Grab Some Coffee, This is A Long One

I'd just like to point out that I think God's timing is rarely understood but I am sometimes grateful for that. Take the last week. Beware, for this is not meant to be narcissistic or an "all about me and my health problems" post, but it's worth mentioning.

Monday: I am taken by ambulance to the most ghetto ER ever in Queens for what we assume is an allergic reaction to shrimp but later assume that it was an allergic reaction to one of the spices on the shrimp (leading to the hives, swelling, asthma attack) and it was the shrimp that shot the stone from my gallbladder, causing me crippling pain. I leave that hospital because I feared for my life more in the waiting room than I did walking out so that's what I did. I left. At the time I thought it was only an allergic reaction yet the pain in my abdomen stuck. Cramps or indigestion, maybe.

Tuesday: I am still not feeling in tip-top shape and my stomach continues to bloat. Like, 9-month prego lady belly. And hard, and painful. No matter how much indigestion crap I manage to take, the pain is still there. I grow a bit concerned and head into my PCP downtown Manhattan who hands me some Percocet, draws some blood, and says she'll let me know the results tomorrow. I go home, take a pill, and go to sleep. I wake up at 11:30 p.m. in the most excruciating pain ever and a stomach that is now, if possible, 14-months pregnant. I call my mom, my health consultant in times where I need a bit of a push to wise up, and she tells me to get to the ER. Since I know I am not taking any ambulance to Ghetto Medical, Manny and I decide the best thing for us to do is have him take me to NYU, who's ER we have had very good experiences with in the past and I know from Anna's birth and her subsequent 2-week stay in the NICU there that we like NYU.  So we place a few calls to close friends and thank God Angela picks up and says she can get in a cab and be at our place by midnight to stay with the kids. If she couldn't have come, it would have been me calling Habeeb to take me to the ER in a $30 black car ride that would have left me more sick getting out of than when I got in. By the time we get to the ER, I have tears from the pain and all the confusion.

I had two great doctors, and one in particular came over to examine me, saw my yellowing eyes and knew immediately. She suspected a gall stone blockage on my common bile duct. She drew me a little diagram, ordered a sonogram and an MRI, and gave me some pain meds. At that point I kind of go blank. I remember seeing the gall stones on the sonogram. Then I remember being admitted. Then I don't remember much until I get to the MRI area of the hospital, and they load me onto this machine that still gives me panic attacks just thinking I actually had to do this. They suited me up for Battlestar Gattaca, loaded me into a tube that was more reminiscent of a coffin, and then I hear BOOM BOOM BOOM, over and over, louder and louder.

I think to myself: What would Dad do? Dad is a known-clausterphobic and couldn't have done this. Then I ask, What would Mom do? Mom is a tough cookie. She'd suck it up and get the job done. 10 minutes of trying to be like my mom but really reacting like my dad left me too split to continue and I hit the emergency button and asked the guy to get me the hell out of there. I told him I'd need medicated if he wanted me back in there. A really nice lady came over and said I was doing great and that I "only had 40 minutes to go" at which point I said no way I can do 40 more minutes. The previous 10 I was in there I envisioned liver cancer, gallbladder disease, brain tumors and lung problems. I also thought of the ramifications of a fire and saw everybody fleeing the MRI station and leaving me there, stuck in a tube with no idea until I was burning alive. It was too much. My imagination had gotten the best of me. So realizing the seriousness of the situation and knowing my doctor really needed this MRI, I took the nice lady whom I will never forget up on her offer, and she stood outside the tube and held my legs the entire time. I envisioned it was my mom, holding my ankles and cheering me on for what I think is the longest MRI ever in NYU history.

Wednesday: The doc's review the MRI and decide I need some procedure called a MSRP or a MRSP or an ABCD which was basically an endoscopy. They laid me on my stomach, stuck a tube down my throat, and went fishing for gallbladder stones. I was under general anesthesia, mind you, but was a little annoyed at those in the operating room for not fixing my lips, especially my top one, which got caught between my teeth and ended up swelling to Donald Duck proportions the following day. I will never forget the fogginess of coming out of general anesthesia to 8 doctors surrounding my bedside and the pain not only NOT gone, but worse. I told them, I know the pain of a gallstone blockage, and I have more. The pain is worse. I didn't think it could get worse. But it did. That's all I remember, thanks to the copious amounts of morphine. Thankfully Manny was able to be around for most of this, because Angela and Fredda took a few night shifts and stayed with the kids while this was all going on. Taryn, Anna's awesome caretaker and who we like to call our Grandma-On-Payroll, was here every morning and afternoon helping out, too. We couldn't ask for better friends here.

Thursday: Gallbladder removal. I hadn't had anything to eat since Tuesday besides ice chips and the sips of water I'd sneak when no one was looking. I had conversations with my Pap Christopher, who passed last May. I sympathized that living in that much pain must have been horrible, and I was happy he was in a better place. I promised him I'd take better care of myself. That's what he'd want. I think I had a few conversations with some famous people too. I couldn't stop singing Billy Joel tunes, especially Uptown Girl and Piano Man. My head was a mess. The 2-hour surgery ended up lasting 5 because after they took out my gallbladder riddled with stones they found more blockages (I had an "I told you so" moment) and had to send someone to literally fetch the right equipment to get out the blockages. I think I had 6 blockages and about 72 gallstones in my gallbladder total. My lungs collapsed during surgery, which I guess isn't too abnormal, but I'll tell you, breathing has never hurt worse. Abuelo came over to hang out with Anna during this crazy day, and we were more than thankful. She is so cool around her grandpa's now and that makes us very happy.

Friday: Chest X-Ray because they think I have pneumonia. I don't, but it scares me into doing my breathing exercises and getting up to walk. I refuse to take anymore morphine because it suppresses my breathing too much, and any pain med I've had other than over the counter stuff causes me to itch uncontrollably. So they were giving me morphine and benadryl. No wonder I don't remember most of my stay there. Amy came up to stay at the house for the weekend, and brought her adorable babes Bella. I heard Bella and Anna got along really well, and laughed a lot when they saw each other.

Saturday: More recovery. Thankfully Abuelo was around to take Gabe to a circus show in Manhattan and get him out of the house. It was a great gift, for Gabe and for us.

Sunday: Really expecting to get out today. But my liver was so inflamed from the past few months of me ignoring it and then 2 back-to-back surgeries, that it just wasn't working at 100%. Doctors kept me another day, which led to total meltdown and crying fit, but it was probably for the best. I would have gotten home and done too much lifting (a.k.a. Anna) and probably ended up back in the hospital.

Monday: I had the nurse take my morning blood draw at 3 a.m. so it'd be back by 7 when the doctor's did their rounds. It came back at 6, and I got the word I could go at 7:30. Angela came to pick me up while I hustled like an old lady to pack up my stuff. We walked out after all the discharge paperwork was done and headed home.

I learned a few things this week. One, I need to take better care of myself. Since I am on a no-fat diet for the next 6 months anyway, I might as well make a whole life-change. Manny's on board, too, which is awesome. As we were walking around the hospital wing, we kept joking it was just a foreshadowing of our future. But I always wanted to be that really fit 70-year old who golfed or played tennis or went swimming or still traveled. I saw people the same age with two totally different lives in the west wing of the 14th floor. One guy, about 60, came in to visit his buddy while in his runner's gear and was totally in shape. His buddy, well, not so much. It just taught me a lesson. Take better care of yourself.

The other thing I learned was that - unbeknownst to me - I absolutely love my life. I always dream and talk about getting away. I want to go backpack Europe for 2 weeks. Go on a 10-day Mediterranean adventure. Sail the Caribbean. Common theme: Get. Away. From. My. Life. But, after being pulled away from my life for a week, I wanted nothing more to get back to it. I couldn't think about how much I missed the kids or I'd cry too much. But I couldn't wait to play with Anna's curls, smell her skin, kiss her cheeks, and look into her eyes. I couldn't wait to see Gabe, ask how his week at school was, or watch a movie together. I didn't talk to Gabe at all while I was in the hospital. I knew it'd make me too sad. But one night, I was on the phone with Manny and he was putting Anna to bed. I told her how much I missed her, and how I was sick in the hospital but that I was getting better and would be home soon, and she started crying. Manny said her whole face transformed when I delivered the news and she was sad for me. I didn't mean to do that to her.... So I told her I was feeling better, and to take care of herself, and I'd be home soon. She answered with her Yes/No cards that she missed me a lot and wanted me home. Through even our worst days together when we want nothing to do with one another (trust me, they happen), we have become best buds.

When I walked in on Monday, she was in her chair, and she was shocked to see me. Her eyes opened wide and she started crying she was so overcome with emotion. I cried too. Before this, I spent half my time wishing my life were something different, and if I left it to go on some trip I would be happy I did. But there is a difference when you are taken from your life instead, and the little things that get to you end up meaning the most to you. Anna and I ended up hanging out on my bed for the majority of the evening, where we didn't take our eyes off one another and held hands. We've become bosom buddies. I realized... Back to God's timing... That our 1-year "anniversary" of Anna's diagnosis is tomorrow.

Without being pulled from my life this past week, perhaps I would have gotten caught up in pitying it, which is something I never want to do, and never want from anyone else. The Rett diagnosis is hard, trust me, but I finally "get" the mom's who say they wouldn't trade it for anything. I get it.

I read this today:

Some see our daughters as powerless; we know the enormous power they have.
She may not walk, but she helps us walk taller.
She struggles to move, but moves hearts.
She needs to be fed, yet feeds our spirits.
We seek to understand her, yet in doing so, we understand far more in life than most could ever imagine.
She may not speak in words, but speaks to us in the silent language of love.
We are the lucky ones by far.

Before this week, I would have read this and thought, "okay... You think this because you're stuck." After this week, I read this and thought, "Yes! We are the lucky ones by far! Anna saved us from a normal mundane boring life. Because of her, our eyes are open to the rest of the world."

And while I sat in that hospital, I thought of all the times she has been the patient, and how courageous and brave and strong she is. It takes a lot to live with Rett, but she does it gracefully. And beautifully.

Hello 1-year marker. I am a much better person now than we first met. There is no need for me to relive the day we met. We've done too much good in the past 12 months to go down that self-destructive path. We'll never forget it, but sometimes it's best to not remember it. Because then you win, and we don't like losing.