And let’s face it, financially it can be difficult as well because you need to budget your money to make sure you can provide them with the best therapy. If you are lucky to get funding, you are constantly filing receipts and recording payments. Then you must make huge decisions that can impact your child’s future, such as: Do you put him a special needs class or do you leave him mainstream? Do you add this medication with all those side effect or do you not? Do you start OT or speech – because you can’t afford both.
If you had known me before I was a mom, I was the quietest, most shy person around. This personality was forced to change, though, when after three years of having children, I had a child who had intractable epilepsy and a moderate intellectual disability – and I became loud, because I had to, and I found my “voice” because my mother instincts kicked in. I became this middleman between 10 different doctors and specialist. As a concerned mom, you start to question everything, and for me, that lead me into research. You start to realize that your child’s needs are specific and if you’re going to get anyone to understand those needs, you’re going to have to speak up. There will be times where you may need to put yourself on repeat before anyone hears you. You will meet with doctor after doctor and specialist after specialist and you’ll walk into a room at a school filled with educated people such as psychologists and social workers and SERTS, and you won’t even flinch. You advocate and you will advocate well, and you begin to tell your child’s story over and over again. Then one day you suddenly stop and that story you’ve been telling for years hits you like a ton of bricks. You feel like you can’t breath and a big lump in your throat starts to grow and get tighter and tighter when finally, you have a burst of tears flowing down your face; and you feel like you won’t stop crying and what you have been living through will never end.
So, you have your moment and you remind yourself you’re doing a great job, you’re even an inspirational person and an amazing parent. You are strong, driven, and determined and the best advocator for child because no knows your story better than YOU. You run on adrenaline, and epinephrine, until you’re exhausted and realize that you have lost who you are
As my son got better and appointments slowed down, I got sick – this CEO was slowing down. I was diagnosed with precancerous cells in my cervix and needed to have surgery to remove them. Years later I was diagnosed with papillary cancer, and I had to have two surgeries to remove my thyroid.
I fought so long for my son and now I was fighting for me. Thoughts flooded my mind such as,
“What if I die? Who was going to take care of him and advocate for him like me?” Thankfully, it’s five years later and I am cancer free.
But what now, who was I if I wasn’t just the mother of Cameron? The mother who had 10 different therapists and doctors in her phone, the mother who had to remember three different medications at three different times of the day; the mother who had to “fix” her little boy, because that is what consumed me.
My self-worth was gone, my drive was gone, my personality was gone. I didn’t even have a favorite colour anymore and I was lost. I continued to dwell on the child that I didn’t have and all the hard times we went through and how it wasn’t fair that we had to go through what we had to endure.
How do you find your purpose again when Motherhood consumes you?