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Archive for March, 2014|Monthly archive page

My Big Fat Life – Gabriels Heart

In Uncategorized on March 29, 2014 at 7:51 pm

The Cardiologist spoke with me the day before yesterday, and after speaking with the surgeon, they  have finally decided to do a CT Scan or an MRI on Gabriel, to take a closer look at things and make sure they aren’t missing anything. I am both happy they are finally doing this, and terrified they might find something that will require another surgery. They are supposed to call me Monday to schedule this, so I will be sure to write an update soon.

In considering that they might have to do another surgery, I go into an instant mode of fear. I am really struggling with the fear of having to watch my son go through that whole process again. It just makes me so sad for him. I am trying really hard not to borrow that worry, but I have to prepare myself for the possibility that this could happen.

 

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My Big Fat Life – Hallways

In Uncategorized on March 27, 2014 at 12:02 pm

Well… I write this as tears spill from my eyes. Gabriel is sick, again. We made it almost 3 weeks this time before the pain started. I took him to the cardiologist the day before yesterday, and an echo confirmed the fluid has started to build up around his heart again.

I can’t begin to describe how devastated I am.

Yesterday we saw the Rhuematoligist who put him immediately back onto Prednisone. He wants to add another medication to the mix, but is allowing me some time to research both of the ones he mentioned, since they will be a longer term treatment. One is a proven treatment (Methotrexate), though there is not a real traditional treatment for Postpericardiotonomy Syndrome. The other (Coholchicine) is showing some help in treatment though it is a fairly newly used drug for what Gabriel is dealing with. I am just at a loss trying to make sense of everything in the midst of feeling just so tired.

Yesterday the Rheumatologist started to talk about some longer term options, and I asked him if we could have that conversation in the hallway. As we stepped out into the hallway and he started telling me his thoughts, I realized that a majority of my conversations about Gabriel have taken place in a hallway. When the Dr first told me that Gabriel had something wrong with his heart, it was in the hallway at Doernbechers. When the news isn’t good, the conversations take place in the hallways outside the room of where my children are sitting. I can’t begin to count how many tears I have shed in the hallways between the hospitals and offices of the doctors he is seeing. When he had his echo this last time, when the Cardiologist said he saw fluid, I quickly excused myself and stepped into the hallway where I proceeded to lose my shit. The Dr stepped out and put his arms on my shoulders as he tried to comfort me in the moment, but even now I struggle with tears and how disappointed I am. I really, really wanted this to be his time to be healthy and not have to deal with anymore of this. I am trying to learn how to proceed with cautious hope, because each time I hope, I seem to really take it hard when things don’t work out.

Gabriel asked me if he was going to die. I can’t even begin to tell you just how hard it is to hear your child ask you such a big question. It just hurts to know he even considers this as a possibility. Yet, I have feared the same thing so many times.  Today he got tired of it all and asked me why he was given a difficult heart, and why God would do such a thing. How can I give answers to something I have asked God myself, so many times?

I need my son healthy. I want my son healthy. I want him to never have to worry or even think about his mortality at the age of 13. I need my child to have a childhood full of happy memories, and life. I need my son to have something positive  happen in his life right now. I need my child to smile.

I need some good news. I need kind words. I need hugs. I need people in my life to remember that I am not always as strong as they think I am, and sometimes I need it recognized that I have moments I feel very weak and vulnerable. I need to keep focusing on the positive and remember that there are people doing everything they can for my child. I need to feel protected right now.

Sweet Jesus…… I need to feel protected right now. I am not even sure what that looks like, but I know that is exactly what I need right now.

I need my son to heal.

I need answers.

I  need to spend less time in hallways.

Gabriel Echo 19

(Gabriel during his echo on March 19th, the one before last)

 

 

My Big Fat Life – I Learned.

In Uncategorized on March 20, 2014 at 6:39 pm

Yesterday Gabriel had another echo to check things out, since it was his two week mark of being off of the prednisone. If we can make it a few more weeks without a flare, then his chances of having made it over the bump, may have finally arrived. I’m still holding my breath a bit, but I will be so happy to finally take a breath in and let it out. That means I haven’t unpacked the hospital bag just yet, and keep it ready to go at a moments notice.I have learned a lot about what it means to be a Mom to a child who has struggled with his health. I learned that it takes a lot out of you, but it also teaches you just how important your role as a parent is. It’s more than peanut butter smeared on the counter tops, sibling rivalry, long nights, and early mornings. It is a special place of your life that carries so much joy in the midst of the battles, where you realize the strength of your children teaches you more than any parenting book ever could, and wherever your children go you will always be as well.

Since I have been relaxing a bit, I have been reflecting on what I have taken from the last 7 months. So much has changed about me. Nothing quite shakes your life up and forces you to reevaluate every thing you stand for, other than standing by as you watch someone you love struggle as a machine breathes for them. Suddenly in that moment you are faced with every truth, every moment you let slip by, every time you didn’t bend and compromise when you should have, or bent too far and settled for less than what you wanted in this life.

In the past 44 years of my life, I have seen some pretty horrible things in people. I have been on the receiving end of their bad choices, and I am sure I have hurt people along the way myself. There have been things that happened, that reminded me that I am a lot stronger than I give myself credit for, and things that have brought me to my knees and reminded me just how weak I truly am. The past 7 months though, I learned something about myself I wasn’t expecting. I learned how that it’s okay to be weak while standing strong, and it’s cool to admit that. That opened a door for me to be honest with myself in ways I wasn’t exactly ready to embrace, but I was finding the courage to.

Let me say that something I always prefer not to do, is write about the people I date. I have been asked in the past to write something, or share, but there is always this apprehension. If the relationship fails it’s just documentation of your failures. Once the words are out there, there is not taking them back. You can erase them, you can hide them, you pretend you never wrote them…. but there they are. I don’t like people knowing my secret spaces, thoughts, fears or failures. It’s always kept me a safe distance, and provide an easy escape if things go awry. On the other side of that, I don’t like talking about the break ups for the same reasons. It’s just another documentation of a failure, and heaven knows none of us need that. After all, this whole blog was birthed from a failed relationship. Who needs more evidence that love is difficult? Having said that, I am pretty sure that you have been able to gather from previous posts, that my last relationship didn’t survive the process of my sons surgery and subsequent illness over the last 7 months.

When Gabriel was sick, I stayed with him the hospital every moment of every day. When I wasn’t watching him take every single breath, and keep my eyes on the monitors, I was faced with some hard truths about me. One of those things that would forever change me as a person, is that I have a much different view on what love looks like than I used to. I used to think it was all about compromise and giving in, rather than giving up. God, I am so sick of giving in. For all of the people I have allowed into my life, and compromised for in the name of love, I spent a tremendous amount of time settling for what someone else wanted, rather than what I needed. I learned what I need is consideration. I do not want to be smothered, I don’t want to be ignored. I simply want to be the balance of being considered. There is a lot of power in that realization. This extends beyond romantic relationships. It defines so many levels of communication I share with others. Yes, life is compromise. When the cost is yourself though, that’s one hell of a price tag.

I learned that there is nothing more important than the people you can be yourself around, and still love you. I learned that it’s okay to cry and want to be held quietly. I learned it’s okay to say “no” and hold to it. I learned it is okay to say “yes” and that follow through with action is just as important as the word itself. I learned to not stress over the little battles and to pick up only the big ones. I learned to smile more, and that life is really more worthy to spend with joy in your heart if you can find it. If you find something, or someone, that makes you smile.. go for it. I learned to talk to people more. I learned to hug strangers that are family in the walk. I learned that for someone who loves words, touch is the most affirming and comforting expression to me. I learned that grief can teach you more about love and life, than a single person. I learned that consideration is not the same as smothering someone with attention. In light of that, I learned I don’t like to be smothered with attention. I learned that hope is a four letter word that can provoke anxiety. I learned that instead of hoping for the best, to just live in the now and take the changes as they come while hoping they change. I learned if circumstances don’t change, I can.

 

Most importantly I learned that life is here and now. It’s not planning for 15 years from now, not for a month from now. It is right now. I don’t want to spend the last moments of my life on this earth regretting the ways I wasted my time, or the risks not taken. I don’t want to lose another moment of being afraid of what could happen, and just embracing what is set in front of me. Having said that, I also learned to not be afraid of some changes I found myself experiencing. I learned that in those moments of facing myself, that I am attracted to men and I am learning more about what that means to me.

I also just learned how scary that was to tell you that.

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.