author hugging her adopted son

When People Ask Why a ‘Big Boy Like That’ Is in a Stroller

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Last year our family spent five weeks in Chile completing the adoption process for our second son. He was just shy of 3 years old when we returned home with him. 

Two months after our return, I ran into an acquaintance at the grocery store. A rather bizarre but thought-provoking encounter ensued.   

She saw me pushing our son in a stroller and waved me over for a chat. She greeted me abruptly and asked me without ceremony who this child was. I introduced my new son to her and explained we had only just brought him home from Chile a couple of months ago. I optimistically assumed congratulations were in order. However, she stared at him and then at me and asked dubiously, “Your son? This is your son? You aren’t just taking care of him for someone?” 

Excellent question. It’s always best to make sure someone isn’t just trying to pass off a random child as their newly adopted one. I answered yes, he really was my son. She stared at me a moment and said, “It just always seems strange to me to see such a large child being pushed around in a stroller.” I didn’t feel the need to explain my reasons for pushing this large child in a stroller to her, so I settled for smiling politely at her, ending the conversation by wishing her a lovely day and walking away.

I notice that this stroller issue is indeed a pressing one. Occasionally people have wondered aloud as we pass why “a big boy like that” isn’t walking on his own! I especially like that generally this isn’t actually asked to me directly, just in my hearing. That will show me. Maybe it will shame me into making that large child walk on his own two legs.

author hugs her adopted son

I keep thinking I will address these people who never address me directly. I never do, though. My reasons for using a stroller are nobody’s business. I do wonder sometimes though, if just to give them a little pause, I should tell them this large boy in the stroller was so ill he was hospitalized for the first year of his life, didn’t walk until he was after 2, and in the first information we received about him, they said there was a chance he may need to spend his life in a wheelchair. (He can walk almost perfectly now, though.) It just goes to show we never know, so why bother expanding the effort of making a judgment on such an insignificant thing like an older child in a stroller?

The heart of the issue is that even if there appears to be no reason for a bigger child to be in a stroller or for an older child not to be speaking perfectly or anything else, what business is it of others? There are many things in a child’s life and about a child’s development that outsiders know nothing about. The child who is later to speak may be bilingual or even, as is the case with our son, be struggling with three languages all fighting for space in his head. That child may have been born early and had a disease that didn’t allow their vocal cords to develop fully. That big child of almost 3 may be crying with frustration daily because they can’t express their most basic needs. He may be grieving intensely the loss of his mother tongue and everything familiar. How does uninformed judgment help, and what is its purpose?

author holding her adopted son

Whether a child is biological or adopted, each child and each family has their own story. In the case of adoption, often only the adoptive parents are aware of the details of their child’s history, and even then there are many unfilled blanks. 

In a family where the child is biological, the same still holds true. Only the parents really know what challenges their child is facing.

Many things are not as simple as they seem. My hope is that adults, myself included, could learn to be more merciful. To show grace rather than judgment to other people. To realize we see and understand nothing fully.

Rather than concerning ourselves with why other people do things a certain way, we should focus on differentiating between things that matter and things that don’t.

It doesn’t matter why a big boy is being pushed around in a stroller.

What matters is: Do we love hard enough? Do we lift one another up with words of kindness, honesty and encouragement? Do we have large enough souls to show mercy and grace to those we encounter?

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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. Check out our Share Your Story page for more about our submission guidelines.

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To the Woman Who Doesn't Understand Why I Was Seen Before Her at the Emergency Room

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First of all, I want to say I hope your visit to the emergency room was as quick and as painless as possible. I hope you’re OK and are no longer ill or in pain. In other words, I hope you find yourself in the complete opposite position I’m currently in. And while I wish you well, there’s something I need to get off my chest.

Yes, you arrived at the ER waiting room before I did. And yes, you had been waiting for a long time. And yes, I was seen before you. But did you know there’s a protocol in place at ER departments? It’s something called the triage system. It’s a simple concept really: You get seen briefly when you first arrive, and a nurse decides how sick you are. Are you dying? Are you not dying? Are you there because you didn’t want to wait two days for a primary doctor’s appointment? Either way, you’ll be seen by a doctor at some point. But do you know what this system means? It means the sicker you are, the faster you’ll get seen.

While you were sat with your husband and friend with a warm cup of tea you had just received from a care assistant, I was sat next to my father and was genuinely worried for my life.

You see, I didn’t have the luxury of being able to drink a nice warm cup of tea with a biscuit like you. For the past eight days, I had been vomiting, constantly without break, which meant I didn’t drink or eat anything in more than a week. And while you were looking at a magazine, I couldn’t even keep my eyes open for more than 10 seconds at a time due to the brightness of the lights, which caused excruciating and searing pain in my head.

I know how horrible it can be to wait for hours on end in hospitals. I’ve done it plenty of times myself in my 18 years. I’ve been sick from the moment I was born, and visiting hospitals has become a normal part of my life. So I know how irritating it can be to see other people get treated before you. It’s happened to me countless times, too.

But do you know what? The fact that you’re waiting means you aren’t dying. It means you can afford to be kept waiting. It means you’re well enough to sit with your cup of tea and family for a little while longer.

woman laying in a hospital bed and hooked up to monitors

I would have preferred to wait for two hours, instead of being rushed into the ER. I was placed on a heart monitor and stuck with more needles than I could count in each arm and hand. Fluids, antibiotics and antivirals were forced through my veins so quickly that it felt like my blood was boiling. I was given chest X-ray, and the doctors told me they were worried about my heart.

When doctors start saying things like pulmonary embolism, meningitis, endocarditis and tuberculosis, you start to panic and wish you were still in the waiting room.

The point of this isn’t to make you feel bad about what you said, because at the end of the day, I don’t know you or why you ended up in the emergency room, just like you didn’t know why I was there. It could just have been something you said out of fear for yourself.

But the point is to make you think. While waiting isn’t an enjoyable experience, it most likely means you aren’t dying. And I would take that any day.

When it comes down to it, you can never really know why someone else is at the hospital at the same time as you. So the next time you end up in the ER waiting room, although I hope that doesn’t happen any time soon, please think twice before complaining, and perhaps take a moment to pray for the person being rushed through if you are so inclined. Or offer them a friendly smile to show some encouragement. Or just think, and be thankful, you aren’t that sick. Do anything you feel is appropriate, but please don’t begrudge them for being seen first. 

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. 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. Check out our Share Your Story page for more about our submission guidelines.

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The Promise a Special Needs Mom Makes to Her Child When Days Are Rough

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My Dearest Sasha,

When you were a heartbeat within my own, oh, the dreams and plans I had for you.

mom holding pregnant belly

Never in a million years did my plans involve the quiet hum of hospital pumps.

little girl in the hospital

The urgent screams of monitors intermittently interrupting our slumber as we count the hours until daylight.

hospital monitor

Counting breaths instead of moments.

little girl sleeping in the hospital

Some nights are harder than others. And tonight, I can’t help but weep for your tiny little heart. You see, I always thought those precious lips would sing with joyful laughter, not cry out in fear or pain.

daughter's lips

Those eyes… I hoped they would only see the splendor of this earth, not pour out the hurt that overflows from within.

little girl's eyelashes

Those ears… I prayed they would only hear giggles and songs of happiness that swell from your heart. I never thought they’d be hearing the monotonous alarms going off next to your bed.

little girl's ears

I always hoped those tiny little toes would feel the warm sand or cool water rushing around them. I never imagined they would know the feeling of the adhesive of a pulse oximeter squeezing tightly.

little girl's feet

I always wanted those tiny sweet hands to hold your dreams. I never for one second thought they would ever clutch starchy white sheets in pain.

mom's hands

I always thought your arms would know only warm embraces. I never — for one second — thought they would bear the scars of countless IVs.

little girls' hands

My precious sweet sunshine, you should drift off to sleep in peace. I always thought that’s how things were going to be. You deserve that.

little girl sleeping

I can’t promise you that every tomorrow will be beautiful, peaceful, gentle or merciful to you. As a matter of fact, my heart breaks a little more each and every moment that passes by because a lot of your “todays” have been pretty rough lately.

But I promise you I will never stop trying to make it so your lips sing with joyful praise; your eyes see the splendor of this earth; your ears hear the giggles and songs of happiness that swell from within your heart; your toes feel the warmth of the sand and the coolness of the ocean kissing them every chance we get; your hands reach out to hold mine in peaceful moments as we carry your dreams together; your arms would know more warm embraces; and your heart would know sweet peace. I would go to the ends of this earth for you to give you that peace.

I believe the Lord only knows why He chose you to live this life, to walk this path, to know this suffering — and I struggle with that — but I trust in Him, and I trust that He is with you, that He will never leave or forsake you, that He will mend you in the broken places and make you stronger.

Someday, my Sweet Sunshine, we will all understand why things have to be the way they are. But until then, I believe I will rest in the knowledge that our God is bigger, stronger and mightier than anything that can happen to us.

little girl in hospital bed

I love you to the moon and back,

Mom

Follow this journey on Show Your Hope.

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5 Things Any Special Needs Parent Feeling Guilty Needs to Hear

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I believe that with the birth of every child, a parent is bestowed a superhero cape. First-time parents. Fourth time parents. Parents of typically developing children. Parents of children with special needs. Some parents wear it proudly. Others never even put the cape on. But, no matter what, every parent has the chance to wear the superhero cape.

What exactly is this cape?

This is the cape that you put on when you have to leave the house in under three minutes and no one has matching socks. You wear it at the grocery store as you carry a toddler on one hip, push a shopping cart and comfort a preschooler in the midst of a meltdown. It’s what you wear when you take whatever is left in your pantry, throw it in the oven at 350 degrees for 30 minutes and turn it into a delicious… ahem… consumable casserole. The cape is what permits you to do the unimaginable, like manage to function with only two hours of sleep and a mere two cups of highly caffeinated coffee with a double shot of espresso.  

As a parent of a child with special needs, I find myself breaking out my superhero cape on a regular basis. Sometimes I wear my cape for my daughter. To help her navigate the playground when her body won’t cooperate. To carry her up flights of stairs when her muscles become too tired. To comfort her when she experiences sensory overload.

Many times, I wear the cape to “save” myself. From a depression that can be overwhelming at best. From an unknown diagnosis that ignites fear. From the daily doctor’s appointments and therapy sessions that dominate our lives.

If you are like me, dear parent, you know that sometimes, you will have to take your cape off, and this may cause tremendous guilt. Your cape will get dirty and torn. Sometimes, it will need to be mended and cleaned because, sometimes, life likes to throw you down in the mud to see if you have the will to get up again.

And when you do get up, because you will get up, I want you to remember this as you wait for your cape to be returned from the dry cleaners:

1. Be kind to yourself. It’s OK to need a break and to take your cape off for a while. Parenthood is sacrifice. It is putting everyone’s needs before your own, and parenting a child who is differently abled increases the lists of needs. Your child’s therapy and doctor’s appointments will undoubtedly take precedence over binge-watching your favorite reality TV show and finishing that book you started reading a year ago. Allow yourself to have some “you time.” A solo shopping trip to Target, a matinee movie, a spa day. OK, I know, I know, a spa day is laughable.

2. Ask for help. Although it may feel like you are alone, you are not. Whether your support system consists of family members, close friends, Facebook acquaintances or a mixture of both, don’t be afraid to express your needs to others. Asking for help is not a sign of weakness. In fact, seeking help means you are honest with yourself, know your limitations and you are proactive. You advocate for your child. Don’t be ashamed to advocate for yourself, too. 

3. Forgive yourself. One universal truth of parenthood is that you will make mistakes. Yes, even with your cape on, there will be days when you feel like a complete failure. That’s OK. No one — including your child — expects you to be perfect. Mess up. Learn from it. And move on.

4. Feel without apology. You are allowed to have good days and sad days and downright terrible days. You are allowed to cry and laugh and worry. You are allowed to feel scared and happy and helpless. And some days, you will manage to feel all of the above in a matter of seconds. You owe no explanation nor an apology for your feelings. 

5. Rock that cape. When you are ready, put your cape back on. Dance in it. Run in it. Laugh in it. Dream in it. Most importantly, love yourself in it, because nobody wears that cape quite as well as you do.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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. Check out our Share Your Story page for more about our submission guidelines.

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To the NICU Nurses Who Care for Our Babies Like They’re Your Own

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My vision of my child’s first days never involved neonatologists, isolettes and a weight measured in grams, not pounds and ounces. You weren’t in those visions, either, so in the beginning, you were a terrifying reminder of how wrong my baby’s birth has gone.

It felt like an eternity before I got to see my son. My partner, Arick, placed me carefully into a wheelchair, hung my pain pump on the IV pole and slowly wheeled me to the double doors where the tiniest, most fragile patients were housed. In his first day as a father, he became an expert at the only two things he could control: calling you every 15 minutes to check on our son, Avery, and scrubbing in and standing helplessly at his bedside.

The first time I set eyes on all of him, you came to tenderly change his diaper, which was no bigger than a packet of gum. His little corner was dim but for the single light shining down on him, illuminating your hands as you took his temperature. I’d never seen anything so delicate as either my son or your hands as you touched him.

Your words would bring me the first comfort I felt in nearly a day. He was stable and breathing 21 percent oxygen. It was you who explained to me that night what room oxygen, TPN, the vent, the six IV pumps and all of the other overwhelming things meant.

We stayed for a while. I was weak and still very sick, and you were there with us until we left. It wasn’t until I was back in my bed in my own room that I realized your only patient might have been Avery. I was stricken with the thought that you were given the unlucky job of watching, and waiting, to see if he’d survive his first night in this harsh world.

Over the course of Avery’s four-month stay, I witnessed the same thing occur before my eyes with other babies. I saw you, worn, the concern evident on your face. I watched you care for a baby like it was your own, knowing this child’s time might be coming to an end. It was in those moments that I realized how strong you were. How you can face every expectant family’s worst fears and still go on. You’ve been with families as they said goodbye to their precious child, and the next day you’re back knowing you could be doing the same thing. I believe during those four months I saw the scariest, most heart-wrenching aspects of what it means to be a NICU nurse. I probably experienced a great deal of them firsthand. But I know in my heart I’m wrong. I can’t imagine what those moments are like. I’m just glad you were there for those families. I’m just glad you were there for us.

It was you who taught us how to feed our 2-pound baby. It was a daunting task. You wrapped him tightly in two receiving blankets and showed us how to remove him from the isolette safely while he was attached to wires. You showed us how to get him to suck and how important it was to support his chin. You facilitated the thing that saved him — eating.

You taught us how to stimulate him to breathe when he forgot to and showed us how to read the monitors, especially how to recognize the false alarms. When we watched him stop breathing and almost lose his fight, you sat with us nearly all night. You were there in the darkest moments when fear outweighed all other emotions.

Then again, you were there for the good days, too. When he gained weight for the first time, you wrote on his board in big bold print: 1 pound, 5 ounces. We walked in, and the first thing we noticed was that enthusiastic note. You took his tiny footprints on his 1-month birthday and created beautiful keepsakes for us. It was you who gave us that knowing smile the first time we walked into level 2 to see our newly minted “feeder and grower.”

And it was you, every single one of you, who came to us the night he went home to say goodbye. You told me to dry my tears. You said we’d do fine. I wondered why you had so much faith in us. Now I know why you knew we’d make it. It was because everything we knew we learned from you.

Stephanie Hartman.2

You held my baby before I did. You touched his thin, red skin long before I could. You took mercy on me and let me hold him for the first time at 6 weeks old, still vented, knowing it was a burdensome task and that he might not tolerate it well. It was the only time I held him until a month later when he could be fed, and it was the single most precious moment of my life thus far.

You knew our son’s cues, his likes and dislikes. Before I knew enough to know him, you already did. Each night we walked out those doors and left a piece of ourselves there with you. We called at all hours of the night, and you never got tired of telling us he was “just chillin’.” You cared for him like you would your own. Thank you will never suffice.

When I think of Avery’s early days, you stand out because your presence was so strong. You saved our son. You were exactly what our family needed.

To the ladies and gentleman at Clear Lake Regional Medical Center NICU,

Thank you for doing what only you could do. To the families of sick babies, it means the world. It equates to their fears being eased, intimidating medical terms being understood and trust being built. You did all of this, and so much more, for my family.

When you’re tired and weary from long hours of doing something emotionally draining, think of us. And always realize how important you are. Know the difference you’re making each day and with every baby. Know the difference you made for Avery.

Follow this journey on 25 Weeks to Perfection.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. 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. Check out our Share Your Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

 

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To the Special Needs Parents Who Don’t Always See the Glass as Half Full

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Approaching the entrance of the concert hall to attend Vivaldi’s “Four Seasons,” I see a family ahead of me. A boy is walking between his parents. I notice the boy’s blond hair and height. The top of his head reaches to about mid-arm of his mother. He looks to be about 10 years old.

Evelyn Mann.2-001

Then it strikes me. That’s my son Samuel’s age. In that moment, I realize I’m living an alternative reality. My son isn’t tall. He only stands 25 inches. He isn’t walking alongside me to enjoy this performance. He’s at home with a qualified trach-trained nurse watching over him.

It’s too much of an unknown to bring him into a venue with 2,000 other music enthusiasts. I couldn’t imagine Samuel getting upset and needing to be taken out of the concert hall. Or worse yet, what if he needs medical intervention or even something as simple as suctioning? So to avoid all these unknowns and potential opportunities for things to go awry, we have a wonderful nurse caring for our son.

The performance begins and soon the soothing music washes over me as I close my eyes to hear each note. The boy I saw earlier is but a memory. That is, until much later. For days afterward, the image of the boy walking between his parents keeps popping into my head. It reminds me of what I don’t have.

Soon after Samuel was born, I remember seeing a friend’s baby at the mall. All snug in his stroller, I stared at him for a full minute. I didn’t notice his hair, his face or his cute clothes. I was simply awed at how well he breathed. That was a sign, early on, I was living an alternative reality.

Those who know me will agree that I rarely, if ever, contemplate this reality. I choose to see our glass as half full. I reflect on the miracle of my son’s life from a dire diagnosis. I bask in the joy of his smile and his laughter. I believe his life is a gift from God for which I am extremely grateful. I believe he’s a living testimony showing nothing is impossible with God.

But things tend to sneak in unawares. Like the day I realized I won’t be a grandmother. I quickly brushed the thought aside. What does it help me to see what I don’t have when what I do have is staring at me asking me to kiss his hand? So I choose to live in the moment. To cherish the time I have with the son God has given me. If I miss this precious truth, I will only see the glass half empty, and completely miss that it’s also half full.

What do I wish someone told me when I first started this journey, back in the days of the NICU, to help me see my glass as “half full”? I imagine a kindred spirit, a woman sitting me down to say:

There will be many days you find yourself focusing on the negative effects of your child’s medical diagnosis. Instead, be thankful for the good also, even if it’s the fact that your child is breathing or gives you the sweetest smile.

The hectic pace of life will threaten to take away your joy, the joy of being a mother to a miracle. Be purposeful and protect sweet times with your child. Establish a reading time even if they can’t read or comprehend. Your presence is felt. Snatch snuggles and hugs throughout the day. You’ll both benefit.

Don’t focus only on what your child can’t do. Each child’s milestones are different. Rejoice in your child’s first step, even if it’s when they are 10 years old. Or when they make a choice or say their first word. Your child may never say a word, but his smile speaks volumes. 

Believe the impossible. Doctors, nurses, staff and a whole host of others have opinions on what will happen with your child, but I believe God has the final say. My son came off the ventilator against all odds. Hope for the best even though the circumstances tell you otherwise. Even though it may seem impossible.

If you haven’t had a woman hold your hand to offer tips like these, imagine having a cup of tea with me as you read this. I share my heart and a hug with you. You are not alone. We are all in this together. There is always hope.

Follow this journey on Miracle Mann.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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. Check out our Share Your Story page for more about our submission guidelines.

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