Yesterday I spoke to an old friend (we will call her Pia)…someone I hadn’t spoken to in quite awhile. A few months back, we had talked about vision and she picked my brain for tips from my experiences with K-Bear. Pia had concerns about her youngest son’s vision. He is only a month younger than K-Bear and he was born premature and spent some time in the NICU.
For months, she has been trying to tell people that there was something “off” with her son’s development. Her family just chalked it up to his premature birth and tried to convince her of the fact. But a mama knows. A mama has a gut feeling about things and most of the time, those gut feelings are dead on.
On Wednesday of this week, Pia received news that no parent wants to hear. Her baby boy has CP. It’s a mild case, but a diagnosis of CP is a diagnosis of CP. Her journey is just beginning.
Since we spoke, I keep thinking about our journey so far…and what I’ve learned. What I have to sometimes remind myself of. What I wish I had known sooner. And I know that I write this blog, not just to get awareness out there and communicate to our loved ones the things that are going on with The Conductor, but also to potentially help other families that may be experiencing similar adventures. And truth be told, writing this blog is quite therapeutic for me, as well. On more than one occasion, I have cried at my keyboard. Or vented. Or laughed. Did I mention cry?
So, these are the things I have learned throughout the journey so far….
Don’t – focus on the negative. Do – remind yourself of the good things in life. It is way too easy to get caught up in the things that aren’t going the way you want. The things you cannot change.
Don’t – think about what could have been. Do – whatever you have to to help your boy be the best that he can be. No matter what happens, you love him and wouldn’t trade him for the world. Your boy needs you and no one else can do it the way his parents can.
Don’t – get caught up in the therapies and the appointments. Do – remember that your boy is a kid. I have spent a lot of time worrying about doing what I can for The Kid. Worrying about physiotherapy. Orthotics. Glasses. Patching. We’ve gone through a lot and we’re doing everything we can. But sometimes, I have to stop. And breathe. And remind myself that it’s okay for me to just enjoy him, as my son, as a boy who likes to play with his mama. To hear his giggle. To see his smile. To enjoy him.
Don’t – be too hard on yourself or blame yourself. Do – recognize the effort that you make. You are human. You can only do so much. And this is the hardest lesson for me. There is no magic wand. You cannot say a secret word and have everything fixed. As a mama, you don’t want your boy to have to struggle to do the things that come so easily to most other kids. You want it to not be so hard for him. But you can’t fix it. You can’t make it easier for him. You can only help him. And support him. And love him.
Don’t – compare your boy to so-called “normal” kids. Do – love him for who he is. The second part is easy. He’s fabulous and you love him. The first part is incredibly difficult. Even though I know that The Squirtlet is approximately 6 months behind, it’s almost impossible for me not to compare him to other kids his age. Kids that are walking. And talking. And using utensils. I think it’s okay to do once in awhile…because it’s pretty much impossible to avoid…just don’t get caught up in it.
Don’t – care what other people think. Do – rejoice in your boy. And his uniqueness. And his love. Some people are assholes. You can’t change that. And it doesn’t matter what they think. Because you know the truth. There is no one in the world more precious and more perfect than your boy. Everyone is different. We all have strengths and weaknesses. Anyone who claims otherwise is a liar.
The lessons continue everyday. It is truly a journey. Cherish every moment. Remember what’s important. Your family. Nothing else matters. Mmm…again…I find myself crying at my keyboard. Who would have thought?!?!