I Can't Give You Everything

I Can't Give You Everything

photo by Scott Simon

 

It became clear by the time I was halfway through my pregnancy, that this journey would be anything but typical. It never will be. After sharing my not so typical story, I get a lot of comments like, "you're such a good mom" or " I don't know how you do it!", and as flattering as it all is, I really don't know how I do it either, I just do. I didn't get an instruction book on parenting. I didn't get a step by step guide specifically tailored on how to raise a medically complex child. I don't have any medical degrees, and I didn't get a lengthy tutorial on the ins and outs of feeding tubes. (I've actually gotten more information on tube feeding from other tubie moms on Facebook than I did after Oskie's surgery.) What I did get, was a lot of life lessons, really fast. Like -- the cliff notes version of life lessons. 

The biggest life lesson I had to learn from the teeniest tiniest millisecond after giving birth, was that I could not give my child everything he needed. Not at that moment, not in the many moments following his birth, not now, and not ever. My birth plan was skin to skin if the baby was breathing, because respiratory distress was a real concern. Skin to skin, bonding, breastfeeding - those were my plan B. Plan A was to get the baby out and keep him alive. I immediately had to place my trust in a room full of practical strangers. I had to accept that they were more capable than I was to give my baby what he needed. I felt so sick during my C Section, that I looked at my husband, thinking I wouldn't make it, and internally accepted that he would do a good job raising our son without me. When I met my son, wheeled into my recovery room by his transport team, I had to place trust and faith in the drivers, nurses, and staff to make their best decisions in caring for my fragile son, surviving on life support.

Soon after, I would be handing him off to surgeons, specialists, nurses, and therapists -- all who presented me with more information than I could have ever dreamed of in the realm of development. It became very clear early on, that I had no clue what I was doing. These people had multiple degrees, continuing education, and practical knowledge in how to raise children like my son, but I was a blank slate. How could I be a good mom to him when I don't have a clue what I'm doing? I would think to myself. But I'm a quick learner, and I was up for the challenge, so here we are almost a year and a half later, and I'm still hanging in there. 

It has not been easy. It has been a grueling task that has taken a toll on me, my marriage, and my life in general. I spent a lot of time crying -- reliving the nightmare of life as a NICU mom, holding my son as the morphine wore off, wondering why he wouldn't eat, staring at his beautiful tummy before surgery to put a plastic feeding tube in him, watching him scream as he gets poked at our countless doctor visits, watching (and letting) him cry during therapy, holding him down for X-rays and CT scans, living with extreme anxiety, and wishing that no child or parent ever had to go through things like this. 

Then, I hit a point of acceptance. A point of realization that I am one woman. I can only do so much. I can not give my son everything he needs. I. Can NOT. Give my son. Everything. He. Needs. 

I can learn from his therapists, and practice at home, but I am not his therapist. I can administer medicines, use a feeding pump, change a gastric button, and change dressings, but I am not his nurse. I can read and research anything and everything on chromosomal abnormalities, brain abnormalities, kidney abnormalities, gastro- intestinal abnormalities, congenital heart defects, open heart surgery, anorectal malformations, high blood pressure, low muscle tone, high muscle tone, but I am not his doctor, nor his surgeon. I can read and research everything there is on breastmilk, formula, and real food blends, comparing brands and nutrition facts and so on and so forth, but I am not his nutritionist. 

I am, strangely, some combination of all of these things, yet none of these things at the same time. I am his mother. I will learn, advocate, connect, reach out, compare, contrast, weigh risks and benefits for the rest of my life for my son, but I have to put my trust into others to lead me to the right decisions. I have to accept that there is a big gap between what I can learn on my own, and what these many medical professionals dedicate their entire lives to knowing. Does that mean I have to listen to anyone and everyone in a white coat, without ever questioning them? No. I have had legitimate disagreements and personality conflicts with a handful of medical professionals. Bottom line is, I know my son better than anyone. I spend the most time with him day in and day out. But, I accept that they know more about his conditions, and combined with my mom-power, we can make a better life for Oskie, a life full of joy and love, a life without limitations. 

Accepting that I simply can not be everything for my son, is actually a relief. I can only be the best mom I can be, day in and day out for him. The one who pushes him in his therapies, but also comforts him when it's just too much. The one who makes "tubie" time fun, and not clinical. The one who holds him when he's recovering from the next procedure or surgery. The one who stays calm when we have to drive to the Emergency Room. The one who can spit out my son's 300 page medical history in 30 seconds. The one who listens to all of the advice the therapists give me, even when it's annoying cause I just want to do things with my kid but I can't because of his developmental delays and susceptibility to sensory issues so I have to do things in ways I never would have thought to do them before and then make sure everyone else who watches him does the same thing to stay consistent and it's exhausting but it..is...worth...it. *gasps for air* I can do that. 

Yeah, that I can do. 

 

First Time Medical Mom

First Time Medical Mom

Play Dates. It's Complicated.

Play Dates. It's Complicated.