I wish that toddlers understood what the waving of a white flag meant. If they did they would have noticed me surrendering today to the insanity that three children 3 and under brings. I have a confession- I am sometimes a complete wreck of a mother.
I am a fraud.
I am impatient and frustrated.
I raise my voice.
I feel awful.
When I go to do my sessions at Akron Children's Hospital with the 3rd year medical students I make it a point to share how amazing my life is with them. I want these future docs to know that my life is full and happy and that C&C have FULL and HAPPY lives as well. When I talk to other parents or parents just getting the diagnosis that is the central theme- life is good.
And it is. Sweet. Happy. Full. Meaningful.
But there are times- though not many- that I find myself utterly and completely overwhelmed and just... sad.
Today was one of those days. I know how smart Casey and Connor are and I know that they understand the vast majority of what we say to them. I also know that they are 3 and as such just choose not to listen sometimes. The morning went something like this:
Connor hitting Reagan.
Me: Don't hit your sister, Connor. It's not nice and it makes her cry.
Connor sits on Reagan.
Me: Connor! Don't sit on your sister!
Casey whines for something but I don't know what because he won't use his signs this morning.
Me: Casey Bear, what can I do for you?
Casey: Ahh. Ehh. Cry.
Me: Signing: Waffle? Milk? Toast? Cereal?
Casey: Cries to each suggestion and thrusts arm toward kitchen.
Me: Casey I... Connor- don't pinch the baby! Not nice!
Connor: Laughing, sits on Reagan again.
Reagan: screaming like someone has just cut off a limb.
Me: Connor Thomas! Get off your sister. (Pick him up and put him on the recliner) (Pick up Reagan and soothe her.)
Casey: cries louder and gestures toward kitchen.
Me: Buddy, what do you want? More signing, Milk? Waffle? Yogurt (which I have no idea how to sign so I just ask him.).
Casey: yells something indecipherable.
Me: I don't know what you want! Can you show me? I let him in the kitchen. He sits on the floor and cries. Then he signs car.
Me: You want Cars? Do you want to play with your cars?
Me: ??? DO you want to watch cars?
Casey: Signs waffle.
Me: You want to eat a waffle?
Casey: Signs yes.
Seriously?? Didn't I ask that 10 minutes ago? We get the waffle. Put it in the toaster. Then hear crying.
Rush out of the kitchen- Connor! Get off your sister! She is not a chair!
Move Connor, soothe Reagan. Casey's waffle pops up. Grab that, blow on it to cool it down, hand it to him.
Casey: looks at waffle, throws himself to the floor and sobs.
Me: (deep breath) Buddy?? How about some cereal.
Casey: pops head up and says "oohh"
Get out cheerios. Pour in a bowl. Hand to Casey. He looks at the bowl. Turns it over. Dumps cereal. Stands up, steps on it. Sits in the middle of it and eats it. Until Regan crawls over and eats an "O" and then Casey doesn't want it anymore.
Time to get ready for school. Shoes on. Socks on. Grab sweatshirts. Connor taking shoes off. Reagan stands by the bench. Casey pushes her over and she hits the chair. She screams and cries. I soothe Reagan while scolding Casey and putting Connor's socks and shoes back on. Dog knocks toothbrush off counter and licks toothpaste off. I vaguely wonder if it's poisonous. Find that at that moment I just don't care. (Great! I'm an admitted awful dog parent now, too!) Wash off toothbrush, brush the boys "dinosaur teeth" one toothbrush in each hand. Clean their faces and hands. Turn to take the wipes and toothbrushes into the kitchen when Casey pushes Reagan over and then Connor shoves Casey. I make Casey sign I'm sorry and make Connor help Casey up and sign I'm sorry. He wasn't sorry. He pushes his brother again. I take a deep breath. Put Reagan in high chair. Get her shoes. Connor walks over and starts spitting on her. Nice. Casey pinches her arm. She cries. I scold boys and tell them they must be kind to their sister. They both walk away. Get Reagan ready to leave. I run upstairs and change out of pajamas. Decide that I should brush my hair. Ponytail. Headband. Back down stairs in under 2 minutes. Grab my jacket. Both boys now spitting on baby. Seriously??? Where did they learn THAT??? Grab keys. Pick up Reagan, usher boys through kitchen to the door. Get them all to the van. Connor in a seat. Casey opens other side door. He's going to leave. Run around to the other side, put him in a car seat. Reagan crawling freely, finds crackers. Dumps them over. Squishes into floor. Grab her, put her in seat. Back out of garage. Drive to school.
Once at school, get Reagan out and into her stroller. Realize my back hurts so bad I can barely stand up straight. Get Connor out of seat. Get Casey out of seat. Have one push stroller, the other hold my hand. Casey refuses to walk. I pick him up and help Connor push Reagan. Connor realizes Casey is being carried and must also be carried. My back will not allow for that today. I put Casey down and ask him to push. He refuses. Feel like a terrible mother who can't get her kids in the damn building. Feel bad for thinking it's a damn building.
Pick Casey back up and coax Connor along one step at a time. Connor sits down on the sidewalk. Refuses to move. I look at Casey and say with as much gusto and excitement as possible- do you want to walk or push your sister in the stroller. He chooses to push. Score! I thank him for being such a good boy. Connor no longer wants to be carried. He wants to walk in the grass. Fine. Good. Do it. Points out trees. I tell him that they are trees. Ask him if he hears the birds? He apparently hates birds. Starts to cry and throws his arms up to be carried. A 500 foot walk to the door has now taken 6 minutes. Casey pushes stroller off the sidewalk. I can't get it back up by myself. Amazing door monitor comes to help me. I nearly start to cry because I know I look like a complete friggin wreck.
Sniff. What's. Sniff. That? Casey. Did you just poop, buddy? Awesome. Carrying both boys now, get stroller stuck. Lots of offers to help me. I look like a total douche who is going to start sobbing. Smile. Thank everyone and say, we're just having one of those mornings. They either know exactly what I'm talking about or think I suck at life. I don't care which.
5 minutes later we are down the hall. And Casey finds his locker and picks his name out of the two choices on the door. He is correct on the first try. I'm so proud of him. I feel like such an ass for being frustrated. Connor picks his name correctly and looks up for a "bye bye kiss". I happily oblige. Walk him in, ask for a diaper and wipes for Casey.
Nearly start sobbing. Their teachers are so kind and wonderful. I love these ladies. I see Michelle. Sophia's mommy. I really like her. She is such a great person. She has really beautiful and kind eyes and she tells me she couldn't wait to see me today because she met my "biggest fan", a neighbor of hers who has been reading this blog since the boys were babies. I am so touched that I can no longer hold in the tears. I just start crying. She asks if I want to go get coffee. I jokingly say, margarita? And then, I do what I always do and say no. She has no idea how much her offer means to me. How much I just love her kindness.
Being a stay at home mom is lonely. Being the mom of kids with special needs is lonely. Being a mom in general is hard work. Harder than I ever imagined. These days when the lack of communication between my sweet boys and me makes even the simplest things- like, what do you want for breakfast?- seem like impossible interactions, I feel really alone. And tired. And honestly- like a horrible jerk- when I get frustrated at the children I live and breathe for.
These are the days I call my mom and sob and ask her if they will always be crazy. I need her to reassure me that I am normal and not awful for occasionally losing it and raising my voice or feeling frustrated. And I just cry and cry and cry.
So, today was rough. Really. Freaking. Hard. And I think, I can't do this. I can't. I'm not a good mother. I am not cut out for this. But then I realize- there is nothing I want more than to be their mother. There is no job in this world that is harder or more likely to drive me to absolute brink of madness but then can pull me back from the edge and fill my heart with such unbelievable joy because my 3 year old can finally recognize his own name on a locker and I think- holy crap! That is amazing. Those moments fill me up with the power to keep moving forward and plugging along. They recharge my batteries enough to face the rest of the day with a smile. Sure, there will be more moments like today. And I know there will be days that are just as hard and harder but then I am comforted in knowing that I am not alone. There are the Michelle's who want to get coffee. There are the Brooke and Rachel's who offer to change the poopy diaper. There are Mommy's who let you cry on the phone and offer up a prayer for your strength. There are my children who give me bye bye kisses and smile at me and in those smiles I see the very perfection that I live to share with as many as possible. And despite the bad morning I know that life is good and it could be so much worse. I am blessed with support and and love and I have my wonderful husband to share the journey with and to share the load. I have people all over the world who read this blog and maybe more than a few who offer up similar prayers for strength.
So, thank you for the support. Thank you for the love. Thank you for your kind emails and comments that let me know I am not alone. Thanks for saying, "We all have bad days." And to you I say, "You make this ride even more worthwhile." And to all the moms with unique situations, maybe raising a non verbal child or a medically fragile child or ANY child with ANY ability, I want you to know, bad days happen. As long as you can love your child and appreciate the sweet, little moments, things will be fine. In 10 years I won't remember today was a crappy day- but I will remember that a tiny human looked at me like I was the most important person in his world and he just HAD to give me a sweet little kiss.
Sage advice for the day. Let go of the frustrations. But hold tight to the kisses. The kisses are what matter most.
Thank you for your kind words. You have no idea how much they struck me and how much the mom in me wants to give you a big hug and tell you that you are perfect just the way you are. You have challenges that not many people can relate to and that makes things harder which is totally unfair because being 15 is hard enough already! But I promise you one thing, Mary, the kids that deal with challenges in high school and make it through make the coolest adults! In fact, my very best friend in my life has Tourette syndrome. I met her my freshman year of college and almost 18 years later we are still best friends. Her diagnosis doesn't matter to me. Half the time I forget all about it because her personality and her willingness to love me for my faults trumps her occasional tics. She is beautiful and perfect just as she is- I wouldn't change my Miranda for anything. And do you know what, Mary? She is happily married with 2 beautiful little girls. Your future can be anything you want it to be so don't let anyone tell you any differently!
When I look at my kids I feel so blessed because they are each exactly the person they were meant to be and as their mother I love them unconditionally. Does that mean I never get frustrated with them? Nope! I am a very flawed person and sometimes impatience wins out over patience, anger wins over calm and in those moments I know I am wrong but again, unconditional love does not mean I am perfect. I am certain that your dad loves you. Adjusting to a new diagnosis is not an easy thing. Parents want everything in life to be good for their children and it is really hard when we can't control things. It is painful to watch your child struggle. There are no words that I can find to express that well enough. I physically hurt when my kids aren't immediately accepted or when they work so hard to do something and still can't get it yet. Another example of that is when Casey and Connor want to play with a new child at the park and that child looks at them like they have 2 heads and runs in the other direction, it breaks my heart. It doesn't happen often but it does happen and it hurts so much. If I were a different person that pain may come out in a very different way. Instead I wait until they are in bed to cry a little, to let myself feel that pain and then I work even harder to raise awareness so that the next kid isn't quite such a turd.
Sisters are just kind of jerky sometimes. It just is what it is but at the end of the day your diagnosis may be hard on her, too. (Does it seem crazy that everyone else struggles with it as much as you do?) I am sure that your "wacky personality" may be overwhelming to her. I always try to remind Reagan how important she is in her brothers' lives. I know it can't be easy for her to be carted to therapy waiting rooms, to have to wait for things because C&C need me more at that moment, and all the other things that come from being a sibling to kiddos with special needs. She is so important to her brothers and they adore her. She gets mad at them sometimes but she ALWAYS loves "her big brothers!"
Mary, I don't know you but I can promise you something- you are perfect just as you are. You are a special person who will grow up to be an awesome adult. You'll find a best friend who loves the way you are and a man that makes you want to be the best person you can be, that loves you regardless of your Tourette syndrome. You will be stronger than the people that never had to fight for anything. You will make a difference because you have experienced challenges that the people who had it easy growing up never had to deal with. It may not sound like much but these things give you character. Character has gotten me through so much! Love yourself, Mary. Love you for who you are. That is the biggest challenge of all because rarely are other people as cruel to us as we are to ourselves. Start by listing everything you love about yourself. Read that list everyday. Tell yourself only the kindest things. YOU deserve YOUR kindness. Build yourself up so strong that no one can tear you down. Look in your mirror and accept that you deserve kindness, compassion, friendship and love. Refuse to settle for anything less. Always be your biggest cheerleader. Laugh at yourself kindly. Just be amazing. You are amazing. Do you realize your words moved me in a way that few have done lately? I have been thinking of you since last night and wishing I could tell you what an incredibly special young lady you are and how much your small act of reaching out opened my heart.
You're exactly who you are meant to be, Miss Mary. Own that. Rock that. Change the world. Love yourself. And remember that this momma thinks you are valuable, worthy and pretty damn awesome.
For anyone else who needs more information please visit Tourette Association of America