The Secret Life of The Special Needs Mom

The Secret Life of The Special Needs Mom

I am raising a child who is not my own.

He is my flesh and blood. I am his mother. He is my son. But for nearly all of his life, we have deferred to experts to tell us what to do with him. One of them says take him to this therapy. Obediently, we go. Another one says, no, what you really need is this program. So we turn around. A third one says, what you really need is medication. And off we go to explore that path.

Ultimately, every decision is up to us. And we don’t go blindly down any new road without consideration. But from the very first day I became a parent, my child’s life depended on the expertise of other people. I couldn’t help him. No one could show me how, not then. And so began his life, being raised by smart people with long, useful degrees.

Maybe that’s how every parent feels, even parents with typical children. I wouldn’t know. My atypical child is my firstborn, and I have only ever known this life.

My son gets a cough, and I take him to the doctor, knowing we will either go home or to the ER, depending what the doctors find. Depending on what they decide we will do. I am grateful to live in an area with so many experts available. I am grateful because my son is still not mine to raise, even at four years old. I don’t know what the right call is. Sometimes I can guess the right one. But it’s up to the professionals.

My son doesn’t eat well enough to keep him healthy, and I take him to the doctor. They tell us how to fix it. They tell us what we will do next. I nod my head and take notes and begin living this new phase of our life.

My son doesn’t walk the way he is supposed to, and I take him to the doctor. This is a problem that will have to be given to a new expert. They tell us to go to therapy. We are lucky to have these therapists in our lives. The therapists give us directions, and we follow them, finding ways to add exercises and build skills. Our days are busy, but they told us we need to do it all.

My son doesn’t go to many playdates. We should go to more, but we’re out of time. The experts told us we had to get so much done. There aren’t enough hours in the day. But we need their help for my son to thrive. We should go to more playdates. He would like more playdates. Maybe if I tried harder, he could. I should ask the doctors about that.

This is the secret life of the special needs mom. It isn’t a bad life. It isn’t a life to be pitied. It is a life filled with waiting – waiting for the next steps, the next lab results, the next expert to show us how to do better. We are glad for the help. We know we can’t do it without them. So we wait. We know we have to be patient. Waiting is the only way to learn where we will be sent next.

But it’s a strange thing, to raise a child who is not yours. Who is yours, but only between appointments. It makes us feel sad, and happy, and lonely, and loved. It’s a delicate balance. We must always be careful to schedule, but be flexible; be accommodating, but firm; juggle, but take time for ourselves. We must remember that all of this will be worth it, in the end, for our child to be the very best version of himself. We must know that perspective is key – we are not the only ones who suffer. We must learn to ask for help, and learn to do things on our own. We just have to try our best.

At least, that’s what the experts say.

I am raising a child who is not my own.

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Three Years Of You

Three Years Of You

Dear, sweet Jenna Paige:

Happy third birthday! Or, in your words, happy day of your number turning three! It’s so exciting that you’re an official big girl now!

As I thought about what I wanted to write for this post, I realized the issue wasn’t what to include about you. It was about what I could possibly leave out of your vivacious, big personality. So this might be a long one :)

You don’t do anything halfway. You are committed to your joy, tears, and everything in between. You love to love people, and you love to let them know how they have crossed you. And you have to do everything yourself. I mean, everything. Every. thing. Honestly, that used to frustrate me. But as I watch you become more and more determined to finish a task by yourself, I am so proud of your independence and courage. You will try anything once, and you almost always finish it, too.

Your independence is fierce. You do not back down from an idea or a challenge. You don’t care what people think or what they say. You are always ready to do your own thing and take no prisoners as you do it. This amazing attitude and strong will are going to help you do great things, little girl.

I love the way you crack yourself up with your own jokes. I love the way you play with your princesses, putting them in your little pink castle and giving them all different voices and stories. I love the way you are almost always dressed up as something else: a princess – or, as you say, a Disney “pincess” – Doc McStuffins, or sometimes a creation you thought of on your own. You are always ready to head off on an adventure in your high heel Little Mermaid shoes and your clip-on earrings. Everything about you glitters pretty much everywhere you go.

It’s been so fun to listen to you learn to talk in long sentences and tell me about your day! You love to give me lists of things you’ve seen or done, and you love to tell me all the facts you’ve learned about a new subject. You chatter away about your favorite dolls and your princess bed and your sparkle shoes and your teachers and your friends and church and everything under the sun. I love to hear your little voice. I love that you still haven’t mastered some of your Rs and Ls. I love it when I ask you a question, and you look to your left and your right, put your hands in the air, and say, “I don’t know!”

I love the way you still cuddle with me, and how you’re always willing to give me a kiss or a hug. I love how you are always determined to sleep in my bed, on my pillow, with my blanket. I love how devoted you are to your own special blanket, appropriately named Purple Blanket. I love how you lovingly choose a baby (or two or twelve) to put in bed with you at night, and kiss it good night, and tell it you will take care of it because you’re the mommy.

You are so unique, Jenna. In the same thirty seconds I can see you in a princess dress, twirling around, and also eating dirt. You aren’t afraid of bugs or any of the things that make Mommy scream. You ask us to dance and shake our hands and tell us “Nice to meet you!” You say your Ns as Ms so you tell me that you “meed help” or ask to watch “Finding Memo.” You have the littlest lisps on your Ss and two dimples that I can never resist. You love to choose your outfits, paint your nails, paint MY nails, and decorate your room with drawings (and the occasional stamp).

Jenna, I just love you so much. In one way I am sad that you’re growing up, because I still remember my last little baby and how small you used to be. But I also love each new phase of your tiny little life, and to see you grow and learn every day. Even though you recently announced that you will “never EVER grow,” I know you will. And it will be amazing.

You will grow up to be an incredible, strong, independent, fashion-savvy person. But for now, I can’t wait to see what year three brings us.

I love you, I love you, I love you, my Jenna girl, my Jenna Bear, my Neener, my Jen, my baby girl, my little love, my sweet, precious baby. Happy third birthday!

Love always,

Mommy

The Day(s) My Marriage Ended

The Day(s) My Marriage Ended

I married my husband, Daniel, on a warm spring day in 2011. Actually, since we were married March 19th, it was still technically winter. But a Georgia winter, meaning it was 65 degrees and sunny.

It was a beautiful day. My father-in-law performed the ceremony, and that day still goes down as one of the most fun of my life. We danced to all the wedding cliches, had enough candy to feed a medium-sized village, and even broke out into a flash mob at one point. It was perfect.

And then real life began. Ours, like so many young couples’, began with a joy all newlyweds have: The joy of lying. Not big lies. Not like you forgot to tell them you’re wanted in five states. But little, easy lies, like, “This dinner is delicious!” or “I definitely like this painting.” I used to sneak out of bed in the morning and brush my teeth before Daniel woke up so he would think my morning breath was naturally minty-fresh. You’re welcome for that free tip, humanity. We wanted to make each other happy, so we were willing to overlook towels on the floor or accidentally-destroyed projects (I’m still really sorry, Daniel). We made the extra effort because it was worth it.

We had been married for a year-and-a-half when we found out we were expecting our first baby. We were thrilled! As you probably know, our firstborn arrived a bit less traditionally than the average bear.

And that’s when our marriage ended the first time.

Gone were the days where our biggest worries were over whether to order pizza or go out for dinner instead. I didn’t get enough sleep to even think about waking up early to brush my teeth and sneak back into bed. Towels on the floor became just one more nuisance on a never-ending list I kept tabs on in my head.

Joshua needed our constant attention. After four months in the NICU, he came home to therapies, specialists, oxygen tubes, apnea monitors, and more. As time went on, the needs changed, but the stress of having a special-needs child didn’t.

You want to know one of the truths about having a kid with special needs? It kills your marriage. Kills it. We were both still there, still married, but the marriage we had known was gone forever. In its place was something almost unrecognizable. And it was getting worse every day.

I’ve said before that having a child like Josh changed me. In so many ways, it changed me for the better. It made me more compassionate, and more understanding of the struggles of others, and opened my eyes to an entirely new world.

In some ways, though, the changes weren’t as great. These were the changes that were the hardest to resist. I was so angry at God for allowing Joshua to have so many issues. I was angry at myself for not realizing something was wrong sooner in my pregnancy. I was angry at everyone around me. And while throughout the day, I made an effort to at least smile at other people, by the time I got home from the hospital or new specialist or therapy session, I decided I had given all I could. I couldn’t possibly deal with one more thing. And I took it out on Daniel.

Every forgotten task, every misunderstood conversation, every dish I washed alone – I kept track of it all. I knew how many times I had done the laundry and how many times Daniel hadn’t. Sure, he was working all day, but I was busy with the baby. It wasn’t fair. That’s what I kept repeating to myself. It wasn’t fair. I was a stay-at-home mom, but not by choice. I had never asked for this. I wasn’t even sure I wanted it for a long time. But then it arrived and was so much harder than I expected. And I knew I wasn’t up to the challenge. And not being up to the challenge made me defensive. And being defensive made me resentful. And being resentful made me bitter. And all of that culminated in my marriage slowly dissolving into two bickering parents who didn’t know how to stop arguing.

No one is ever 100% innocent in these kinds of things. But I will be honest and tell you that a lot of this was on me. Daniel tried his best to help me, but I didn’t want his help. And then I got angry at him for not helping me. And then he tried to help me again, and obviously that meant he thought I wasn’t doing a good enough job, and then I was angry again. And then he didn’t help, and how dare he not help me? It was a vicious cycle.

We went on like this for a few years. We had our daughter, Jenna, just 15 months after Josh was born. Daniel worked full-time, and I worked part-time for a while, eventually moving to a full-time position where I worked from home. We had two kids under the age of two, hectic jobs, financial struggles, and so many appointments to go to. Life was busy. Too busy. Jenna was a fussy newborn. Josh didn’t walk until Jenna was almost a year old. There was no rest, no time for our marriage anymore. Even if we had wanted to work on it, there was simply no time.

Same people. Different marriage.

And then one day, Daniel and I had a big argument. (I’m not trying to air our dirty laundry or anything, and I asked Daniel if he was okay with me writing this. Just want to put full disclosure out there.) It was bad. I was so angry and so tired. Josh had started an intense feeding therapy program. Daniel was dealing with some (thankfully resolved!) health issues. It was stressful. And we argued, and then I shouted that I wanted a divorce.

It wasn’t true. I didn’t want a divorce. I was so tired, so angry and bitter, and I just decided to say it, to goad my husband into arguing with me. But he didn’t argue. Instead, we sat in silence for a while. I knew I should apologize. But I wouldn’t. I didn’t.

I thought that I was already so broken that nothing could touch me anymore. But I was wrong. The look on Daniel’s face when I said those words to him made me feel like I had shattered all over again, like the day Josh was born, and all the days after when we heard more bad news. And so I made a choice.

I decided to try to let the little things go.

It was hard at first, and is still a struggle for me, if I’m being perfectly honest. But my goal was to stop looking for ways to blame Daniel, and instead look at the ways he loved me and showed me his love every day. I decided to think about his intent – did he not take the garbage out just to make my day harder? Probably not. Probably he had just come home from a really hard day at work and it slipped his mind while he was helping me with the dishes or feeding the kids. Probably I could just remind him, or even do it myself. And then we wouldn’t have to fight. Things didn’t have to turn into an argument every time one of us made a little mistake.

My other goal was to get to back to reading my Bible every day. That isn’t meant to sound self-righteous; I just knew I needed to hear what God had to say instead of screaming my own words at Him. As we say in this house, it was no longer my turn.

So I started working on my goals. And I’ve messed up so many times. But it’s been getting easier and easier.

And that’s how my marriage ended the second time.

Same people. Different marriage.

Slowly but surely, the arguments grew to be less frequent. We sought ways to work together instead of ways to blame each other for the stresses in our life. Our other situations didn’t change. Josh still had a lot of needs and was a lot of work. We still had two very little kids and very little time for ourselves and our marriage. Those things wouldn’t change. But we could. We did.

When I first decided to write about this, I was hesitant. I didn’t want to paint Daniel in a bad light, because he is a wonderful, godly man, who married a slightly crazy, super short woman. I didn’t want people to judge us. I didn’t want to come across as having so many struggles.

But I don’t think we’re alone in these struggles. Even if you don’t have a kid with special needs, your marriage has likely hit a rough patch. If it hasn’t, please submit yourself for testing at the nearest health facility, because you might be a robot.

And if you do have a kid with special needs, and your marriage is struggling, and you’re not sure how you will possibly make it through one more day of therapy, and leg braces, and helmets, and practicing stairs, and giving choices, and being a constant cheerleader and advocate for your child so they never have to feel different – it’s going to be okay. Things might not change. But you can.

Same people. Three different marriages. And we would never change a day.

D and K

On Your Fourth Birthday

On Your Fourth Birthday

Dear Joshua,

Happy birthday, big boy! Four is a legit big boy age. I know you’re about 78 on the inside, but four seems pretty old, too!

This year has been huge for you, dude. You have accomplished so much. You can walk on your tippy toes now, and you are rocking the scissor crafts! Bumpy slides, climbing stairs, and riding the therapy peanut have been no match for you as you master them all!

Of course, I think we can all agree that one of the biggest skills you’ve developed is your speech. Joshua, I love you. And you are the chattiest person I know. You ask me what we’re doing, where we’re going, who we’ll see when we get there, and if I remember how much fun we had the last time we were there. I might not remember, but you do. You remember everything. You call a doorbell a “dingbell” and you have a little lisp, so when you say things like “Thanksgiving,” it sounds more like “Skanksgiving.” You’ll probably grow up thinking Thanksgiving is a holiday to celebrate giggling since I laugh every time you say it.

I love to hear the stories you make up. They usually involve Marshall from Paw Patrol and Batman or Captain America, always fighting bad guys. And they always win. You like to tell me which Bible stories you like the best, and even though you still insist Jesus will return to Earth on a rocket ship, I love to hear what you’ve learned about the Bible.

Josh, I just love to see your personality develop. You like to be silly but you do not stand for shenanigans. You like The Rules and you make sure everyone is aware of them. We all know that you’re pretty much raising Jenna at this point, and I do appreciate it. You remember every detail of every conversation we have, and you love to answer questions!

There is a possibility that you’re a tad stubborn, too. In fact, I think you get more stubborn every year. But you know, Joshua, for every moment I am frustrated with you digging your heels in, there is also a moment of admiration for you and the way you fight. You’ve been a fighter from literally the first seconds of your life. You had to be. And while we can butt heads sometimes, I would never change that about you. It’s made you who you are. It’s what kept you with us four years ago.

I know some things are more of a struggle for you. I’m sorry, because I know it isn’t fair. But you don’t let anything get you down. You don’t worry about what other people think of you. You just go out there and do your thing and if someone wants to follow, they can. And they do. Your smile is ridiculously contagious. Sometimes I know you’re up to no good and then you look over and grin at me, and I have to smile back.

Remember when you broke your arm? We didn’t even know it was broken for two weeks. Because you’re half human, half superhero. And you rocked that neon green cast.

Joshua, I want you to know how much I love you. And how much I admire you. You have accomplished more in your four years than some grown people ever will. You’ve had to work harder for every little victory, and you’ve had to struggle over the small things. Part of me is sad about that. But part of me know that it has shaped you into an incredible person who never stops trying. Your work ethic is better than mine, kid. And you have compassion for so many people in different situations. You’ve learned about different disabilities and struggles, and it’s made your heart even bigger. You love to love people.

Happy, happy, happy, happy birthday to my big little man, who always has a smile and a reminder about using our indoor voices. I hope this next year is just as great.

Love always,

Mommy

40 Thoughts Every Parent Has While Watching The Octonauts

40 Thoughts Every Parent Has While Watching The Octonauts

1. How did all of these animals even get together? Where is a polar bear going to meet a house cat?

2. While we’re on that topic, why is a house cat even one of the Octonauts? Aren’t cats scared of water or something?

3. He has an eyepatch. Naturally.

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4. Wait, the eyepatch doesn’t even cover anything. He just lifted it up and there’s just a regular eye under there. So he just wears it to inhibit his vision?

5. They named the penguin with the Hispanic accent Peso. Tell me that isn’t racist.  Read more