Atti gets his Baclofen Pump

Kid in Hospital Bed
After a year stuck in red tape hell, we FINALLY got all the approvals necessary for my little guy to get his next surgery. I kept thinking of this one as a quicky on the road to the two major hip reconstructions we have coming up, but boy was I wrong. This one was HARD. And totally sucked. For all of us.

Atti had a Baclofen pump implanted in his abdomen. The pump is full of medicine and releases it directly into the spine, where it can bypass all the side effects of taking something orally. In this case, Baclofen is a muscle relaxant which, if you’ve ever taken a muscle relaxant you know, makes you stoned. Sleepy and silly and incoherent is no way to go through life. So by having this pump he gets all the medicine he needs but he still gets to keep his clarity.

I didn’t realize until our pre-op appointment that he was going to be in the hospital for a week. Or that he’d require at least two weeks of recovery at home afterward. With all of Atti’s surgeries he’s bounced right back almost even before we left the hospital. This one was different.

Dad and Sick Kid

This time, we couldn’t keep his pain under control. He’s so stoic that he never cried, he just writhed around in bed with the pain written all over his face. The worst was when he’d wake up in the middle of the night begging for help. I will hear that little voice in my nightmares until the end of time.

I stayed with him in the hospital the whole time, and since it was Shriners we were spoiled rotten. I got a roll out bed next to him so I didn’t have to sleep in pushed together chairs or a windowsill like I’ve had to in the past. There was a day room playing music he liked and a cafeteria with decent enough food. But still, it was the hardest time I’ve ever had as a parent of a kid with medical needs. This hurt him so bad. The pain has been intense and bewildering. And it’s hurt how he feels about himself. And there’s nothing I can do but hold him and love him and try to save my tears for the bathroom, or at least where it’s too dark for him to see.

We’ve been home now for a couple of weeks and Atti is crawling around like nothing happened to his little body. The spasms in his legs are way down, we can get his legs open enough to easily change diapers, I think this is going to make a massive massive difference for my little hero.

But we still have some healing to do. Both of us.

facebooktwittergoogle_plusredditpinterestlinkedinmail

Atti’s Introvert Friendly Birthday Party

Birthday Party
For Atti’s whole life, any mention of a birthday party was met with screams and tears. Even attending other kids birthday parties were too much for him to take as he was humiliated by proxy with all the attention on the birthday kid. Even hearing Happy Birthday in a restaurant was enough to send him into redfaced earcovered dripping wet tears. And for a kid as introverted as mine? A birthday party really would be torture. All that special attention is great for an extrovert, but with my guy being too shy to speak, I can’t imagine a greater hell than opening presents while everyone watched.

So we did things just the three of us. I’d make a special cake, or he’d pick out a special present, but it really couldn’t get lower key. Until this year. Atti finally said he wanted a birthday party. We were so shocked I kept asking him over and over again. “Really? A birthday party? Do you want your friends from school to come? And church friends? Really?” But he kept saying yes, so I jumped on the chance to go absolutely crazy.

And I did. Special invitations, so so so much food (that will be coming later this week), lots of decorations, but I also kept one eye on Atti the whole time, making sure that I had built in some safeguards for my gentle little boy.

So if you have an introverted kid, here’s some tips I’ve tested out for you.

Dance Party
Don’t make your child play host. I made a music playlist and had it going on the computer so as people arrived I’d hand the kids a balloon to blow up or play with (as age appropriate) and told them we were having a dance party. We built the chaos of those early minutes into the party so I never had to ask Atti to go and take a kid to play. We were all just playing from the moment they walked in the door.

Cow Kiss
Create a safe space. For our activity we rented a petting zoo (hashtag country living privilege) but the point of it was to have something Atti could hide in while the other kids could still be entertained. If things got too overwhelming – which they did – he could hang back and make friends with a special calf while all the other kids ran around the backyard doing whatever they wanted. In a pinch a safe space could be a bedroom, or even your lap, but it helps to have a place your child knows they can check in for a few deep breaths to ward off the big overwhelming feelings.

Alpaca
Hit the invitation sweet spot. It might seem counter intuitive, but if you’re not having a party with a couple close friends, than the answer is to throw a rager. We invited a LOT of people. And we told everyone to bring their siblings and parents. We basically had an open door policy. What you’re looking for is reaching peak crowd. If you have enough people that you can’t all sit around and talk in one large group? You did it right. A crowd allows people to break off into smaller groups, people can disappear for a minute if necessary, your child isn’t the source of entertainment, and they can hang back as much as they need in order to be comfortable without anyone being worried or changing the fun of the party.

Goat
Throw out the program. It was really important to me that if we were going to throw a party, I wasn’t going to neglect Atti to entertain a bunch of other kids. Free form activities allowed me to make sure Atti was having a special time, but if the other kids were bored with the dance party, they could play with stickers set out on the table. Or pet the animals, or go crazy in the backyard, or play in Atti’s room. There were enough adults around to make sure nothing got broken, but otherwise I encouraged the kids to just play and let go of any plans of moving orderly from one activity to the other. Any kind of an activity that came with an expert to take charge would be great too, as long as they were warned not to single out the birthday kid.

Calf
Have a buffet style spread. I made so much food for this party. Partly because it was so much fun for me, but also because I thought of the food as another activity that could provide a distraction as necessary. I spent plenty of time around the snack table as a teenager, and I hang with so many introverted internet types that I know the punch bowl is a perennial comfort zone. So keeping with the motive of not having to control or lead anything, I had all the food out on the table and made it up for grabs through the whole party. Including the birthday cake. We didn’t sing happy birthday, I didn’t walk in with lit candles, we just had it on the table and about halfway through the party I started cutting it up and putting it on plates.

Cowboy
Make One on One time. When a stressed out overstimulated introverted kid starts getting overwhelmed, the LAST thing they want is attention drawn to that fact. If you can make some activities that require one on one time, you can release some of that pressure without anybody being the wiser. For us it was taking turns on the pony rides, but it could be facepainting, or a turn on the trampoline, or special cupcake decorating time, anything that lets the kid chill out on their own for a minute.

Horseriding
Forget the presents. This will not only save your introvert some unwanted attention, but it will make you a hero among parents.
Buying presents for kids parties is the worst! Who knows what some kid at school wants? You’re left spending money you don’t want to spend on plastic crap the kid might not even want. Boo. Instead we took Atti shopping and let him pick out his own presents, and then we had a couple other things – like his Big Boy Bed – that were surprises. If your kid really really has their heart set on presents, then maybe you could stash them in a back room somewhere so you don’t have to open them while people are at the party.

Family
Throwing this party was a total dream come true for me. I’ve been waiting to go Pinterest crazy with a birthday party for Atti’s entire life! But one of my core values as a parent is not to make Atti’s childhood all about me. It has to be what he enjoys, in a way that he wants to celebrate, no matter how many adorable paper goods I’ve had to pass by. I think with this party we managed to make both of our dreams come true.

facebooktwittergoogle_plusredditpinterestlinkedinmail

Year of Pleasures – A Day at the Nursery

Nursery

When I buy plants it’s usually while I’m doing something else. I’ll pick up a little something while I’m buying nails at the hardware store. Or I’ll buy some herb seedlings along with my groceries. I haven’t been to an honest to goodness nursery since I don’t even know when. But with my friends coming in to town I wanted to do the backyard up and I had an Atticus that needed to be entertained, so I consulted yelp and went to a nearby nursery. Holy cow was it amazing. I could have spent forever there. There were butterflies and hummingbirds all over the place, so used to people that they’d fly right up to you and hover in your face. I took my time picking out primroses and ranunculus while Atti zoomed up and down the aisles and searched for the perfect red flower to take home for his contribution.

I think I found a new happy place. If they served food there I might never leave.

facebooktwittergoogle_plusredditpinterestlinkedinmail

Year of Pleasures – Love Note

Love Note

Atti has a lot of trouble with fine motor skills. Those darn fingers of his won’t listen to do much more than follow the pointer finger around. So a lot of the therapy he does involves art so he can practice working with little pieces and give those other fingers a job. He’s still obsessed with the alphabet, so his OT gives him a lot of foam stickers to work with – it’s something he cares enough about to keep at while he’s frustrated trying to get the backing off the sticky part.

I visited him the other day and his OT helped him cut out a heart shape with special scissors, then asked what they should spell. I admit, this was my suggestion, but Atti got all excited and spelled it out himself. He was so proud of what he made he could have busted wide open, and so was I.

facebooktwittergoogle_plusredditpinterestlinkedinmail

Atti’s Big Boy Bed

Big Boy Bed
The last month has been stuffed full of celebrations. So many that it’s going to take me weeks to share them all, which just feels heavenly. After the gauntlet of last year, this feels like full circle, surrounded with love and good news.

At least, bittersweet news. Atti turned 7 at the beginning of February. 7. Six felt like a big deal – going into first grade, looking so big – but with some of Atti’s delays I could still play at having my baby. Not anymore. He is big. He’s losing teeth all over the place, he’s got an adorable jack o’ lantern grin, he gets mad whenever I call him my baby, and he even changed the lyrics to one of our silly made up songs. He told me I can’t sing “he’s my sweetest little baby boy.” Now I have to sing “he’s my sweetest little super guy.” SUPER GUY! I mean, 1) How amazing is it that that’s the title he picked for himself, and then 2) MY BABY!! WAHHHHHHH!

New Bed
For this big boy birthday we figured it was time to give him a big boy present, so we hauled out the convertible crib/daybed/pile of rubble he’d been using his whole life and got him an actual twin bed. With a real mattress and not the plastic covered brick that babies need to sleep on since they’re too little for pillows. He is obsessed with it.

Every day he comes home from school and asks to play with his kindle in his bed. He sits in it and reads books, he leans over from it and plays with his cars on the floor. He jumps up and down so much that we have to readjust the rug every morning. There is so much victory in this moment. I keep thinking of him in the NICU, in his little isolette covered in wires, and I wish that I could go back and give myself a glimpse of this. That someday he’d be so healthy and happy and big. That despite all my fears for his future and his disability, I would still know what he needs, and even what he wants. I’d be able to communicate with him even without a lot of words and know that his deepest hearts desire is to be big, to grow up, to be independent, to be seen as his own little self. To be seen as the little super guy he knows he is.

I want him to be my baby forever, and he will be, but I never imagined how amazing it would be to get to be the mom of a superhero.

facebooktwittergoogle_plusredditpinterestlinkedinmail

Milestone

Atti Kiss

All of last year I felt like I was drowning. Whether it was the life threatening depression that turned out to be a med reaction to my endometriosis treatment, or the kidney stone that sent me to the hospital, or to finish out the year, freaking whooping cough, I was limping through just trying to make it through the day. In that condition I had to jettison every responsibility that was more taxing than breathing in and out and not dying. No more craft designing, no more blogging or Youtube-ing, no more contributing to the household. Bear has proven once again to be an exceptional partner and over the year he’s handled meals, organized help, and gotten Atti on the bus every morning.

As I’ve recovered, that last task was the one that loomed larger and larger in my mind. Slowly I started adding responsibilities back into my day. I’d do the laundry, I’d go grocery shopping, and then I’d fall ill again. I’d start to recover, blog through December, and then get sick all over again. But as I felt better and felt empowered to start picking the pieces up again, any mention of being responsible for waking up early to get Atti on the bus would send me into a panic.

You know that one thing that really isn’t that hard, but you dread it and so it grows and grows and becomes even more insurmountable to you? Like calling the credit card company or making the appointment or going to the DMV. It will just take a minute and then you’ll be done, but you can’t bring yourself to do it? And the more you put it off the bigger and bigger it grows until you just can’t see how you can possibly manage it? That’s how getting Atti on the bus became to me.

I should stop here and say – I know. This is nothing special for parents all over the place. And I am super lucky to have a partner who can take over for me for so long. But Atti also isn’t your typical nearly seven year old and getting him ready is A LOT more intense than shepherding him around the house as he dresses himself and eats his own breakfast. It’s a very physical labor that involves lifting and hauling and bathroom trips and trying to yank pants over his hips and putting braces on his legs and carrying him to his wheelchair and getting the heavy wheelchair full of kid down our super steep driveway without accident. It’s all the work you used to do with an infant, but that infant weighs 40 pounds. And is on wheels.

So it’s hard work that I wasn’t capable of for a very long time. Because I was too weak, because the most important thing governing my mental health is the amount of sleep I get and for a long time I couldn’t count on getting that by 7 am, and then because it had grown into this overwhelming and terrifying task loaded with shame. Because this is nothing special for parents all over the place, what was my problem? Because I love my son with ferocity and I couldn’t manage to do this for him. Because I was forcing my partner to carry all the weight of our family by himself. And that shame grew and grew until it threatened to bury me.

Today I got Atti on the bus. It was difficult, just like it is on my best day, but I managed it. And as I kissed him goodbye and he went through his morning goodbye call and response (“Ba-Bye! Have a good day at school! Mwah!” Repeat two times) I nearly broke out in tears. Because I did it. My fears of falling to pieces or not being up to the task didn’t come through. I have been beating myself up for months that I wasn’t able to do this for Atti, comparing myself to every other parent, and making the mistake that just because a task is common, doesn’t mean it’s easy.

I conquered this big shame covered complicated task and that means that I am officially back on my feet again. A little wobbly, but here.

facebooktwittergoogle_plusredditpinterestlinkedinmail

Developments for Atticus

AtticusCan

In keeping with this crappy year, I am not the only member of our family facing medical problems. For Atti’s whole life we’ve been watching his hips to see if they would be damaged by the tight spasticity of his muscles, and that time has come. His hamstrings are so tight that they’ve pulled one of his hips out of its socket. It’s so far out you can actually tell by looking at him when he’s crawling around pantsless. It’s like his own muscles are drawing and quartering him. Sorry. Gruesome, but you get the idea.

Eventually Atti will need a total hip reconstruction. But before that can happen they need to get the spasticity under control. It wouldn’t do to reconstruct his hip only to have the muscles pull it right back out of socket again. We did a test last month for a muscle relaxant for him and it went really well, so later this week we’ll have a final consult about what the plan will be before having a surgery to implant a pump into his abdomen.

The Baclofen pump works in the same way as an insulin pump. It’s implanted in the abdomen, just under the skin, with the medicine going into the spinal cord to avoid the side effects you’d get if the medicine went to the brain in large doses. The dosage is fine-tuned to get the best results for each patient, and more medicine is filled by injecting through the skin into portals in the device. I’ve heard all the miracle stories, and during the trial it was obvious that Atti was relieved from discomfort and pain he lives with as part of his normal. It’s all going to be a good thing.

And yet, this is grieving me like nothing else. The thought of him having this hockey puck sized protrusion from his sweet little tummy… the thought that it might hurt him if we play Bongo Belly like we have his whole life…his sweet smooth little belly scarred up…I’m just so deeply sad.

It’s kind of arbitrary the stuff that really gets to us. He’s had so so many surgeries. He has scars, he uses devices other kids don’t, he’s already “different”, but braces and scars never bothered me before. I don’t know why this one makes me so sad. I have scars on my face, on my feet, and a giant one on my own belly courtesy of Atticus himself, and I never even think of them. It’s part of being a human and they don’t trouble me in the slightest. But I guess this is the straw on the camels back. I’ve been brave and pragmatic about everything else. This one I’m just going to face weeping.

Compounding my grief about the implant is the knowledge that we are running out of time. His entourage always used to talk about his future with the worst case scenario being “IF” he doesn’t leave the chair. It was expected he would walk, anticipated, planned for. Now I’ve seen them all subtly shift to “IF” he walks. It’s still something we’re hoping for, working towards, but it’s become the long-shot. I tell the doctors and nurses and therapists that he’ll be seven in February and universally their faces fall as they cast worried glances at each other, wondering if they’re going to have to break me the news. They don’t. I understand. 8 years old is the benchmark. After that the pre-pubescent changes begin and there’s no keeping up with them. His growth plates are closing, and so is our window.

Living a whole life in a wheelchair is hardly the worst thing that could happen. With more wounded veterans in wheelchairs, maybe by the time Atti is grown there will be more accessibility, or even new devices. My Father-in-law is always talking about how one day they’ll implant microchips in our brains and disability will be a thing of the past. It cracks me up, but he’s not crazy. If Atti had been born ten years earlier he and I would both be dead, so who knows what developments will occur in between now and his independent adulthood.

But still. It’s hard to let go of dreams. It’s hard to let go of that vision in your head of your child in a jersey or on the track. To accept the fact that life will be harder for him. There will be places that will be inaccessible. That he will know pain and have his body scarred. But all those things have been true for me and I wouldn’t trade my life with anyone. In the future maybe he’ll have a microchip in his brain, maybe he’ll have one of those walking exoskeletons, maybe he’ll be part cyborg. I really don’t care as long as he gets to have the fulfilling, independent life that is my heart’s true dream for him. This surgery is the next step there.

Both to independence, and to being part cyborg.

facebooktwittergoogle_plusredditpinterestlinkedinmail

Atti goes Boom

Atti in the fountain

Atti and I were out running errands together, and like any six year old boy he was testing my patience. We were in Bath and Body Works picking up some presents for Bear’s staff, so I had him in his wheelchair and had the unenviable job of trying to shop, listen to saleswomen, keep an eye on my kid, and block the doorway against a sudden sprint to the parking lot. Imagine a six year old with the bodily experience of a toddler. That’s what I’ve got. Experimenting with independence, learning consequences, asserting his will, but with twenty extra pounds and wheels.

One of Atti’s early therapists drilled it in to me that I can’t treat him like he’s made of glass. His body is no more vulnerable than anyone else’s, he just can’t control it. In fact, he’s actually MORE impervious to pain than a typical kid because of the way his nerves don’t talk to his brain. This kid bounces.

So it’s a running joke with all of my mom friends that I blithely sip my cocoa while they’re nervously hovering afraid he’s going to fall off his chair. In the words of that therapist: “:shrug: Then he’ll learn not to do that.”

Of course, the rest of the world didn’t get that memo.

At Bath and Body Works I was loading the car while Atti was in his wheelchair on the sidewalk. I was talking him through watching where he was going, looking out for the curb, being patient until I could help him, but like most kids, he didn’t listen. He saw the wheelchair ramp and decided to try and do it all by himself, but one of his wheels went off the curb and he fell forward into the parking lot right on his little face.

Experienced moms know, this sucks. When you’re talking skinned knees and not blood or broken things, it sucks way more for mom than it does for the kid. You have to console your child, you feel the typical “I let my baby get hurt” guilt, but since it’s just skinned knees and everyone’s fine it becomes one more pain in the neck hassle you have to deal with in your day. If it was serious you’d drop everything and run to the doctor. But since it’s not serious it’s just aggravating.

But when your kid is in a wheelchair, the world thinks that every fall is serious. When Atti fell over he started crying, but I knew it was an angry cry, not a hurt cry. So because the day had already been long and there were still four more errands that had to get run I was frustrated. And then I saw the people running and I had to put on my show for the public. People were sprinting from across the parking lot, a lady ran out of the store with her basket she dropped in the middle of the sidewalk, all because a kid fell from a sitting position onto the ground. The wheelchair makes it look scary.

Let me pause here in case I sound totally callous. Atti’s fall was roughly the equivalent of a kid sitting on a swing not in motion, and falling out onto their stomach. This happens on playgrounds everyday so frequently that notes don’t even get sent home about it. I asked my mom friends what they do in this situation and they said, “I say, ‘whoops! hop up!’ so they know it’s no big deal.” I’m talking your typical kid learning how to use their body and not paying attention kind of fall. And since Atti fell in his chair, the chair takes most of the impact.

But to people who don’t see wheelchairs every day, it’s terrifying. So then it becomes about their emergency, not my son’s.

Atti was pissed off that he fell over. He was mad he didn’t navigate the wheelchair ramp by himself, but he was WAY MORE upset that a crowd of people were standing around gawking at his humiliation. So he’s screaming and crying because he’s embarrassed, but the crowd of people think he’s crying because he’s hurt and want to help the little disabled boy and his mom, and I want to tell them all to shoo and let me tend to the hurt feelings of my little guy. Atti won’t stop crying until they go away, and they won’t go away until Atti stops crying.

In that moment I feel the burden of representation. That’s my show for the public: the educator. The charming and approachable advocate of disability. The adorable little boy who makes disability not so scary. And in that moment when I want to tell them all to go away I think about my little friends whose disabilities carry disfigurements that make the world not so kind to them. I think of the kids without parents who can force a path in the world for them. I think about all the people with disabilities who are invisible to the rest of the world, who are pushed aside, who are unwelcome in public, who are vulnerable, and I think that doing a little education is not such a burden.

So while my child is crying I’m explaining Cerebral Palsy to the crowd. I’m helping them understand Atti’s speech and that he’s telling us how mad he is he fell on the ground. I’m showing them his chair and how lightweight it is. And inside I’m torn between wanting to respond to these people’s kindness with kindness of my own, and just shoving them aside to tend to my child.

facebooktwittergoogle_plusredditpinterestlinkedinmail

What are your kids hearing from you?

Atti Listening

Atti Listening

Atti still speaks in what we refer to as “catchphrases.” He’s like that kid in college who had a Dumb and Dumber quote for every occasion, only his quotes tend to come from his LeapFrog toys. There is a lot about that that stresses me out, but there’s also one side effect that makes me feel awesome. Like everything in life, there’s a silver lining in his dark thundercloud of speech issues.

Whenever Atti enters the room to find me, he greets me with “Hey! You found me!” Like I made a valuable and difficult discovery. Or he’ll say “Hi my sweet boy!” or “Hi my angel!” And because of the tense and gender he uses, it’s pretty obvious that he’s saying what he’s heard me say when I’m greeting him.

That’s a pretty powerful mirror to me. The fact that my little guy hears so many words of love and endearment from me just makes me feel like I am KILLING IT. And since there are plenty of other times when I’m not, it’s what gets me through those parenting pits of self-doubt and frustration. If all I ever teach my son is that he is loved, that’s enough. And he’s learned that.

I mentioned to one of Atti’s teachers how much I loved this and how I wished every parent could hear their words echoed back like that. She laughed and kind of shook her head. She said, “I bet that wouldn’t be a good experience for every mom.”

I think growing up the way I did actually gives me a leg up here. I’ve had a catalyst to approach this issue very carefully and thoughtfully since it’s my biggest terror that I’ll repeat the pattern and speak to my child the way I was spoken to. For people whose own parents never crossed the line into abuse but still screwed up occasionally, they haven’t had the reason to really examine things closely. Which means it is so so so so super easy to give in to frustration or lack of time or temper and say things in a way that we don’t mean.

Even if it’s just not saying what we mean. I turned out to be such an affectionate mom it kind of surprised me, but what surprises me more is meeting parents that don’t regularly say, “I love you.” I probably shouldn’t be surprised, my family never did, but now that I am a mom and I feel that love bubbling up through me and unable to be contained, it’s a mystery how anyone does. It’s not something that has come naturally to me, but as I’ve learned to embrace the vulnerability and express myself, I find the reward to be astounding.

This issue has me thinking a lot about things as simple as how I give instruction to Atti. Since my words become his words, I have to chose them carefully. And that thoughtfulness has ripples. I find myself examining my motivations, if I’m setting him up for positivity or if I’m dooming him with negativity.

For example, I need to teach Atticus how to be careful using his wheelchair. I could tell him, “be careful you don’t fall off the curb” or I could say, “you’re gonna fall off the curb!” Either sentence accomplishes my goal, but in very different ways. One uses love and thoughtfulness, and the other predicts a failure. One encourages him to act, the other discourages him from acting. If it keeps him from getting hit by a car, who cares? But if I have the time to think and make a choice, I want my teaching to be positive.

I think this kind of thoughtfulness is most important around issues of body image. We want our children to make healthy choices, but for the right reasons, or else those choices will become a different kind of unhealthy. One of my most vivid memories of my father is when he was trying to correct my table manners but did it in a way that made me feel ashamed of myself. And I wasn’t ashamed of my manners, I was ashamed of eating. Those kinds of messages are so powerful they’ve come with me my whole life.

But I think the good messages come along too. This part I have to take on faith since I don’t have much personal experience of my own. But when I see Atti scooting over to me with a “Hi my love!” it makes it easier. He has yet to repeat any of the words I’ve said in moments of weakness, so I think that my statements of love are winning.

facebooktwittergoogle_plusredditpinterestlinkedinmail

Growing up is breaking my heart

Atti's growing up

Whenever we stay at Grandma’s house, we all sleep in one big bed. It’s a luxury I treasure since we don’t do it at home – early mornings and places to get mean we actually need sleep, which we can never count on when Atti’s in the bed. This most recent trip I went down with Atti by myself while Bear stayed behind to work, so I had a big queen bed to myself and a snuggly little guy. It was heaven.

I snuck into bed after he had been asleep for a few hours and turned on the lamp so I could get in some hard-won reading time. In the lamplight I curled over to cuddle up to my boy, took one look at him slumbering there, and my heart snapped in half.

When he’s sleeping Atti looks so little to me. I can always see the baby still lingering around the edges. But with his mouth open wide enough for me to see the gaps in his teeth – gaps from his jaw and mouth getting too big for his little baby teeth – I felt that baby disappear forever.

Atti will be six this week. Six.

Every birthday has me feeling maudlin and sentimental, but this one is getting to be a bit much. He got his haircut and I cried. He wears jeans and t-shirts and looks like a big kid and I cry. He brings home school work and notes from his teacher and I cry. No mom is ever ‘ready’ for their baby to grow up, but right now? I’m taking it especially hard.

I think it’s the infertility. Each year that goes by without a sibling for him feels like I’m further and further out on that tail of statistical improbability. Each year older makes it harder, and less likely, that I’ll ever get to have another baby. I have to not only accept the fact that my baby is growing up, I have to try and face that this might be my only shot at motherhood.

Before I had Atti I always tried to hold a place in my heart for people suffering through secondary infertility, but it was always an exercise in radical empathy. Deep deep down, I really believed they didn’t have a right to ache like I did. They got to be a mom. They shouldn’t be greedy. But now I know so so so much better. For one thing, I know that pain is not relative, and anyone who tries to rank “appropriate” pain is just a jerk. But I also know what happens to your heart when you open it up enough to be a mom. I feel like this raw pulsing organ, running around with arms outstretched begging for someone to let me love them. I feel like I have no defenses. Like my vulnerability is wandering unsupervised through the world and I can never again pretend to be hard and closed off and impenetrable. My achilles heel is riding around on wheels and pushing his hair out of his eyes.

As hard as it was to not be a mom, and it was so so hard, it’s also, and a different kind of hard, to not get to be the kind of mom you want to be. Either way I had my coping devices. Pre-parenthood it was pursuing careers and education, taking advantage of my freedom, closing myself off to the world of babies and kids and putting all my attention on the adult world. Now it is wrapping myself up in my sweet little guy, getting kisses from him even if it means I have to trick him into playing a game where he gets to smash his face into my lips. I see now that there’s really no comparing the two. Being a mom of one doesn’t erase the pain of infertility, even as you enjoy every moment of it. Just like being independent and having opportunity doesn’t erase the pain of not having children, even as you enjoy every moment of that. It’s hard and it’s great. Full of silver linings and wonderful joys and also full of sorrow. It’s both at the same time.

No matter what the circumstances surrounding it are, it is always heartbreaking to want to love and not have an opportunity to give it.

I’ll be celebrating Atti’s birthday with him later this week, but today I’m grieving. Every bit of independence our kids achieve is us mom’s putting ourselves more and more out of a job. That’s tough for all of us. But it feels especially bitter and only a little sweet to me today. I love being a mom more than anything else. I want another chance.

facebooktwittergoogle_plusredditpinterestlinkedinmail