I’ve never told anyone this before.
It’s really pretty ugly.
I hate when my heart is ugly.
And this one’s pretty big.
Ready?
You see, whenever I see a child with special needs…LOTS of special needs…you know, the kind where there’s a special wheelchair outfitted with straps and belts and headrests…the kind where mothers tend to their adult children wiping their mouths without thinking…the ones where people vacillate that awkward space between staring and NOT staring…which translates to sheer avoidance…moaning and yelling…a mother’s eyes filled with exhaustion but a head held high…
I hate seeing those families.
I hate it, hate it, hate it.
A series of physical responses take over.
I suddenly can’t seem to breathe.
It’s hot.
Wait, my palms are clammy.
Panic rises in my chest.
Tears sting my eyes.
Did I mention I can’t breathe??? No really. I can’t seem to remember how to do it right. I thought it was one of our most primitive instincts…but I’m at a loss of how to do it.
I’m about to hyperventilate at Costco right by the 62 pound boxes of oatmeal.
“Are you okay?” asks Andy.
“Yeah. I’m fine. I just don’t want to be here right now.”
Which is truth. But not for the reason he thinks. Not because I just don’t want to be in Costco on a Wednesday afternoon.
But because I want to run.
I want to scream. Not just a cute little girlish eek…but a loud, angry, furious guttural scream.
I want to cry.
Why?????!!!!
Why God?
Why did you choose HER?
Why did you choose THEM?
Why did you give me a glimpse into this world of special needs and spare me that???
Why did you not do that for her and her boy?
By what margin were we spared that life? How many more seconds of oxygen deprivation would have sent us reeling into that world?
Why does no one stare at my little girl, except to smile wide as she waves at them from her perch in the cart?
Why is it that you gave to that family the child who will forever need 24 hour care and to me a child with cerebral palsy and epilepsy…that is manageable and likely to be mostly unnoticeable as an adult? And certainly mostly unnoticeable and “invisible” now?
What the hell did I do to be so damned special?
I feel nothing but guilt. And shame. Guilt always seems to go best with a nice side of Shame.
To I say I’m in this Club…you know, the Special Needs Club…but the truth is, I have no idea.
My life may look different than some…but it doesn’t hold a candle to that mom’s life.
And I feel guilty about it.
How DARE I complain? About anything. Ever.
And I’m angry with God. For her.
And I want to walk right up to her in the middle of a bulk superstore and wrap her up in a giant hug. And I want to cry and tell her that while I have absolutely no idea…I do know a little bit. And I love her for it. I love her for loving her son and holding her head high. I love her for being stronger and much more beautiful than I could ever even pretend to be.
But I don’t do it.
Because I’m panicking remember?
So while Andy pays, I take Henry two doors over to Trader Joe’s.
And dammit, if that family doesn’t seem bent on following us in there too.
A curse word muttered under my breath.
Because it’s all about me, right?
“Mommy what’s wrong with him?”
I was shocked.
Henry has never ever ever seemed to notice before. I always assumed it was because he was used to seeing smaller children come and go with all varieties of walkers and chairs at Jill’s therapy sessions…
I assumed wrong.
I pulled us over to the side so I could squat down and talk to him. This was one of those moments. Those parenting “teaching moments” they call it. I’m beginning to hate them too.
“Son, there is NOTHING wrong with him. Nothing at all. God made him perfectly just like He made you and me and everyone else. And He makes everyone differently. There are no two people that are exactly alike. Some people are tall, some people have blonde hair, some people have dark skin. That boy can’t walk so he needs a wheelchair. But there is NOTHING WHATSOEVER wrong with him. God makes us all perfectly according to how He wants.”
At this point, the boy begins yelling indiscriminately.
Henry stares.
“But Mommy…what’s wrong with him?”
Remember how all I want is to scream and run? Yeah, that’s about 100 times worse right about now. Because I don’t know what to say. Frankly, I want to know what’s wrong with him too. Or really, what’s wrong with ME.
The boy continues to moan and yell. Henry continues to stare.
“Henry, you know how Jilly can’t walk or talk yet and she needs to go to therapy to help her? Well, God made her that way. Some people like me and you can walk easily, but some people can’t because God made them that way. That boy cannot walk so he needs his special chair. And that boy can’t talk like we can either. So you know how even though Jilly can’t talk, but she will yell at us, or giggle, or point or whatever so that we can figure out what she wants and needs? Well, that’s what that boy is doing. He can’t use words like us, but maybe he’s really happy and excited to be at the store. Maybe this is his favorite store in the whole wide world. Or maybe he saw a cereal he wants and since he can’t talk like me and you, that’s his way of telling his mommy that he wants it. God gave him a different way to communicate. There is nothing wrong with him just like there is nothing wrong with Jill.”
Henry is still staring. I’m still hot and angry. Fumbling over my words. The boy is still yelling unintelligibly. The mom is still pushing him around proudly.
This happens often.
When Andy and I are enjoying a quiet dinner out. Just us. And the older couple takes their seat with a teenage child strapped into a complicated seat carrying a Barney doll. Mama’s meal interrupted every few seconds to spoon feed her son or wipe his face or calm him back down. This is every meal. For the rest of her life. I wonder what will happen when they die. I eat a spoonful of soup. Uninterrupted.
As I walk back out into the neurologists waiting room. Children with noticeable needs. A little goofy blonde on my hip waving. The woman sitting next to her son surveys me and my little charge…our eyes meet and she nods almost almost inperceptibly. She knows. I wouldn’t be here otherwise. I smile a tight lipped smile and look away quickly. She must tend to her son now.
As I leave the therapy assessment appointment and I waltz out with my fancy double stroller out to my big SUV with leather seats and top of the line Britax carseats and my three kids that look like any other kids…and that mom…the one with poverty written across her face…who likely walked here pushing her rinky little umbrella stroller…her baby wrapped up in blankets, half hiding his face, but you can see in an instant that he struggles with severe challenges. Not once did she move her gaze from the wall across from her. I wondered if she wondered why on earth I was here at all. Surely I was lost. I didn’t belong on this side of town in a therapy clinic.
But I did. And I do.
So maybe that’s why I’m really angry.
That while I may not know the reality of their lives…I know how their hearts ache for their children. I know how they mourn. I know how they cry when no one is around. I know how they worry. How they love.
So maybe we are in the same Club after all.
Because a mama’s heart beats the same somehow. All tangled up in our children. Regardless of the extras.
Postscript: Since publishing this post, I wanted to clarify that my intention is not to suggest that I feel pity for these moms. (Although it is wrapped up in my words and I’d be lying if I said it wasn’t true to some degree). My point is to illustrate how I struggle with understanding God’s will. How I don’t understand why her and not me. Why does it look this way? Why does one family live one way and others do not? Frankly, I struggle with this in many ways. Why do my kids have access to clean water? Why were we born here, in this land of exuberant wealth, and not to famine and war? Why is it that my kids can leave half of their plate full of food and other than my frustration, there is no real consequence? Why do I complain about paying medical bills when the truth is that we have access to care and resources that the majority of the world can’t even dream of? I know I’m not supposed to understand. I’m just stubborn I guess…
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From the deepest part of your heart…..those are the best posts of all.
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Praying for you friend!
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How lovely you put into words the hatefulness/truthfullness we all feel at times. What a wonderful post to put today into perspective.
I’m that mom, the one with the disabled child that people either avoid eye contact with or look at with a sweet smile of pity. Sometimes i want to scream at the top of my lungs, DON”T BOTHER! WE”RE FINE–REALLY!! We don’t need your pity. Please don’t feel sorry for us. We are blessed. And yeah sometimes it does suck and it’s really hard. And I worry about the future. And I get sick of changing a nine-year-old’s diapers.
I think you hit on something big–fear. We are all afraid of being out of control. And the truth is, we are. And it’s a scary feeling. Someone with special needs makes us even more aware of our humanity. And I think that’s a good thing.
Life isn’t always easy or pretty–but there is beauty to be found–even in the darkness.
Bless you for your courage. I truly have no idea what it’s like. I too feel guilty because I wonder how did I get so blessed. Thank you for talking about this. I love you and this blog for your honesty.
AbsoluteMommy´s last blog post ..AbsoluteResolutions 2012
I’m that mom too – and I agree with Lisa – we’re just regular people too! And we live pretty awesome lives, even if it looks a little different than everyone elses. And, if it makes you feel better, my kids, who do have a sister who is severely affected, ask questions about other kids too – all the time, and I’m, surprised because they notice those kids, but don’t at all notice their own sister as being different at all. It’s such a refreshing thing. So I explain to them like I do to other kids who look at my daughter – it just catches me off guard!
Jenny´s last blog post ..Sledding and games
Being that I have hidden disabilities (I look normal, but I do have several medical issues), to see kids who need that much care is heartbreaking. The parents do a fantabulous job with them, but I do see the weird looks and such they get. As for why this happens, if you believe in God and that His Word is infallible, the world we live in right now is a fallen world, full of sin. One of the things that happens with a fallen world is that people are sick, in all sorts of different ways. It’s not that they themselves necessarily sinned to become that sick, it’s just a fact of a fallen world. Not an easy answer, but it is the truth.
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I agree with you Karen. It is a fallen world. Satan introduced sin, sickness and death to this place when he arrived… I think people tend to forget that there is a real enemy out there that brought all this on us. But Jesus came to undo the works of the devil, so we pray and hope put our trust in Him as the author and finisher of our faith.
Kim R´s last blog post ..Keeping it real…
let me say “we” in place of “people” because I personally forget ALL THE TIME the reality of an enemy and the reality of the God that I serve… I don’t understand the why’s of it all, I have watched a newborn pass away and watched a best friend battle cancer – UGH. But I cling to the fact the God is good and He is here. Thank you God.
Kim R´s last blog post ..Keeping it real…
If you are interested in a book about God’s sovereignty, I recommend Sharon Betters _Treasures in Darkness_. It is a heartbreaking read, warning in advance, but it is great.
I saw an interview with a Christian author recently, talking about the concept of evil in the Lord of the Rings, and how ridiculous it would seem for Frodo to be angry at Tolkein for giving him a hard journey. No, we, as the outsiders can see how Frodo’s journey and the evil in the story points to the good, and glorifies the good. Do we feel Frodo’s pain? Yes! Do we know why he would stomp his feet and refuse to go on facing all those hardships? Yes! But we also look at the story and tell Frodo to go and throw that ring into the pit! We see Tolkein’s craftsmanship glorifying the good and all things beautiful in contrast to the dark.
The truth is that us sinful humans deserve separation from God, we deserve nothing less than death. And yet, God, in his graciousness gives us abundance and life, even tainted by the sin we commit. It does look awful sometimes, but the alternative is so much worse.
(I know you probably know/believe all of this, I just got on a roll there!)
I know Jodi.
And truthfully, I could have typed that whole thing out myself (except for the LOTR part!)…I know all the right answers…and I do BELIEVE them to be true…but I still struggle to understand. I think our human minds don’t understand or grasp blatant “unfairness”…so yes, I totally get it…I just don’t always choose to remember it. ;)
That was lovely and honest and wonderful. Love the picture of Jill. When it comes down to it you are a mom. Through and through. That loves her children in their own unique perfection just as I do, and the lady in the store does.
Mari´s last blog post ..She walks in beauty…
Wow. Just totally honest and compelling. I can relate to all those thoughts you mentioned in your postscript, for sure.
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I pray that I can be that honest. Gosh, I just want to give you a hug and say I know, but I don’t know. My daughter has always been healthy, has always been able to do whatever she wants. But I do wonder though. Why. But then I remember things weren’t always so easy, I was the girl being pointed at for being pregnant in the halls of high school. We all have something. And some of our things are visible and others aren’t. either way, we all need to be compassionate to others, just like you are. Even when you don’t realize it, you are being compassionate.
much love to you ((HUGS))
Jodi´s last blog post ..Christmas ReCap
Your post just made me cry and feel emotions I don’t really understand. I am that mom. But I am also you. I have to change my 9 year old daughter’s diaper. I wipe the drool from her chin. I’m sad when her tears aren’t enough to tell me what is wrong. My back aches when I lift and carry her 55 lb body. It is hard sometimes (or a lot of times). But then I see “those” moms whose lives I think must be so much harder than mine. When we make rooutine visits to the children’s hospital I plead for God to give peace to the mommy who will never get to take her child home. I hurt for the mommy who has two kids – each with a different “syndrome.” I try not to question God (and, wow, that is hard sometimes), but instead ask him to give me and all the other special mommies out there an extra dose of strength and grace to get us through each day.
Vanessa {BloomRightHere!}´s last blog post ..Christmas 2011
Such a beautiful post. I hope I remember your words when my daughter starts asking questions. I love that you said, “Nothing is wrong with him.” Such a beautiful explanation and so true!
Heather H´s last blog post ..Life’s Lessons: Falling Behind Edition
I’m the one with the invisible disability. Until I open my mouth and you realize that my “accent” is matched with a hearing aid and sign language. Or until you realize that I don’t hear my kindergartener pressing the annoying sound effects button 50,000 times on the toy I’ve allowed him to carry in the shopping cart. Or when I don’t get out of your way when you say “excuse me” four times and finally push past.
I have to believe there’s a reason. I do. And now as a mother of a special needs kid with another invisible disability… I realize that it is far harder on mothers. So thankful He does not leave us to bear this alone, and that He has the entire picture.
I just saw your added note – and although I don’t believe in God, or God’s will or religious in any way – I understand the struggle. I know it is helpful to find perspective, even the worst of us can find someone who is “worse off” than us. But, finding and having perspective doesn’t make our problems any less real. It just maybe helps our outlook in dealing with them. But the why of it? I don’t know, and I will never understand, and I honestly don’t believe there is a “why” – it’s just the way things are. It is what it is.
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Jenny,
I just wanted to take a moment to say that I love that while we dont’ share the same beliefs, you still visit and read. I genuinely try to make this blog space a place where women can feel safe and welcome…while I make no apologies for my faith, I am encouraged by your participation even when we don’t always agree. :) Thanks for sticking around and being a part of the community!
Of course – humans always should stick together. :)
I also have an invisible handicap. Severely hearing impaired. I am frequently asked where I am from. My speech sounds like an accent from somewhere. But then I need to explain that it is a speech impediment. I used to always wonder why me? Well I still do at times. Over the years, it seems I am needed to help others understand how to communicate with the hearing impaired and understanding how hearing aids work. It is a constant struggle for me to communicate with others. Especially those who have accents themselves.
I also spent 12 years working with severely handicapped children. I used to change those diapers on the job. Or tube feed them, or teach them how to behave, teach them to read or add or their colors, etc. People used to ask me if that job made me sad “working with those poor children”. I always said No it does not make me sad. Some of these kids did not know they were different. My job was to keep them comfortable and help them learn as much as they could.
Now I am in a different field. Occupational Therapy with geriatric patients. Helping them to return to prior level of function. Almost seems as though I have made a full circle here.
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What a beautiful heartfelt honest post. It really spoke to my heart this morning. Not because I have a child with special needs, but because I have custody of a 4 year old at an age when I ‘should’ be empty nesting and ‘free’ to do the things I had planned out in life. However, that wasn’t HIS plan for me. I’ve been debating on writing a post about the how, where, why of how I became guardian of a precious bright smiled, dimpled 4 yr old boy. Now I know I need to.
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Wow, what a beautiful post Jeannett. You’ve put so many of those emotions and struggles I’ve felt on this journey of parenthood into perfect words. Thank you for always sharing your story so honestly.
Libby´s last blog post ..Merry Christmas!
I loved your blog, your honesty and the reminder of my life being not that hard. I have 4 kids, 1 who has an extra chromosome and underwnet 7 surgeries before he was 7. He took years longer to do what others could do normally and has a larger than normal sized head along with a zillion other “small” imperfections. If you saw him now you would call me a liar except you have a kiddo who is overcoming so maybe you would see between the lines. Either way there is one thing that stood out about your remarks which I couldn’t just leave. I do not believe God made a child with the intention that they be sick, or unable to function etc. I can’t wrap my mind around him making the choice to take away from any of our purposes by causing such disease. I don’t know how or why disease happens but living here on earth not in Heaven does allow that. I don’t believe for one second he intended for my son to endure all that he has and still does. Why it is I do not know either. This is defintely one question I am encouraged to understand when I get there. Course, I am pretty sure I won’t stand there demanding answers to it all either. I pray you are strengthened for these times, and all the days of your walk. You are a blessing to those of us who follow you!
Man, Jeannett
You have such a big heart and such great ways of sharing your heart. Thanks for the glimpse into the prism through which you view life. You are so articulate and I wish I could live nearer so I could REALLY be in community with you. This life, this blogging world is so weird. I feel like I know you… more intimately than I know my IRL friends. I’m so very blessed to know you. Thankful for your transparency, your willingness to share. Hugs to you, friend!
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J- i love you and your gigantic heart. i love reading what you write and how you feel. you inspire me and make me want to be a better person. for reals.
my dad always said- “Someone will always have it better than you. Someone will always have it worse. Appreciate what you have.” He is right. And yet I struggle daily with this.
When I was in high school I took a psych class and we worked with kids like the ones you described above. Before that class I was AFRAID. Something happened along the way- I learned to love.
The autism momma in me (whose son is almost 12 and barely speaks and is weird in stores and makes noises and and and —- but who is an absolute joy in my life) wants to let you know that the very best thing you can do is to keep doing what you’re doing. Teach Henry. Teach Lucy. Teach Jill. NEVER be afraid to smile at those moms. They appreciate it SO much. And like you wrote- not a “pity” smile- we can see right through that. But a real, you are awesome, smile.
If one of your kiddos asks a question- even if it’s loud and what you think is rude- ANSWER. Or if you don’t know the answer, ask the other mom. I promise you, it will (99% of the time) make for a great experience all around. The mom will appreciate that you didn’t hush your kid and make them feel like their kid needed to be talked about in shushed tones. And your kids will learn truly- that we are all children of God.
Did I mention I love you? b/c I do. Happy day friend! xoxoxoxoxoxo
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I might have made up for not commenting for months with that gynormo comment. Please enjoy. xo
Mique´s last blog post ..Life is Short Eat Dessert First!