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My Big Fat Life (My Big Fat Lesbian Divorce) – Overcoming Hallways

In Uncategorized on April 17, 2018 at 8:44 am

Back in 2014 I wrote about how I seemed to cry a lot in the hallway of a Drs. office when G was really sick https://lesbianspaghetti.wordpress.com/2014/03/27/my-big-fat-life-hallways/ As you may remember, my son G was diagnosed with Anomalous Left Heart Coronary in the summer of 2013 when he went in a for an echo completely unrelated to his heart. It was then I was told he could have a massive heart attack at any time, and could die. I was given this information in the hallway of the hospital , by the same cardiologist who told me a few times before that his heart was fine and I was worrying too much. I recall having my back against the wall, and just sliding down to the floor where I sat and cried for what seemed like an eternity. It’s not easy hearing your child could die at any time, and given my history with G, I still wasn’t prepared for the news that was working its way from my ears into my head.

G is the surviving twin of a complicated pregnancy. G & I suffered from Twin to Twin Transfusion, but the more complicated syndrome of an already complicated syndrome, called Twin Reversed Arterial Perfusion. I had already went through the pregnancy with a child who couldn’t thrive, and every day lived in fear that somehow G’s heart would give up and I would lose him as well.

After birth I fretted often and was told his heart had somehow rectified itself and I have nothing to worry about. Of course through the years I sensed something was wrong, and I pushed for them to check his heart a few times just to reassure me. I was told after his last one around the age of 6 not to bring him back because he was totally fine, so I tried to let go of this nagging feeling that things weren’t and dismissed it as perhaps I was just living some constant PTSD from the pregnancy. He had the echo that day in 2013 because his genetic specialist was trying to figure out why G wasn’t growing properly, and it was the eyes of an ultrasound tech who saw what the Cardiologist kept missing. The same Dr who told me not to bring my son back at the age of 6 was now the same Dr delivering the news to me in the hallway that my son could die at any given time. God, that man is an asshole.

After his initial CHD repair in 2013, G immediately developed a condition that is basically surgically induced Pericarditis (Postpericardiotomy Syndrome). He was sent home with Lasix and Prednisone, but just couldn’t seem to shake the constant build up of fluid around his heart. That sent us on a long journey of several trips to the Dr, ER and specialists who worked to control the fluid with Prednisone and other drugs, while not even sure what was going on. The medications worked at first,  and the fluid would disappear, but after time it just stopped. Before I knew it I was back in a hallway with a Dr telling me that G was sick, and the pills weren’t working. I cried a lot in those hallways, because the last thing I needed the kids to see was me losing my cool and breaking down in the exam rooms, though I am sure they knew what was going on.

Over time it became clear that his heart was not well, and they needed to do remove the entire sac of his heart. When it was opened to repair his heart initially, it became like scar tissue and the cause for the inflammation which made my son very, very ill. The Prednisone stopped working to control the fluid from building up, and I knew we were out of options. His only chance at getting better was to have that surgery, and god I was scared as hell.

I was absolutely terrified of them opening him up again, and heaven knows I was left standing in a hallway crying my eyes out, terrified it wouldn’t work, or worse… what if something went wrong during the surgery?  The heart isn’t like an organ you can go without, and up until this point I had seen this child go through so many weird and obscure events from his time of conception up until now. I was feeling pretty hopeless that something might actually work.

G had that surgery the last week of December of 2015, and as we spent Christmas and New Years in the hospital, it seemed things might have worked. By the time he left the hospital there was no unusual build up of fluid around his heart, and over the next month or so he was weaned from his nearly 60mg of Prednisone a day. By February he was completely Prednisone free and I started to catch my breath regarding his heart. He started to lose all of that weight that comes with taking such high doses of steroids and eventually started to look like himself again.

So when G called me from school a month or so ago to tell me his chest and jaw was hurting after running at school, I took a breath in and told him to take it easy and immediately placed a call to his cardiologist (not the same cardiologist who missed his heart defect and later broke the news to me in the hallway, because that clown wasn’t touching my kid. I found the best, most experienced cardiologist I could after that), and they decided to schedule him for an angiogram which took place this month. I guess when children have this type of repair, as they grow and their heart does, it can cause some complications with the scar tissue and they have to widen the space created to let the coronary thrive without being constricted by the heart when it works a bit harder when they are active. So in my mind I was worried this is what could be going on. After all, G had a delayed growth going on since most of this happened at the time when most kids start growing, but his growth was delayed a bit because of the steroids.

As we made the trip back to the very children’s hospital where G had his previous two heart surgeries, they led me down to the same rooms we waited previously for the surgeons to come and wheel my son to the operating room. I wasn’t exactly prepared for that, because for some reason I thought a day procedure would be in a different area, but there I stood in the same hallway I had cried before. I stood there for a moment, as if I was looking into a parallel universe and wondered if I ever realized in those moments I would standing there in a space beyond that with my child. Probably not, but future me wanted to reassure past me that things were going to be okay, but in all honesty I was back in the hallway scared.

G went back for his angiogram and I was moved to a waiting area I hadn’t seen before. It was slightly nice to be placed in a new space, because I wasn’t sure I could go back to those rooms where I sat almost paralyzed in fear until the surgeon walked through the door. In this room family members sifted through the door from time to time, and I didn’t feel so alone in the worry of knowing someone you love is in the back room with a Dr running a probe up to the heart to check things out. I was able to move about the hospital this time and not be too far from the new waiting area, and this time they handed me a pager to let me know when the Dr would come and talk to me, so that helped me my mind a bit distracted this time.

When I got the page and the Dr finally came into the waiting room, I held my breath a little. I guess I have learned to brace myself for bad news, and have become an expert at moving from calm to crisis mode in 1 flat second.  Instead I got wonderful news; G’s heart is fine. They suspect the pain is from scar tissue and nerves starting to get some feeling back. At first I was trying to absorb what I was hearing. I was almost waiting for the “but”, and it didn’t come. Instead what I got was likely the first wonderful test report he has had in a very long time, and it took me a moment to get what I was hearing. He went on to say G won’t have to come back for anything other than a “Hey, how ya doin'” kinda thing. I don’t think it was until the Dr left the waiting room that it really hit me what he just said. G is fine. His heart is fine. He isn’t sick. His heart is fine.

As I sat there absorbing what he said, my fear was being slowly replaced by happy and it started to release. I have spent so much time getting bad news that to receive good news for a change seemed foreign to my body. I felt so strange with the happy coming over me I didn’t know what to do, so I walked into the hallway.

As I got up from my seat and turned the corner into the hallway, everything just poured out of me. All the fears, all of the experiences, all of the stress, all of the moments I felt as if I was standing still just released from me as this joy was filling all of the empty spaces it was leaving. I stood there leaning against the wall just sobbing, and it was the most cleansing cry I had in a very long time.

As I started to come down a little I turned my back to the wall and leaned against the wall instead of slowly descending down in a haze of tears to sit on the floor and cry as I did on the day I first heard the news he needed open heart surgery to save his life. Instead I  glanced up and wondered how many people were standing in a hallway somewhere in the hospital at that moment and receiving bad news as I have so many times before. For a moment I felt for them, and my heart knew that place all to well. I wanted for them to being hearing good things someday as I was at that moment, and hope it was in their future too. I know that when I stood in those hallways I never could move past that moment and invest in a hope for a future, because things never seemed to take 2 steps forward without moving 20 back, but I can only hope someday they can stand in a hallway and release the emotional exhaustion as the joyful hope starts to slowly take up residence again. I want that for them. I want that for me, and most of all I want that for G.

I know so many people say that you have to believe that the best possible outcome will happen in order to see good things come to pass, but I can’t tell you how many times I hoped for the good only to feel like my hope was being smashed like a tin can against the pavement when it crashed. After awhile you start to detest hope and feel like hope is nothing but a 4 lettered word while others seem to bask in all things wonderful. You start to question your faith, and if you are not careful bitterness can set in. I wish I can say I wasn’t angry at God or the world, when I found out that I was facing such a difficult pregnancy. I was really angry at the time, because I was hurting so much. I didn’t understand why I was walking around with both life and death in my body and why my surviving twin was having to struggle so much before even making his entrance into this world. You wonder why someone so young has to deal with so much crap, while those who seem to continue to live lives that don’t contribute to the good of others, just seemingly glide.. but you can’t be there. You can let that thought fly through you, but don’t grab onto it. I had to focus on the present before me and the fact is that G has changed my life in so many positive ways even though I have stood in some tough times. He is caring towards others, has a gentle loving soul, and genuine. Even if the crappy humans seem to glide through life, G is making a difference for good. A ripple starts somewhere.

As you may recall G also started having seizures shortly after his initial surgery in 2013, and it was then it was discovered he has Epilepsy. They think he has always had it, but somehow the initial repair “brought it to surface”. The good thing is as of today his medications are controlling the seizures and that is awesome. An overnight study showed he has active seizure activity when he sleeps, but so far the new medication he is on is controlling them from manifesting. That is a very good thing, but omg I do wish this kid could catch a break with his health and never have to worry about crap a kid his age typically doesn’t have to think about. But for now, we are taking all the good we can, and thankful that people live every day with Epilepsy and do just fine. That is what I am holding close for him.

G is now one down by one specialist and that much closer to just having a life outside of exam rooms, and me outside of hallways.

 

 

 

 

 

 

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MY Big Fat Life – Tolerance, Acceptance, Pray Away The Gay, and Facebook

In Uncategorized on November 6, 2014 at 12:20 am

Recently I was unfriended on Facebook.

Before I start to sound like a whiny teenager (soory teens, but you really do get freaked out about this stuff) I have to say this was someone I considreed a realy close friend at one time. Since unfriending on social media is the new “I don’t want to be your friend anymore” talk, of course it is going to sting a bit.

The reason why I was unfriended is what really gets me though. I had posted on someones page about my journey this past year. She (the friend) somehow took it as me saying you can *pray away the gay*. Gosh how I despise that saying. I wasn’t even saying that. In fact, I never even said that people can “pray away the gay”. However I also won’t minimize the role my faith has served in how things have changed for me this past year. But that change was between God and I, and a change in my faith, not some act of praying anything away.

See, I know how that “pray the gay away” thing works. It doesn’t. At least not in the traditional way the church teaches. I’ve been there. I have spent countless hours seeking pastoral counsel, asking for prayer at the altar, talking to people, praying for God to take the thoughts away, to remove the attraction, to not send me to hell because I couldn’t seem to control my thoughts when I saw an attractive woman, and pretty much everything else I could think of to “pray away the gay”. I know how hurtful that saying can be, and I know the damage it can do.

None of the above mentioned acts changed who I was. Of course they didn’t, because I was going through church approved actions expecting a result. I was in desparate places begging for changes, change of mind, change of desire, change of who I was. But none of those things changed who I was, and unless you have been there you can’t really understand that conflict between someone who identifies as a lesbian, and their faith. You can’t understand that pain that comes with it; the feeling that somehow God just doesn’t care and tossed you to the dogs to fight this conflict on your own. It really bothers me that someone could even think they have the right to challenge me on my own personal journey from where I have been, to where I am.

Let me set this out there right now. I don’t know where people stand in their own life. I can only say this is where I am, and my change came from a very quiet place between God and I, and I won’t deny the faith factor because it makes someone else uncomfortable or feeds into their need to define me based on their experiences.

I understand there will be people who will think I am really bi, or wasn’t even a lesbian at all because of this. But that isn’t their right. It isn’t my right to define you, and it isn’t your right to define me. I have no desire to even start to tell people how to *pray away the gay*. So please don’t point fingers and demand that people accept and tolerate you and your choices, while choosing to define and accuse me for living mine. Especially if you have never lived a majority of their life struggling with the idenity of your sexuality, and faith. You don’t get it.

Someone said it perfectly to me recently. He said ” I’ve found that intolerant people are just that. Usually in most aspects of their lives… So all you really lost I suppose is a person who thinks it’s ok to be them but it’s not ok to be you.” His words have stuck with me this past week, and made a real difference. It’s so true. In fact, it’s so perfectly said I don’t even need to elaborate.

With that, I will just leav this here. This is the song that came to my mind when I thought about writing this blog. I was going to post something else, but I came right back to this. I think it’s because I am not angry, I am more hurt than anything. I think this song perfectly reflects the place where I am writing this from. This life has too much sepration amongst us all. It would be such a bettrer place if we could somehow find a place where we respect each other for who we are, and not what we are.

Peace.

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.


 

My Big Fat Life – Isaac Bear

In Uncategorized on April 19, 2014 at 10:29 pm

I wanted to take a moment and explain the red bear that often appears in the photos of Gabriel. The bear is Isaac Bear.

As many already know, Gabriel had an identical twin bother, Isaac. When I was 20 weeks pregnant, it was discovered through ultrasound that I had twins. During that ultrasound, they also told me that Isaac was not alive, though they were essentially connected by one umbilical cord and Gabriel’s heart worked for both of them. I carried Isaac to term with Gabriel, since they were in their own sacs. After birth, Gabriel was in the NICU but was released after 10 days later, with a clean bill of health, according to the doctors. Of course, we would find out that wasn’t the case, after all.

A couple of years ago, Gabriel was really having a hard time sleeping. I took him to the doctor and after recommendations, I tried melatonin and a sleeping aide. Nothing seemed to work. He really struggled to fall asleep, and stay asleep. One day I was looking for some things, and came across Isaacs box. The box holds photos, and things from his funeral, that I have kept. Dried flowers, the program, and things like that. I had brought the box out and shared it with Gabriel for the first time. When we went through the box, he came across the red bear. I had bought the bear originally, as a Christmas ornament to hang on the tree, in a way to keep Isaac with us. Gabriel asked if he could have the bear, and of course I said yes. I kid you not, that night Gabriel slept through the night, as Isaac Bear sat on his bed. Ever since, Gabriel has never struggled with insomnia, the way he struggled with it prior. Now Isaac Bear follows when comfort is needed. Gabriel has told me that in a way it helps him feel like his twin is close by, and that somehow gives him a sense of comfort. I am very thankful for that bear, and the connection to Isaac that it brings for Gabriel. Anything that gives Gabriel a sense of comfort, especially now, rocks my world. I love that bear.

I will share more about Isaac another time, but for tonight I just wanted to write about the bear.

(Gabriel with Isaac Bear in ICU shortly after his open heart surgery, 8/8/2013)

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My Big Fat Life – Gabriel & Day One

In Uncategorized on April 17, 2014 at 11:13 am

Gabriel took his first colchicine pill this morning. It’s a little purple pill. It’s weird to think how much hinges on that little thing producing huge results. It reminds me of something Gabriel shouted out once, while trying to wrestle with his older (and much bigger) brother, Ben. Keep in mind this was before I knew he had a heart defect. I probably would have offered him a coloring book on the history of non aggressive play, with some soft and non threatening crayolas, had I known before they tried to do all of that play wrestling that brothers do. But I remember it so clearly when Gabriel was standing up and trying to get Ben into a mock head lock. Both boys were laughing so hard, and through the laughter Gabriel shouted out ” I may be small, but I am much bigger than my size!”. Those words were so big to say, as Gabriel has always been much smaller than his older brother despite how close in age they are.  I am hoping that is the case with this  little purple pill as well. I am hoping it is much bigger than its size, because it has a heck of job ahead. I am pretty sure Ben let Gabriel win that day, and I hope that little pill helps Gabriel win again.

When the Rheumatologist first told me about the colchicine, he told me that he had used it in only two other children with pericarditis, and without good results. He went on the state that he had just recently read an article in the New England Journal of Medicine, that says colchicine had showed promising results from preventing/reducing recurrence when used with Prednisone. What they are doing, is keeping Gabriel on the prednisone, and starting colchicine at the same time. He will taper off the prednisone over the course of weeks, until he is on colchicine only. Then we wait. Typically Gabriel starts to get sick within 2 1/2 weeks after stopping prednisone. If he can maintain on the colchicine, then that little pill is doing great big things. If not, then.. well, surgery.

When the Rheumatologist told me about the drug, he gave me a choice between that or methotrexate. The pros of colchicine are that it works much quicker, and Gabriel really needs to start getting better sooner than later. I was concerned that he hadn’t seen promising results though, and I needed more answers. Someone forwarded the report to me, and I was able to find some more after I Googled the study. I had questions about the study, so I emailed one of the investigating physicians in Italy, and asked a heap of questions. I was really worried he might not email me back, but within the day, he answered.

We exchanged emails back and forth for a few days, and he was able to answer my concerns. I started asking as many questions to cover all the basis I could. I wanted to know how many were teenagers, how many had underlying health issues, and so on. Things I felt I needed to know to help me make the most educated choice for Gabriel and might give him the best chance at feeling better, and avoiding surgery. The investigating physician stated that colchicine is worthy of adding to his prednisone treatment, so this seemed to be looking like this might be the medication worthy of a try. Even though the Rheumatologist hadn’t had promising results in the past, we all know Gabriel doesn’t seem to respond typically to a lot of things, so maybe he is the one patient that will turn this around. That is my hope, anyways.

So here is to little, but big things, today.

 

(Gabriel and I, 4-2014. I have no clue why he is squinting. When I asked him why he was, he couldn’t remember either)

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My Big Fat Life – Mariah Carey Just Verbally Hugged Me

In Uncategorized on March 4, 2014 at 9:01 pm

This is my third attempt to write an entry. Each time I sit down to say something I just stop cold. I don’t know why it feels so vulnerable to write tonight, but it does.

Gabriel saw the cardiologist recently, and he says the repair is perfect. I guess it takes 6 months to be able to tell for certain, and Gabriel has passed that benchmark.

Today was his last dose of the prednisone. I am so happy yet so scared. I am happy that he has tolerated this long round, and has seemed to come off the taper well. The true test will be over the next few weeks. I am praying this goes without incident, and perhaps we are finally heading in the right direction.

I am holding to that hope with one hand, and completely terrified to let go of the security of this medication at the same time, with the other. It’s kept him healthy and I like having my son smile again. It’s so nice to see him full of life. It does my spirit such wonderful things. Yet tonight, right now in this very moment, I want to be held. I would love to be gently consoled that things are going to be okay. I’ve been fighting back the tears all day, because as much as I have been hoping for this day, I have been dreading it at the same time. It’s like letting go of the edge of the boat after being tossed from it, to see if  you can swim after all.

Maybe that is why I feel so vulnerable in writing tonight. I feel so naked at this moment. I feel stripped of certainty, and I need clothed with reassurance. But here I am on a Tuesday night, the boys in bed, and I am trying to find a way to pull it from within myself to just keep going on when I would rather throw myself on the couch, cover my head with a blanket, and demand that the world stop for just a moment until I get my reserve. If only blankets could hug, I think I would probably not emerge from my bed until the sun broke the morning.

So weird as I write this, the song Hero by Mariah Carey just came through my speakers. I’d like to think the timing of the song has meaning. I do not by any means think I am a hero of any sort, but the lyrics are a bit of a verbal hug and heaven knows I will take what I can tonight.