For Better and For Different

For the special needs parents

We were young and in love our first Valentine’s Day together. I was working my first grown-up job and he was still finishing school. We thought life was busy, with tests to study for and official work email to check, but we always seemed to have time to be romantic and flirty, to hold hands or sneak in a little inappropriate touch in public, just for the thrill.

He was newly sober, so we sipped sparkling cider and ate chocolate and although I don’t have a perfect memory of the evening, I’m certain there were flowers. We were young and in love, and he always remembered flowers. He bought me a soft fleece blanket, with red hearts and pink I love you and kiss me sentiments sprinkled all over it. Our four-year-old thinks it is hers now, and she’ll tell you so, with no thought whatsoever to the special memories those silly hearts bring back. The irony of that is not at all lost on me.

We pulled out the vows we had read to each other just six months earlier, and we looked down at them with pride, admiring our intentional word choice and beautiful promises to be selfless, and in absolute disbelief that those things we said could ever be hard to remember, much less hard to keep. We were young and in love, and while we felt the weight of those vows and the meaning they held, we still enjoyed carrying them.

But life gets heavy. The baby is crying and we are not sleeping and there are no diapers left in the house. And then the pediatric specialist says something is wrong. And the bills start coming and the appointments steal date nights and we have three young kids and one who needs a little bit extra and we can’t just call a babysitter like that, like it’s easy.

We were young and in love, but it didn’t always feel like there was so much to carry.

Now it feels like the easiest things to drop are those vows.

***

I never really noticed special needs parents until I became one. All of the mamas at the park, at the gym, dropping kids off at Sunday School, they mostly looked a lot like me: their hands were full as they wrangled their little people in and out of places, but it was motherhood as usual. The first time I was called to pick up my little one from childcare for being, well, for not fitting the mold he needed to fit to be there, I felt it, the weight of being unusual. The second time, I mourned what I thought could be happening. The third, I sobbed.

And then it clicked. The reason I never noticed the special needs parents is because they aren’t there. So many of them, maybe most of them, aren’t coming to church, or dropping kids off at the gym, or chatting with friends while their kids play at the park.

Because it’s just too much to carry sometimes, being unusual.

But I can’t put down my child. He needs me in a more profound way than I ever imagined I would be needed by someone. I shift the weight around and try to find a comfortable place for it on my hip, but I tell myself over and over again that I cannot drop it, I cannot put down these needs, the ones people call special but in my most honest moments I have a few other choice words for. If I drop them …

… my heart cringes at the thought.

But those vows? They were so easy for so long, when life felt for better.

This is worse. This is much worse.

I know that a marriage needs many things, but those needs aren’t special, not compared to a little boy who won’t — or maybe he can’t — look up when you call his name or stop when he is running into the street.

So I’m tempted to just set them down, those vows with such intentional word choice, right here, for now, until life feels for better again.

Because I do not think I can put my husband first, not when my child’s needs are right in front of me.

Because we just put $600 for a month of behavior therapy on the credit card, we cannot think about a date night.

Because I thought the entire day about who will take care of our son when we are gone and he has the nerve to want to have sex? Does he not think about these things at all?!

Because we were supposed to be able to go to the park, the gym, to school, but now we are so unusual.

Did we vow for "unusual"?

***

Seven years have gone by since our first, and another Valentine’s Day has just come and gone. We ate pink and red M&M’s, and I hung a banner with glitter hearts I found in the dollar bin. We didn’t go on a date and I told him not to buy flowers because remember that therapy bill?

But I watched him love that special little boy. I watched him with his patience, his tenderness, his unwavering commitment to be his dad no matter what he needs. I watched him practice matching and listened to the inflection in his voice as his enthusiasm grew with each correct match. And then we locked eyes and shared a moment of pride that you have might have to have a special little one to understand: he wasn’t doing this last week, now he is. Our eyes communicated a gratitude across the room that words would fall short of capturing.

Maybe this isn’t worse at all.

He used to hold my hand as we walked. Now he is busy keeping a solid grip on our little runner. I used to act like a giddy young girl and flirt with him shamelessly. Now I spend most hours of the day disciplining inappropriate behavior.   

Life did get heavy. But maybe it didn’t get worse. Maybe, instead of putting down those vows so I can pick up the needs, maybe if I just saw all the ways we are carrying them together I would realize we have enough strength to hold it all.

Because maybe we are just different.

But isn’t everyone?

So for better or for different, I’m not putting him down again. We are carrying this together.

And it feels lighter already.
 

Grief's Turn To Talk

When I read those eight bright blue letters after peeing on a stick, PREGNANT, I was expecting fear. Everything about my first child has been easy (that’s not true – I loathe potty training), but for some reason I have harbored a growing apprehension about having another baby. I was heavy with caution as I read that word, but what I actually felt in the moment was overwhelming thanksgiving for this opportunity to carry a soul. Hope replaced my fear. Tears did come. And through them, a smile I couldn’t wipe away and praises I couldn’t keep in.

Thank you for this life, Lord. Thank you for this baby, Lord. Thank you for this opportunity to hold a soul. You are good, Lord.

They say you should be cautious in those first twelve weeks. That a lot can happen and you should keep your happy little secret to yourself. But God made my cup overflow with joy and hope when he was knitting me together 32 years ago. I cannot let caution steal that joy or fear crowd out that hope. We did keep this baby a secret, mostly just because it was fun to have something only we knew about. I did not keep quiet out of caution or fear. There was abundant joy in the keeping of this secret.

Because this life, this soul, it deserves to be met with joy. It deserves to be anchored in hope.

***

As I sat in the waiting room after my slow walk to the office that day, I could feel myself clutching my hope for this baby too tightly. I wasn’t resting in it anymore. Fear started to creep back in.

There are very few times when nausea is welcome. In the first trimester of carrying a soul, it’s sickening if the nausea goes away.

I had been anxiously waiting for the day when my jeans would feel too tight, but they continued to zip up easily. I spent a few weeks exhausted the moment after I put my three-year-old down for her nap, but as my nausea went away my energy returned. I wanted to hurl that energy away from me, screaming “I don’t want this!  I want this energy to be going towards growing this baby!”  I wanted the mention of a particular food – any food – to suddenly sound repulsive, but my appetite remained normal. I didn’t want normal.

I craved the discomfort that told me my baby was comfortable.

Anxiety welled as I tried to find a relaxed position on that stiff tissue papered table, waiting for the ultrasound screen to light up. I knew my body was now only carrying a body. That the soul had gone to be with our Father who I was desperately asking to hold me while that grainy image appeared on the screen.

“Do you see that flicker?”

“There’s a heartbeat?” I heard more skepticism in my response than joy.

“That’s the heartbeat.”

Something in her tone wasn’t confident and while I wanted to believe her, I didn’t. I wanted to see that bright flicker confirming my baby’s heartbeat. I lied and told her I did. Maybe if I said it out loud, I would see it.

The silence was too long. I knew.

“I thought I saw a flicker. I’m sorry, but I’m not finding a heartbeat.”

I nodded silently as the tears finally came, confirming what I already knew. There’s only one heart beating on this table right now.

I started asking questions and I could tell they didn’t make any sense.

“Would you like to get dressed and I can give you some time to collect your thoughts?”

Yes, that is what I wanted. She left and I robotically pulled my still perfectly fitting jeans over my hips and tried my best to collect my thoughts, as if these racing thoughts could be picked up and tidily put back in place.

When she opened the door I was met with compassion, gentleness, sensitivity, and the list of “I have to say this” statements.

This is actually quite common.
There’s nothing you could have done differently.
I’m so sorry.

I know. I know. I know.

***

My legs carried me outside and I was met with signs of life — of hope — everywhere. The sun shone boldly — both in the bright blue sky and on the faces of everyone walking around. The tree branches that just last week were bare were now starting to grow heavy with springtime buds. The pregnant bellies bumped past mine. This doesn’t make sense. Why isn’t the sky sullen? Why isn’t everyone walking around with their eyes cast toward the ground? Were there this many pregnant women on my walk here?

I stood frozen for a moment outside the door. I walked half a block towards Central Park, then turned around and paced back towards the doctor’s office. I picked up the phone and left a quick message for my husband to call me as soon as his patients left. On the sixth or seventh pace, he called back. He already knew what to expect from my shaky voice on the message.

“The doctor couldn’t find a heartbeat.” I tried to hide my wet face and red eyes behind the phone, but that screen isn’t quite big enough. In this city, we do life together. We can’t run to the parking lot and cozy up within the four walls of our car to cry. We process this life with 8 million other people.

I couldn’t imagine walking home and greeting my joy-filled daughter in that moment. I needed to wait until my husband was home to soften that greeting for me, but I didn’t know where to go. I remembered that I had a pen and paper in my bag, so I found a quiet coffee shop and sat down to write. My New York City version of four walls to hold me in as grief replaced my joy.

***

I naively thought I was immune. Somehow protected or hidden. I thought I could keep my role as the shoulder to cry on. The listening ear. The sender of “thinking of you” texts and maker of “just checking in” calls. I am still angry that I was forced to switch roles. That now I’m the crier – the sad story teller. The receiver of “thinking of you” texts and “just checking in” calls.

“I’m so sorry, Jodie.” 
“This isn’t fair.” 
“God has a plan for you and your family.”

I’ve been there too. I’ve uttered those statements. But this is what I really wanted to hear. No advice. No counseling.

Just this. “I love you friend. And even though I just found out about this baby, I love the little one and am so sad we won’t get to meet him/her.”

We. I’m not grieving by myself. With that short, loving text, my friend met me in my grief. She entered in to this raw place with me, even if just for a moment.

I know my friends and family love my three-year-old. I know they delight in her and enjoy her kind heart and witty personality. So I know that if this baby’s heart were still beating, they would be giddy at the thought of meeting this little one. All I want now is to know that I’m not the only one who loves this baby. We’re so sad we won’t get to meet him/her. Yes, they’re sad for me, but I’m sad for all of the people who love this baby too. I want to know I’m not alone in my grief. I want to know I’m not alone in loving this soul.

***

I believe that the life I held was to be met with joy at the sight of those eight letters standing proudly on a stick — PREGNANT. So I have to be willing to meet it with sorrow at those eight softly spoken words — “I’m sorry, but I’m not finding a heartbeat.”

I know that the God who knit me together with a soul always brimming with joy is with me while I grieve, for as long as it takes. So I’m walking in this grief. I’m not sitting in it and I’m not rushing ahead of it. In a way, I’m welcoming this grief to stay as long as it needs to stay.

In this grief, I’m choosing not to look forward for a minute. I’m choosing not to look at the good that might come quite yet. I’m choosing not to try to see the bright side of this pain right now. I’m choosing to let this grief be felt fully. Because the God I love, the God who I believe is holding my baby’s perfectly healed and whole body as I type this, He knows grief. And He doesn’t tell me to push it away in order to heal.

Grief does not negate hope. It doesn’t change the fact that I was created with joy. Grief and hope can walk side by side, like good friends. Sometimes one friend is in the season of sharing while the other just listens. Right now, it’s Grief’s turn to talk. To be known, to be listened to and held and sat with.

Hope does not get up from the table.
Hope is what allows grief to be raw and vulnerable.
Hope is what my grief is held in.  

So through grief and in hope, I still say: Thank you for this life, Lord. Thank you for this baby, Lord. Thank you for this opportunity to hold a soul. You are good, Lord.


Guest post written by Jodie Toresdahl. Jodie is a Montana girl at heart living her dream life in New York City with her husband and daughter, who both love adventure has much as she does. Most days she can be found out exploring the city, iced coffee in hand, chocolate on her mind, and her daughter either racing ahead or walking ever so slowly behind. She writes about raising a child in the city, learning from the thousands of encounters with people she gets there, growing through the discomfort of transition, and seeing what God teaches her through it all at www.bigskytobigapple.com

She's Not All There

My children are occupied five feet from my sneakers so I don’t feel bad grabbing my phone for a moment. I am looking for quotes about joy. The name Jim Elliot appears in my search. What did he have to say about joy? “Wherever you are, be all there! Live to the hilt every situation you believe to be the will of God.” Oh, right. I always forget it was him who said that. I grew up in the Christian faith so his name and story are familiar to me, but the sum of my knowledge of Jim Elliot would take less than two minutes to recite. I do not think of him as promoting some kind of "bloom where you’re planted" philosophy. My children are racing Thomas trains down a Little People Car track, a conglomeration of Christmas gifts merging on our rug and I bite my nail, my phone in the other hand, still shocked by the dead, brave man's words. Live to the hilt? Wherever I am? Be all there? 

Jim, I don't know how. I've never been all anywhere a day in my life.

The mystery of the origin of my wandering mind was a quick solve. It traces back to my educational biography. I started kindergarten on one side of town, then moved half an hour away to complete 1st and 2nd grade. My math ability was average and falling, but it was my penmanship that was in dire straits (an early memory: a substitute teacher holding up my printing practice page in order to provide the entire class an example of how not to form letters. We don’t write our Sammy Snakes like this, class. April’s Ss are sloppy. I know then I am not smart). I could read though, and I could retell stories, so my second grade teacher recommended I go to the gifted school. Another move. Four grades, three sets of new friends. I remain at the gifted school until some June day in 1996. Then I find myself on the grassy patch in front of the cafeteria. It has been confirmed repeatedly that I am an imposter here (math, always) but I have made dear friends and we embrace and cry on our last day together. The six of us sport matching jelly sandals and our hair has been sprayed yellow and pink and blue. Several of us smell like the inside of a Hot Topic store. It's the last day of school. Three months later I step onto a junior high campus where I know less than five people. The numbers look similar two years later when I walk onto the quad for my first day of high school. This, this high school, is the school choice that upsets me the most.

School taught me this: Life is one of two things, the next thing or packing to get there.

But attending a high school I presumed to hate, ended up being one of the best changes of my life (a fact about which my dad still ribs me). Not two weeks into the new school year, the Tuesday after Labor Day, I meet the father of my children. He is a year older, a cool fourteen, and he calls me on the phone an hour after the final bell rings. Hello, may I speak to April please? “You don't have to say that,” I half breathe, half giggle. “I have my own line.” I twist the swirled cord of my neon blue phone around my fingers, inching toward my bedroom floor in full swoon, certain beyond doubt I actually have the greatest parents in all the land. I've met my husband, and he is so perfect I am beside myself, and I am keenly aware of both of these facts.

He tells me he loves me in a movie theater over Christmas break. I start planning our marriage. He is fully on board. This makes sense to both of us. We’re a little older now after all, (I'm 14 and he's a worldly 15), and other than this relationship, high school hasn’t been terribly exciting. There are plenty of fun moments, to be sure, but it just doesn’t have that time-of-my-life, Saved by the Bell feel I was counting on.

Not to worry. It’s just time to look ahead to the next big thing. Or in my mind, The Next Big Thing—put it in lights, it’s going to be fantastic, next never disappoints!  (Until it does.) I use our dial-up internet to begin researching colleges, and I study wedding planning through a very helpful television show, A Wedding Story. Two episodes of A Baby Story always come on after, but first things first.

How could I have known this way of looking at time, this foot in midstep, eyes on the horizon way of living, would pose a threat to the children I wouldn't meet for nearly 20 years? I could not. And because I could not, I continued in this fashion: planning my college years in my head during tenth grade history class. Researching wedding florals in my dorm room with my own wedding more than two years away. I distinctly remember asking my boyfriend for his opinion on wrought iron stair rails when we were juniors in high school. It was helpful to get the green light on this décor choice then, at sixteen, since I was already planning our home. He, this boyfriend, was the very first person to point out my love for the future (The Future). He made it seem like perhaps my affections were a little … extreme, a little abnormal. “You just don’t ever seem content.” That’s how he worded it. Pft! What did he know? I was perfectly content, whatever that meant. I was simply asking if he wanted to live in a Spanish style two-story fifteen years from now.

This went on and on.

I became a mother on November 6, 2013. The mental locomotive of Next that I'd been riding and steering and feeding for 25 years came to a halt. A metal grinding on metal halt. 

This baby didn’t much care about where he’d attend preschool, or the theme for his fifth birthday. The future mattered stunningly little to him. He loved now. Now he wanted a bottle, now he needed to be changed, now could be a good or terrible time for a nap, now seems like the perfect time to wake up for the day, he’d like that squeeze packet of bananas right now.

Certainly, motherhood involved planning ahead. I had to think through the day and pack the wipes accordingly. I had to schedule our outings around his naps. Doctor's offices still operated with dates and times a couple weeks out. But for the most part, my life was wrapped up in my son’s life, and his life was this very minute and not much else.

The chunky, nineteen pound six-month-old on my hip didn’t know it, but our world views were at war. I still wanted to talk about two years from now, and what my husband thinks of craftsmen-style architecture for the house we’re buying five years down the road, and with the Christmas lights going up, is it too late to talk about goals for this summer? And Ridley? His future was twenty-seven seconds from now when the timer dinged signaling his bottle was ready.

I do not know if my husband appreciates craftsman-style architecture, He brought up the contentment thing again.

The men in my life seemed to be taking a stand for the present. And it forced me to consider a terrifying element of the future. The moment when my kids will begin reflecting on the way they were parented, on the culture of the home in which they were brought up. My mom? Yeah, I mean she was a good mom. You know cookies and Christmas, and she tried to do fun stuff. But she had this weird thing about, I don’t even really know how to describe it. Like she was always planning ahead. She was really into the future, if that makes sense.

I don't want them to say that about me. I don’t want them to see me living this way. I am in my thirties. This may be the building stage of my life, but it's their childhood. 

I have to dismantle the time machine in my head.

Here is where I’d love to put the bow. The thing that ties it all together, that tells the world I am a changed woman, so present in the present, so all there, so hilt living, or whatever. But I am not. No bow here. Only a battle. My husband and I currently have a bet that I won’t be able to not complain about our current house until October. He doesn’t think I can do it. He is used to receiving several texts a day about why moving immediately is of the utmost importance and simply cannot be put off until next year, like we planned. So far I haven’t said a peep. Not one word. Not one single syllable about the tiny kitchen, or dismal storage, or the office furniture crammed in our bedroom because there is not enough space here and where in the world are we supposed to put this third baby when he arrives. I haven’t said a thing. 

The house is but one battlefield of mine. I am not practicing contentment. I am fighting for it.

I am fighting to live in the now for the sake of the future. I am fighting for my children, and for the mother I want them to describe someday in that future.

Ridley, Kajsa, and Caleb jumping in my belly, you taught me I am smart. I'm learning how to love you, aren't I? And if anyone wants to hold up my paper, the one about me as a mom, and show the class all the ways I’ve been sloppy, there will be plenty of mistakes to see. But in my own handwriting, with the best penmanship I can manage, it will read clearly:

For the first time ever, I'm all theirs. 

The Children I Had Before My Own

Before I gave birth to my first child I had many children. They weren’t biologically mine. I didn’t adopt them or foster them. They knew little about me. I could never tell them I loved them or even allow them into my home. They held a space in my heart that I could never speak of out loud. I had to create a wall between us while I infiltrated the deepest parts of their minds and hearts. I was their therapist.

They came to me for many different reasons such as anxiety and depression, trauma, self-harm, or behavioral concerns. Some needed a quick pit stop to get back on track. Others needed a good long rest. They all had their own version of scars. Some scars were physical from abuse or self-inflicted wounds. Some scars were emotional from being abandoned and neglected or told they weren’t worth anything. I was there to help pick up the pieces and help them figure out how to put them all back together. I was there to hold a mirror up to their faces to help them see the beauty within. I was there to be the dumping ground of thoughts, memories, and pain. Some days I listened to them cry or yell and on my drives home I cried and yelled too.

Some rushed to give me hugs every time I saw them. Some drew me pictures and wrote me letters of thanks. Others hit me, kicked me, spit at me, and called me every name in the book. But they all had something in common, they were hurting. Some of them were completely broken. Broken by a failing system, broken by the two people that were supposed to love them unconditionally, broken by the absence of the village that is supposed to save them.

When I was in the thickness of work and before I had my own child I kept the wall strong. I separated work and home. I put their tragedies in the deep corners of my mind and locked them away. I developed a shield to deflect even the most grim stories and overwhelming emotions. I stayed strong for them and for me because there was no other option.

Now that I am distanced from the work I allow those corners of my mind to unlock a bit. I let the wall crumble down. I grieve for what happened to them in the past and what may have happened since I last saw them. I let my heart open and I cry when I think of the anguish they suffered. Many of them are adults by now but in my heart and my mind they are still children, children that I cared for, children that I tried to nurture in ways they should have been by those who bore them.

I see my son break down in tears when he falls and scrapes his knee. His tears and his cries sting me lightly but I know he’ll be okay. He has a strong village. The kind of village the children before him deserved. But his tears are a reminder of how deep pain can go and how lucky he is to be protected. In a way his joy and security are painful reminders for me of the ones I had before him that weren’t so lucky. He is so lucky because he has me. On the days where I feel I am not enough for him or when I let the self-doubt tell me I’ve made so many wrong choices I think of the children I had before him to gain the right perspective. I try not to minimize my efforts because even on the hard days I show up and I love. I am enough. I am exactly what he needs.

My love for the children I had before my own is not unique. There are many out there like me. Some share my title or have different ones such as teacher, counselor, case manager, nurse, doctor, lawyer, and many others. We are living reminders that the village still stands. Instead of shaming the persons responsible for the hurt these children have endured we decide to step into the darkness to help. We take hold of their hands and sometimes the hands of their parents and we try to lead them into the light. We are love warriors. But we never say it out loud.

I often think about what I wish I could say to the children I had before my own. And I finally feel ready to say it out loud:

I want you to know I still think about you. I hope you’re okay. And I hope for a short time or even just a moment in our relationship that I was something that you needed and you felt comforted by my presence. And even though there was a wall and I couldn’t let you break it down know that I loved you (and still love you) in my own special way. You made me a mother long before I ever became one. And for that I thank you.


Guest post written by Rachel Bowers. Rachel is a licensed therapist and social worker, maternal mental health advocate, and mom. She blogs at Full Motherhood. When she's not chasing after her spunky 2 year old pirate-loving son she's fantasizing about being in a Jane Austen novel or starting random conversations with strangers because everyone's life story is truly fascinating. 

Photo by Emily Gnetz.