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Archive for December, 2015|Monthly archive page

My Big Fat Life – NYE in the ICU

In Uncategorized on December 31, 2015 at 3:00 pm

I’m writing this from the ICU where Gabriel is in a medicated sleep. He had surgery yesterday morning on his heart again. This time it was the pericardium strip. The Drs. are hoping this cures Gabriel from the chronic surgically induced percarditis that has been plaguing him since his initial heart surgery in 2013.

I have to say that I am amazed at how brave he is about it all. He wanted this surgery so bad, and was even excited to have it done. Me, on the other hand, cried like a wuss and was terrified for him to go under again. But then again, I get a paper cut and the whole world needs to halt. I wish I had an ouce of the courage he seems to have. I’m beyond grateful that Gabriel has such a great team of doctors that have been proactive to see that Gabriel had this procedure done, because speaking to others on the forums has taught me that this isn’t always the case. I’m beyond thankful that they care about him in the way they do, that makes me feel like he is more than just a pateint, but someone they honestly care about.

There’s a baby that has been recently brought to the ICU floor, and the poor thing has been crying a majority of the time. I can’t help but remember what it was like that day that Gabriel was transported by ambulance up to Portland after he was born, and sent to the NICU. I was so scared that day and I feel for the mom who must be worried, stressed out, and terrified for her baby. It takes me back to the when Gabriel was a newborn himself, and transpoted to the NICU shortly after birth. He was such a sick baby, and it seems despite his naturally easy going nature, his health has always been a struggle. I really hope whoever the parents are, they are surrounded with as much support as I feel today.

It’s hard not to be reminded about how things were the last time I sat in the ICU with him just over 2 years ago. I don’t really recall it being so sunny outside, even though he had his surgery in summer. Yet as I look out the huge window next to me, the sun outside would have you deceived into thinking it’s warm outside even though the temperature has a different story to tell which is pretty symbolic of the rainbows I’ve chased in the past. I also don’t recall being this comforatble with things even though it really sucks to see him in pain when he is awake and I feel helpless that I can’t make the pain go away  (trust I am constantly asking the nurses about keeping on top of his pain meds). Maybe I don’t remember those things because I was in a much different place in my life, though I am sure part of it was because I was paralyzed with the fear that I am certain most parents feel when they see their child right after open heart surgery, and with a breathing tube. I do recall though that when Gabriel was in ICU last that watching him struggle made me question my own life, and it’s where I had my great epiphany that life wasn’t where I wanted it to be. I came face to face with my own mortality, and it was like meeting a stranger that I didn’t know how to talk to. It was in that moment that I was honest with myself, and feel that God was giving me the directions He was patiently waiting me to ask for. If you’ve ever been in the car with me while I got lost, you’d understand how sometimes this can take awhile while I insist on navigating getting lost on my own. This time though there have been no great questions, no great revelations that life isn’t on the path I don’t want it to be; because despite the reason we are here I honestly feel like life is in a much better place than where it was two years ago, and the things I would change now are probably the typical things most people would if they had the power and an extra million lying around.

Since his first surgery we’ve moved, the kids are doing amazing with their studies, and life in general is calmer (if that’s ever truly possible with teenagers). The biggest personal change is that I met someone who in a world full of people, makes me believe that love stories do exsist. He’s kind, generous, gentle, careful with my heart, and I’m crazy in love with his smile, and the man he is. Sometimes it seems surreal that all the things I believed about love that were just a legend, really do exsist. He’s made me a believer.

Every year I tell myself that I am going to go out and be an adult for New Years Eve. One of the few past attempts I had,  I ended up abandoned by my friend on the dance floor of a drag bar, so she could kiss the girl she had a crush on a few bars down the road. I caught a cab to my car and ended up home minutes past midnight. This seems pretty randomly average for me so I didn’t take a great offense by it, but it served as yet another miss for the target at having fun on New Years. This year it seems almost appropriate that I will be sitting in the hospital room with Gabriel while his health is hopefully being given back to him, and with my amazing boyfriend while a million people gather outside of Times Square, or on the dance floors of drag bars across America, to celebrate a day that people use to mark change. I wouldn’t trade places with any of them if given the chance. I’m not only where I need to be, but where I want to be. Being able to say that both are a perfect coupling is a pretty amazing thing.

 

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