Category Archives: Disabilities

An Aching Heart for a Disabled Sister

In what seemed like a rare event, both kids were sleeping at the same time, and we were at my parent’s house.

As my mom was available to babysit, I grabbed the opportunity to pick up my sister from her day program and to take her out to get her hair cut.

As I pulled into the parking lot of her day program at 2 pm sharp, through the barely cracked window of my car I heard a distinctive voice, and one I was all too familiar with: “Emmmmy!” My sister screeched my name. I scanned the parking lot and just outside the building, but couldn’t see my sister anywhere. I chuckled to myself as I realized that she had spotted and called out to me from inside the building. I smiled. She sounded like she was in a good mood, and that was of utmost importance before going for a hair cut.

After getting scolded by the worker for running out of the building, she hurriedly propelled herself into the passenger seat of my car. As she set down her lunch box and buckled her seat belt, she called out to the worker “I love you! Good weekend! Bye!” And we were off. Comments were exchanged about our day. She reported that she had watched “Bugs Bunny” at her day program, and I giggled at the thought. I reported that Josh and Rachel were with Mom, taking naps. She reported that her leg hurt. And then she asked when we would be leaving my parent’s house.

“Tomorrow” I said, sort of tentatively, as how long we were staying at my parents’ was always a hot topic with her. “We’re going to spend the night tonight! Won’t that be fun?”

Her mood tanked immediately. I had been carefully navigating our conversation to maintain her good mood as long as possible. I should have dodged her last question. She became agitated. She crossed her arms and stomped her foot. “NO Emmy! Don’t like it!” I was internally rolling my eyes. I knew she hated sharing our parent’s house with us –that is, her siblings and their families. I knew she hated all the extra noise that a toddler and a baby brought into her quiet environment. But she would have to get over it. After all, she wasn’t an only child. We couldn’t stay away forever.

Janny,” I said in the kindest voice I could muster, “It’ll be fun! It’ll be just like Christmas when we always stay overnight!”

I made a mental wager that my optimism might positively influence her, but I lost. Her agitation spiked and she lost all control. “NOOO EMMY! HATE IT! She screamed at the top of her lungs and hit the dashboard and door with her arms. She continued to scream and throw herself around as much as one could while being restrained by a seat belt. Thank goodness for seat belts.

I was beginning to doubt we could pull off a hair cut after all. It’s always a touch and go experience, although the last five or six haircuts had gone off without a hitch. But today the task seemed more precarious than usual. Her outburst was pretty extreme. “Fine Janny,” I began to warn her. “If you can’t pull it together, then we’re just going to have to go home.”

She immediately burst into tears while simultaneously continuing to scream at me. I handed her a tissue. “Janny. Calm down. It’s okay. But you can’t talk to me like that. You need to choose to be kind, even when you feel like being nasty. Because you can. You always have a choice.”

“I CAN’T EMMY! I CAN’T!… I CAN’T!” Her anger exploded once again. She was reaching the point in which she could quickly escalate into becoming dangerous. She had at times tried to grab my steering wheel, transmission, or clutch. Or, escape the moving car we were riding in (thanks to the child lock button that had never been an issue).

I felt defeated “Have it your way then, Janny. We’re going home right now.” I intentionally drove past the local Supercuts as she continued to cry. But then she dried up her tears and said “Okay Emmy. Okay, okay okay. Better now. Please, hair cut?”

“Can you tell me you’re sorry?” I asked.

“I’m sorry.”

“Alright, I’ll turn around, but no more yelling, screaming or crying. You need to be nice.”

I made a u-turn at the next light, silently wondering if giving her another chance was going to be a big mistake.  We pulled up at the Supercuts building and parked. I began coaching her as we got out of the car. “Okay Janny. When we go inside, don’t run past the person at the cashier and back to where people are getting their hair cut. Sit down right away until they call your name.”

“Okay Emmy.”

We walked inside and I was relieved to see that there was only one other person getting a hair cut, an older man. And there were no people sitting in the waiting area. The less people there were, the better she would do. She sat down as I had instructed her and I felt encouraged. It was always a huge temptation for her to want to run past the cashier and give some unknowing hairdresser a huge bear hug from behind while they happened to wielding sharp scissors.

A young, friendly looking hairdresser called Janny’s name, and we started to walk back toward the hairdresser’s chair. Suddenly something shifted in Janny’s demeanor, and not for the better. I immediately began coaching her. “Here Janny, come with me! This is where you’ll sit!” I pointed to the chair. I breathed a sigh of relief when she cautiously sat down.

I never knew if it was the chair, or walking to the chair, or meeting a new hairdresser, or what. But getting Janny into that chair was always a little difficult. Sometimes she had no qualms about it.

Today was different. Before the hairdresser could even get a word in to discuss hair cuts, Janny suddenly became belligerent in a way I hadn’t seen before. “NOOO!” She screamed. “DON’T TOUCH ME!” She yelled. At that moment you wouldn’t have guessed that she had been begging my mom to have me take her for a hair cut for the past 3 weeks. She stomped her feet repeatedly and scowled at me from behind crossed arms. I internally gasped when she proceeded to hold up her fists, as if she were going to deliver a punch, to both the little young hairdresser and to me. “That’s new,” I thought, wondering where on earth she had learned that behavior from. That warranted some serious intervention: “Janny, if you don’t cut it out right now, I threatened in the calmest voice I could find, “then we’re going to leave immediately.”

She responded by slapping the hairdresser’s hand, which was touching her chair.

That was the last straw. I remained calm, but let her know she had lost her chance for a hair cut. “Out of the chair, Janny. Right now. We’re leaving. Get into the car.” Of course she struggled and resisted and refused to go willingly.

I hated these scenes. I avoided them like the plague. But there was no avoiding it now. She screamed at the top of her lungs as the other customer and hairdresser looked at us in horror. “NOOOOOO! DON’T WANT TO EMMY!!!” She stood up and I moved behind her to ensure that she would not attempt to resist me further. I didn’t want to play a cat and mouse game with her as she ran around the shop, all the while yelling at me, bumping into other people, and potentially throwing various salon items. I desperately just wanted to leave. As she screamed her way out of the building, I turned my head and quickly told the hairdresser that I was sorry and that maybe we’d try again on another day. Thankfully she looked sympathetic and graciously said “It’s okay!”

We exited the building, but then it got worse. Janny wouldn’t budge and screamed with everything inside her: “EMMY I HATE YOU!!!” I’m pretty sure you could have heard her in the next town over. I wasn’t putting up with her shenanigans anymore. But I would remain calm and keep my voice down. “Get into the car. Right NOW. You may NOT talk to me like that.”

Another person was getting out of their car next to mine and I prayed that Janny would just choose to get into my car. Otherwise it would be more screaming from her. And I hated having bystanders around, who would no doubt be wondering if they needed to call 911, or CPS, or just feel disturbed for the rest of the day. Thankfully, Janny got into the car and slammed the door with gusto.

As we left the parking lot, her rage broke and she began to sob. “Emmy mean! Emmy rude!” She protested, but more weakly this time through her tears. I assured her that I had been anything but rude. She continued to sob. The tension I had been feeling also lessened. I looked over and saw her grown-out bangs, which were too long now and drooping into her eyes. I began to think about all the days before this one that she had pestered my mom, asking “Emmy take me hair cut?” And all the times she had lost the very thing she had looked forward to because of her often rotten behavior.

And my heart began to ache for her.

Because I knew that she either could not or would not control her rage and anger.

And yet, I still couldn’t reward it.

And so the paradox that she had lived in for years continued. Of lashing out at those she loves most. Of sabotaging the most exciting event of her week. Of hurting herself when she was mad at another. Of choosing to respond in a behavior that just got her in more trouble. I felt helpless and sad about a situation that so many had sought to change over the years but who’s efforts had produced little or no progress.

Chris Tomlin’s song “Jesus Loves Me” came on the radio and I heard the words:

“I stepped out of the dark, and into the light, when He called my name.
I couldn’t run, couldn’t run from His presence
I couldn’t run, couldn’t run from His arms.”

And in that moment, I was immediately transfixed by God’s love for Janny. Some day, when the Lord calls her home, she will run into His presence and into His arms, and there she will remain for as long as she wants. She will be perfectly loved. There will be no more anger or screaming or rage. She will be complete, and “disabled” will no longer signify her. She will have perfect peace.

I wept as I thought about this. My efforts to conceal my tears failed, but Janny, ever so compassionate, started to cry again and wanted to hold my hand. It was as if the fiasco at Supercuts had never happened. After a little while we both dried up our tears and I turned up the radio.

Despite the trauma of the past hour, somehow we both enjoyed the rest of the drive home.

There has been little in my sister’s behavior that has changed over the years. And there may be little that changes in the future. She may even worsen over time. But this is not the end, the finale. As hard as things are, there are always mercies — like God giving me a little glimpse into eternity when I was tempted to despair about this finite season with my sister. We will continue to pray and ask God for healing of this beloved sister of mine. But if He chooses not to, we will not lose hope.

1 Peter 1:3-9 (ESV)

“Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, and into an inheritance that can never perish, spoil or fade. This inheritance is kept in heaven for you, who through faith are shielded by God’s power until the coming of the salvation that is ready to be revealed in the last time. In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed. Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, for you are receiving the end result of your faith, the salvation of your souls.”

Taken in 2012, just after a successful hair cutting outting.

Taken in 2013, just after a successful hair cutting outing.

 

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Seeing God Through Disabilities

I stopped at the stoplight of a busy intersection on my way home from picking up some bottles for Josh. I was on an unfamiliar road and noticed a high school on my left across the street on the corner. I looked at the clock — it was 3 pm, and school was out for the day. The light did not change and as I looked around, feeling slightly bored, I saw a girl, probably 15 or so, walking across the street with a noticeable limp. She had a pink ball cap pulled over her mid-length hair, and she wore loose cotton capris and a colorful sweatshirt. She happily clutched her water bottle that had a hard plastic straw inside. With a huge smile on her face, she walked along with her headphones in and her ipod playing. I knew immediately that she was unique, made incredibly special by God’s design, existing in a world of her own.

Across the intersection I watched a throng of young teenagers start to cross the street. Groups of girls talking among themselves, with long hair, perfect makeup, and short-shorts. Packs of young men either horsing around or staring at their shoes as they walked forward. You could almost feel their insecurity, their struggle to find their place in this life.

I glanced further to my right and watched the gal with the ball cap limping along again. There was so much brightness in her expression. Just behind her were 30 or so teens, also crossing the street, most looking tense, so filled with angst. And yet this girl exuded peace.

I was reminded of my own sister, who resembled this young woman in many ways, right down to the ball cap, ipod, capris and even the water bottle. She also can found be listening to music on any given day, happily existing in her own little world; ignorant of the many uncertainties of life surrounding her.

Over the years I’ve noticed how people have kindly expressed sorrow to me that my sister is disabled with Trisomy 14. And it’s always been kindly received, because caring for my sister IS really hard for my parents. Some days, the struggle seems too much for all of us. But there is always grace to be found in the midst of difficulty. Yesterday, when I saw this girl walking along, it struck me not only how well taken care of she was, but also how she seemed to be completely bypassing the angst-filled years of high school. And the same has been true for my little sister. She has little to no stressors, except for the occasional stomachache or a cold. She lives almost completely without fear or worry. It struck me that I ought to be living in the same way, because I don’t need to be trying to carry the weight of this world on my shoulders. Christ is there to shoulder my burdens, to carry my load. He does this willingly.

“Cast your burden on the Lord, and He will sustain you;

He will never permit the righteous to be moved.” Psalm 55:22

I didn’t come to write on my blog this morning with any sort of agenda. I saw this young lady yesterday, and something deep inside resonated with me to the point of bringing tears to my eyes. I saw a person, so different from the rest, yet so perfectly made in God’s image. So loved by God. I saw peace and contentment. And I thought of my own sister, who can barely grasp the concept of who God is — but who is also very much loved by her Creator. It shatters me to hear others say that disabled people are a “burden on society.” I think the people who say this have not had their own burdens lifted by the Lord. Disabled people are such a gift to our society. We can learn so much from people not tightly bound to social norms and peer pressure. And we can learn from their love. My sister will often screech “Emmy!” with pure joy and excitement and run down my parent’s driveway to greet me when I visit. She often forgets that she will fall and injure herself on the sloping gravel driveway– and would continue to do so– if my parents did not restrain her. It reminds me of the father of the prodigal son, running down the lane to greet his wayward son who has finally returned home.

And so our heavenly Father greets us, with joy and rejoicing, when we turn from the evil of this world and ask Him to carry our burdens.

Today I want to see others as God sees them. I want to love without inhibition and release my burdens to the Lord. And today I’m thanking God for this special sister of mine and all that she’s unknowingly taught me.

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My sister holding Josh for the first time (with my mom adding a little assistance!)

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Our Son Has Arrived!

He’s here!! Joshua Michael was born ten days ago weighing in at 6 pounds 13 ounces, and measuring 19 1/4 inches long.

Here’s a photo of him shortly after he was born:

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We are totally in love with this little guy. So far he’s really mellow and easy going (we’ll see how long that lasts!). He eats well and sleeps well. He never screams. He loves to look around and watch what’s going on nearby. We are the typical first time “nervous” parents but this has been such a special, wonderful time with our new son. I am so thankful to God for placing him in our care.

Here’s some more pictures…

Getting measurements taken. Notice the gigantic size 1 diaper on him?

Getting measurements taken. Notice the gigantic size 1 diaper on him?

Still at the hospital here-- in the postpartum room. Lying on mommy's chest. :)

Still at the hospital here– in the postpartum room. Lying on mommy’s chest. 🙂

Finally home from the hospital here.

Finally home from the hospital here.

He's such a good sleeper. We are so grateful for that!

He’s such a good sleeper. We are so grateful for that!

Even though he is a good sleeper, I’ve found that writing is a lot harder for me when I’m only getting sleep in 1-3 hour chunks at night time. All this is to say is that I DO want to write about my birth story (which was no picnic– 32 hours of hard labor including everything from allergic reactions, to epidurals coming out, to me spiking fevers). But so much happened during that time and I think I’m going to need some time to get organized, coherent thoughts written out. It took my mom and husband all sitting down to put our heads together to accurately remember everything that happened. So many people were praying for me and even though it was the hardest things I’ve ever done, I saw the Lord working miracles left and right! So, I really want to make sure it all gets included, even if it’s all kind of a blur to me now.

In the meantime we’re enjoying every moment with our new baby!

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Unique & Special: A Saga About Sisters, Part 2

You may have read one of my previous posts, which pertains to my older sister but also to sisterhood in general. With all three of my sisters in the same state this past year, the gift of having sisters has been on my mind much these days. Just like marriage or having children, you can see the beauty of a God-given thing like family when all involved are striving to walk with Jesus. Oh, what a difference does that make! Sin easy entangles, but when sin is rejected consistently, relationships on this Earth can be so wonderful. Such has been the case in the relationships I have with my sisters.

Which brings me to my second youngest sister — my sister who will never read this, who will never understand exactly what the words on this page mean, because she was born with an extremely rare genetic disorder, Trisomy 14.

Many people often ask me, “So what does a disorder like Trisomy 14 actually look like?”

If I could sum it up briefly, I would say that cognitively she ranges anywhere from a 2 year old to a first grader. She is extremely sensitive to light and sound. Physically, most babies born with Trisomy 14 have numerous cardiac problems but she was thankfully spared from this, although whenever she has let me listen to her heart rhythm with my stethoscope I have always noticed that her heart rate was a little too high (borderline tachycardic). Stature wise, she’s pretty short and one half of her body is longer/bigger than the other side. The difference in leg length (which was about 3 inches) caused a major problem until she had surgery on the knee of her longer side to stop the growth on that side. If you have the time or inclination, you can read a little bit more about my sister’s genetic disorder here.

Circa 1987.

Circa 1987. I think somebody must have fallen and bonked her nose!

My sister is incredibly unique — and a lot of people, even people who have known her for many years, are often baffled by her. On the outside she appears to be capable of acting somewhat mature: She may ask you how you’re feeling, or why you look tired. She may notice that you got new shoes, or that you got a haircut. She might tell you that her bus broke down on the way home from her adult day program. She’ll notice if you sound like you’re sick. She can keep up a semi-coherent conversation with you. But then she may suddenly turn into a demanding two year old when she sees that you’re touching her ipod or if she thinks you’re being mean to her (which is something that she frequently misinterprets). She might very well scream at you, and if you’re thinking she’s much more mature than that, it can be quite shocking. Lastly, if you interfere with her schedule, watch out! She is a lover of routine, and thrives in knowing exactly what to expect. Change is hard for her.

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My relationship with my sister is pretty one-sided much of the time. And yet I love her so much. I give the Lord credit for the deep love I have for this sister of mine. She is who she is– wonderful, difficult, unpredictable, gregarious, loving, easily upset… and I accept her as such. I don’t let her get her way all the time if I can help it. She and I have always been close, since we were really little. She was easier-going back then and we always had a great time playing together (which translates to me constantly picking her up and swinging her around!)

What a cutie! She's 3 years old, and still not walking.

What a cutie! She’s 3 years old here. Still learning to walk.

That being said, I’m not her primary caretaker. My parents are. I am not the one to help her shower, or to make her meals, or to tell her for the millionth time to stop hugging strangers. As beautiful and as unique as she is, I also see the constant need for correction and instruction wearing my parents down. They’ve been at it for 28 years with her. It’s a battle knowing which things to just completely avoid (such as taking her to a really busy or loud event that might overstimulate her). And… if you can imagine parenting your two year old– year after year, with little improvement or growth, you can just imagine the weariness my parents experience. And yet I see them continue to pursue what is best for her, even though they are often exhausted. My parents’ perseverance  impresses me. Their task is not easy, and it is not short. But they press on.

Being a goofball.

Being a goofball.

There are incredibly hard days which turn into hard weeks and even months. Weariness aside, my mom has often told me that my little sister has been very, very good for our family. She’s absolutely right. My sister is an extraordinary, most wonderful gem. Her unique situation has caused all of us family members to grow in unexpected ways. We are often pushed to our limits by her. We are brought more quickly to joy and laughter by her. And lastly, we are hugged and loved more by her than anyone else! She will make us want to cry in frustration and simultaneously shake our heads in amusement, and we love her for it.

Lastly, if you have a disabled child, you probably understand and face many of the same challenges that my family faces. You know what it’s like to not be able to always go to church or to take a family vacation. You get it when I say that one little change in your child’s routine wrecks the entire day. But it is for those of you who have never known what’s it’s like to live with or parent a disabled child that I write this blog post. To shed some light and to facilitate understanding. We are occasionally met with disapproving glances from others who know nothing of the situation, and it’s hard given the daily grind of parenting a child who will never fly from the nest. Please, I beg of you, give grace to those families you know with disabled children– to the mother who’s disabled son just ran up to you in the grocery store and invaded your personal space, or to the girl who looks like she’s twenty-something but is throwing a temper tantrum at Disneyland for no apparent reason. It is more challenging and wearying than what often meets the eye.

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Pain

Ah, pain.

I’ve had a lot of opportunities in my life to become better at dealing with chronic pain. But I just haven’t. It gets me every single time. I get to a breaking point, a time of despair. I pray, I cry, I ask for healing. Sometimes I am healed and sometimes I must keep living with it.

I feel foolish for saying this, but it never occurred to me that I’d be dealing with chronic pain while pregnant. Not even a remote thought went that direction. What I actually thought was “for once I’ll be pain free, since my endometriosis will be in remission!” (HA! I’m laughing right now.) For three straight weeks I have been dealing with right lower abdominal pain. I don’t have a clue what it is. Maybe adhesions wrapping around my bowel or endometriosis? I don’t think my doctor has a clue, either, other than that the “baby is squishing everything down there.” All I know is, it’s there and it makes me miserable most days.

I find my character tested again and again through chronic pain — and for the last three weeks I find I am facing a new test. How will I respond to this pain? For the things that I am fearful of (first, that it won’t ever go away, and second, that it could be something serious) — what will I do with those fears? Will I look to the Lord and say “Your will be done?” or will I become depressed and feel sorry for myself?

I have great admiration for people who have looked chronic pain or lifelong disabilities in the face and have learned to find joy and contentment in the Lord despite it. Joni Erickson Tada is one of those people. And there is a blog I follow (www.mundanefaithfulness.com) about a mother of 4 children who recently went through a horrific time of breast cancer treatment and is once again facing more insidious cancer. You would think the idea of leaving 4 young children behind would literally cripple her, but it’s not, because she’s not letting that happen. When the fears and sorrow start to creep in, she’s immediately putting those same thoughts to death. And that’s how I want to be when I am facing chronic pain and the fear of living with it daily, because I have learned that despair and fear can be more insidious than the cancer or chronic pain itself. I want to put those life-sucking thoughts to death, and trust the Lord to give me grace for each day.

Today we went to church and as we sang songs with words of truth and praise for our Savior, tears of sweet relief slid down my face. Ah, to get my focus off my pain and onto my Lord — this was truly the best medicine for my heart and my soul. And not only that, but then our pastor had those in the congregation who were struggling with pain to stand up because he wanted to pray over us. My husband nudged me (his way of saying “stand up!”) and I was prayed for. It was such a wonderful time– my burden being lifted off my shoulders and placed on the One who lovingly carries it for me.

Have you lived with chronic pain? What helps you keep your perspective and focus on the Lord, and not on your situation?

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Adventure… Or Disaster?

My husband and I ate dinner last night at Ikea with my folks and my little sister, Janny. It turns out that Ikea, of all places, is Janny’s favorite place to eat dinner. She was in a relatively good mood last night, especially when she got to eat Ikea’s beloved chocolate cake for dessert. Janny will do anything to be able to eat chocolate cake, which is always a bonus for my mom (who will sometimes use that to leverage good behavior from her). It works most of the time, and last night was no exception. However, going places with Janny is always a risk. You never know when she might throw a tantrum over the smallest thing or say something inappropriate to someone. By inappropriate, I mean patting the belly of large woman in her 60’s, and asking “Baby?” Some might laugh at this assumption, but I assure you that this particular woman did not. She’s learned not to pat people’s bellies over the years, but other bad habits she’s picked up have just stuck. I’ve learned over the years that going places with Janny can sometimes be an adventure, other times a complete disaster.

Janny can never go anywhere without talking to at least five strangers, and last night was another example of that. As we were finishing up our meal, the two of us left the table to use the restroom. As we were returning, there was a woman walking with a significant limp in front of us. My mind started to move into gear as I realized that Janny would try to say something to the woman. I’ve learned from prior experiences that she always wants to talk to people who walked, looked or talked differently. I immediately tried to distract Janny and to walk the opposite direction as I knew she would make a bee-line for the woman. It turned out I was too slow. Janny raced off and when she reached her, she put her hand on the woman’s shoulder. “Help you?” She asked the woman. The woman stopped and looked at her. It was obvious the woman was having a little trouble with walking but she was there with her family and didn’t really need “help.” I butted in, as usual, to try to smooth the situation over. I never knew how people were going to react. Some people feel blessed by Janny’s attempts to “help” them, others feel insulted. “Come on, Janny, let’s go!” I said as I tugged on her arm, prying her away from the lady. By then, the woman seemed to have realized that this short, red headed girl who also walked with a slight limp was trying to “help her.” She told Janny, “Oh no, I’m fine sweetie. I just had back surgery.” I sighed a sigh of relief. We had made it without offending her. Janny wanted to say more but I quickly escorted her back to our table.

I began thinking about Janny’s perpetual need to talk to people who walk, talk, or look differently. I’ve always wondered if she knew that she was different than most people, and if she did, to what extent? She’s never really shown that she’s aware of her disabilities. She’s never complained about having to ride a special bus to her special school, or about the special shoes she wears which are different sizes. She doesn’t complain that my mom buys all her clothes for her or that she can’t do most of the things that other people can do. She’s never asked to drive the car or to cook dinner.

And yet, she immediately notices when another person is “different.” Not only does she notice, but there is a sense of belonging she displays with those who aren’t your average run-of-the-mill people. She always wants to give these people a hug or a pat on the shoulder. Or both. And it makes me think that she does understand that she is different from most people.

I don’t really know for sure. But the beauty is, whether she understands fully or not, she doesn’t seem to care a whole lot. Don’t get me wrong, she’s an expert at displaying her will, just as any young child is. There have been times when she’s thrown a fit because she wanted to be independent when cutting up her food or because my mom said she couldn’t have chocolate milk with dinner that night. But for the most part, she’s just Janny, a special girl who lives a unique and special life, and who wants desperately to talk with the woman in the wheelchair or with the man with the cast on his arm. And I love her for not ignoring these people, whether they need help or not. Sometimes it’s an adventure, and sometimes it’s a disaster.

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The Large Wooden Bat

Memories.

Good or bad, they have the ability to influence your direction in life, your personality, and your character. Memories can be delightful, warm and tender. Or they can be hurtful, embarrassing, or any other variety of emotions on the list.

One of my childhood memories is shameful to recall. It’s a memory I think about often, as it involves a person I love very much. Given her disability, she does not remember the incident at all. But I remember it clearly.

There are a few people on this planet who touch my heart deep down. One of those people is my little sister, Janny. She was born with a chromosomal disorder, trisomy 14. Her doctors didn’t know what cognitive or developmental delays she might have growing up, because trimsomy 14 was relatively unheard of at the time of her birth. And so my parents started out on an adventure of raising a little red-headed infant who appeared to be full of personality, but was very slow to nurse, crawl, speak, and eventually walk.

Janny was born three years after me. As we grew older, and she began to go to a special school for children with disabilities, a new sense of responsibility for her protection grew in me. It was obvious that she was vulnerable, and I didn’t like that. Occasionally I found other school kids making fun of her, and although she didn’t understand what they were saying, she understood their intent. I became good at making sure they didn’t bother her again. After school and on weekends, we would play together. She was little and loved it when I would swing her around or rest her on my feet as if she were an airplane. She wasn’t like my other sisters and I, but she was special and I loved her.

Dad and Janny, about a year before this memory.

Which is why I feel compelled to write about this shameful memory of mine. I was 9. It was my first season of Bobbysox softball. My dad had bought me this huge wooden bat that was 35 inches long. (I think they still have it.) It was almost as tall as me, but it was the only bat we had. One day I was working on my batting in the front yard. I loved sports at the time, and was very motivated to be a better softball player. I had a big, hard softball in one hand and the giant bat in the other. I was standing in the driveway, facing the yard parallel to my parent’s house. Janny and my dad were both outside, working in the garage. I looked around and noticed that they weren’t too close to where I was batting. I threw the ball in the air and swung. Missed. The ball fell to the ground. I picked the ball up. This time I threw the ball higher and watched as the ball came closer to me. I clutched the base of the bat tightly with both hands and prepared for a grand slam. I swung with all my might in order to give that heavy wooden bat some velocity, but I didn’t hit the ball. Instead, I hit something else. I turned sharply as I heard a loud shriek and a desperate cry. Behind me, Janny was doubled over, wailing while holding her face. In horror I gasped as I realized the damage I had caused her. Dad came rushing over and saw the huge bat-shaped mark on her cheekbone. “Mary!” My dad yelled urgently toward the house where my mother was. She appeared at the door and came running outside when she saw Janny. And before I knew it, they had put my sobbing sister in their Oldsmobile station wagon and rushed off for the emergency room.

As what I had done to my poor sister sunk in, it shames me to say that I was only thinking of my punishment. Sure, it had been an accident, but I should have been more careful in choosing my place to practice batting. I recalled my mother’s words to me earlier that day, “Emily, be careful where you practice your batting!” It overwhelmed me to think that I, Janny’s older sister, had probably managed to fracture her cheekbone. Nothing like this had ever happened in our family. I couldn’t even begin to think about what the consequences might be. I went into my room and started sobbing, not for my sister, but for my sorry old self. A little later my older sister came in the room and, true to her firstborn tendencies, reprimanded me for feeling sorry for myself. She was right, but I wasn’t listening. I was too busy feeling sorry for myself.

Hours later mom and dad arrived back home from the emergency room with Janny. She was feeling better. She still had a huge mark on her face. Mom and dad said that her cheekbone was, indeed broken. But she didn’t need any bandages on her face or splinting to keep her jaw immobilized. As I recall, mom and dad gave her some mild pain relievers for a week or two and all was well.

What’s odd is that to this day, I don’t remember if mom and dad ever punished me for fracturing my sister’s cheekbone. They might have. But it obviously didn’t stick in my brain very long. What did stick out was the fact that when I should have been protecting my sister; when I should have been only thinking about her safety and health, I was instead thinking about me.

Which is why I believe that memories, whether good or bad, often serve a purpose. Without this memory I wouldn’t be so careful about protecting my little sister today. And so as ashamed as I am to recall it, this memory has served a good purpose in my life after all.

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