Odd Mom Out

Odd Mom Out

It's all feels so normal until you go to a one year old's birthday party, or you run into your cousin and their 7 week old at the mall, or you go to a cook out at your friends' house and meet their 5 month old for the first time. The babies are all taking their bottles or breast feeding like champs, they're all bigger than your 13 month old, and some are even crawling, standing, and taking steps. The 5 month old lies on her belly while her mom walks away for a moment. The baby contently waits for her mother's return, reaching out for the toy in front of her. 

*Cue sudden onset of depression*. These seemingly typical behaviors of babies have never occurred with my son, not in the least bit. Every single thing he does has been a struggle. He was born in respiratory failure, so right from the beginning the mere act of inhaling and exhaling was done for him by a ventilator. He was born with an anorectal malformation and needed corrective surgery in order to pass meconium. We had to dilate his anus twice a day for a whole year, gradually increasing the size of the dilator stick to make his opening age appropriate. He will struggle with constipation his whole life. I can't tell you how many times I've been approached by strangers who believe they have the answer to his straining issues. It got to the point where I was prepared to answer, "well his butthole isn't big enough quite yet, but we're working on it." It just gets way too exhausting trying to be polite about "sensitive" topics.  

He is tube fed because, for an unknown reason, he won't eat enough nutrition by mouth to sustain life and development. My son must have been starving for the first 8 months of his life, before he had his g-tube. He would maybe take an ounce by mouth - once he was able to drink by mouth. The first two weeks of life, he got all of his nutrition by IV in a central line that left a nasty little scar on his inner thigh. I tried breast feeding, I tried bottle feeding. Our NICU discharge was dependent on his ability to eat orally. Somehow, we were discharged, but the eating was never consistent at home. My friends and family couldn't help me, my son would scream and push the bottle or breast away from his face, for seemingly no good reason. I had no answers, and I was sure someone would call CPS on me thinking that I didn't feed my child. (This was a real fear of mine.) I was so nervous that the doctors would think I was lying. We tried putting in an NG tube, -- non-surgical, goes down the nose-- but he was not having it. Surgery for a G-tube was our last resort, and ultimately the best decision we could have made. At the time, I don't think it ever really settled in that my son had a feeding disorder. To this day, at 13 months, he might take a little over an ounce by mouth, but that is it. The rest goes straight into the tube. 

One day I was in a café with Oskie, waiting for my aunt to meet me for dinner. I was eagerly looking forward to a very normal dinner in a very normal cafe with my very normal aunt. I wasn't at home or at the doctor's office, so this was quite a treat. The minute I put a bottle up to my son's mouth, I know for sure wether or not he will take any of his meal by mouth. It was clear, this would be a 100% tube fed dinner. A complete stranger walks up to me, places her hand on my son's stroller, and has the audacity to ask me in a condescendingly high pitched voice, "is it because he needs to sit up a little bit?" 

"Well, considering it's all going to go down his feeding tube, I think we are
OK," I reply. 

"Ooohh, he has a feeding tube, okay good." 

Turns out this young woman was a resident at an ER in a local hospital, which is all fine and dandy, except I certainly didn't recall making an appointment with her. I wanted so badly to tell this woman to leave me alone, that I was here to have a quiet dinner with family, not to give a complete medical history to a stranger, but I couldn't help but think she was judging me and if I didn't explain myself, she might call social services on me. Maybe that's a bit of a stretch, but these days, you just never know. People like to think they know better, especially when it comes to other peoples' kids. 

My son gets therapies three times a week because he can not lie on his stomach, much less sit, crawl, stand, or walk on his own. If I put my son on his belly or  in a sitting position on the floor, walking away is NOT an option. He is still working on just balancing there, and usually screams his head off as soon as you attempt tummy time. The future is uncertain as to the extent of his independent mobility, and independence in general.

Some moms can't believe I'm still baby-wearing, but I don't want to have to go into detail explaining that he can't crawl and by baby-wearing in certain positions, such as a hip carry, my child gets to feel the natural imbalances that occur while walking and has to work to hold himself up, which is good for strengthening his very weak torso. He leans when you sit him upright against a couch. One time, I was at a birthday party, and a woman sees my son leaning, and looks directly at me and says (in the condescending, high pitch voice that insinuates I don't know what I'm doing at all) "he is leaning, why don't we put some pillows around him so he can sit up straight?"

Number one, I know he is leaning, and number two, I don't need you to fix it. He also leans in his stroller, and I don't fix it because he could end up relying on the positioning and not be forced to use his own muscles to pull himself up. Every single thing we do has a purpose behind it, and it takes a lot of patience to explain this to people, especially when you are just trying to escape this very intense medical world and enjoy your time with friends you haven't seen in a long time.

He has a hole in his heart, and he has very high blood pressure which we are constantly trying to keep under control by medication. He has eczema and he gets overheated really quickly. It's not uncommon for me to get comments and ugly looks from strangers who think I'm probably the worst mom for not having socks on my baby when really I've just taken them off because he was getting so warm and red. #momknowsbest

I feel guilty that my son spends most of his time in a chair during and between feeds, because if he's not at the right angle, for the right amount of time, he'll have terrible reflux or vomit. He relies on other people to move him from point A to point B, his physical mobility so restricted he can't explore his surroundings alone. 

 

 

Photos by Julie Verlinden

 

As normal as all of the medical complexity has become for us, especially in the comfort and familiarity amongst the walls of our home and hospital, it becomes glaringly obvious how much we've struggled as I hear the concerns of moms of typically developing kids. I wanted nothing more than to exclusively breastfeed, it just wasn't in the cards for us. I yearn to have my biggest concern be supplementing breastmilk with formula. I pumped for three months, and just couldn't keep up, especially trying to balance that schedule with NICU visits and post-discharge follow ups and testing. Now, I'm just at the point where if my son will put anything in his mouth, he can have it. I don't care if it is cake and ice cream, the more calories and fat, the better. Our new toddler formula could cost us around $500 a month, and we are fighting to get our (very expensive and private) insurance company to pay for it.

One could argue that I don't need to explain myself, but I've noticed that if I don't, the comments just keep coming, and if I just nod and smile, I feel defeated, as if I've given the impression that I don't know anything and actually need all of this unsolicited advice. It has just been better to nip it in the bud and explain what's going on in the first place. 

There will always be those who have it easier, and those who have it harder. The moms I envy probably have silent struggles that I know nothing about. And while I think it's worthwhile to keep a positive attitude and ignore the negative comments from others, some days I feel absolutely entitled to just mope around. After a day or two of general mopi-ness, I'm back to feeling like I can conquer the world. I'm learning to accept that as much as I don't want my whole life to revolve around my son's diagnosis, it really does touch each and every aspect of it. I may perpetually be the "odd mom out". I hope that at the very least, by sharing my story, I will bring awareness to others who then may go on to be more sensitive to other parents' journeys, and in some cases, maybe even help someone else who could be going through something similar. After all, the grass is always greener where you water it, and life is as complicated as you make it! 

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