“This shop is part of a social shopper marketing insight campaign with Pollinate Media Group™ and GoodNites, but all my opinions are my own. #pmedia #BetterNights http://cmp.ly/3/8vNxcO.”
Can I tell you guys something?
Being a mama is hard.
Being a mama to a special needs little is really hard.
It is beautiful and lovely and breathtakingly gorgeous SO often…but sometimes, in the day to day…it can be brutal.
Little cracks and fissures have been threatening my soul lately. And ironically, it’s a sponsored post that breaks them wide open. So raw.
Miss Jilly will be four in a couple of weeks. I thought that maybe this campaign with Goodnites would be the perfect kick in the pants to try working on potty training with her. I’ve been meaning to do it for a while now, but I just hadn’t mustered up the energy.
Potty training is the pits. It is one of my least favorite parts of parenthood. But trying to potty train a non-verbal, non-walker is like adding insult to injury.
Jill having cerebral palsy means that I would still have to help her at every step of the way. I would have to help her with getting undressed, lifting her up onto the toilet, cleaning, and getting dressed again. It would be a ton of work, but, I reasoned, it would be nicer than having to change a four year olds’ diapers.
So…my plan?
I taught her the sign for potty.
Next, I put some big girl girl pants on her.
You guys.
She KNEW. Exactly. She giggled. Deep, sweet giggles at the prospect of getting to wear Minnie Mouse on her bottom.
I was so excited.
She threw her hands up and cheered “YAY!”
Tears stung. This was a milestone.
Andy watched in the doorway as she celebrated.
My intention was to set her on the toilet every hour on the hour and throw her a potty party if she ever went.
She understood.
She couldn’t tell me with words, but you could see it.
Nothing happened so we let her off and kept right on with our plan.
She wet the floor a while later.
And again.
And again.
And then, she had an accident in the shower.
And I had to leave the room because I lost it.
Not in anger…not at her…just…her needs were so real in that moment.
We celebrate her accomplishments with great fanfare.
Our family cheers a lot.
We each notice the littlest things.
Lu and Henry will often exclaim “Mom! Did you just see Jilly? She just got on the couch all by herself!!!”
WE ARE HER BIGGEST CHEERLEADERS.
And she has made so much progress. So much.
But dammit if it doesn’t hit you like a freight train sometimes. That little steps forward are still SO far behind that of her twin sister.
And for as awesome as the forward steps are, the journey can feel so daunting.
I walked back in the room a few minutes later to see that Andy had dressed her and was just laying on the bed with her. Wrapping her in a big bear hug. The best kind. He sighed deeply. I stayed my distance from the doorway. He was taking notice of the ever widening gap. He is often the one who soldiers on and takes it all in stride. The optimist. I’m the mama who wears her heart on her sleeve. But when I see it in his eyes…when I see how it’s finally almost more than he can bear? I just can’t.
Because sometimes it’s just BRUTAL. Sometimes you can’t hold the tears back anymore. Because you are so sad for your girl. You are so angry that this is her reality. And, frankly, your bones are tired. The work of the heart is the worst, but the work of your skin and bones is real too.
But, you take a great big deep breath, and you put one foot in front of the other.
You put the diaper back on, and you resolve to try again.
Next week. When your heart has healed just a bit.
And you move on.
Because you have to.
Because it’s the course of the Universe.
Because that’s what your kids must see.
Because that is what they must learn.
Tears. Deep breaths. Doing the next thing.
And in this case, it was putting to use the Goodnites Bed Mats for Lucy.
LuLu is potty trained.
Fully.
Day and night.
BUT…every once in a blue moon, she wets the bed. It’s really rare…not often enough to warrant a nighttime diaper…but still wreaks havoc on her mattress when it does happen. It’s usually a case of her being so extra tired she doesn’t wake up. A few days in a row of Disneyland will usually do the trick.
She has a mattress pad on her bed, but I love the idea of extra protection.
Because it happens so rarely, I decided to put it between the mattress pad and her bottom sheet so it wasn’t visible. If nighttime bed wetting is a more common occurrence, you can put it right on top of the sheet so that doesn’t get wet. It’s kinda like a big, flat diaper. It even has peel and stick on the backside so that it stays in place.
If her mattress could talk it would write me a soliloquy of thanks.
As I sit writing this post, I think “Good grief, this is all over the place!”
It starts out all heavy. Tears fall behind the keyboard.
And then, suddenly it’s like “oh yeah, I like this…”
But the more I think about it, the more perfect it is.
Because that’s Life, isn’t it? All these crazy ups and downs. Soldiering on, over and through. Sometimes it’s easy and simple. Sometimes it’s heavy and hard.
I can’t sit in the hard for long. There is no time for that. I must do the next thing. I must be the mama for all of them. Give them each just what they need. Even if it means crying for one and then celebrating the other.
I must still run to Target for essentials. I must still cook dinner. I must still fill up the kiddie pool and adjust the slip n slide.
It’s the way of Life.
So today I will do what must be done.
Another day we will try again.
But in the meantime, if your Must Be Done is working on potty training, or adding a layer of protection for those “every once in a while” nights, you cand find GoodNites at Target and they even have a coupon right now.
Because Life is a messy mix of tears and yays and coupons.
At least it is around here.
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your such a good momma. my heart broke a little just reading about how brutal and beautiful it all is. keep trying that potty thang. i know she’ll get it. God’s blessings to you all.
Wow, so much of this post spoke to my heart. It is so hard raising children but a special needs child can be so different in the scope of parenting. Besides Down Syndrome my son also has a colon defect. He gets nightly enemas through a tube in his belly button. A tube that now has some type of irritation in it. He has become combative when we try to insert a catheter for his enemas. He says it hurts but lacks the verbal skills to explain the pain. It breaks my heart and my body every night to insert that tube. I can’t tell you how many times I’ve been kicked in the head and torso because he just can’t take the pain.Without the enemas he can get a life threatening infection so they are a necessity. It’s just plain hard. We celebrate our children’s successes and pray for strength when it gets too hard. Potty training stinks but she’ll get it–hang in there.
I love this post. I love you. The new setting works great. It will be easier when people are browsing for a specific post. I was still drawn to click and read the rest of the post by your first few words. And I need those bed pads for grant. He wears a pull-up at night still, but most nights they leak. And I just can’t wash all his beddign every day. It’s too much. I’m not sure how he would feel about laying on one of those. Maybe if I put it under the sheet at least I wouldn’t have to wash the mattress pad. That would be better. And yes, the crazy deep and the mundane details of life all mixed in together. This is our life.
Thanks, I love you too. :)
As for laying on the pads, they are pretty soft. They do crinkle a tiny bit, but not even as much as a diaper. Besides, if he’s already wearing a pull up he probably won’t even notice it!
coupon couldn’t have come at a better time. off to target to buy overnites. 11 years dealing with diapers and 11 years of watching my husband just like you watch Andy….when it hits them…it stings harder. I get it.
One of my favorite things about you – when I read your words, I feel like you are sitting right here talking to me. I love that. I am so thankful that you let us see into your life and share with us how it is to have a special needs child. My heart grows whenever you share. Thank you.
Kate @ Songs Kate Sang´s last blog post ..Kate Eschbach Photography | Antonio
Amelia is potty trained when she’s awake. BUT it’s when she’s asleep that we have issues. Last night she woke up screaming because she had wet the bed after falling asleep on our bed (she’s been avoiding daytime naps on weekends, at day care no issues) and was hysterical for over an hour. Hysterical. She sleeps so deeply that she does not wake up when she feels the urge. She’s in a pullup at night but she sacked out without a pullup. Hubby was doing laundry into the late evening hours.
I understand your frustration. It’s so hard. Sending you and the family virtual hugs.
Caryl
You know what I love about your blog? It’s so relatable. You write so well, like you really are trying to connect with other parents. It’s not just a sponsored post. Most bloggers, well, their voices change on sponsor stuff. It sounds fake, even when it’s not. However,you do it so well. It’s very real.
I don’t have children with physical disabilities. But I do have a child with SEVERE anxiety which is a symptom with his Aspergers. There are really good days. Then there are the absolute worst days when I want to sit on the floor and just scream and cry. I want to help him but the his anxiety gets such a huge grasp on him. It’s so hard as a mother to watch your chlld struggle. Your post made me cry. I was right there with you. We are very different, yet the same. Thank you for being honest.
This is the best, the absolute best sponsored post ever written in the history of blogging! Seriously, I cried. This is why I love your blog. It surprises me daily. Your heart and your faith, you are a warrior! Kisses, hugs, prayers, yeas, and resolve to put one foot in front of the other.
XOXO
Megan
AbsoluteMommy´s last blog post ..Hello July
Aw, sigh…and lots of hugs sent your way. And now to go click on the coupon…
Oh geez…I SO get it. Like, crying my eyes out with you get it. Our daughter just turned 4 last week and while no one on this planet will celebrate and remember and recount all the glorious ways God has poured out strength over her life like our little fam…we are not naïve to what isn’t there. It would be ridiculous to try to pretend there aren’t some gaps and I don’t even have to explain all the things I was about to type bc I know you KNOW. We tried the potty training and had to go back bc my sweet one just wasn’t fully getting there. Im thinking about starting to try again soon, but we’ve just needed to wait until our hearts are ready to go again. Its brutal. But dang… so rich, too. I almost commented on one of your recent instas when you mentioned something about Jilly being just so dang beautiful bc I was like…AHH I KNOW…my girl, I swear to you…she takes my breath away. I don’t even know where Im going or what Im trying to say…just wanted to say Im right there, too. Maybe Im commenting to feel like Im not alone…or to let you know that youre not alone…I don’t know, but they’ll both get there. And we’ll get through it. And no one will be jumping up and down and praising God and crying that God gave our girls the gift of being able to go potty like a big girl more than us and our husbands and their sweet siblings who love them so. Praying God gives both our hearts the peace and strength to endure and keep FIGHTING. Id hug you if I could :)
My 22 year old brother (who has epilepsy, and developmentally is 4) still wets occasionally, it stinks when it happens, but its just part of the deal. Jilly will get there. slowly but surely. Keep up the good work momma, take a break when you need to.
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