When I Hear That My Daughter’s Apraxia Will Never Go Away

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Hello apraxia. Hello global apraxia.

It’s hard to believe we’ve never talked, especially since I’ve certainly done my fair share of talking about you. When I gazed into my new baby girl’s eyes, and laughed along happily to her hearty giggles, I had no idea then that you were there, lurking in the shadows.

The day I discovered you were behind the delayed motor milestones and the lack of speech, I cried heavy tears and felt a weight I don’t think I quite have shaken yet. You certainly brought your A-game, global apraxia. I hate to admit I have felt defeated by you before.

However, you never managed to crush a small little girl’s determination, attitude, resilience and perseverance.

We are told you will never go away. Anything requiring a motor plan will always take “more repetition than most.” Oh, how many times have we heard that? I hated you once. I hated watching my baby girl struggle to speak, to jump, to ride her bike, to drink without choking. In fact I still hate you as I continue to see her struggle to dress herself, feed herself, and write her name. In fact, I don’t think I’ll ever quite forgive you when I think about the day she almost drowned.

Mostly though, I feel sorry for you.

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You have no more power here in this house, because my little girl has shown she can beat you time and time again. She is a hero who wins daily, weekly, and monthly battles, and that winning is something you will never know.

Bet you didn’t expect something so strong to come out of something so small, did you? Well, we actually have that in common. My daughter’s bravery took me by surprise, too.

Because of your stubbornness, we only grow stronger and more confident, knowing that any obstacle in our way can be defeated with faith, tenacity, and an unrelenting positive attitude.

This post originally appeared on SLP Mommy of Apraxia.

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How I Persevered When Mental Illness Made Me Feel Unworthy of Love

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Dear mental illnesses,

You almost took my life. Several times. I wanted to leave this world because of you, Depression. You, Bipolar Disorder, caused my moods to shift so violently that I’d be happy and on top of the world in the morning and suicidal by night.

You made me feel like I couldn’t handle you. Your control made me to believe I was a piece of trash, unworthy of love and happiness. I believed you for a long time — too long.

Borderline Personality Disorder, you were such a horrible nemesis that, for so long, I didn’t even want to admit that I had you. I hated you and what you made me feel and do. You created so much anger in me. You made me feel worthless, fearful, hopeless, dangerous and suicidal. I was out of control and loud, and I didn’t want to listen to anyone or try to do well. I couldn’t.

Anxiety, you told me I would never be happy with another woman. You’d wake me up in a panic nearly every morning with thoughts of wanting to kill myself because of who I am. You screamed at me that God would never love me if I loved my soulmate. I couldn’t eat. I felt nauseous and sick because of you overwhelming my thoughts and body with your lies.

But when I met her, my whole life changed.

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She loves me like no one else ever has or ever could. Thanks to her love and the help of the people I let into my life, I am no longer just surviving — I am thriving.

You all still linger, and I will always have to keep you at bay and remember to take care of myself, but I am handling all of you far better than I ever thought possible. I’ve learned that love truly does conquer all. I’ve learned that you will not defeat me. You will no longer tell me I’m unworthy or hopeless.

I know now that I can have hope. I do have hope. I’m living well with all of you! I’m happy and healthy now, and I will do whatever I need to do to make sure you’re out of my life for good. I will win!

Sincerely not yours,

Megan

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To the Disease That Tries to Rob My Son of a Happy Life

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Dear Pelizaesus-Merzbacher Disease,

You make my life hard, really hard, and that is an understatement. But the one who you really make suffer the most is my innocent son, Nathan. He deserves a full life experience, but no, PMD, you robbed him of that. I really do hate you, and all of the pain you have caused me, my son and the rest of my family. The struggle has been real.

You are a strong one, Pelizaeus-Merzbacher. You have prevented my son being independent. But for all of the expectations you destroyed and all the joy you ripped from our hearts, we are still happy. Nathan is still happy. I will not let you take that from us. I will not let you win. As strong as you think you are, my family is stronger.

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The love we have for our special son surpasses any boundaries you have set on him.

Nathan cannot support himself while sitting up, but we have a special chair for him. Nathan cannot eat full meals orally because he gets exhausted and starts to choke, but we have a feeding tube for him. Nathan can’t quite figure out the use of his hands, but we have occupational therapy to help him.

We have a solution to your every problem. So bring it on.

I do have one thing to thank you for, though; you have taught me many things about myself. You taught me patience I never knew I had, selflessness I never knew I had, and strength that creates hope.

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My son Nathan may never know how to tie his own shoes or learn his ABCs, but he will continue to feel. He will feel the chilly water of Lake Michigan when I dip him in. He will feel the fresh cut grass around him when I lay him down outside for a family picnic. He will feel the wind blow in his hair when we take him for bike rides. Most importantly, Pelizaeus-Merzbacher Disease, he will always feel loved. You will never rob him of that.

From,

Two very lucky people

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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A Letter to My Pregnant Self, Who Wished for ‘Happy and Healthy’ Babies

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Dear Pregnant Self,

First off, let’s get something straight: you have absolutely no idea what’s about to go down. You’re sitting there, ginger ale in one hand, “Baby Wise” in the other, attempting to wrap your mind AKA gain control over this whole child-rearing thing. Spoiler alert: just like every other season of your life, things won’t quite turn out the way you imagine. They’ll be better, but completely different than what you are picturing.

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If you have said it once, you have said it a thousand times:

“So do you think you are having boys or girls? Or one of each?”

“I don’t know” (insert surprised face, as if you have never thought about it). “But we don’t care, as long as they are happy and healthy.” (Smile, as if you had ever even thought about the possibility that either of those things would not be true.)

We have all said it. It slips off of our tongues as quickly as a “Good,” after a “How are you?” (Which, by the way, we always respond with good. Does the stranger passing on the street really have time to hear about all of our struggles or woes?)

“As long as they are happy and healthy.”

First off, let’s be real. That first part, the “we don’t care,” that’s a lie. You and Hugh have talked about it a lot and both of you would love a boy and a girl. You know, because every American family has a boy, a girl, and a white picket fence to boot. Secondly, what does “happy and healthy” even mean? You say it in such a robotic manner, but the truth is, what you mean by that is you want a “normal” baby, whatever normal means.

Kids are walking germ sponges. Everyone anticipates their little one to get sick a lot as a child, you know, to build their immune systems up (which by the way, this won’t apply to you either… but we will get there eventually). The saying is bizarre. It’s not like we want our children to pop out of the womb with the immune system of an adult, a layer of antibacterial solution seeping out of his or her pores at all times.

And, beyond that, happy? Can you imagine a little person who grows up with a jovial smile on their face at all times? Not only would this be creepy, it would be unrealistic. Furthermore, haven’t some of your biggest times of spiritual growth come from those “not so happy” times?

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The thing, pregnant self, is this: the world is going to look at the two baby girls that you are about to have as two girls who don’t fall into the, “happy and healthy” statistic.

But you believe that God’s rigged this whole thing, and that in His eyes, your girls are going to be much, much more than happy and healthy. You believe that they are going to be two beautiful beings that shine His light to all that come in contact with them. You believe that they are going to teach you, and those around you, more about His love than any other person (outside of that good looking, patient husband of yours!) ever has.

It will be harder at times than you would have ever planned for, yet more amazing and purposeful than you could have ever dreamed. Not always happy and healthy, yet always immensely loved and desired.

You will keep saying this whole “happy and healthy” thing, even after the girls are born, for a couple months at least. And that’s okay. There’s grace there. The truth is, we all tend to say and do some pretty careless things until we have put on shoes that teach us otherwise. But trust me on this one: you will be thankful for those shoes. No matter what you think now, there will be a time where you would not have it any other way, for you will believe it is God’s best for your family.

Dear pregnant self: you, too, are so very loved. Hold on tight, for an adventure beyond anything you have ever imagined is right around the corner.

Sincerely,

A somewhat wiser, absolutely sleepier, future you

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The Choice Muscular Dystrophy Presented My Family

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Dear Duchenne Muscular Dystrophy,

Seven years ago, we had two little ones at home, but there was still an empty seat at the kitchen table our hearts longed to fill. Soon, we were madly in love with a chubby little baby boy we only knew through photos. Fifteen months and a long flight across the ocean later, I had the opportunity to whisper in his ear that I was his mama, and I was never going to stop fighting for him. Who knew that an actual battle was right around the corner?

You did, of course. You were with him the moment he breathed his first breath. You had 23 months to wreak havoc on his little body before I even knew you existed. This makes me jealous of you in some twisted way.

You will strip away his ability to walk in a few years. Not long after that, he will no longer be able to lift a fork to his mouth or give me one of his famous bear hugs. And the heart and lungs are muscles too, right? Yes, of course they are.

When the diagnosis dust settled and I could finally see past the pain, I made a choice. Our whole family did. We could focus on what we were going to lose and what you were going to take from him, or we could choose to live. So, as hard as it is to say this to you, Duchenne… thank you.

Thank you for giving my husband the courage to walk away from a job that gave us comfort and cushion for a life that gives us time and the ability to be present. Thank you for letting me see that the dishes are not nearly as important as Lego creations or the spontaneous dance party. If you never came into my life, I would have missed years of moments with my children for the sake of busy.

Because you made your way into our lives, we had to truly decide what was important. It didn’t have a thing to do with college funds or credit scores. We lost things, but we gained joy. We love bigger and hold on longer. We look each other in the eyes and listen because you’re constantly there to remind us that the clock is ticking.

That chubby little baby from the photos has blossomed into the happiest 4-year-old I’ve ever known. I don’t know of a person who has met him and hasn’t fallen in love with his charm. When I look at him, I don’t see disability — I see hope. I see a little boy who, in spite of the cards stacked against him, is going to do big things. He is strong despite the strength you take from him every day. He is my hero.

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So, here it is, Duchenne. We thank you for what you’ve allowed us to see. This precious gift of knowing our days truly are numbered is priceless. But don’t start feeling all warm and cozy inside just yet because this mama still has a lot of fight left in her. Don’t you dare forget that moment I whispered in my son’s ear that I would never stop fighting for him, because I won’t. I know I can’t stop you from taking away his muscles, but you can never, ever take away our moments. I’ve got your number, Duchenne, and I say, “Game on!”

With respect,

Maddox’s mama

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This Morning My Son Brought Me Coffee. Here’s Why That Was Amazing.

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Since the dawn of time, darkness has cast its fearful spell on humanity. Now, I can’t prove this, but I’m certain Neanderthal fathers around the globe were lifting their knuckles from the floor to console their little hairy bundles of joy. No doubt, they were arguing the fact that indeed nothing was lurking beneath the bed rock. These large, lumbering dads were themselves terrified of planting a hobbit-esque foot squarely onto a hand-carved play thing. (Pre-Lego. Sadly, times have not changed at all.)

In truth, the darkness isn’t scary at all. The fact that we don’t know what hides under the cloak of darkness is what sends shivers down our collective spine. Yup, the fear of the unknown is a mighty beast… until you put a hand out in front of you, of course.

This morning I allowed our 9-year-old son to shower on his own, dress himself, sit down to his breakfast and sip on a cup of hot tea. If that doesn’t boggle your mind, just last night I asked that he prepare his old man a cup of Joe. All. On. His. Own.

Allow me to explain myself. Our son, Nicholas, is autistic, so a few of these life skills are coming to him gradually. You, sir or madam, might think of a bathroom and kitchen as everyday features in your home. I see them as potential horror chambers armed with medieval torture devices yearning to deliver hurt. My wife says I have a flair for the dramatic, which is plausible, maybe, but I have genuine concerns that Nicholas might hurt himself. Don’t judge me! I’m a dad, and I can’t help it! (Remember not to sit too close to the screen while you’re reading this.)

Yet, after sipping on my tepid (but wonderful!) coffee and observing young Nic conquer his morning routine, I realized how capable he really is. My own fears and concerns, although coming from a good place, have ultimately been more of a hindrance than any bruise or cut could ever be. This morning I had a parental eureka moment. There are many scary things out there in the darkness. When we face these fears, terrifying as they might be, realistically we’re only presented with two options. You can step into the dark and deal with the monsters lurking within or remain hidden in one spot hoping they don’t smell the scent of fear.

Whatever you decide, remember fear is a prison. We are harboring Neanderthal genes, whether you like it or not. I’m sure cavemen wouldn’t survive in a cage. So why don’t you take a deep breath and step into the dark. You might be surprised by what you find.

 

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