I’ve been mulling over a conversation with some friends I had a while back regarding how wildly capable and resilient children are. Somehow, the conversation always ends up coming to Bowen- probably because he’s one of my favorite topics. One friend who sees Bowen every day at school mentioned how capable he is, and in this particular instance (as he was throwing a fit), how he only behaves like this for me. Meaning, he accepts redirection and being told “no” with a lot more resilience at school than he does with me. I accepted what she said because typically, you WANT a child to behave “worse” for you as you are their safe place. I was fine with Bowen being upset in this particular situation; but what got me thinking was a bit of a judgement of myself- “Do I do TOO much for him?” That lead to to my own self-talk and conversations with a few people about my relationship with Bo and all the things I do for him; that may be a little over the top.
Don’t get me wrong, I’ll let him struggle when he needs to try harder on certain things such as homework or getting himself dressed and undressed. I’ll let him throw his tantrum when he is being unreasonable or doesn’t like the answer I give him. I am also not a perfect parent by any stretch of the imagination and even after parenting for close to 8 years now, sometimes I still feel like a rookie.
I have had so many moments with Bowen ripped away from me it still feels unfair after all this time. While other moms were snuggling their newborns and taking in their sweet baby smells, my nose was filled with smells of hospital disinfectant. I sang lullabies over the beeps, whirs and clicks of machines and tubing. Someone had to help me hold him and assist me to sit down so I didn’t snag one of the tubes and cords in the hospital. We had to clip his “nose tail” (our affectionate term for his NG tube) to his onesies when we did tummy time. We had to then delay tummy time further after his g-tube surgery so he could heal.
I’ve held my infant down for x-rays one too many times for me to sit there and let him struggle over and over and over when he is unable to make sense of what is going on in his mind and his body.
Maybe some are reading this and thinking I still need to heal. Maybe some would say I just need to move on, get over it… he’s 5 now and everything that happened was YEARS ago. But any mother who has ever suffered any type of loss with their child will know that you don’t just get over it. You never move on. You carry a part of that child with you forever. Hopes, dreams, memories- they are imprinted in you and a piece of you just as your fingerprints are a part of you. The memories and experiences make you unique in your life’s journey and they don’t change. You may change, your feelings about certain things may change; along with relationships, friendships, jobs, houses, ALL may change over the course of your life. But the flesh memories literally in your body. In fact, the National Institute of Health issued a study showing that fetal cells stay in a mothers body FOREVER. Like FOR-EV-ER! It is called microchimerism- look it up š
I also must given myself credit where credit is due. I have taken early childhood classes, I have read the parenting books and I also have delved into the rabbit hole of diseases, conditions and diagnoses that a lot of parents don’t have to. I always joke that the FBI would probably be so confused by my search histories. They are weird! My husband also says I probably know more about Bowen’s condition than his own medical team does. My understandings of how eating and swallowing works, gut-brain connections, the inner workings of the heart, lungs and GI tract, along with mental health for both children and adults is far above a layman’s general knowledge. I am an expert of my children and I know what’s best for them.
I don’t feel guilty for Bowen’s diagnoses. But I do carry guilt about not being able to be there for him at certain times; just like I’ve felt guilty about the same for Cael. I have had to leave baby Bowen in the hospital to be with Cael, and I have had to leave Cael to be in the hospital with my Bo.
Even though he is a bit older now, and we’ve been hospital free for a couple years, I have to advocate for him. I have to protect him and I have to fight for him. If he is neurodivergent on top of all his other medical conditions, then I feel like I REALLY have to fight for him because his brain is different now too. I don’t think I need to get into statistics on rates of increased anxiety and depression among children who have some sort of neurodivergent diagnosis or chronic medical condition.
Bowen has fought for his life. While other babies brains were developing sucking and swallowing skills, Bowen’s brain was trying to figure out how to stay alive. I can’t help but feel like I owe him a little extra grace when it comes to basic skills because of this. So if you see me bending over backwards to appease my little man or jump in a little sooner; know that is comes from a place of fierce love. The moniker “mama bear” doesn’t just sound good, it is a true identity. Everyone’s journey with their child looks different, and we can’t compare our journeys to each other because they’ll never look the same. At the end of the day, I sleep knowing both my children are loved and protected. I can take the judgement of my own parenting and at the end of the day, as long as you’re my friend, you love me and my family, I’ll take it.
Somewhere In Between 