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Posts tagged ‘living with illness’

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

Your Mom – A Get To Know You Game


I plan for you to love me. Respect me. Be annoyed by me. Appreciate me. Wish I’d leave you alone for a while. The whole gambit. But should things take a turn I didn’t expect, I still want you to know me. To know I loved you. To know who I was, warts and all. People that are gone have a tendency to be remembered as saints, and that’s a lot to live up to. I’ll tell you right now, I’m no saint. I’m nice. I’m loving. I’m friendly. I’m loyal. But I’m also a bit vain, slightly over analytical, have limited patience, am a worrier and a panicker and do all together too much swearing. The truth of the matter is, there is no way I can possibly let you know everything about myself from my posts alone, so I thought I’d supplement the process by doing a number of ‘Get To Know You’ questionnaires and sprinkling them throughout the blog. My personal fav, the Proust Questionnaire (often seen in the back of Vanity Fair), will be among them.

The most important thing for you to know about me is that I love you. You are the joy of my life. You are the best thing I ever did. Truly. 

Now writing this feels a little self-important (and long) but, should I not be around later, these might be nice things to know. These 50 questions are from and will hopefully give you insight into the little nuances that make up your mother.

1. WERE YOU NAMED AFTER ANYONE? No. But I do have the same name as Granny’s cousin Leigh, and almost had the same name as Granny’s cousin Brooke. Not sure why we stuck with family names, but there you go. I also know that Granny deliberately chose a name that “couldn’t be shortened” and then spent a good part of my childhood lengthening my name to things like, Leigh-dee, Leigh-dee-pa-dee-dee or Leigh-ski. My name meant continually telling people my name was not in fact short for Emily or Lesley or anything else, and the spelling has lead to a life of telling people my name is pronounced Lee and not Lay. When we named you, we seriously considered going with Locklan so everyone would always be able to phonically sound out your name, but between my name and half the people who call your Dad “Seen”, we figured if people wanted to mispronounce your name and call you Lowch-lan, let em. When it really came down to it, I can’t guarantee that continually correcting people – in front of everyone on the first day of class, say – didn’t somehow make me a bolder person. And bold ain’t bad.

2. WHEN WAS THE LAST TIME YOU CRIED?   I most recently cried in frustration at my continued need to ask for money from Granddad, and the subsequent shame I feel having to justify my life choices every time I do. Your grandparents are incredibly generous and without them we’d be screwed. Mostly it’s about me being sick. They pay for most of my medical bills, for my acupuncture and monitored exercise, and for the extra classes I put you in. They also help out when we get into a bind like when my old car died in the drive thru of McDonalds. Humiliating for your father ,who had to push the car out of the way. Fascinating for you, who watched the whole thing go down, and discouraging for me, who knew that I’d have to make a phone call to ask for money for the repairs. The thing is baby, we’re artists, and we don’t yet make the kind of money that we’d like. Our life is a struggle, and money, or the lack there of, is probably our biggest source of pain and discord. It’s pretty much the only thing Dad and I fight about. But it’s a heafty thing. I want you to be able to come to us for help if you need it (God knows I hope our financial future finds us in the position to help), but I would also steer you towards making your own money. Do what you love, just know you have to hustle and work. The bohemian life is only charming to a point. And asking your parents for money when you have your own kids…Sucks.

3. DO YOU LIKE YOUR HANDWRITING? I like my printing – and I do a mean bubble letter for signs – but I can’t do cursive and I’m pretty sure a handwriting person would have a field day with me, as my writing changes from day to day. It’s always one of 3 styles but they aren’t even remotely similar. It depends on my mood/fatigue, time constraints, and the necessity for legibility. But occasionally my handwriting will change right in the middle of a letter. Very weird.

4. WHAT IS YOUR FAVORITE LUNCH MEAT? I’m not really a lunch meat girl. I like salad sandwiches – tuna, egg, chicken, salmon – I like grilled cheese. I like the chicken sandwiches Granny makes with hunks of chicken and lettuce on white bread with lots of mayo, and I love PB&J – smooth not chunky – But deli meat? Not so much.

5. DO YOU HAVE KIDS? Sure do. Best kid ever.

6. IF YOU WERE ANOTHER PERSON WOULD YOU BE FRIENDS WITH YOU? Yes. I’m a good friend. A devoted friend. Plus, I’m usually the person that says something when others are too embarrassed and that often helps out.

7. DO YOU USE SARCASM ALOT? I do. I like sarcasm. I know people think it’s a snarky form of humor but a well placed sarcastic comment can bring a room down. I just try not to be cranky about it.

8. DO YOU STILL HAVE YOUR TONSILS? Yes. And my appendix. And my wisdom teeth. They never came down so I’m sure they’re still there…somewhere in my face.

9. WOULD YOU BUNGEE JUMP? Never. And I have to tell you babe, I’d advise against it for you too. Research is now showing that it can result in permanent internal organ damage. If you must get some mad thrills, I’d prefer you went sky diving. Your dad loved it and wants desperately to go again. Personally, I’d rather you both passed. But I’m making a solid effort to not be ‘that girl’.

10. WHAT IS YOUR FAVORITE CEREAL? Oh cereal! I love me some cereal. I eat cereal almost every single morning. Favorite ever would probably be Corn Pops (the Canadian kind, not the American kind) or Post Raisen Bran (not Kellogs) or Frosted Mini Wheats. Though lately I’ve been doing a lot of Cheerios and Granola. That’s the thing about cereal, you can switch it up with your mood. When I was little Fruit Loops were my favorite, but I only ever got them with Grand Mimi, or on our cottage’s opening weekend, when you got that variety pack of small boxes and they were included. When I became a college student living on my own, I remember buying a big box of Fruit Loops just because I could. To this day though, I can’t really eat them for breakfast. There more of a late night snack kinda thing.

11. DO YOU UNTIE YOUR SHOES WHEN YOU TAKE THEM OFF? No. I slip out of all of my shoes…and then I leave them everywhere. It’s a bad habit I share with you and your father. Our house is like an obstacle course of shoes.

12. DO YOU THINK YOU ARE STRONG? Physically. I used to be. Now, not so much. Emotionally, probably not. I’m pretty sensitive. Spritually, yes. I go through every day doing what I need to to survive and be happy. I just keep trying.

13. WHAT IS YOUR FAVORITE ICE CREAM? Haagen Dazs Chocolate and Peanut Butter. Which is weird because I’m not a chocolate and peanut butter type of girl. I don’t even like Reeses Peanut Butter cups. But this ice cream is ridiculous. I generally eat it right out of the carton, and when I lived alone in NYC I had to actually stop myself from buying it because I could eat an entire pint in one day. I’d stand in the kitchen and tell myself I’d stop when the ice cream was flat (meaning I’d evened it out on all sides) but then I’d get a PB swirl and it would go into the next layer and then I’d have to flatten that one out…It was like OCD eating. A close second would be homemade peach ice cream at the cottage.

14. WHAT IS THE FIRST THING YOU NOTICE ABOUT PEOPLE? Their clothes. It’s an easy one to see and make a call on from afar. And then the face. If I like it or not. Kind or not kind. Sour or sweet. Attractive or not…

15. RED OR PINK? Red. Pink and I were never close.

16. WHAT IS THE LEAST FAVORITE THING ABOUT YOURSELF? I have very limited patience and my skin is problematic.

Making Grand Mimi laugh. You'd also just stolen her sandwich.

17. WHO DO YOU MISS THE MOST? Grand Mimi. Shows you what a blessed life I’ve had that the person that I miss most lived to 97. I don’t want to be your answer to this question.

18. WHATS YOUR PET PEEVE? Inefficient/Cryptic voice mail messages. “Hi, it’s Blank. I need to ask you something. Call me back.” Then you call back and inevitably get a machine and have to say, “Hi, it’s me. You needed to ask me something? What’s up? Call me back.” What a waste of time. If you’re leaving a message say what you need, give me the details and when I call you back I can give you the information whether I get you or not, and the productivity of the situation moves along.* Better yet, send an email.

19. WHAT COLOR SHOES ARE YOU WEARING? Very old, beaten up cream cowboy boots. But really my answer should be no shoes because when I get home the first thing I do is take off my shoes – and then change into sweats (sorry Sean).

20. WHAT WAS THE LAST THING YOU ATE? A chocolate from Sees Candy. I’ve recently become that woman who eats chocolates. Like bon bon chocolates. I’m a horrible cliche. But I’m hooked. You went trick-or-treating this year and I didn’t want any of your candy. All I could think of was a dark chocolate scotch mallow or a milk chocolate vanilla cream from Sees. I may be a cliche but at least I’ve got good taste.

21. WHAT ARE YOU LISTENING TO RIGHT NOW? I’m loving the new tune “We are Young” by Fun featuring Janelle Maonae. It makes me so happy. It reminds me of my youth. It makes me think of your future. It’s such a positive, cool tune.

22. IF YOU WERE A CRAYON, WHAT COLOR WOULD YOU BE? Really? A crayon? I don’t want to be a crayon. Next!

23. FAVORITE SMELLS? Sunscreen (coconuts), pine trees and bacon (cottage smells), Cool Water colone (reminds me of my youth), the ocean and home made roast beef dinner and chocolate chip cookies.

24. WHO WAS THE LAST PERSON YOU TALKED TO ON THE PHONE? Sean. He called from the garage to ask me a question about something I’d said was wrong with the computer. Real phone call? The president of your co-op to discuss yet another thing regarding the silent auction for your fundraiser. People, like me, that willingly go into these kinds of volunteer jobs are slightly crazy. Fundraising is no joke. It can wipe you out.

25. MOUNTAIN HIDEAWAY OR BEACH HOUSE? Beach house. I can’t really do altitudes with PH. But I think I’d still choose the beach house. I love the ocean. Not so much swimming in it. I prefer a pool. Or eating on it. I’m not crazy for sand. But if we had endless money I would have a beach house. I feel calm by the water. Heck, if we had endless money I’d probably want a mountain place too. You were so into learning to ski at Big Bear this winter. I’d love to give you more opportunities to do it.

26. FAVORITE SPORTS TO WATCH?     Live – Hockey. TV – none. I find sports on TV mind numbing.

27. HAIR COLOR? Auburn or gold. I color it trying to recapture the hair of my youth. I used to say the color was “toasted eggo”. I thought it was an accurate description and far more true than blond.

28. EYE COLOR? Blue. Though they change colors with what I’m wearing. So they can also be green or grey.

29. DO YOU WEAR CONTACTS? Nix. Great vision.

30. FAVORITE FOOD? This is tough. I LOVE food. It’s been a problem since I got sick because I used to work out all the time and eat pretty much whatever I wanted. Now, not so much. Those chocolates I mentioned are a real issue. Sick is one thing. Sick and fat, is totally another. I’m trying to keep it in check, but I’d say…cheese, bread, roast beef with pan roasted potatoes and carrots or mac & cheese made by Granny. Lemon or Yellow cake from a box. Superb sushi. Great pasta (no alfredo sauce) or a hamburger and fries. Oh hell, fries in general.

31. SCARY MOVIES OR HAPPY ENDINGS? Happy Endings. I don’t like to be scared. I watched the Exorcist when I was 11 and I never got over it. Scarred for life.

32. LAST MOVIE YOU WATCHED? 21 Jump Street. They did a great job. Super funny and totally what I wanted it to be.

33. WHAT COLOR SHIRT ARE YOU WEARING? Grey. You can pretty much assume I’m wearing white, grey, black or army green. My friend Keili once described my style as urban safari. I think that’s pretty accurate.

34. SUMMER OR WINTER? Summer!!! I love summer. Maybe it’s a, “it’s my birthday” thing, but I love everything about it. The heat, the long days, the fact that I get to drink on patios and go to the cottage. Even though I’ve lived in LA for 9 years where it’s pretty much always summer, I still get excited when the 24th of May rolls around – Memorial Day to my US crew and May 2-4 to my North of the Border peeps – and I know that soon I can stick my hand out the car window and feel the warm air on my skin. I love that.

35. HUGS OR KISSES? I guess hugs. You can get a lot from a hug and you can get them from more people. I remember I’d been in NY for about 2 months after moving there and someone at my school gave me a hug, and I started to cry. I had no boyfriend and hadn’t seen my parents or friends in a while, and I realized that it’d been a really long time since I’d been hugged. Human contact is very important to happiness. I personally can’t stop hugging and kissing you.

36. FAVORITE DESSERT? In general – cookies. Always cookies over cake or pie. In a restaurant – I’d probably go warm chocolate cake, though I’ve been known to branch out. Desserts are a great place to take a risk.

37. STRENGTH TRAINING OR CARDIO? I’m a pilates girl now. But even when I went to the gym all the time, cardio was my least favorite. And yoga and I have never seen eye to eye.

38. COMPUTER OR TELEVISION? How could I choose? Couldn’t live without? Computer. Like the best? Television. Or lately, television on my computer. Best of both worlds.

39. WHAT BOOK ARE YOU READING NOW? Just finished rereading The Hunger Games on my iPad. I’m blow-out -nerd-excited about the movie. I guess next I should finally start the 4th book in the Game of Thrones series. I loved the first 3. Don’t know what’s stopping me from starting number 4.

40. WHAT IS ON YOUR MOUSE PAD? My mouse pad? No mouse pad Mr. Outdated Questionnaire.

42. FAVORITE SOUND? Your laugh. Rain on the roof of the cottage.

43. ROLLING STONES OR BEATLES? Beatles. Though I’d take the Beach Boys over either of them.


45. DO YOU HAVE A SPECIAL TALENT? I’m super fast at figuring out vanity plates on cars.

46. WHERE WERE YOU BORN? Wellsley Hospital, Toronto, ON Canada.

47. WHERE ARE YOU LIVING NOW? In a lovely little house in Studio City, CA.

48. WHAT COLOR IS YOUR HOUSE? Dirty white. But since it’s a rental, we’re hesitant about putting any more of our money into beautification.

49. WHAT COLOR IS YOUR CAR? Black 2012 Ford Explorer. I love it. I’ve wanted a black truck since I first started driving. I finally got one this year and I’m so thrilled. (See: Anticipation). You named it Schatzy. It’s totally stuck.

50. DO YOU LIKE ANSWERING 50 QUESTIONS? Actually it was pretty cool. Self knowledge is a good thing.

I love you baby. Get to know yourself and embrace all you are. I’m so very proud of you.

xoxo your mommy

The Family McGowan in our Loch's 4 Birthday Shirts that your Dad designed. I'm pretty sure you'll outgrow wanting to match with your parents, but for now we're embracing it!

*only time this doesn’t work is for very personal information not to be left on answering machines. Deaths, Births, Engagements. Otherwise just tell me what you need!

Good Night My Angel

Dear Lochie,

You are 3 1/2 and I just left your bedroom where you fell asleep in my arms. You’ve never done that before. Not even when you were a little baby. I hadn’t seen you all day. Mondays are my day to work. Dad takes you for the day. You go to your co-op preschool in the morning (9-12), have a picnic in the park and then go to your other preschool in the afternoon (1-4). I got home from acupuncture and while your Dad prepared dinner (take note, this will make your future wife very happy), we played ‘Winter’ for about 10 minutes. We made “snowmen” and “snow balls” and “snow angels” in our imaginary snow and then we ate. You told me about your day. How you’d played fireman and carwash, and how at your “old school” (the co-op) you now have your own box with your name on it. With such pride you told me. “It’s black on top and grey on the bottom!!”. I know you’re working on books with the other “graduates” that the parents will get at the end of the year. You told me you are getting ready for kindergarden. You don’t understand yet that you are younger than all your friends and still have another year of preschool before you get to kindergarden. It’s ok. It’ll be nice that you are one of the oldest when you start. It’s just too bad that all your friends now will be a grade ahead of you. That’ll matter for a while…

But I’m off topic. After dinner daddy went to work in the office and you and I played ‘Seasons’. We did a highlight from every month and acted it out. October, Daddy’s birthday. November, Thanksgiving/raking and throwing leaves. December, Christmas!!! January, New Years. February, Lochie’s Birthday, etc… By the time we were at the cottage in August it was time to brush your teeth. You still don’t dig our grown up toothpaste but your teeth look so much better that I can deal with the complaints. We went to bed. One story became two, two became three, and my insistence that I wasn’t going to snuggle was abandoned when I realized that I WANTED to snuggle. I hadn’t seen you all day! I got my iPhone and played you some quiet songs. We’d never done that before and I think we both loved it. You took my arm and wrapped it around you and that was it. You just drifted off to sleep. I could smell your just showered head of hair which is somehow already messed up. I could feel your little ribs going up and down. Your tiny lips were on the back of my hand as you’d given it a kiss when you wrapped my arm around you, and I just didn’t want to move. Often when we snuggle I go to get up and you say “Don’t leave me. Don’t leave”. Because I’m sick I always read into that. I know in my head that you are just a kid wanting his mom to stay, but my fear sometimes gets the best of me and I think maybe you’re a sage, and because of your purity you know something I don’t. I worry that I am going somewhere and you are asking me not to.

I promise you this Loch. If I can help it, I am staying. I love my life. I love you and Daddy. I love the sun and the water and the cottage and my parents and our family. I love traveling. I love going out to dinner. I love Christmas and my birthday. I love your birthday. I love the sound of your voice and being in your daddy’s arms. I love laughing and being with friends. I love alone time and reading. I even love television and shopping. I love being alive. I want so much to live. Selfishly though, I want to live as me. Not as some marginalized version of myself. I know I can’t do all I would like anymore, and even precious young you knows I have “bad lungs”, but I am still me. I don’t have to deal with so much that people who have PH have to deal with. I have no oxygen tank. I have no heart cathitar. I look, for all intensive purposes, normal and healthy. But I’m greedy. I want to stay like that. I want my life AND I want to recognize the person in the mirror.

I want you to know me as I am now. I hope you do. I want you to know that I love swinging you around and giving you piggy backs and being your “horse”. I wish I could do it more. I love being with you and making up games and voices and songs. I can’t stop kissing and hugging you and I’ve already taught you that three hand squeezes means “I. Love. You.”. I love being your mom. You are the center of my universe. If I do get sicker you won’t know this version of me and that scares me. If I should die you’re too young to really remember me at all and that devastates me. I don’t want to be just a picture in a frame.

It’s not fair Loch. It’s not fair your mom’s sick. But I’m grateful. So grateful to have this time with you. Every day is a blessing. I know that in my head even though it’s often hard to see through the sadness in my heart or the anger in my gut. Every day I have is a gift and I’m doing my best not to squander it. I’m still someone who cares about my weight and yells at automated systems. I’m not perfect or calm or zen. I do, however, have perspective on the frailty of life that gives me clarity on what’s important.

Try and get that perspective in your life without the sick part. Focus on what’s really significant. Spend the time with those you love. Send cards on people’s birthdays. Contact friends you’re thinking of. Be positive when it’s easier to be negative. Try as hard as you can to really live without taking unnecessary chances with your life. Make smart choices. Life is amazing. Respect it.

And if your child one day wants you to stay in bed with him until he falls asleep, even if you know it’s probably better if you stick to the rules… Do it. It’s worth it.

“To live is the rarest thing in the world. Most people exist, that is all.” – Oscar Wilde

I love you.

xo Mom