These Are All the Things I’ll Never Really Know as a Parent

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This originally appeared on Role Reboot. Republished here with permission.

I’m not a person who relishes infinite choices, paths ahead all equally fraught and delicious. I like guidelines and known entities, maps and strategies. Parenting is, understandably, a challenge for someone like me, who wants to know what’s coming next.

Even without those proclivities, all parents wonder about the origins of their children’s difficult phases and their own complicated reactions to them, considering the ramifications of every choice, asking for advice and considering every angle. Did I handle that right? Could I have avoided that struggle?

My daughter, Sammi, however, has raised that level of uncertainty to an entirely different level. At 9 years old, for the first time ever, she’s just had several months without surgery, medication or special diets, leaving me wrestling with the questions above plus another: In these nine years, what was part of the normal rhythm of childrearing, and what was related to her constant ill health? What required the normal course of action, and what called for something different?

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When she was a baby, I was flattened by feelings of thick despair and panic, believing something was wrong with her. She didn’t sleep, breathe or eat right — and my psyche was on fire, all adrenal glands pumping vigilance into my veins for months. Doctors told me she was fine, told me to sleep train her, to withhold nursing and offer more food, to wait for her to outgrow things.

I had nearly every symptom associated with postpartum depression. I went to therapy because that’s what women with postpartum depression are supposed to do.

It turned out that Sammi really was broken. When she was a year old and on her third hospitalization for a cold, we finally discovered an extra artery wrapped around her airway and gullet, choking her from the inside. Surgery at 14 months to correct the problem put an end to the hospital stays for respiratory infections. The constant nursing I’d doggedly determined to continue had turned out to be the only thing that kept her from a feeding tube. My regular nagging and anxious questions were what kept her in front of the doctors who eventually diagnosed her.

It was the biggest, ugliest feeling of “I told you so” I’d ever experienced.

Does that mean I didn’t have postpartum depression? Does that mean my anxiety and panic, my feelings of fear for her life, were not hormonal but pure instinct?

I will never know.

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As a toddler, Sammi’s tantrums were monumental and violently self-harming. She sat balanced on her tailbone on our hardwood floors and threw herself backward to whack her head against the wood, screaming, over and over until I moved her onto a padded cushion, which only dulled the thud.

She woke raging in the night, yanking me awake with the sound of shrieking and banging. I’d race up the stairs to her room and find her in the dark, on her floor, grasping the upturned ends of her rocking horse to hold them in place as she rammed her forehead into the sharp ends. We took the horse away after that happened more than once, but she just used the bottom rail of her toddler bed instead.

We cut her hair with bangs to cover the bruises she gave herself.

Eventually, terrified that something horrible was happening inside Sammi’s brain, we went to a developmental therapist. The therapist listened thoughtfully and assessed the situation as chronic sleep deprivation resulting from Sammi’s years as a cardiac patient and our reluctance to set boundaries around bedtime. Gently but firmly, this therapist led us through behavioral changes we could make for ourselves that eventually resulted in equally epic behavioral changes in our preschooler.

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Does the fact that our changed behavior resulted in our 3-year-old-daughter changing her behavior mean it was our fault all along? Or was there something really wrong with her — a neurological issue — that she simply outgrew while we worked through our own issues?

I will never know.

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I read to Sammi, as I had to her sister, all the time. We sat together, the three of us, as my finger pointed at the words, and I lent voices to characters and described the pictures. Her sister became a voracious reader. She did not.

Her intelligence seemed just as keen as her sister’s; she navigated the world easily, identified colors and sang songs from memory, but she did not read. She squeaked along in school just at or just under grade level, her frustration with decoding letters into words and words into sentences reaching an explosive level, mediated only slightly with each year of maturity.

I wondered if her inability to eat well was affecting her ability to concentrate. Myriad gastrointestinal issues had kept her from eating more than a few bites of food at a time for years, a schedule not easy to manage during the school day. I knew she was always under-fueled. Could this be keeping her from staying on task with reading?

Her teachers said no. They said she was fine, that some students take to reading later, that she was not flagged for reading specialist support.

However, after a second cardiac surgery at age 8 — to free her aorta, curling itself into her esophageal walls — finally gave her the ability to eat well and quickly, her reading abilities jumped several levels in a matter of months. Chapter books and series began to fill the shelves beside her bed. I need the next one, Mommy became a common phrase.

Does that mean her teachers were wrong? Did she need the better nutrition for her brain to accommodate the reading her grade level dictated, or is this a coincidence of that magical developmental step they said she’d take when she was ready?

I will never know.

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At 9, Sammi stands just a hair above 4 feet tall and weighs just barely 50 pounds. Her projected adult height is 4 feet, 9 inches tall.

She was born small and proportionate and never measured higher than the third percentile. It seemed we were always being promised that now she would grow: after her first cardiac surgery, her tonsillectomy and adenoidectomy, the diagnosis of gastrointestinal disease, another cardiac surgery.

They eventually started calling it idiopathic short stature instead of failure to thrive.

We refused the hormone therapy recommended by an endocrinologist to whom she was sent; it would have meant injections six days a week for almost nine years. Every night to say, “We don’t like your size; bend over,” was unthinkable — we said no and left her small.

Will she resent us for this someday? Or would she have resented the injections and their message even more?

I will never know.

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It’s a black box, parenting, and even blacker when ill health complicates matters. We can all pretend the parenting books give us a map, but at best they’re a flashlight in a darkened gymnasium, giving us a narrow view only a few feet in front of us. We grope, flounder, children’s hands clutched tightly. We navigate by feel to a destination we can’t even see.

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It Sucks the First Time You Realize You Have a Disability. But Look at Me Now.

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picture of me I remember the first time I discovered there’s something different about me — that I have a neurological disorder called spastic diplegia cerebral palsy.

My mom was making a phone call to my physical therapist and discussing my PT goals, if I recall correctly. I stood beside her bed and burst into tears. Which is not unusual, I was and still am a sensitive person. I told her I didn’t have a disability, and I didn’t want to ever have to use a wheelchair like my sister. This began a long discussion of what cerebral palsy is and how I would not need a wheelchair because my diagnosis was mild and the most common form.

Let me tell you, it sucks the first time you have the realization that you have a disability and are different than your peers. Retrospectively, there are a lot of worse things that can happen than being in a wheelchair. I know plenty of people in wheelchairs who have a good, happy life — my sister included.

In junior high, I was bullied for the first time. I heard pejorative uses of the word retard and was the subject of rude hand gestures to connote this. Every single time, I wilted under the weight of their taunts. Thankfully, my parents, teachers and principal stood in the metaphorical gap for me, and the bullying stopped. In the latter years of high school and now college, I started to research my disability and become more educated. Today, I’m unashamed of my CP and take great pride in my knowledge. Sure, there are days when my hamstrings feel extra tight and I don’t want to walk to class, but I have a new perspective now.

On Twitter, every Wednesday evening, there’s an online discussion/support group using the hashtag, #CPChatNow. I find such encouragement and strength from these people who struggle with the same things I do. We often discuss problems or make lighthearted jokes about what it’s like living with cerebral palsy. For example, there was one instance where all of us confirmed that it’s a victory in carrying a hot bowl of soup to a table without sloshing it on your fingers. These are the days when I’m most content to have cerebral palsy. I can relate to other people, and this is such a blessing. This online discussion has given me a platform to raise awareness, and I feel myself becoming more of an advocate as I deal with my CP in adulthood.

I’m so thankful for my cerebral palsy because without it, I would have never made the connections I have. There are perks, also. The accessible parking and quick passes at Disney World are awesome. It’s interesting to think about what my life would have been like if I didn’t have CP. I would probably be a dancer, but I stopped thinking like this a few years ago. I can still be a dancer, even with my disability. I can dance in the grocery store, in the shower, on stage. I can dance anywhere because my cerebral palsy can’t limit me in that way. I’m a person with agency; the only thing that can limit me is my self-consciousness. Besides, I’ve found a passion in reading and writing. It’s soothing to write about my experience with cerebral palsy. I just want to encourage others: people with CP, relatives and/or caregivers. I’m in college, living a full life with my disability.

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Is That You, Undiagnosed Disability? Because All I See is Joy.

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Hey you, developmental disability of unknown origin but fits the profile of Angelman syndrome, which one in this photo is you? All I see is joy.

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Joy — that term that’s not the same as happiness. Happiness is momentary; joy is sustained contentment, even in the face of adversity.

Hey you, 28 years of developmental disability, your lack of spoken words or lack of mobility didn’t rob this family of our joy. You thought you had us with the sleepless nights, the illnesses, my son’s inability to understand beyond what a toddler comprehends… Ha! You can’t take our joy. Our joy goes way deeper than the roadblocks and detours you threw at us.

Our son, Matt, is evidence of our joy. We believe Matt was made by God, and God is our source of joy. We have gained nothing from you, developmental disability, but we gained everything from watching God use Matt as a compass to guide us to joy. Matt laughs when we want to cry. He’s content, even when his choices and desires are not fulfilled. He’s kind, even when someone might not show him kindness. He’s full of hope each day. He displays the fruits of the spirit effortlessly: love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control. His example teaches others. He models for me, his dad, his brothers and all who come in contact with him. He models the joy of living a life full of grace and sustained contentment.

So, developmental disability, you didn’t take anything from us. Matt came to us in your packaging, but we continue to experience his gift of joy as each year goes by.

We choose God, we choose joy and we choose Matt!

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For all of March, 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 [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Why Cystic Fibrosis Can’t Ignore ‘Dr. Mommy’

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Dear cystic fibrosis (CF),

We’ve met. Because of you I’ve earned the title of one of those crazy CF mamas, but what does that mean? That means I was forced into the role of a misfit caregiver with a passion for getting it right. I quickly blossomed into a rebel Dr. Mommy who questions doctors’ orders and evaluates the outcomes.

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Some of your wisest scholars may call me a troublemaker, but I’m just a CF Mama who sees things differently.

I’ve never been fond of negativity or life limitations, but because of you, nothing trumps lung health. When it comes to lung health I have no respect for your status quo. Dr. Mommy will always strive for more.

You can agree or disagree with me, glorify or vilify me, but the only thing you can’t do is ignore me.

I cannot fail. While you may see me as one of the crazy ones, many see strength. The Dr. Mommies of this world who are crazy enough to think they can change the path of cystic fibrosis are usually the ones who do.

My name is Dr. Mommy, and I am a CF Grizzly Mama — Hear me roar.

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For all of March, 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 [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Why I Cut My Daughter Some Slack When She Gets Short With Others

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To my daughter,

The day we received  your diagnosis I told myself and everyone around us that “this is not an excuse for her!” I told them the expectations for you will be the same as those we had for your brother, and we’d expect you to do your best to reach them.

And you have.

You’re an amazing girl who quite frankly doesn’t get enough credit.

After this past surgery you proved to me how amazingly strong you are. Watching you hauled out of bed and forced to stand for X-rays two days after having your spine fused showed me what a warrior you are. You didn’t cry or complain, not even a whimper! Then, several minutes later, while waiting in the hallway in your bed to be wheeled back to your room, you complimented a woman on her makeup. I can’t imagine the physical pain you were in, and yet you forced a smile and a compliment to make someone else feel good. You’re amazing!

It’s been quite a journey through recovery, and you’ve taken it all in stride. Only six short weeks later, you’re back to riding the bus and making it through a full day of school.

It’s easy for others to forget what you just endured because you seem absolutely fine.  So when I got a call the past two days from the school that you were “short” with your  words, I reminded them you’re still healing and might need them to be more understanding and flexible. And then, when I got an email yesterday that the same thing had occurred, I let it go.

When your cried to me the past two nights about this, I didn’t let you see my heart break. I continued on with my no excuses rule, same standards, blah blah blah… I never told you I asked the school to be more understanding. Instead, I told you that you were wrong, you can’t act like, blah, blah, blah!

The truth is, I spent most of the night awake thinking about this.

When they contacted me today for the third day in a row, and I saw the phone number on the caller ID, my blood began to boil. Instead they were calling to tell me some kids in the cafeteria made you cry.

That was my breaking point. I hung up the phone and stood in the kitchen and cried. I’m still crying as I type. My heart breaks for you. How can anyone not see how strong, brave, kind and amazing you are?

My sweet girl, you’re a warrior! If you’re short with your words, so be it. I would be too if I was enduring what you’ve been going through. Sometimes you deserve an excuse. You deserve to hear you’ve been brave. You deserve to hear you’re a trooper.

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On a regular day you have to work twice as hard as everyone else just to get through the day, and even when you’re not six weeks post-op, there’s an overwhelming amount of doctors appointments. So yeah – guess what? Some days you deserve to be cut some slack.

I can’t wait to see you when you get home today. I can’t wait to wrap my arms around you and tell you it will all be OK.

I will remind myself in the future that what you have to go through is far different and often much harder than what most kids your age do and that sometimes you need a break, an excuse and for me to let you know I understand.

Thank you for being the warrior you are. Thank you for always trying your hardest. Thank you for always having a smile on your face and giving the world’s best hugs. Thank you, my sweet girl, for being exactly who you are and allowing me the honor of being your mom.

Love,

Mom

This post originally appeared on Successful, Exceptional Education.

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Apraxia, You’ve Stolen My Son’s Words, But You Can’t Steal Mine

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Hello, Apraxia.

Caught you off guard, didn’t I? You’ve stolen my son’s words, but you can’t steal mine. He goes to therapy three times and week and conquers your overwhelming, destructive word-stealing ways. He speaks his own lingo, and though it’s nothing you haven’t heard, his loss of words challenges him daily. It’s a challenge he’s accepted and is ready to face. Apraxia, you got nothing on this little guy.

At first you scared us with countless specialist and lots of the unknown. Although apraxia isn’t incurable, it’s definitely hard on the soul. You see, when other kids are playing and talking to each other, you steal the joy and leave my son silent. When he tries to talk, the other kids don’t understand, so he quickly realizes the only safe people to talk to are adults who will listen even if they don’t process a word.

Apraxia, you’ve changed the way we live. We can’t just ask what you want; we have to figure it out! But don’t worry — we’ve embraced our daily game of charades and added more hugs then you can imagine.

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Apraxia, you have challenged me as a mother and made me slow down and enjoy every sound. For that, Apraxia, I thank you.

Thank you for making me record every word and enjoy every hug, even if it’s a last-ditch desperation to get his little mind known. Thank you for forcing me to slow down and listen because this might be the time he says something.

Apraxia, you will soon be a distant reminder of where we began and how far we’ve gone; but for now, you’re part of our family, and we’re better because of it.

Thanks, Apraxia. But we can’t wait to say so long.

For all of March, 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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