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Posts from the ‘Sickness’ Category

Letting go of a Dream

There’s a letter on my dining room table. A single page form letter that has arrived in January for the past six years. It’s sitting there, innocuously tucked amoung the bills, waiting for a response. Every year I reply in the same way, with a check and a groan and a dream. This year will be different.

The letter, so innocently sitting there, is a letter from a storage facility. A Reproductive Storage Facility that holds what we one day hoped, would allow us to have another child. We knew it wouldn’t be easy. That it would require multiple medical procedures, lots of luck and plenty of money – not to mention a surrogate – but paying that bill every year allowed us to hold onto our dream. The dream of being the family we envisioned. The dream of being parents to more than one. The dream of a time when my health and our finances would be strong enough that we could create another biological child and, every year when that letter arrives we weigh our options against those dreams.

The family talent show scene from Dan in Real Life. Man, I would have loved that.

The family talent show scene from Dan in Real Life. And, if you haven’t seen that film, do yourself a favor and see it.

I always wanted a big family. Being an only child I dreamed of belonging to something more inclusive than my tiny group of three. I imagined Thanksgiving family football games, boisterous Christmas dinners and annoying, yet charming, family singsongs. I wished for confidants that were more than friends, peers with features that mirrored my own. I wanted to be part of a team. To share a legacy with others. I stared wistfully at the extended family of Steve Carell’s character in Dan in Real Life and idealized a family like the one in Woody Allen’s Everyone Says I Love You. I knew it was impossible for my own childhood but I held on to the idea for the family I would create. I may not be able to have siblings or first cousins, but my children would. I would just have to recast the fantasy with myself as the matriarch.

I was told I couldn’t have more children at the same time I was told I was told I was dying. I didn’t have the opportunity to morn the lost possible future amidst the chaos of the immediate present. Because a pregnancy would almost definitely kill me, Sean – in the most final way possible – took care of our birth control issue, but not before storing what he’d lose in case what lay ahead wasn’t as dire as we were being led to believe. We prayed a future for me was possible and held on to the hope another child might be as well. We paid that storage fee every year feeding that possibility.

A letter amongst the bills.

A letter amongst the bills.

When the letter came this year it felt different to me. It no longer held the siren song of a family of four. It just looked like an incredibly expensive bill with no realistic purpose. My health is good but it fluctuates. I don’t have the strength or energy I’d like. I worry I’m not able to give enough to the child I do have, let alone to care for another. And if I’m being honest, no matter how much I’d like to, it would be impossible for me to keep up with two kids without full time help. I don’t want to take from the child I do have to give to one I think I should have. We hold our own with one. We manage. We’re happy. I’m stable. Why can’t I be satisfied with that?

There are times in life when you have to let go. Where holding too tightly to one thing makes it impossible to move on to another. Sometimes you have to close a door, no matter how much you wish it could stay open.

imagesI fixated on the idea of another child so clearly I manifested a person I felt was missing. I have a name, a face, a sense of who she’d be. I realize I could have easily had a pack of boys but, for some reason, I feel it’s a daugther that would have arrived. When I think about her my heart breaks. As if I’ve left her on a shelf somewhere. This person that belongs to me that I’ve neglected to claim. I know she’s not real but the idea of her found it’s way so deeply into my heart it got into my head. I realize now it’s unhealthy to keep holding on and the time has come to let go. Even if we could afford IVF, egg extraction, a full time night nurse/live in nanny AND keep up our current lifestyle with two children, would I even want to go back at this point? Do I want a newborn again? Could I handle six more years of diapers and potty training and mindless, random day filling? I’m just at the point where I can get excited about my career again. I want to reconnect with my ambition. I dream of a house of my own. I miss travelling. I want to show Loch the world. And, frankly, I need to be alive for all that to happen. Maybe I’ve spent too long dreaming of the “perfect” family I’ve been unable to see my family is already perfect.

IMG_2056I’ve been there, present and involved, for every aspect of of my son’s life. We’re incredibly close. What I’ve been able to do for him, the time I’m able to give him, has been a blessing to us both. I don’t want to keep thinking about what could have been, staring at my friend’s other children wistfully. I want to accept that as much as I would have loved another child, it’s not in the cards for me. My life – my current life – is amazing. It’s a wonderful, glorious gift and it’s time to embrace that and let go of the rest.

So, this year we will not be sending a check. This year we will sign the “cryopreserved disposition consent” form. I will say good bye to the chance of any more biological children, the hope of a sibling for Loch and my desire for a house filled with voices. I will accept I am an only child with an only child and relinquish my dreams of the past to better enjoy the reality of the present.

With two signatures, a notary and a stamp our tiny family will move forward.

The first thing we’ll do is start shopping for dogs.

With love,

Leigh

Mini-Goldendoodle-Photos-1300x975

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The Spirit of the Season

After my last post I was determined to say something funny and light. I’ve become aware that when I write about not feeling well it makes people (especially those closest to me) slightly melancholy and I was hoping to give my nearest and dearest a bit of a break as the year begins anew. Unfortunately, the truth of the matter is, my health leading up to the holidays was a real struggle so, despite my best intentions for humor, I think the sincerest post I can commit to is what I learned over the past month while I was so sick. For those of you who find these types of posts upsetting, stick with me, I am infinitely better now and in many ways I would say my recent weakness has only changed me for the better.

———

Dear Loch,

When you were five, I planned a trip to the mountains for Thanksgiving that went completely awry. Unable to breathe on my own we spent 12 hours in our rented condo before abandoning our trip to come back down the mountain. Unfortunately, my declining health didn’t stop at sea level and for the next three weeks I struggled to breathe without the help of oxygen and complete even the most minimal of tasks on my own. Not since I was first diagnosed was my life uprooted in such a tangible way, and it’s been a long time since I’ve felt so afraid and angry. Your Dad did everything he could, staying home from work, shuffling me from doctor to doctor, taking care of all the things I usually handle. But, he is only one man and he can’t be everywhere at once or miss work indefinitely. We needed help.

fotoninja.nlWhen people discover I’m sick, they often say things like, “Well, if there’s every anything I can do…”. It’s a lovely sentiment and I sincerely appreciate it but my standard response is always something like, “Thank you. That’s really kind. Hopefully I’ll never need to take you up on that offer.”  If I’m being honest though, the truth of the matter is, I don’t want anyone’s help. Up until recently I found the whole idea of taking someone’s help rather distasteful. I’m a busy and efficient A-type person and I pride myself on my ability to get s*#@ done. It’s part of my self worth. To accept help would mean I needed help, which, on some level, diminishes me. It makes me feel needy and broken. Though offers came from genuine, altruistic places, the thought of taking people up on them made me feel like a failure as well as shining a big, glaring light on the one thing I was trying hardest to ignore: the fact that I was sick.

pinterest.comI don’t want to be sick so, I pretend I’m not. I realize it’s a little ostrich-y but I try incredibly hard to keep life as close to what it was before my diagnosis as possible. I fight reality tooth and nail in a wayward attempt to hold on to my pre-illness identity. It’s incredibly important to me. So, while I may smile and agree to the idea of taking help if need be, internally I feel like…Nope, I got this. Don’t worry about me. I’m fine.

Up until recently only the very closest people in my life have seen the toll my illness takes on me. Not even my mother knows the extent of the strain. Your Dad is the only witness to my weakest of moments, my outbursts and rages, most of which seem to come in the middle of the night. It has always been important to me that I appear normal to the outside world. Better than normal. Great. Pulled together. Highly functioning. I don’t want to be judged or liked, written off or underestimated, based on my illness. I want people to see me, not the potential ticking clock.

We’ve had people reach out to us in the past. The kindness and generosity of some of our friends has truly humbled me. But what happened in the weeks leading up to Christmas struck me on a completely different level. I was so sick, so weak, so disturbingly incapable of taking care of myself I had to let go. I had to stop holding so tight to the wishes of my ego and take the help being offered to us with grace. I had to accept that I needed assistance on the most basic of levels – help driving my child to school and taking care of him after, help making meals, help going to the flippin’ grocery store. I couldn’t do anything on my own and for as many times as I’ve said “No Thank you” over the past years, I said “Thank you” over the past weeks, and it was a completely humbling experience.

bottomTo benevolently offer to help someone without thought for yourself and frankly, at an inconvenience to you, is practically unheard of these days. Our closest friends in Los Angeles rallied around us. They joined something called “Meal Train” which allowed them to sign up for duties on a shared calendar and communicate via email. They kindly left me out of the loop because it quickly became obvious that even the simplest of questions like, “How do you feel about chicken for Thursday night?” had me gut reacting with statements like, “Don’t worry about it. Please don’t anything. I’m ok.” So, they just stopped asking me. The whole experience was unbelievable. My friend’s cleaning lady showed up at my house. Groceries were on my back door. Meals were in my fridge. My child was happy and busy with playdates and dinners. These wonderful people took over the reigns of my life so I could rest and get better. I was beyond touched and grateful but I honestly struggled with how to properly respond. I had no point of reference for this type of support, this level of kindness.

Truthfully, I panicked. What if this was my new life? What if these amazing people, who were being so kind now, ultimately saw me as a burden? I couldn’t possibly or sufficiently thank them enough. I felt as if I would “owe” everyone for life and never be able to deliver. I worried my needs upset the balance of our relationship. I felt “less than” myself, as if I was no longer a peer or an equal but someone beneath them. A charity case rather than a friend and as I started to feel better, I wanted to jump right back into my life. I wanted to stop the help machine. I wanted to go back to normal but I was convinced not to. With all the understanding they could muster, your Dad and Granny told me slipping right back into my life full speed was going to be a mistake. That my friends were helping in good faith and I should accept it with the same respect in which it was intended. They believed the best thing I could do for everyone who was going so far out of their way to help was to get well – really,truly well. Taking care of my family on my own would come. My friends weren’t doing so much just so I could get sick again. They weren’t planning to lord their compassion over me. They weren’t looking for endless, groveling thanks. They were supporting me because they liked me and wanted to see me well. As Sean said, “If it was one of them, wouldn’t you do the same?”

thegreeeneyedladyblog.com

thegreeeneyedladyblog.com

The answer was a resounding yes. Yes, of course I would. I wouldn’t help someone to make them feel weak or small or to get kudos or presents. I would lend a hand because I could and I would do it without question. I had to learn to take help the same way.

Once I stopped fighting it was astonishing how the experience opened up my heart. It was extraordinary to be the recipient of such an outpouring of love. To accept that was ok to need people. To embrace the fact I wasn’t able to do it all and allow so many people come together to assist us. The experience humbled me in a way I could never have expected. Instead of making me feel weaker I felt stronger. I came out of the situation feeling I could (and should) do more to help others. People being kind and gracious to me inspired me to be kind and gracious to others. I suppose that’s why the concept of “paying it forward” works. If someone is good to you, it incites you to be good to others. The truth of the matter is, NONE of us can do it all on our own, and when we truly accept and embrace that, the world has the potential to become a much better place.

helenkellerquoteLook around in your life baby. Offer to help those who might need it and graciously accept relief when it’s offered to you. Help is not just for people who are sick, it’s for anyone that could use a little lift or love. It’s not lost on me that this entire experience happened at the time of year when we’re supposed to be looking out for our fellow man. The period of time when goodness and compassion come back in style. “So this is Christmas, and what have you done….”

My friends didn’t help me because they wanted to feel they’d done charity before the holidays.  They helped me because they thought I needed them, and I let them because they were right. The same circumstances could have occurred in April or July and I believe they would have done exactly the same thing. It’s just that with the overlapping of this time of year I feel just a bit more encouraged for the state of the world. That for all the selfish, me first behavior we see every day, there are still people are innately good, who look out for one another, who treat others as they would be treated, and that, my love, gives me hope.

Look out for others Loch, and let others look out for you. In a world that’s become so increasingly insular, it’s important we realize how very much we are all still connected.

From my heart to yours,

xo your mommy

earlymama.com

earlymama.com

Eye Opener

I know I’m sick. Obviously, I know.

I know I’m sick because it changed my life. Having PH stole my ability to have more children, drains my family’s finances and emotions and forces us to live under the constant stress of my potential death. That being said however, I’ve always felt lucky. I live as close to normal a life as I can possibly hope for. I’m not on daily oxygen, I don’t have a port in my heart, I eat what I like (though I should probably be more aware), and I’m able to play an active part in almost every aspect of my life.

I may get more tired than most, have a hard time with humidity and changing barometric pressure and, because I already live under a high level of stress, have a tendency to freak out more than necessary when things go awry, but I feel blessed. I could be dead by now. I was told I would be, and yet here I sit blathering on about my life in the hopes that my words will someday connect with my son and, for now, to others who may be interested.

Even knowing all this, I’ve found I can still be surprised and flattened by the reality of my situation. My illness continues to teach me something all the time.

My kid waiting to go to the mountains. Let's go people! The wait is killing me!

My kid waiting to go to the mountains. Let’s go people! The wait is killing me!

For the holidays I planned a trip to Mammoth for my family (visiting parents included). I can’t ski anymore but Sean and Loch love it so it seemed like a special way to spend Thanksgiving. I pictured my boys happily shushing down the slopes while my parents and I reconnected roaming around the village, reading by the fire, and relaxing in the sun and snow. I planned the trip six months ago. I found a lovely three bedroom cabin, booked lessons and rentals for Loch and planned out the meals with my mom. The day before Thanksgiving my whole family piled into our car, complete with new roof rack storage bag and Christmas presents, and started our drive to the mountains. As an afterthought we included an R2D2 looking oxygen concentrator just in case I had any trouble with the altitude. I wasn’t particularly concerned. We’ve been to Big Bear quite a few times and I’ve never had a problem, but since Mammoth is 2000 feet higher I thought it would be better to be safe than sorry. Little did I know….

photo 2 copyThe drive was amazing with straight, open roads and America the beautiful stretched out before us. Mountains, plains and red rocks as far as the eye could see, almost all of it uninhabited. If I didn’t know better I would have guessed we were in Montana or some other Big Sky territory. With about 45 minutes left in our trip we stopped at a fabulous bakery for sandwiches and talked about our plans for the mountains. Then, about a half way into the last leg of or trip, I started to feel off.  It felt as if I was breathing through a snorkel, labored and unnatural. When we arrived at our rental I took my blood oxygen level right away. You want your oxygen saturation levels to be in the 90’s. Preferably the very upper 90’s, around 97-100%. Exercise and exertion will drop your levels temporarily but they always bounce back. I typically fluctuate between 94-98% at rest and drop to 87-89% during “exercise” like walking  (82-85% if I’m feeling crazy and try to walk and talk at the same time) but I always snap right back to the 90’s after I stop moving. Here, in the parking lot of our rental unit I was at 83% at rest and it felt extremely uncomfortable. I sat uselessly in the cold of the outside structure waiting for my family to unload the car. When the car was empty Sean walked me upstairs and, with that minimal exertion, my levels dropped to the 70’s. My snorkel had become a straw and it was truly frightening. Sean worked fast and had me on the oxygen concentrator as soon as he could. It was all I could do to just sit down and regulate.

photoSo there I was, a blob on the couch, tethered to the wall, unable to help or contribute in any way. Conversation was beyond my capacity. Even with oxygen, my levels were still in the 80’s and I felt miserable. In the span of a half hour I became a completely different person, and that person was really sick. As I said before, I knew I was sick, I just didn’t know I was this sick and the altitude cleared that right up for me. At one point I got up to put on warmer clothes. As I walked to the bedroom my head whipped back twice as my oxygen tube got stuck  first on the fooseball table and then again on the doorknob to my room. It was infuriating and depressing. In frustration I ripped  the cannula out of my nose and changed without it, but when I started to feel lightheaded I found my oxygen levels had dropped to a dangerous 69%. I was dizzy and nauseous but mostly I was really scared.

Mind over matter right? I’d planned this trip. We’d driven seven hours to get here. I’d booked three full days of non-refundable lessons. We’d prepaid our unit. Everyone was counting on it. No matter how terrible I felt I had to man up. I just had to adjust.

photo 3But I couldn’t adjust. As the night continued I felt worse and worse. The oxygen concentrator kept my immobile body at 90-91% but it was terrible. The slightest movement dropped my levels exponentially and I felt trapped, like I was confined to a box unable to move. I tried to join everyone for dinner and catching a glimpse of myself in the dining room mirror, I saw a person I didn’t recognize. An ashen faced girl with a tube attached to her face. There was no way I could eat. At the very least, chewing limited my ability to breathe. Eventually I gave up and moved back to the sofa. I texted my doctor and his advice was clear. Leave. Go home. You shouldn’t be there. He said he would try and find someone to get me a portable oxygen concentrator but it would be difficult seeing it was a holiday. I told him even if I got one it wouldn’t be useful. The slightest movement made me light headed. Talking was a struggle. I certainly wasn’t walking around the village or going out for dinner any time soon.

I struggled with what I should do. I felt responsible for everyone’s good time. I’d planned this trip after all and we’d waste so much money if we bailed. I didn’t want to disappoint Loch or my parents and I wasn’t even sure what we’d do for five days with no plan back in LA. But when Sean asked me what I wanted to do, I couldn’t help myself, self preservation usurped socialization and I burst into tears. I told him I had to leave, I wanted to go home. That I couldn’t take it. It felt like I was dying and it was torture. I knew my choice would ruin it for everyone but as far as I could see there was no choice. I was physically forced to put my needs above everyone else’s and I couldn’t second guess it.

Cannula nosed Mommy looking at new lego castle with her very excited (and slightly nervous) little man.

Cannula nosed Mommy looking at new lego castle with her very excited (and slightly nervous) little man.

To everyone’s credit, no one made me feel bad about my decision. In full support and without a hint of complaint, everything that had been unpacked was repacked and loaded into the car. I spent the night dozing on the sofa, too afraid to lie down flat to sleep and Sean lay on the floor by my head. He could have slept on the other sofa but he said it felt too far away. He wanted to be close if I needed him. Loch was disappointed but rallied as best as a 5-year old can. Opening all his Christmas presents from my parents helped.

After breathing, Lochlan’s reaction to the situation was my biggest concern. I knew he’d get over the disappointment of not skiing, but this was the first time he’d really witnessed how sick I was and I could tell it was scaring him. At one point he came over and quietly said, “I look at you and I think you can die from this. Can you die from this?” I said, “I hope not baby.” Then he said, “If you die I’ll just cry and cry.” I said, “I’ll cry too baby.” He looked confused and responded, “How can you cry? You’ll be dead.” I said, “I’ll be crying in heaven because I’ll miss you so much.” The whole conversation took less than a minute and it almost killed me. He was so sweet and understanding but I could see the hints of confusion and fear on the periphery. I told Sean I was afraid Loch would either start to see me as a burden, someone who’s illness ruins his good time, or shut me out as a form of self protection, in hopes of making my leaving him in the future less painful. Either way it broke my heart.

Loch only got to play in the snow the first night. He made, very apprapo, an angel.

Loch only got to play in the snow the first night. He made, very appropriately, an angel.

At one point Loch woke up crying and it roused me from sleep. I went to his room but Sean, already there, silently encouraged me out of the room. Later he told me he was trying to help me, to let me know he had it under control and I shouldn’t worry, but what I felt in that moment was that Loch didn’t want me. That he was crying because I’d disappointed him and Sean was attempting to protect me from the hurtful things he was saying. Lying on the sofa listening to my child cry was devastating. His sobs made me feel helpless and crushed. I imagined this must be what it feels like to die and leave your children behind. To be an angel in the room watching someone else comforting them but unable to help because you’re gone and also the cause. I fell asleep crying for what might be.

As we drove down the mountain the next day I apologized for ruining the trip, but I wasn’t sorry we were leaving. About 2000 feet down, it was as if my power had been turned back on. The straw was gone and I could finally breath normally. The lower we travelled the better I felt and by the last 3 hours you could almost forget I’d been sick at all.

On our way back down we stopped again for sandwiches. I look a little worse for wear but it was just a relief to be able to breathe on my own.

On our way back down we stopped again for sandwiches. I look a little worse for wear but it was just a relief to be able to breathe on my own.

I thought I knew how lucky I was. I thought it was enough to conceptualize how much worse I could be. But until I felt it so clearly in my own body I didn’t truly understand. I might be looking at a future without mountains or cities at altitude, but at least I’m still able to hope for a future. The whole hideous process was a reminder of how wonderful my life is. How much I have to lose and how, despite all my awareness, I can still be reminded of how much I take for granted. It also showed me that there are times in life when we have to put ourselves first, not out of selfishness, but out of self preservation and there’s no shame in it. It’s hard to admit weakness and ask for help, but you have to respect yourself enough to protect yourself, and you don’t have to be sick to do it.

I am thankful for a lot of things: my wonderful husband who’s there to protect me even though he can’t fix me, my darling son who’s heart I will do everything in my power not to break, my parents who’s company I still crave despite the fact we’re all adults and have our own way of doing things, but most of all, I’m thankful for the fact that I’m still here, as me – not some sad, sick version of myself. My life is blessed. I’m angry and scared as hell but I’m lucky. If this weekend was a wake up call, I heard it and I’ll do my  best to appreciate it for all it’s worth.

Love and blessings to you and yours for health and happiness.

God bless,

xo leigh

zen-mama.com

zen-mama.com

Blink of an Eye

For my birthday Sean bought tickets to the Hollywood Bowl. 10 years in LA and I’ve never been. Every year I say, “You know what I really want to do this year? Go to the Hollywood Bowl” and every year we never quite get around to it. Life’s like that. Best intentions and all that. This year though Sean took that extra step and actually bought the tickets to John Williams conducting the LA Philharmonic and I was so excited. Maestro Williams conducting a collection of his greatest movie scores – Star Wars, Jaws, ET, Superman, etc. – a tribute to Henry Mancini and Blake Edwards and the evening hosted by Mary Poppin’s herself  (Mr. Edward’s widow), Dame Julie Andrews. It was a marvelous. We had our picnic basket, our wine & cheese, our squares of after dinner chocolate. The night was gorgeous and warm and Sean and I were able to relax and reconnect in a way you can’t do at a traditional movie or dinner. It was magical and, as the music swelled and images swirled on the screens, my hand interlocked with my husband’s, I looked up to the heavens (and I say that without dramatics because there is a lot of sky at the Bowl just begging to be spoken to) and said a silent prayer to God for how happy and lucky I was.

The Bowl really does look like this shot from alumniconnections.com

The Bowl really does look like this shot from alumniconnections.com

Near the end of the concert, while the light saber wielding crowd delighted to the multiple scores from Star Wars, I excused myself to go to the bathroom. Sean told me to hurry or I’d miss it, so I scooted out of our seats and hustled to the closest washroom which, because we were technically in a theatre built into a cliff, turned out to be up an extremely steep hill. As I arrived at my location I was instantly aware I’d made a terrible error in judgement. I found myself hopelessly out of breath. Like, really out of breath. Once in the stall I put my head between my legs hoping to counterbalance my lightheadedness but it didn’t work. I couldn’t get a full breath and I couldn’t think my way out of it. No matter how hard I tried to calm down and breath normally I couldn’t will myself better, and it quickly became clear I was going to pass out. I knew I had to get out of the stall or people would simply ignore me thinking I was just some drunk girl who’d passed out while the timpani banged out Darth Vader’s theme. I crawled out of the stall on my hands and knees and just before I lost consciousness I saw one pair of shoes in a stall down the way. She’d find and help me right? With that I let go and fell from my hands and knees to my shoulder and face.  When I came to I was lying on the bathroom floor (the bathroom floor!!! Gross! My poor skin!), my head was killing me and those shoes hadn’t moved at all. I lay there looking at those sensible, beige pumps while my breath normalized and by the time she came out I was sitting up leaning against the wall.

I left this cuteness to go pass out in the bathroom. What a fool I am!

I left this cuteness to pass out in the bathroom. What a fool I am!

Not surprisingly she ignored me. I’m not sure what she thought I was doing. If I was 10 years older I’m sure she would have asked if I was ok, but being younger I think she couldn’t help but silently judge me. I look too healthy to have anything really wrong with me right? She left and I said nothing. When I finally had the energy to stand up I washed my hands, splashed water on my face and slowly made my way back down to Sean. He looked at me when I got back as if to say “Where have you been?” and I burst into tears. I felt completely traumatized. Just thinking about it replayed in detail how awful it had been to be unable to breathe, to know I couldn’t help myself and to be reminded that no matter how happy I was, I was also really sick. That, combined with the fact my head was absolutely throbbing where I’d hit it, caused me to silently sob through the second encore while Sean packed up our stuff.

My bump. It hurt for a week. I even needed a brain scan to rule out a bleed. Post concussive syndrome!

My bump. It hurt for a week. I even needed a brain scan to rule out a bleed. Post concussive syndrome!

The next day my head was a sight to behold. It looked as if I’d had a derma implant with a golf ball. My shoulder was aching and I was so overwhelmingly tired that my parenting consisted of allowing Loch watch TV all day. As a side note, he told me it was “THE BEST DAY EVER!!!” Around 4:30 I texted Sean, who had left our house at 6am for work in the desert, to come home. My text read: When do you think you might be home? I don’t mean to alarm you but I think I have a slight concussion. As I lay in my bed waiting for his answer, the sounds of Phinnus & Ferb drifting into the room, I started to think about how quickly things can change. Here I was moments before saying my silent prayer to God about how wonderful my life was and then, without warning my disease, physically and metaphorically, knocked me me on my a*#. Or in this case, my head.

Things have a way of changing instantaneously. For the good and the bad. I knew on our first date I’d marry Sean. The world just shifted. I walked out of the restaurant with a different life than when I’d walked in. I grew a baby in my body for almost 10 months but was the same girl until the night I went from being just Leigh to Loch’s Mom. I went to the doctor 6 months later thinking I’d developed asthma and 4 hours later was told I had 2-3 years to live. It can all change in the blink of an eye. Everything can shift in a heartbeat and that knowledge should act as a reminder not just to appreciate every great moment, but also not to get too mired down in the dismal ones. What do they say? The only constant in life is change?

I'm writing a memoir myself. The strength and bravery it must have taken for Matthew to have written this one is inspiring.

I’m writing a memoir myself. The strength and bravery it must have taken for Matthew to have written this one is inspiring.

I was recently at Target cooling my heels while Loch entertained himself in the toy aisles and I picked up a book called Two Kisses for Maddy: A Memoir of Love and Loss by Matthew Logelin. It was the story of a husband who lost his wife to a random brain embolism the day their daughter was born. Written from his perspective I was pulled into the immediacy of the chapter of when it all went down. He vividly expresses the confusion he felt when his wife collapsed walking the halls of the hospital. How helpless and angry he was as the doctors buzzed around while the code alarm blared through the halls. How surreal it felt making calls to people expecting the happy “we just had the baby” song to the “you better get down here they don’t think she’s going to make it” terror. When his wife dies he describes the floor opening up, the fury he felt towards the placating grief councilor, the horror of the realization that he was now completely alone with their newborn, his devastation knowing his new daughter would never know her spectacular mom and the utter confusion that drowned him trying to rectify how his perfectly healthy wife could just be gone. I found myself moved to tears right there in the superhero aisle.

I know what it’s like to have your life open under you. To feel as if you’re drowning in your own reality. Reading Matthew’s words however, I was also reminded of how lucky I am. How different my story could have gone – could still go – and how very much I must try to appreciate every day. People are always saying, “I could get hit by a bus tomorrow”  and though you probably won’t, metaphorically the possibility is there. Things change and things can change quickly. Whenever I’m feeling upset I often think back to the days I was told I wasn’t going to live and my perspective immediately shifts. I do this when I’m mad at people too. How would I feel if they were gone? If I could no longer speak to them? It’s hard to stay mad when you consider the alternative and count your blessings. photo copy 2 That being said however, I think it’s too much to ask of ourselves to appreciate every day, to always be in the moment, to live only in the present and to appreciate everyone all the time. I believe it’s a noble thing to attempt and something we can all hopefully accomplish at various moments in our life, but I don’t think we should put pressure on ourselves to be zen in every instance. When we do that it just becomes yet another thing to get down on ourselves for, to feel we’re failing at.  I think the big picture is simple awareness and the acknowledgement that nothing ever remains static. If your life is good, be grateful. If your life is tough, be hopeful. Try not to dwell. Keep moving and growing. Appreciate and celebrate the moments and people that bring you joy. Tell people you love them. Be kind to others. Create memories and relationships that will live on after you’re gone. Make the most of your life because you’re not getting another one and it can all change on a dime.

Passing out on the floor of a bathroom reminded me to take stock of all I have to be grateful for. That no matter where I’d like my future to go, I must appreciate my current reality and truly saver my moments because I don’t know how this is going to play out. Passing out forced me to stop and acknowledge my reality and, for better or worse, embrace it. I may dream of a bright future but I have to care for myself in my present so I’m around to enjoy it.

For now that means more unique dates with my husband and not walking up hills at speed.

Duh.

xo leigh

photo copy 3

Lost Causes

I had a favorite aunt growing up. You know the one. The cool aunt. Growing up she was my absolute favorite family member. I adored her. She was 11 years younger than my mom and gorgeous and totally with it. She’d been a model and actress and for me the sun basically rose and set on her. Over the years she and her husband joined us on our family trips. We’d visit her at my Grandmother’s cottage. I’d spend hours pacing outside her bedroom waiting for her to wake up. We’d celebrate holiday’s and special occasions.  She was wonderful. I was never more excited than when she was joining us.  As time passed however her relationship with my mother became strained. They couldn’t see eye to eye over the care of my grandmother and the control of her finances and things became increasingly tense. They stopped joining us for events and holidays. There were no more trips, communication broke down and things were said that were difficult to forget. Essentially, as it is with many family dramas, it came down to money. As I understand it my aunt felt cheated out of a part of her inheritance because my grandmother decided to include me in her will. She felt my mother had somehow deliberately (and maliciously) orchestrated it and, despite the fact that many of my friends had received inheritances from their grandparents, my aunt felt grandchildren were not typically included in wills and she was the one losing out. My mother tried to keep me out of it. It was her hope I could remain a neutral party retaining a relationship with my beloved aunt despite the fact that hers had broken down. As I saw it, my mother went above and beyond to make sure my aunt felt compensated and taken care of and I kept believing the whole thing would blow over. It didn’t. In the end my aunt made it clear that I had to choose between her version of the story and my mother’s. There was no middle ground and this summer when I wrote her to see if Loch and I could visit when we were home, she turned me down. She didn’t want to see me. Family dramas are terrible, hurtful things. Family is supposed to look out for one another but all too often – especially around care of the elderly and questions regarding money – things have a way of going off the rails.

my2ndheartbeat.wordpress.com

my2ndheartbeat.wordpress.com

The thing is, even with all signs pointing to let it go, it’s over, it’s never going to happen, I still believe the relationship is salvagable. I just don’t believe in lost causes. Look, I was told I had a maximum of 3 years to live and I’m still here. Who knows how long I have left but I don’t believe it’s a done deal. I realize there are times in life when you have to just walk away. When you say hey, it’s time. I can’t change this. Things are not going to be different and I can’t beat myself against the wall any longer. There may be times like that but I don’t believe this is one of those times. I think if you aren’t ready to give up, you have to continue to fight, to hope, to believe.

raneedillon.blogspot.com

raneedillon.blogspot.com

I have a old friend in Toronto who’s battling metastatic breast cancer. They’ve found it in her breast, lungs, and kidneys. It’s aggressive and hideous and my heart is broken for her. Two girls from my High School died this summer of a similar thing. I recognize the threat is real. I know terrible things happen to good people every day. I know being a mother, or a wife or a dear friend doesn’t make you safe. I realize my friend is dealing with a terrible diagnosis but I also know that miracles happen every day and I choose to believe she can be one of those miracles. It’s not over until it’s over.

Recently I spoke to a friend who’s struggling with her place in the world. What she should do. Who she is. What direction her life should go. She told me she believes people are only able to be positive when things are on an upswing. That without the upswing, it’s difficult not to get mired down in the negatives. I thought a lot about that. In many ways I suppose it’s partly true. I struggle on days when I’m feeling really sick or things aren’t looking good. My hopefulness has a way of becoming clouded by fear and doubt and I’ve been known to wallow.

istopforsuffering.wordpress.com

istopforsuffering.wordpress.com

That being said however, I’ve never stayed in that place for very long. Even before I was sick, when my career or love life was in shambles, I never felt hopeless or believed things wouldn’t eventually work out. I believed I just had to keep working till my life met my dreams and, in those cases, I think the positivity came before the upswing. I believe my attitude changed my circumstances and not the other way around. I’m convinced that’s how I met Sean, how I found writing and, for the most part, how I’ve learned to live with my disease. Talking to my friend it was as if she no longer believed anything good could happen. Every hopeful thing I said was met with caustic, laughable disbelief. It was like throwing a life ring to a drowning person who keeps kicking it away. She seemed adrift in a sea of hopelessness and it was exhausting to watch. It’s hard to help someone who refuses to be helped.

Thinking back I hope I just caught her on a bad day. That, despite her attitude, she doesn’t see her future happiness as impossible. I hope she’s not buying the “everything is crap and always will be” line she seemed to be selling. I hope there’s still a part of her that sees her amazing potential. A small voice that trusts all her education and passion will eventually be rewarded. A hidden part of her psyche that believes she’s worthy of love and that the tragic events of her past don’t define her. That’s what I see when I look at her. Despite all her confusion and negativity she’s an amazing person, and if she could just believe in herself, I know she’d find her way.

thecoverjunkie.com

thecoverjunkie.com

I have hope. I hope my aunt realizes one day a mistake’s been made. That she forgives my mother for her supposed slight and my mother is able to forgive her for everything that came after. I dream my son will get to know the woman I loved so much and we will have the opportunity to reconnect. I believe a friend of mine who seems to have moved past our 20-plus year friendship will eventually come back to me because we have too much history to let  things go so easily. I pray a miracle makes my friend cancer free and she’s able to recover and raise her adorable twin girls. Finally, I have faith my genius friend will eventually find her place in the world, set down roots and believe in love again.

I don’t believe in lost causes. I believe in hope.

Look at me, I’m still planning to have grandchildren.

xo leigh

favim.com

favim.com

When Polite Becomes a Problem

Dear Lochie,

I’ve spoken about Manners before, about what kind of behavior I expect from you and what kind of boy I want you to be, but I feel the need to tell you that there will be times when getting caught up in manners or “being polite” can hold you back, disappoint you or even put you in awkward or unsafe situations and, at those times, I give you full permission to courteously put your well being above your social graces. There is such a thing as being too nice. Bosses will pile work on you. People will take advantage of you. You’ll stay in relationships too long or miss opportunities waiting for someone to give you the go ahead. Though remembering you’re part of a bigger human picture and acting accordingly is key (the world is not all about you), you must also be aware that no one will look out for you better than yourself. You are your own champion, protector and catalyst. It’s up to you to take care of you. In the film The Girl with the Dragon Tattoo the villain talks at length about how frequently people put themselves in danger rather than risk being impolite. He questions why people don’t trust their instincts and allow their fear of offending to outweigh any other concerns. Statistically I’m sure women do this more than men as we’re predisposed to be perceived as “nice” and more readily inclined to be “pleasers”, but you should be aware this kind of situation could also happen to you. I often wonder how many people are victims of crimes when they were just trying to be nice? How many people put themselves in uncomfortable situations rather than chance insulting someone? How many of us put up with things we hate just to appear agreeable? Look, nice is wonderful, it’s a lovely, hopeful way to behave, but be mindful it has a flip side that can allow people to take advantage of you and that goes from everything from violent crimes to crappy hotel rooms.

marsheating.socialtract.com

marsheating.socialtract.com

Felonies aside, I want you to be aware of the possibly negative results when you put “nice” and “polite” above all. Having and using courtesy is something I’ll always encourage but your well being takes precedence over other people’s “feelings”. It’s not impolite to respect yourself enough to speak up for what you need. It’s not rude to put your safety and well being first. The difference between being nice and being taken advantage of is measured by how you feel. Do you feel good about yourself, respected and well liked, or do you feel put upon, overlooked and marginalized? Paying the check for your friends is nice. Being expected to do it every time is insulting. If you’re confident in your worth you won’t allow yourself to be undersold.

I recently tried out a new acupuncturist. She was a Chinese national and didn’t speak much English but, unlike with customer service operators, I was ok with that. Plus, she took my insurance so I was willing to give her a go. As she read my intake form I started to get the impression she was in over her head. I have a pretty rare disease even for someone with a medical degree and English as a first language but, I didn’t want to discredit or undermine what could be her vast array of skills, so I waited while she read. After a short while she seemed to realize I was still there so she strapped a blood pressure cuff to me as she continued reading. Now, I’ve had my blood pressure taken a lot, both at my doctor’s office and at home, so I’m extremely familiar with the procedure. I know how it feels, how much time it takes, how tight it gets. This machine however was taking an extraordinarily long time and only continued to get tighter. As the pressure went from uncomfortable to painful I kept thinking it was going to stop. That it would hit the sweet spot, register and loosen up. It was hurting me but I didn’t want to say anything. I suppose I didn’t want to bother her. As it moved from painful to alarming, my desire to be perceived favorably was superseded by my unequivocal need to get the horrible thing off. The scene played out a little like this:

bpa.co.uk

bpa.co.uk

Tight, grimace.

Tighter, look at her for guidance.

Tighter, (to self) Suck it up. Suck it up. It’s almost over.

Tighter, “Ow, ow, ow!”

Tighter, (actively ripping the cuff off my arm) “OW! OW!”

When I finally got the Velcro undone I found a whole chunk of skin had been pulled through the metal loop of the cuff. It was just sticking out as if it was extra waiting to be cut off. I actually had to physically extricate my arm from the cuff by manually pushing my now obviously bruised skin back through the loop. It was horrible and I was furious, but instead of getting up and storming out like I wanted, saying something like “This isn’t going to work. Sorry.” (I hardly wanted someone sticking pins into me who couldn’t use a blood pressure cuff), I just sat there sore and sad.

I may as well have left because 10 minutes later when she asked “How do you know you’re actually sick? Because a doctor told you so…” with a skepticism that implied I might somehow be working with western medicine to create an imaginary issue, I ended up walking out anyway. It was too much. I had tried to be polite, but I couldn’t take it and my need to protect usurped my need to ingratiate.

blogs.telegraph.co.uk

blogs.telegraph.co.uk

I’ve had to advocate for myself more than most because as a sick person you quickly find if you aren’t looking out for your best interest few will. Too many things of too high an importance can fall through the cracks if you aren’t paying attention. Over the past five years I’ve learned to ask the questions, get the second opinion, double check the concerns and I’ve found that nothing is insignificant. Even the most minutia of details, like people who seem unsure when they’re about to draw my blood, matter and I’m not embarrassed to ask for someone else. I’ve become adamant about finding “‘the absolute best person for putting in a central line” because I’ve had too many hideous experiences to go through another one unnecessarily. Not everyone in the medical community is created equal and as my mother always says, “They didn’t all graduate top of their class”. If you don’t ask you’re just as likely to have a grossly swollen arm than a comfortable port. I realize people need to train on someone. I’ve just been around the block too many times to let it be me.

This is a view from a room at a top boutique hotel in NYC.  You don't have to say yes to this room. It's ok to ask for something different.

This is a view from a room at a top boutique hotel in NYC. You don’t have to say yes to this room. It’s ok to ask for something different.

As parents we’re great advocates for our children. If they aren’t getting enough time on the soccer field or we feel they’re being passed over for opportunities in school, we’re in there trying to sort it out, but if a similar oversight happens to us, all too often we’ll suck it up rather than risk being perceived as jerks or, heaven forbid, high maintenance. You must understand, it’s not high maintenance to know what you want and ask for it, it’s proactive, and more people should do it unapologetically. Speaking up for yourself does not equal rude. When I was younger I remember traumatizing my friends by letting waiters know something wasn’t right. They were always “soooo embarrassed” but I saw no issue with expressing myself. There’s complaining for the sake of complaining, sending meals back and generally just being churlish and snotty and then there’s replacing your recommended wine because you hate it or sending back a margarita because the bartender rimmed it in celery salt like a Bloody Mary. It’s perfectly reasonable to have things sorted out. It makes a tremendous difference to your enjoyment and I’m confident it’s completely acceptable behavior provided you handle the situation with class and civility. Putting up with something subpar just to avoid making waves doesn’t make you polite it makes you wussy. You may as well get what you want. Just be sure to acknowledge the effort in both tip and attitude.

doormat1

I kicked myself recently for not taking my own advice. Your Dad and I went to restaurant and our meals were so unpleasant we could barely get them down. If I’d made that chicken at home it would have been tossed but, aside from letting our waiter know we were disappointed, we continued to pick at our meals and ended up leaving the annoyed. It’s incredibly irritating to pay a fortune for dinner just to go home and eat cereal. The restaurant offered us a free dessert for our “troubles” but we didn’t take them up on it. It wasn’t about getting something we didn’t want for free, it was about getting what we wanted correct and we should have dealt with that. Ultimately, we just wrote off the restaurant and that’s unfortunate. We always liked it there and I’m sure they would have preferred making us new dinners over losing long term customers, but now we’ll never know.

It’s too easy to be taken advantage of these days. You can’t just assume the right thing will happen. Often, you have to insist on it. Sadly we live in a time where you also have to protect yourself more. Where your manners take a backseat to your safety. Your Dad and I sell a lot of stuff on Craigslist but with the recent situation of the husband and father who was killed when he took two men for a test drive of the truck he was selling on Kijiji, you can’t just assume people have good intentions anymore. In certain situations being distrustful and coming off cold is preferable to allowing friendly or trusting behavior get you in trouble. This isn’t to say you should walk around being an a*#hole and calling it protection, just that awareness is key.

stepstothesky.com

stepstothesky.com

Look, being a nice person is wonderful. People should think you’re nice. You should be nice. I’m not saying don’t take the time to help old people across the street or go through life distrustful of everyone, only looking out for “number one”, I’m simply reminding you to use common sense and good judgement, aware of the world you live in and it’s possibilities. Be courteous and respectful, making sure your sense of self worth doesn’t become a sense of entitlement, but don’t forget the only way you’ll ever really get what you want is if you’re ok asking for it. Sometimes the right thing to do, is the right thing for you.

The goal is to be polite, not a patsy.

I love you.

xo your mom

tumblr.com

tumblr.com

Perspective

I recently went to see the most recent movie from Nicolas “The Notebook” Sparks. I was going with my parents so we settled on Safe Haven with Josh Duhamel and Julianne Hough as a film we could all agree on. I wasn’t expecting much. I like romances but Sparks’ stories are pretty predictable and I find I generally waver between pleasantly entertained and slightly eye rollie. The only exception to this rule so far would be Ryan Gosling and Rachel McAdams in the aforementioned Notebook. The scene when they’re on the floor of the old plantation house elevates the film well beyond any typical feel good romance. Anyway, Safe Haven was exactly what I was expecting and was enjoying it well enough until I found I was becoming increasingly emotional. By the end of the film I was so overwhelmed I went to the bathroom and bawled my eyes out. The whole experience got me thinking about how our reactions vary so drastically depending on our perspective. The film had a different affect on me than everyone else in the theatre, except maybe my mother who was seeing it through my eyes.

Safe Haven (SPOILER ALERT) is about a young woman who escapes her abusive husband to find herself in a vacation town on the coast of South Carolina where she meets a handsome widower and his two adorable children. It’s relatively straightforward. She’s got trust issues, he’s still dealing with the struggle to move past his beloved wife, they fall for each other, love conquers all and, after her crazy ex-husband gets shot in the chest with his own gun, they live happily ever after.

safe havenThe thing is, I was supposed to be rooting for the couple. I was meant to see her fill the void left by the children’s mother. I was to hope she’d trust this marvelous man – only alone by a cruel trick of fate – and cheer when she finally let her guard down enough to see that not all men are bad and that she was worthy of love. As I followed the plot however, I became increasingly aware that the character I was most associating with was not the main girl, or the husband or even the children. The character I was projecting onto was the dead mother. For obvious reasons the mother was the character I found myself most connected to. There’s a scene where Josh explains his son “remembers his mother” while the younger daughter just “remembers the idea of her”. It was supposed to make me see that if Julianne could win over the son, the daughter was already hers and everything would just fall into place. I found the entire thing devastating. Loch is younger than the daughter in the film and I know should something happen to me now, he’ll never truly remember me and another woman will easily be able to take my place in his heart. The son in the movie is older, say 11, and he’s angry and confused by his mother being gone but also by his Dad’s interest in a new woman and I found that concept equally unbearable. But, because this film is about two people falling in love and not the story of how people deal with grief, after a few short scenes of minor tween attitude, the boy is equally won over by the successor and ready to move on. Nice for the child. Nice for the Dad. Nice for the new girlfriend. But I’m still sad for the dead mom.

Did I mention the dead mother shows up to befriend and get to know the replacement. Yep, so there's that too.

Did I mention the dead mother shows up to befriend and get to know her replacement. Yep, so there’s that too.

At one point Josh Duhamel looks through a stack of letters in his wife’s old office which has been left like a shrine. It appears the mother wrote a collection of letters to be read by her surviving family members at key moments in their lives, “To My Son on his Graduation” or “To My Daughter on her Wedding Day”. Those letters, all sealed and waiting, are there to make us feel for the husband, for the burden he’s carrying and the job he’s now doing alone, but I was weeping away in my seat for the woman who wrote them and what she had to leave behind. Later in the film when that same building burns to the ground (thanks to the unbalanced ex) and I wasn’t worried for the child who had to jump from the roof or the female lead wrestling her ex with a gun, I was worried for the letters. Those painstakingly written last hopes and dreams. The final thoughts of a mother who had to leave her family but wanted them to know she was still with them. I kept thinking “Save the letters! Save the letters!” and when they didn’t, I was a wreck.

safe haven with kidsAs it is with these kind of books and films however, there was a loophole. The letters, which were stored in a metal desk, were discovered intact when the husband roots through the debris after the fire. At the end of the film Julianne’s character, sitting on a beautiful, old tree swing, is given one of those letters. The letter is simply addressed “To Her”, meaning the woman who comes after, the woman my husband has chosen to love. As Josh and the darling moppets fish in the warm Carolina sun Julianne reads the letter. The dead mom’s voice over wishes her love and joy. She says she’s happy her son will have a mother and her daughter a confident. She says that she knows her husband must really love her because she’s reading this and she’s now able to move on because she knows her family’s taken care of. Julianne looks up, her eyes lock with Josh and they stare lovingly at each other. Their happy ending is all but guaranteed and all I could think of was the poor dying woman who’d been reduced to a disembodied voice.

Life is perspective. We hear in songs what we’re experiencing at the time. We react to words people say with the spin we feel in our soul. Someone having a baby is great news unless you just had a miscarriage or have been trying unsuccessfully for years to get pregnant. Getting an expensive present from your husband is lovely unless you know your family’s struggling with money. Birthdays make some people depressed and other people, like me, super happy. Our take on things is amplified by how we already feel. I was happy for the couple in the film but I didn’t care about them like I did for the woman who had to say goodbye before she was ready.  I’m not feeling as noble as she was about being replaced, though for the sake of Sean and Loch I know eventually I might have to adjust.

safe-haven-julianne-hough-josh-duhamel2There was one moment in the film I really appreciated. A second where they took a moment from courting to honor the memory of the person who was gone. The couple are at a particularly romantic location and Julianne asks Josh if he used to bring his wife there. He says yes and admits that for a while he tried to avoid places that reminded him of her because he thought it would be easier. He says he tried to put her from his mind, to not think of her… but he realized that wasn’t fair to her memory. That if he wasn’t remembering her, who would? He says, “She was wonderful and doesn’t deserve to be forgotten.”

Should I go, I would want Sean to find love again. I would want him to be happy. I would want Loch to have someone to love and mother him, to hug and kiss him and tell him everything was going to be ok. I wouldn’t want them to be alone but the thought of someone taking my place kills me. No matter how healthy it would be for them, I’m not ready to be forgotten. Right now I still believe I’ll beat my disease but, should I go down hill, I can see softening to the idea of being replaced. I can imagine a time where I’ll be at peace with the thought of simply being a memory and, with all the letters I write to Loch, perhaps I should take the time to write one to “Her” as well.

Sometimes the right thing to do is also the hardest. It’s all a matter of perspective.

xo leigh