It’s hard opening up and telling the world a story that didn’t start out rosy and continues to be challenging. I came to find that I didn’t want to share with anyone who didn’t understand because I didn’t feel the need to educate. Educating someone on your own story that isn’t the Hallmark version is hard and taxing work. My therapist encouraged me to seek a support group, to write, meditate, even inquire with my doctor about anti-anxiety and depression drugs.
I got right on it because I didn’t want to feel this way, but most importantly, I knew if I didn’t fix it soon, it would grow, and it would affect my son. I felt crazy but I didn’t want to be seen as actually crazy, so I delayed getting medication. I’ve been writing about my experiences for a while now. Most of it for myself because I haven’t been brave or strong enough to try and share it. Mostly, I feel naked when I write about it, but it does seem to help. I worry about sharing my story with the world because I am fragile, and I don’t know what will happen.
Liam’s 2 now and coming up on 2 ½. He’s a strong and resilient boy. He’s brilliant and mischievous but mostly he has a heart of gold and is the most empathetic toddler I’ve ever met. He’ll give his hugs out for anyone he sees in pain or in friendship. He’s the light of the room and his smile fills you up. Once he’s comfortable with you (which usually only takes about 5 minutes) he’s crawling into your lap, just as comfortable as can be.
We still have our challenges though. Currently, he’s in feeding group on Mondays, Tuesday’s he has speech, Wednesday he has Occupational Therapy, Thursday is usually free from his appointments and Friday is also speech. He had an MRI last week and we’re still waiting to hear the results of that. I admit; I assume that’s why I’ve completely spiraled this past week into the darkness (it feels comfortable in here). He’s finally eating solid foods regularly but I’m struggling to put weight onto him. According to the internet (which is evil for all things medical, especially regarding your child) he may struggle to grow for the rest of his life. Yay.
He has medication to help with his reflux and keep him from vomiting his food. He’s on an allergy medication that helps increase his appetite but with a side benefit of making him sleepy (I get to sleep too when this happens). If we take him off it even for a day or so, the change is dramatic, and he eats maybe 300-400 calories a day ensuring he stays in 12 month clothes. Did I mention that he’s almost 2 ½?
In the last 24 hours I’ve come to the conclusion that this is just my life. I’m not a very good happy, Pinterest or energetic mom. No. I’m a meds, therapy support, calorie obsessed, bowel movement tracking, doctor pestering mom. I leave all the fun stuff to my husband, mother in law and parents. I’m usually the mean one. I’m the disciplinarian. I’m the one stressing about how many calories he’s eaten; is it enough to gain a pound for the nutritionist? I’m the one moving things around on my calendar and relying heavily on my alarms so we don’t miss a single appointment. I’m constantly feeling guilty that I missed his bath and grandma has to do it or dad. I stress out when he misses a dose of something or sleeps too long and now his calorie intake is off. I stress that his balance is off, so I need to make an appointment with ortho, buy him a helmet so if he falls on a hard surface, he won’t get a brain bleed and further hinder any development. He’s 2 and not talking so I threw him in speech therapy and signed him up with two different companies so he’s guaranteed to get it twice a week and as aggressively as possible because somewhere in my research or through his medical/therapist team someone told me that 0-3 are the impressionable years and that’s how long I have to develop his personality and growth and we’re still ridiculously behind.
I scream all the time. I’m a dark hole all the time. Chocolate helps. Stand up comedy helps. I shop online because I’m sorry: retail therapy WORKS! It makes me happy but adds stress to my poor husband. I recently gave in and decided that I am now just a plus size person and I should embrace it because getting on the treadmill makes me want to eat ice cream and eating non fat yogurt makes me want chocolate and drinking a smoothie should just be wine in glass.
My world is so different, and my perspective is so different it’s so hard not to feel alone. I know moms judge each other; I know I do but I also know I don’t really have time to judge. Don’t get me wrong, usually I’m so resentful of what I see that I end up triggered but for the most part I’m happy for the moms and what their struggles are. Most of the time I see these other moms and they are trying to win the battle to get their kid to eat broccoli. To me, I see a kid able to eat. I see a mom who can choose to give her kid a vegetable and not worry that their kid is going to waste away and not grow. I see a mom being able to breastfeed with a smile on her face and I’m grateful that she gets to feel that. I had to bring my milk supply back three times in the NICU and breastfeeding for me was a nightmare and I felt forced to do it. It wasn’t magical. There was no bonding for me. I wanted it over but I knew it was what he needed. I see a mom struggling with two kids and I think if I try to have another, I’m almost guaranteed to have another preemie. I see moms stressed out because their kid is throwing a tantrum and while I understand that stress, I’m also thinking that kid has the vocabulary to express his frustration, anger and desire. I see moms trying to keep their house clean and I think I hate cleaning probably just like you but I’m also, at least your kid isn’t terrified of the vacuum. If you’re cooking a soup, you won’t need someone to comfort your kid because he thinks the immersion blender is trying to kill you and it scares him. All of our struggles are real. They’re just different.
I watch my son breathe at night. Taking him to the ER is normal. Worrying about his development and his eating is normal. I want to throw a party if he eats a whole cookie from Starbucks that’s 500 + calories. I’m not looking forward to potty training because I have no idea how to micro parent that. I’ve been micro parenting from the start. Did you know there are 32 steps to feeding? Most parents don’t have to know that, they just start offering things. Did you know about prompt? It’s a speech thing. There are so many things I’ve had to squeeze into my brain that I’ve forgotten most of it.
Yes. Parenting is hard. I think what I’m doing is micro-parenting. Parents of children with disabilities micro-parent. Your day has to revolve around certain habits, routines, therapies, medications so your child can thrive to the best of their ability. It’s worth it sure. But damn sometimes it doesn’t feel like it. Sometimes all you want to do is sleep, cry, bitch and complain, scream. Have anyone see you. Notice you. You lose yourself as a parent with a kid who needs extra X. No one asked for this, it just happened.
I find that sometimes it’s almost worse because Liam doesn’t present like a premature child physically. You look at him and he presents as proportionate. If you don’t know how old he is, he looks like anywhere from a 12-18month old doing his thing. You can’t tell until you spend about 20 minutes with him that things are slightly off. You can’t tell until you spend a day with him that it’s a little challenging. A week and you might get a glimpse into my daily struggle. Being his parent is something that I’m still trying to figure out. I love this child fiercely. My momma bear comes out hard and strong, but I also feel like I’m not the right person for this job. Doctors, nurses and therapists saved my son when I couldn’t. I still struggle daily with that knowledge. I’m starting to come around to the idea that anyone else taking care of him instead of me is bad. I’m still scared I’m going to mess it up. I still have no clue what I’m doing. I don’t have my shit together and I KNOW I’m not presenting a strong front to the world and I kind of don’t care because I have too much else to think about.
Part of me just wants a diagnosis so we can move on with our lives. Another part thinks maybe I can hang out in limbo for a while and eventually we’ll be ok and maybe have a normal life. Normal by the way to me looks like 0 therapy appointments, the annual pediatric checkup, play dates when appropriate, grocery shopping, and feeling stressed about cleaning the house, maybe even trying to find a way back to work (whatever the hell that looks like). Someday, I hope to get rid of our medical team and extra therapy appointments. Until then, I’m writing this in the hopes that if you know someone who is struggling, don’t shy away. The parenting struggle is real, especially with those of us dealing with special needs (whether its permanent or not). We need your help even if we don’t ask for it.