Since I began sharing Caden's journey with the world, I have been labeled a fighter, Supermom, Dr. Mom, a "special" Mom and an amazing Mom. Now as much as I would like to take credit for being all of these things, the simple truth is...I am really not.
Sure I put up my fists, throw punches and advocate like hell to get Caden the best care possible. I spend hours every day researching and reaching out to those I think may be able to help him. I have given up almost everything I used to do for myself for the sake of my children (don't all good parents do that???). I have argued with doctors, insurance companies, pharmacies, therapists and nurses. I have been up all night holding my son's head up as he's vomited. I have spent holidays in the hospital and have ridden in more ambulances and medical helicopters than most.
None of this makes me Supermom. It makes me tired, frustrated, discouraged, lonely and confused. I do these things because I HAVE to, not because I want to. I would much rather be setting up play dates, taking vacations and doing all those things I see other Mom's doing.
What you see and what you read are who I want to be but not who I usually am. Yes...I try to stay positive, inspiring and upbeat. But in the end, when the lights go out, I am often broken and scared.
Don't get me wrong, I love my life. I remind myself every day of the woman who struggled with infertility for ten years. I remember the pain of ever wondering if I would have children of my own. That dream came true. Sure, it was not exactly as I had planned, but I have my family and as beat up and broken as we all are...we are beautiful.
But there are times when I am too tired to fight the fight and just want to give up. I know I can't, but even if I could take just a little break for a while, it would be a nice relief.
I am merely a shadow of who I once was and although I never want to be that person again, I sometimes miss her. She was a dreamer; a visionary if you will. The woman I am today can not see past tomorrow because Caden does not allow it. I have embraced the living in the now and am less disappointed because of it. I can not imagine what the future will hold, but I do miss dreaming sometimes.
I am frustrated. I am frustrated with waiting for the miracle to happen and am beginning to think it never will. This does not mean I am giving up, but simply learning to accept things as they are. It is sometimes easier to expect very little and be pleasantly surprised than to set high expectations and be disappointed. I was told Caden's cerebral palsy was mild to moderate and that he should be walking by age four. Caden turned four in August and can not roll over, let alone walk. However, when he learned to scratch behind his ear, I was super excited (and now have to keep his nails very short).
I am sad. I don't cry that much and sometimes wonder if I actually have run out of tears like my Mom said I would because I cried over everything as a kid. Or maybe I am just too tired to cry. There are some nights, though, where I just can't keep the tears from rolling down my cheek and hitting my pillow. As much as I know Caden is happy, I will always want so much more for him.
I am jealous. Yes...I will say it...life isn't fair. I get jealous of the family with the decals on the back of their mini vans. You know the ones...proud of my honor student, soccer mom, the family of four wearing Mickey ears with the dog and cat (who for some reason are also wearing Mickey ears). Now I know that their lives aren't perfect and one of my creeds is to never judge because I do not know what is really going on in someone else's life, but for some reason I still sometimes get jealous.
I am angry. I am not even sure at who? Many times I am angry with doctors, nurses, insurance companies, pharmacies and therapists, but usually I am angry at myself. There is a guilt in that I could not keep my babies inside me longer; that I was so miserable by the end of my pregnancy that a part of me wanted them out. Why couldn't I just hold onto them inside me a few more weeks? Would that have changed everything for my son? I remember I made a little poster that I hung across from my hospital bed when I was on hospital bed rest. It simply said "It is better I suffer now, so they don't suffer later". I read this all day every day. My suffering (I had a very difficult pregnancy) ended, but for Caden he will struggle (I will not say suffer) every day of his life.
I am tired. I am tired of not sleeping. Even when Caden does sleep through the night, I don't because I lay there waiting for him to wake up in pain or gagging and retching. I am tired of changing diapers. I am tired of drawing medications, pushing food into my little boys stomach and having puke buckets everywhere (every room in the house, the cars, his stroller, diaper bags). I am tired of the doctors, nurses, insurance companies, pharmacists and therapists. I am tired of checking my phone all day waiting to hear I need to go to the hospital because Caden is not doing well. I am tired of vomit. I am tired of rectal suppositories. I am tired of my house being taken over by equipment and medical supplies. I am tired of trying to find "big boy" gifts that Caden can operate (I think he has them all). I am tired of researching for answers. Yes...I am tired.
So you see, I am NOT Supermom. I am human. Caden, on the other hand, truly is a Superhero. He never complains, feels sorry for himself or wishes for more. He seems perfectly happy and content with the gifts he's been given. He is the selfless one. He is the inspiration. Caden, well deservingly, has won the hearts of so many around the world. He has given my life purpose. He's the fighter, the champion, and simply amazing. I am just the lucky Mom who gets to have him in her life.