The MOST Difficult Thing + What it's Taught Me....
Can we just all agree up front that parenthood is hard? I mean the hardest thing ever. Are you doing it correctly? Is there a “correctly”? Are you making the right decision for your child? Will there ever be alone time in the bathroom ever again? How many more times will you say things like “get your face out of the dog’s rear-end”! No. I’m not kidding. I really have to say that…along with many other phrases I never thought would exit my mouth. I yell, I lose my mind, I count, I cry, I apologize, I console, I hug, I snuggle, I say I love you a millions times a day, I do things just right, I make mistakes…I do my very best. Most of us do, but I still think we can admit that it’s tough. As I share my journey of being an “extra needs” mom, keep in mind that this (my situation) is all I know. I have one little girl, and she is who gave me this wealth of parenthood knowledge. Clearly I’m now a professional. Kidding of course. If you read this & think “every kid does that” or “that doesn’t just apply to special needs”…good. You’re a professional too, and we can relate even better than I thought! The suggestions I'm going to make are things that I still work on daily. They are hard lessons I’ve learned, and advice from those who are much wiser than I. I figure if it’s made things a little easier for me, why not share.
Besides having an incredible support system & giving our girl lots of love, the thing that has made the biggest difference in her life has been recognizing her needs. This sounds so obvious, but it isn’t always easy to face the fact that your child may have a problem. Sometimes it’s really hard for parents to admit that. You have all of these expectations, and dreams of what life with your baby will be like. Before my little girl started walking (at 3 1/2 years old) I would come in my back door every single day, and without fail I would have this vision of her walking down our long hallway. There were frustrating days, and all I wanted was to shake that thought out of my head because what if it never happened? I couldn’t. Every single time I looked down that hallway it was there. It feels like a slap in the face to wake up to this reality that doesn’t align with your dreams…in any situation. Especially when it involves your child. As soon as we began to recognize our girls delays we began seeking help. Her prognosis from birth wasn’t great, and with encouragement from our support system, we knew that the sooner we could get help the better her chances would be. Face your fears, recognize your child’s needs, and go find a way to meet those needs.
Face your fears. This phrase almost makes me roll my eyes as I’m saying it to you. Isn’t it so easy to say? Most of the fears in my life as a parent i’ve been forced to face. It wasn’t by choice. I told God super early in my motherhood journey that I could handle anything, but seizures. “Please God if you could do me this huge favor I’d like to just take seizures off the list of complications…k thanks”. Wanna take a guess at our biggest struggle? Yep. Seizures. The ONE thing I was scared to death of is something we do 2 or 3 times a day. A DAY people...and that's mild compared to what some families are dealing with! You know what’s amazing? After you face your fears, forced or willingly, eventually you become immune to them. I read that somewhere, and realized that’s exactly what happened in my own circumstance. Fear is an awful feeling. Face it. Do the hard things because overcoming that awful feeling is a beautiful thing. You’ll have to do it again…and again, and again, but you’ll get better at it, and you’ll carry on every single time.
Let them try things. Y’all, we protect our girl from everything. I feel like people cringe at us sometimes because we are so particular. Some protective measures are necessary & outsiders don’t understand that, but I would agree that maybe there’s some overkill sometimes. We’re trying to do better. School for example…It’s scary for any parent, but our girl is non-verbal for the most part. What if someone is mean to her, and she can’t tell us? What if she’s sick or hurt, and she can’t tell anyone? So so many questions. Here’s my advice. Get up to that school, and meet anyone & everyone that will contribute to your child’s education. Ask questions and let them know that you are involved. Talk to your child’s teacher frequently. They want you to be involved just as much as you want to be. You wanna know one of the best resources I have to keep up with what’s going on in the classroom? My girl’s classmates! Kids tell it ALL. They go home & talk to their parents. When I see those parents I get all kinds of stories and I love it! Get to know the people who surround your child. We are so blessed to have the best team around our girl. You need that for your child. It’s up to you to get out there and find it. Another activity we thought would be good for our girl was dance. I was pretty sure I wouldn’t put her through a recital. I didn’t exactly know how that would go. Even so we enrolled her because the week to week classes would be good for her motor skills, and social development. Like any other kid she had good classes and rough classes. Recital time came around and my mom encouraged me to let her participate. There were probably many parents that weren’t impressed with her little show, but those of us who had invested so much into this little life had a cheering section of our very own. She did her own little dance all the way across the front of that stage, and was so proud. She shined that night, so much brighter than most people in the room even realized.
We decided to give dance a break for now, but had we not tried it I would have never known the outcome. This little brave soul was capable of standing in front of an auditorium full of people & lights, and putting on the best show I’ve ever seen. There are things we’ve attempted, and they have gone terribly. There are things we talk about doing every year, but still haven’t attempted. No matter what I will always have my parent’s voices in the forefront of my mind telling me “Beth, you have to keep trying. I know it’s hard, but you have to keep trying for her”. Let them try. You keep trying. It’s what makes us the strong ones.
Quit taking things personally. I have been ordered to work on this one specifically. I am THE QUEEN of finding things to do that will remove us from situations that make me uncomfortable. Now let me just give a disclaimer because I need to make sure this is clear. If you have ever invited us to anything thank you! We love you! We appreciate you! Please keep inviting us. Just know that I am working on myself. Now that you know that I’ll continue on. Gatherings with other kids give me mom anxiety. I see things that my girl can’t do. I answer questions from kids like “what’s wrong with her?” & “why don’t she talk?”. I have actually had a child tell me that he and his friends “don’t like (her) because she screams”. I see children completely avoid her because they just don’t know how to interact with her. Y’all, it’s heart wrenching. We have a safe place with family because her cousins grew up with her. To them she is who she is, and I cling to that. I have left places before just hurt, angry, and overwhelmed. Don’t misunderstand me. I’m not mad at anyone’s children for heaven’s sake! I know kids say whatever is on their minds, and they’re right. Our girl won’t talk to them, she does scream, and it is confusing for them to try to interact with her. If she was verbal there’s no telling what she’d be saying either! It’s just a very hard thing for a mom. Did you read that? “For a mom”. My girl seems completely unaffected by all of those things. She’s playing, and laughing, and having the the time of her life. It’s me. I take the situation so personally. I’m trying to reroute things. If she’s happy, who cares about anything else? If you’re on the other side of this situation please don’t get annoyed with moms like me. We aren’t looking for attention, we aren’t playing any cards, it is genuinely a hard thing. Most of all don’t give up on us. We need you.
The very last thing I’m gonna leave you with is ground-breaking I’m sure. OK not really, but it does make eating out a much more pleasant experience…are you ready? Order your kid’s food when the waiter comes to get your drink order. Every single time we sit down at our table, my girl immediately starts pointing to the table & signing that she wants a “bite”. I know kids are impatient in general, but our sweet little princess turns into the dang Hulk when she gets frustrated. Yes it’s dramatic, yes we are working on patience, and yes she’s a bit spoiled. I know all of that so don’t start "mom shaming" me quite yet. She also really struggles with processing. If the table next to us gets their food and she doesn’t, we could very easily end up pulling her up from a fit on the floor. She just comes undone when she doesn’t understand. It’s hard on everyone. I’m not gonna be able to correct that in one meal, and sometimes I just want to eat in peace. I’ve now made it a habit to get her food ordered immediately. I have never had a server act like it’s a problem. They always seem to understand, and the food always comes out super quick. Once she gets her food she’s happy. By the time I get my food I’m finished helping her, and I’m able to enjoy my meal. It’s just a win for both of us. I know there are “lessons” here, but I choose to pick my battles…when food is involved I surrender. So if you must judge, keep it on the inside.
Parenthood is a really crazy ride, but you can’t get off. You have to hang in there because if you bail you’re gonna miss the really good parts. You know, the upside down take your breath away kind of moments.
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