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Posts Tagged ‘parenting’

My Big Fat Life – Black Lace Panties and Gummi Bears 

In Uncategorized on August 31, 2017 at 4:36 pm

Yesterday I attempted to do a make-up day. I had the cookies ready, I was gonna flop on the bed and get my rest on. As I drove the kids to school it was all I could think about. 

By the time I dropped the kids off and teturned home I had one of those pay-your-damn-bill–already-loser notices on my door. While somehow less offensive tha the dog crap of the day, I just rolled my eyes and muttered some obscenities to myself as I turned the key. 

Since my day wasn’t going to have the picture perfect setting for a day of chill, I decided to run tonWalmart and return something that was contributing to the clutter in my room. As I approached customer service in the somewhat empty store, I noticed a woman behind the counter looking as tired me ringing up stuff and throwing in a cart beside her. I thought she was probably doing returns and stuff and quirky asked myself who the hell would return such a huge bag of Gunni Bears while asking myself who the hell needed such a huge bag of Gummi Bears. I watched as she rang up a hige bag of chocolates, some cute booties, black lace panties, make-up, a fruit tray, and various other items. As she finished and announced “Thats five hunderd, twenty five dollars” to the clerk who was now ringing up return, the lady in line behind me remarked how big the bag of Gummi Bears was. Thankful I wasn’t the only easily marvelled by this, the clerk helping me replied to her co-worker “Wow. She tried to steal a lot this morning”. 

Are you kidding me? I was barely awake and some woman was already up and attempting to shoplift an entire basket of item from Walmart? Who was this woman? While stealing is obviously dumb and bad, I confess I had a bit of envy over her ambition before noon, not to mention her obvious plans for something exciting that included chocolate, black lace panties and an ungodly yet comically sized bag of Gummi Bears.  

I finished my return and a couple of other errands, and went home. I flopped on the bed hoping to at least make the most of what I still had and I’ll kid you not  my stupid alarms went off. It was the first Wednesday of the year and I had forgotten it was early release day. 

I still have hope that there’s a day in the next week that I come home to a clean house, silence, coffee brewing, my comfy bed and the remote where I reign as Queen of my personal utopia for day.  Since my daydream also includes the dog not following me to the bathroom and trying to push the door open like a total creeper, I doubt it will ever be that perfect, but I’m hoping for dangerously close. 

In the meantime, I salute Walmart woman. Even though she got caught, and rightfully so, something tells me she had much bigger ambitions for yesterday than I did, and I have to give her some props. Anything that involves black lace panties and that many Gunmi Bears, plus a fruit tray before noon had to be a pretty epic plan. Something tells me she was far more disappointed hers didn’t pan out than I was over mine. 


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My Big Fat Life – First day of school crap. Literally. 

In Uncategorized on August 29, 2017 at 4:00 pm

Today was the first day of school for the kids. I’d been dreading waking up early again, but excited at the thought of hanging out in a quiet zone where I wasn’t telling people to stop fighting, and being able to hoard cookies for myself while lazing around to nurse whatever it is that still has me consuming Kleenex like it’s nose candy. I planned to live this out while watching an episode of a show I’ve recently fell in love with without interruption. By the way if you haven’t seen Girlfriends Guide to Divorce yet, watch it. 

In my excitement to get in the house and carry out my perfect plan to be as sedentary as possible while being blanketed in only cookie crumbs and void of being immediately greeted by conflict and complaint,  I locked my keys in the car. 

I called my insurance company for roadside service who in turn sent a guy named Mike out about an hour later. Mike came and unlocked the car door so my keys could no longer mock me from the front seat where they sat, so yay Mike! 

I opened the door willing to take whatever time I had left and make the most of it, only  be greeted by a howling dog and a pile of his crap. I guess he’s trying to step in and make sure the legacy continues. Asshole. 

(Mike) 

My Big Fat Life – What? Me Worry?

In Uncategorized on December 9, 2015 at 9:57 pm

Dear People Who Love Me and Who I Love,

Yesterday I had read an article about a new treatment for children like Gabe. A medication that physicians were prescribing to people with pericarditis, that was showing promise. It isn’t a cure, there is no real cure, just a treatment that is proving to keep a flare at bay.

Of course I wrote his medication specialist right away, and asked the nurse to please speak to the Dr. about Gabriel being a candidate for this treatment. I was disappointed when she responded that she had spoken to the Dr. and he felt Gabriel wasn’t a good candidate for this treatment, because it’s a daily injection, and Gabriel already has severe anxiety surrounding needles. Just to get a blood draw requires sedation, and even then sometimes it takes three of us consoling him as he moves through the process. It’s heartbreaking to watch.

I responded back the nurse and asked her if she could then ask the Dr.  if he really felt that the procedure to remove the sac of his heart was truly the end of our road and if possibly there was any other medication we could try.. anything. Instead of responding through email, a few hours later the nurse called me. She pointed out the obvious, that I sounded anxious in my email and she was wondering if I was getting scared about the procedure. I told her that yes, I am. I need to know without a doubt that we have exhausted all other possibilities, all other options, all other chances that we might be missing something that could help avoid this surgery. I want Gabriel healthy, I want him to have a wonderful life, and know what it is like to get old. I just don’t want to have to put him through such a big deal, if there is something out there that can help him achieve all those things I want for him. I asked the nurse if she could please have the Dr. call me back and just assure me that we are doing the right thing. She said she would pass my request along.

Hours passed and I was forced to make a store run because while people in my house like to use toilet paper, letting me know we are out of it is somehow a telepathic message that I just keep failing to receive. While I was standing in line, the Dr. finally called to talk to me. I explained to him that yes, I am getting nervous and I just need to hear from him that this is exactly what needs to happen. I told him I would never be able to live with myself if something happened to my son during surgery and not checked every option, every possibility to know that I did everything I could to advocate for the right thing for Gabriel. The Dr. told me that there were medications they could try, but he feels it’s just putting off what needs to happen, because in the long run Gabriel is going to need it and if we do it now, we avoid his condition worsening and making the surgery to remove the sac adhered to his heart that much more difficult. As he spoke, I knew what he was saying was right. I think I just needed to hear it once more before we move forward.

I told him that I just needed to hear it once more before he goes into surgery, and then he said something that caused an involuntary noise that emerged from my mouth and my heart. A noise that caused people to turn their heads and look at me while I tried to speak through the tears that were now freely flowing in front of everyone and their dog in an instant. He said “He’s going to be okay, I promise.” I could barely keep myself together as I tried to talk through the pain and the tears as I responded “You can’t promise that.”

Often  the words “He’s going to be okay” are offered as words of comfort. I hear your feeling of a loss for words when you say it, and love you for wanting to find words to say that might offer a moment of comfort and peace in an otherwise shit situation, yet the ending emotion is anything but peace. I’m his Mom and I don’t know he’s going to be okay. It really hasn’t been “okay” for a little over two years now, and none of this feels okay because I don’t know how it’s going to play out. So far nothing has gone according to game plan. If knew he was going to be okay, imagine all the peace I could be walking in right now.

But I don’t know; none of us do.

While I was putting my groceries into the backseat of my car, and still talking to the Dr. on the phone, a checker made her way over the parking lot. I was whispering to myself “please don’t let her come over to me, please don’t let her come over to me” as my eyes followed her path of intention right up to me. I mouthed the words “can I help you?”  and she responded that she just wanted me to know that she was going to pray for my son. I quietly gave her a hug because while I was embarrassed by my public display of reaction, it meant a lot me and in the moment it was exactly what I needed. Not a promise that things were going to be okay, but just a quiet reassurance that I wasn’t standing alone in the moment. It’s not something I easily allow myself to share with people, yet it’s something I have been really blessed to know in my life the past 5 months. The amazing guy I’m dating has this way of holding me in his arms, or taking my hand, and I feel safe even though I am uncertain of what’s going to happen. I’m not accustomed to feeling safe with someone, and it’s wonderful.

I love you, my friends. I am so thankful that you have shared in the journey of my life the past 5 years. I consider you a part of this, and I know from the love you have openly extended to my family that you feel a part of it too. You’ve been such an encouragement at times, and when things have hit hard, you have encouraged my heart to hit back harder. It’s because I know you care that I ask you with all the grace I can, to please stop telling me it’s going to be okay. It’s breaking my heart, and I know that is the last thing you want. I know that isn’t your intent, but in that moment knowing it and feeling it are two different things, and I don’t always know how to let logic win first place when I am hurting.

I hope this made sense, and you know that I love you.

L

 

 

 

 

 

 

My Big Fat Life – Gabriel Update

In Uncategorized on January 14, 2015 at 4:33 am

I didn’t want to talk about this until I had the appointment, but I finally got Gabriel in to see a pulmonologist.

Since we are now one episode away from the doctors wanting to remove the pericardium sac of his heart, I wanted to make sure that they looked at all things before moving forward.

A friend posted something on Facebook, and the in the comments one of the women mentioned something about pleurisy. It reminded me that one time, early on, one of the doctors said his symptoms were like those of pleurisy. I didn’t think much of it, because I didn’t know much about it, plus it was early on in and I didn’t know a lot about a lot.

The woman provided a link, and I clicked. You know all those symptoms the doctors have told me that aren’t textbook, and baffle them? Well they are textbook, but for pleurisy. This motivated me enough to get a referral to the pulmonologist and get their opinion on things. Since I haven’t been able to shake the feeling they are missing something, this sort  of confirmed my concerns there might be other things going on. At least some very suspect symptoms that are worth looking into.

He agrees that while Gabriel does have the symptoms for PPS (posterpericardiotonomy syndrome), he also seems to have some symptoms of pleurisy. He feels that Gabriel definitely needs a cat scan of his lungs when he gets sick again, to look at things more closely before they even consider moving forward with the pericardium removal.

Hopefully Gabriel won’t have another flare, and perhaps this is all just precaution. At the same time, I have been preparing myself for the fact that he may very well have to have it done, though I pray he won’t. At least we are one step closer to hopefully finding some answers to the symptoms that are baffling his doctors, and stressing his body out.

 

 

 

My Big Fat Life – Eleanor to Aisle 14 Please!

In Uncategorized on November 16, 2014 at 11:47 pm

A couple of days ago I was really having a tough day.

Who am I kidding? I have had a tough week.

I went to the store a few days ago to make a quick run for cereal after an appointment. It was a typical morning around my house. Gabriel was having side effects to his medication, I was PMSing, my new relationship wasn’t going so fabulous, I had an appointment, and I was out of cereal. You know….. a typical morning.

As I left my appointment, and made it to the store, I was already listening to music in the van that was audibly pouring salt into all the wounds I was feeling. Why is that every stupid song on the radio seems to know exactly when to prey upon my funky moments?

By the time I made it to the grocery store I was already trying to figure out how I could just get in and out, go home, throw the blankets over my head, and just sulk under the covers until I was ready to emerge when life was suddenly full of blue skies, and pizza.

I grabbed a cart and begrudginly worked my way over to the cereal. As I eyed the sales on cereal, I noticed a little old lady next to me. She was shorter than my 5’5, and had some serious earrings on that looked like saucers stuck to her lobes in comparison to her small frame. She was going about her business scouting out her cereal options as I glanced her way out of the corner of my eye. I quietly studied her for a moment, and wondered what her answer would be if I asked for her answers to longevity, and sanity. I wondered to myself quietly what her secret wisdom was. Did she regret losing time stressing over things that seemed so life altering when she was younger that turned out to really not be much in the bigger picture of life? I pondered for a moment actually asking her my questions, and then realized how awkward it would seem to seek wisdom on aisle 14 over the latest cereal sale. So I pardoned myself as I scooted past her with my cart as  vision settled on the big box of Cinnamom Toast Crunch in front of me.

As I scooted past her and mumbled my pardon, she spoke. I walked a few steps before I realized she was speaking to me, and I looked back towards her. She repeated  her question “What’s wrong sweetie?”. I stood there unable to speak as I felt my eyes starting to burn and swell with all the frustrations, disappointments, and fears I was feeling that morning. I struggled to formulate the sounds to give her answer to her question as my worries burned their salty path over my cheeks. I think she could tell I was struggling to answer her question, so she instead asked me my name. I softly uttered my name with a broken voice as I reached for a box of cereal.  “What’s wrong?” she asked me again. I replied that I was just having a really tough morning. I didn’t really want to unload my life to a stranger on aisle 14, and after the trouble I had saying my name through the tears streaming down my face I really wasn’t even sure if I could even find the words if I wanted to anyways.

As she looked at this woman who was now holding a box of Cinnamon Toast Crunch with tears streaming down her face, she quietly said to me “It’s going to be alright. Whatever it is, it’s going to work out. I will pray for you”. She meant business, because with saying that, this woman in aisle 14 starts praying for me. Right there. I wasn’t quite sure what to do. I know how to pray and all of that, but I was just caught off guard that this little old lady with saucers on her lobes was there in aisle 14 taking a moment to just be kind to a woman who was crying while clutching a box of cereal.

She finished her prayer, smiled, and repeated her belief that everything was gong to be okay. I thanked her, and proceeded to grab another box of cereal off the shelf before quickly walking away. I made it a few steps before I realized I didn’t get her name, so I turned to walk back over to where she was, and asked her name. “Eleanor” she said. We shared some plesantries, and then I told her I was just having a tough morning in a space where things just seemed a little big. She spoke with me for a few moments, advised me to “Let go, and let God” (while I have heard that saying what feels like a millions times, I am still not sure what it means exactly), I thanked her again, and worked my way to the check outs.

While life still felt a little big a few days ago, the whole interaction seemed to put a few things in perspective for me. First, I should never really go to the store when I’m having a funky morning because I always buy the crap cereal that I know the kids shouldn’t eat, but I know I am going to eat as well.  Secondly, that the simple action of asking someone if they are okay makes the big world seem a little more personal.

Gabriel is going to be on a different dose of his medication, I sadly had to let the new dating relationship go (I will admit that I took that decision pretty hard. It was a part of my tears that morning. I really liked this person), and the cereal I bought that day is now gone. While those things don’t seem as big after taking a few days to step back from it all, I hope I have learned a few things about myself in the midst of it. I am not sure exactly what the knowledge gained is yet, but hopefully when a life situation rises that needs to pull out that lesson, I will recognize it.

But I can tell you that Lucky Charms still rock as much today as they did when I was kid, and aisle 14 gave me more than cereal that morning.

Wherever you are Eleanor, thank you.

My Big Fat Life – I’m Not Gay

In Uncategorized on October 16, 2014 at 10:18 pm

This is possibly one of the most difficult blogs I have had to write.

I know this will be pretty unpopular, and I am prepared for the backlash of previous readers, but it’s something I simply need to talk about.

When I started this blog I was hurting.. really hurting.. from the break up of the relationship with my *now* ex Registered Domestic Partner. I was in a place where grief seemed pretty all consuming, and I had no doubt I was truly devastated that things didn’t work out. I also didn’t question my sexuality, because as far back as I can remember, I was attracted sexually to women. Things with men didn’t seem to *work* in a lot of ways, and things just seemed so much more natural with women.

When I was in my relationship with the ex, there was one guy I had met that I was attracted to, and it surprised me. I wasn’t sure what to do with the attraction I felt, and I put it away. The word ‘bisexual’ in the LGBT community is one that is often seen with a lot of discrimination, and prejudice. I didn’t think I was bisexual (and I don’t think I am now), but I also didn’t know what to think.

I continued to date women after the ending of that relationship. Though I wrote about those relationships from time to time, I also kept a lot of it to myself. I never really liked the idea of writing about my dating life to begin with. One, I didn’t want to make the person uncomfortable, and two.. well, I didn’t want to write about it and then when it ended have it be another failed relationship that became the focus of my writing.

When Gabriel had his surgery last year, and I was in a relationship at that time. I won’t go into details about what happened, though I know a lot of it I under a tremendous amount of stress. I was also at a cross roads in my personal life.

When you are faced with the reality of life in such a raw way, you start to ask yourself questions. You start to wonder if you are really on the right track in your own life. Maybe career, personal life, romantic relationships, friendships.. so many areas. I thought I had known who I was, what I wanted, where I wanted to be. I had plans for life, and I was trying to live out my goals the best I could.

I am not so sure anymore.

The past 6 months, I have been on some dates. All those dates were with men.

Now, please hang with me. I know some of you are automatically labeling me as a bisexual. I can almost hear my ex screaming “I knew it!” in the background (that is in no way to suggest she is actually doing so), but let me make this clear.. I do not label myself as a bisexual. In all honesty, labeling me is the least important thing about this entry.

Over this past year a lot of things have changed in my life, and one of those changes has been what I feel I desire in a relationship. I can’t explain to you exactly where and when my heart changed, but I can tell you that today.. here behind the screen of the computer.. is a woman who realized that I am not the certified, card carrying, absolute lesbian I believed I was born to be. I am a woman who doesn’t want to label herself in anyway, other than to say that I fully believe that dating women is not where I want to be anymore. It’s not where I believe I am to be anymore.

I am not sure how to even begin to talk about why I believe the changes came about without sparking some serious debate about faith, but yes.. I am a Christian. I have never hid the fact that I believe in God, and I can’t explain how these drastic changes in my very being have taken place because it’s such a personal experience. I can only tell you my experience is that I am no longer attracted to women either sexually or romantically.

So there you have it.

I’m not gay.

My Big Fat Life – Jesus Take The Wheel (but let me press the gas pedal)

In Uncategorized on October 14, 2014 at 9:43 pm

Gabriel had another seizure the weekend before last. It was one of those grand mal seizures, and scared the crap out of me. This makes three now.

The second seizure he had was something called a “partial”, and it was after that the Dr ordered an EEG. The day before he had this last one he had the EEG done at the hospital he was transferred to, so the ER Dr. was able to speak to the neurologist, who spoke to someone who then spoke to the neurologist, when then spoke to he ER Dr., who then spoke to me. Yeah, I know.. confusing, isn’t it?

The initial impression they have from the EEG is the same one the neurologist spoke to me about when we met her for the first time, last week. Gabriel has Benign Rolandic Epilepsy. He may outgrow it, but the onset of it has come a bit later than usual, so it all really remains to be seen. He will stay on medications for 2 years, and they will do another EEG to see what that looks like. If it’s clear, then he will go off the medication.

From what I have read, the children don’t typically need medication, but because he has had so many in such a short amount of time, they put him on it.

So now we have answers.. more answers. It’s been a bit overwhelming at times, and I have gone back to spending time with tears. I have learned to be a heart parent this past year, and now I need to learn how to see a grand mal seizure without freaking out, but all in all I remain greatly blessed. I do wish that my Gabriel could just have a time where life wasn’t throwing something new out at him, and he could focus more on the things teens worry about instead of worrying about having something happen.

Anyways, I kinda feel like I am telling God to take the wheel, but keeping my foot on the gas pedal trying to control the speed of things where I want them to be. I know I can only do what I can, but it sure would be nice to feel I have some control in this situation where I feel helpless at times.

 

 

 

My Big Fat Life – Throwback Thursday (365 days later)

In Uncategorized on June 26, 2014 at 5:23 pm

A year ago today I stood in the hallway at OHSU right outside the door of the ultrasound room, and cried as I listened to a cardiologist tell me that Gabriel needed to have life saving open heart surgery. These were the same halls I walked when I was visiting Gabriel in the NICU after his birth, and the same halls I walked when I was leaving the hospital with a little boy that I was told was in perfect health with a perfect heart. Even though I had my suspicions over the years that there was something going on with Gabe, nothing prepared me for that moment and those words.

Here we are 365 days later, and I never would have guessed that life would be so much different than where I thought it was that day that I made the drive to the hospital for routine tests for the boys. In some ways the changes are very disappointing and in other ways, life is much better.

I was going to write a list of the changes that transpired over the year, but recently my sweet friend Jessica posted something on Facebook that resonated with me so much, that I wanted to share the list of things she has learned this past year (with her permission):

1. People who actually care will make a way to be there for you when you need them.

2. People have different definitions of help.

3. People have different definitions of friendship. Just because you know what kind of friend you are to someone doesn’t necessarily mean they will be that kind of friend to you.

4. Ultimately, you don’t owe anyone any explanations for your living, romantic or self decisions (unless you are hurting someone).

5. My mother will always be there despite how she feels about whatever is going on… good or bad, or indifferent.

6. You know the answers in your spirit; we seek others for confirmation.

7. If when something goes on in your life and you pick up the phone to tell someone, the first person you think/want to tell is and should be your best friend or partner (if this isn’t the same person) . If you find yourself telling someone something and they aren’t the first person you thought to share your thoughts or happenings with, reconsider who you’re sharing with. Everyone isn’t meant to know everything.

8. If you are in a bind and you need help, the first person you know who will come through when you call is your family.

9. After all is said and done, whoever is left is your true friend. I fight very hard for my friendships/relationships. Fight for people who will actually fight for you and don’t be surprised when you find out people you thought were going to won’t. I’m learning who actually fits into that “friend” category. And although it sucks, it is definitely an eye opener.

10. MOST IMPORTANT LESSON OF ALL: You can’t expect anything from anyone. So… make your own life filled with happiness and joy the best way you can. You will meet amazing people along the way; know when to hold on and when to let go.

While I can’t really relate to #5 and I am not really into fighting to keep relationships intact this past year (I have had to keep my battles soft), this list really hit home with me. Especially #2 and #3. Besides these lessons, I have also learned that hope can be an enemy if not used with caution and that hugs (for someone who is not normally affectionate with strangers) are essential.

A year ago I never would have thought that some people who were in my life then, would not be a part of it now. Some of those relationships were redefined, and I am grateful for the preservation of those connections. I do miss friendships that fell by the wayside, but I am very thankful for the new friendships I made this year, with people I wouldn’t have met otherwise. I have met other heart parents along the way, and also Wendy who is a heart patient herself (she is a kindered spirit in the realm of parenting, and she makes me laugh on a consistent basis). These people have made me feel as though I can lose my shit in a place that is understood, even if our experiences are all different. I am especially grateful for a friendship that came from the most unexpected place with perfectly imperfect timing, how it’s evolved, and how now Omar has come to be amongst the most cherished people in my life.

Life hasn’t carried me where I thought it would. It certainly has changed in the last 365 days. In some ways the changes have been really disappointing, and in some ways life is so much better.  The best thing of all is that as I write this, Gabriel is playing a video game with his brother and I can hear the debate about the game take place. A year ago I was terrified that might not be the case.

Still not sure where the next year will lead us; I’m not even sure what tomorrow has in store (other than a soccer lesson). I do know that I am grateful for each and every one of you who have read my words, written me letters of encouragement, loved me despite my often bouts of frustration with this journey, and given me space when I needed it with the understanding that you would always be there when I was ready to talk. Your loving and patient friendship has meant a lot to me.

My wish for the next 365 days is for healing, love, and victories. I wish that for all of us.

 

(I snapped this photo of Gabriel on June 26th 2013, while he was being prepped to have the echo that would prove to be both life saving and life changing)

Gabriel June 26 2013_copy

 

My Big Fat Life – What Are You Staring At?

In Uncategorized on June 2, 2014 at 8:20 pm

I used to get really offended when kids would stare at Gabriel when we are out in public. You see, because of the prednisone doses, Gabriel has been dealing with a suppressed immune system. Because of this, when we go out I make him wear medical masks to reduce his chances of walking into a cloud of droplets when kids (or adults) cough and sneeze, and fail to cover it up. This isn’t a hard concept to learn, yet I see people fail to do this all of the time.

Lately I have come to the conclusion that kids are just going to gawk at my child no matter what, and it’s not a reflection of crappy parenting, kids are just naturally curious and lack the politically correct barriers we enforce on everyone else around us. What I haven’t come to accept yet, are the adults that not only gawk, but I have seen whisper and then giggle while looking at my son. This isn’t even a politically incorrect response, it’s just a social douche move. I can handle the kids gawking, but the adults who lack any social grace just annoy the heck out of me. I’ve started just looking right at them, and informing them that my son isn’t contagious, I am protecting him from people. Yes, maybe a snarky response, since I am also giving them the “people like you” look when I say it, but really.. what the heck?

As if my son doesn’t already feel weird about the weight gain from the prednisone, he now has to deal with wearing a mask which further singles him out, just so he can have some sense of normalcy in his life, by getting to go out and do things. Add the fact that kids and adults (who should know better) stare, and it’s not exactly the most amazing experience to go out in public anymore.

I thought I would share a thought that may help with the social experience if you ever find yourself in the space that you are staring in curiosity, that would not only remove any idea that you may be one of those people who lack any social swag, but would also make the person on the receiving end of your stare, maybe a bit more happy. It’s really easy.

Smile.

Yes, just smile. No, not one of those douche snark ew-what’s-wrong-with-you smiles, but just a nice kind smile. If you find yourself staring at the guy in the wheelchair, or he kid with a medical mask on, and they see you.. smile. Make it look like a moment you are offering a moment human connection, and just smile. I would much rather you smile at my child than give him on of those expressionless stares, and whispering giggles. Okay, so you are probably stating and wondering what is going on, or maybe you are thinking to yourself some expression of sadness for whatever it is that ails a person to be in that position to begin with. Whatever it is that is going through your mind, just please find a way to offer up a genuine and kind smile. A kind, generous and often welcome response to whatever it is you are thinking can make all the difference to the person of your curiosity.

As for your children, it’s okay. Maybe not to other moms, I can’t speak for them, but I can speak for myself. Just perhaps if you notice your child staring, use that moment to teach your child to smile in response to making eye contact with other people. When you get to your car, share with them that sometimes people look different and that is okay, and a smile is an appropriate and polite way to quietly greet others. Can you imagine the way we could change the way we interact with others by simply teaching our children, and ourselves, to smile at other people?

That would be a wonderful thing.

Last night Gabriel had some pain, and it bothered him up most of the night. It was in his shoulder, which is one of the symptoms that we typically deal with when fluid starts to build up around his heart. Thankfully it is now 8 in the evening and it never progressed, so I am relax a bit with the hopes it was just a random ache or pain.

Since today is Monday, that means another taper of the prednisone and it being the 2nd of the month, it means this is the start of his very last taper. I always find myself riding the wave of anxiety when the time draws closer for him to go off of the security of the prednisone, but this time we have that little purple pill on board (colchicine), and so I am trying to let the cautious hope ease the crop in that wave, just a bit. I’m not really doing such a great job of it, but after months of having been in this place before, I am learning some coping skills. One is that I am shutting down emotionally from those around me, but I am not shutting people out. In the past, I just went into emotional survival mode and shut everyone out, with all of my energy focused on trying to ride the wave without falling off and belly flopping into my metaphoric ocean of anxiety. Now, I am still in that place, but I am learning to ask for a hand from those I trust will help catch me. I’m still not 100% with this skill, but I am getting better.

I still don’t have a lot to give out to those around me during this stage of the process, and I am learning to be okay with that. I used to put a lot of expectation on myself to meet the expectations of those around me, even in my stress, but that would just weigh even heavier on me, and honestly I can’t do it. I am learning to identify the difference of the expectations of others put on me, those I put on myself, and the reality of what I should take on at any given moment. That might sound like a big lesson, but really I am just living it one moment at a time.

Now if we could just live human connection, one smile at a time…….

(Gabriel at the grocery store. As my daughter, Sarah, recently acknowledged on a recent shopping trip.. no, I don’t mess around with the cereal)

Gabriel Shopping

 

 

My Big Fat Life – Tomorrow Is When?

In Uncategorized on May 15, 2014 at 9:08 pm

A couple of days ago, Gabriel saw the Rheumatologist. As you know, he has been tapering the prednisone every Monday while taking the colchicine.

The plan is to continue the taper, with him going off the prednisone completely by June 11th. He will stay on the colchicine after he finishes the prednisone, with hopes that it will prevent another flare up of the Postpericardiotonomy, and there will be no fluid around his heart. He will stay on the colchicine with no definite ending date, until we see how it works. Typically he gets sick within 3 weeks of ending the prednisone, but we are hopeful the colchicine will prevent that from happening.

June 11th.

June 11th.

This day is set in my mind, and as it approaches I am cautiously hopeful yet preparing my spirit for what might lie ahead.

It’s hard to believe that it’s almost been a year since the heart defect was found. No one tells you how quickly time pushes past when you have a child who is chronically ill. I was thinking back to September when the Cardiologist suggested the surgery to remove the sac of the heart. He (the cardiologist) said to me “But that is way, way out there. We have medications to try first, and that is about a year out”. Yet here we are almost year later from his initial diagnosis, and it doesn’t feel like a year has passed by.

Maybe it is because I don’t even think in terms of making future plans anymore. Every thing is about the here, and now. Maybe that is why times seems to pass so quickly. When you make plans for events that are scheduled ahead, time seems to move so slowly. Now it is all about just making it through the day, and hopefully to the next one, without any events taking place that might indicate the medication isn’t working. In a way it’s been a good change, because I am learning to live in the moment. I’ve always been someone who spends a day scheduling and planning the next day. Sometimes I get so busy scheduling the next day, that I at the end of the day I realize I have spent my entire day preparing for the next. Now, I am learning to live right now. I can’t always do the things I want to do, I am not a rich woman in any sense of the means, but I am learning to appreciate the now. Don’t get me wrong, now that I am working with the kids with online school and the entire burden of daily responsibilities fall on me, I am staying busy no matter what. Just I am learning to embrace the moments where I can. If that is stopping and giving myself 60 seconds to pull my hair back and apply a dab of blush, then I do it. Buying tickets for a concert I really want to see that is months out? Not happening. Katy Perry is coming in September, and trust me, I wanted to go so bad. But not knowing where things are going to be in September, I couldn’t justify spending the money when times are already tough, and not knowing if I would have been able to go or not. But oh man, I would have loved to get a floor ticket and had one night I could just let go.

But here and now, things are okay. Gabriel is handling the taper well (even though that has never been the issue)and he is fine in this moment, and that is what it is all about. Wouldn’t trade that for all the Katy Perry tickets in the world.