Friday, November 28, 2014

My Gratitude

Yesterday wasn't just Thanksgiving. It was also my nephew's birthday. I had intended to write and post our story yesterday, but unfortunately I spent the evening in the ER and wasn't able to go to his birthday party. Prior to going to the hospital, I slept through Thanksgiving dinner, which is usually what happens AFTER the turkey. It was a backwards day, but I realized this morning that it happened exactly how it was supposed to be. I'll explain.

When Ethan was born, I was recovering from my fourth surgery in sixth months, and the open incision in my abdomen had barely healed. I was in a dark place. I had hoped to be at his birth, but a recent ER trip made it unsafe. I was able to go see him, though. I remember it like a dream. I was wearing my Miami University sweatshirt and black sweatpants. I felt numb going in, until I saw him, and my heart opened up.

I can't remember if I was able to hold him or not. I want to say I didn't, because there was concern about exposing him to my ER germs. But it didn't matter. I was in a trance. I had never loved anything or anyone more than I loved him at that moment. Keith and Sonja had given ALL of us a precious gift! And our journey had just begun.

When Ethan was over, and it would be time for him to nap or go to bed, he would make this little moaning sound. A cross between a Yoga Ohm and the sound I imagine a baby calf makes. He would never just lay down and go to sleep. He had to move. So I would walk with him in my arms, and I would make the moaning sound back to him. And eventually he would fall asleep with his head against my heart. They would call me the "Baby Whisperer".

As he grew up and the moan was no longer happening, it took more to get him to fall to sleep. So I made up a little lullaby in Spanish. It was repetitive and I probably conjugated a verb or few wrong from lack of practice, but it became the song that made him sleep.  I would sing it over and over, and eventually he would fall asleep. It would almost always get him to stop crying. There was even a time when my parents and Keith and Sonja were taking Ethan to meet family in Louisville, KY, and in the car he just started crying uncontrollably. So they called me on the phone with the speaker on, and I sang it to him, and it quickly soothed him back to sleep.

I've referenced in past posts that my health has been pretty horrible for the past fifteen years. Several pretty significant health issues occurred in his early years, and the only thing that gave me the will to live was that little soul. He was my North Star. When I felt lost or like I couldn't take anymore, I thought of him, and it pulled me through. I imagined the feeling of him in my arms when his body would be against my chest, hearing my heartbeat, and me feeling his, and it was like this force greater than my illness.

I've always believed in God, and these words are not meant to say that the Divine hasn't had an enormous meaning in my life. But Ethan gave me something that made me want to live. I would tap into the force that had linked us from the time he was born, and I could feel it pulling me back home. I lost my own son when I was six months pregnant, and that pain never goes away. But from the time Ethan was born, I loved him as though he was my own.

When Ethan started talking, I desperately wanted him to call me "Tia", which is aunt in Spanish. I was a Spanish major in college, so I thought it would be fun. One day, he just looked at me and said, "YaYa". And that became my name. We were buddies. As he grew up and started talking more, each moment was an adventure. He was busy, always building, playing with trucks, playing outside in the mud, in the trees, in anything that fell in your typical boy activities.

When he started really talking, it was non-stop entertainment. At the same time, though, I swear he could feel my absence when I would go into the hospital. Keith would have Ethan call and leave me messages on my cell so I could listen to them when I was there. There is a story from when Ethan was a little over 2 years old. Keith and Sonja brought him over for a family dinner. After eating, everyone was visiting while my mom was doing the dishes, and she heard this little pounding. She followed it to my bedroom door, which was closed, where Ethan had brought a few toys. He was pounding on my door and yelling, "YaYa, YaYa! Come out with me!"

It broke my heart, but at the same time I took it as a symbol of how close we were. We were buddies. There have been times over the years where I felt like my best friend was that little monkey. It was pure love; no anger, no arguing, no fear. Just unconditional love. In truth, he always seemed (and at times still does) to think I was his age. When he was around four, he told me, "YaYa, when we grow up, we can either have a taco stand or drive a garbage truck." I've always leaned to the former, but who knows.

When my second nephew, Eli, came along, the brothers were linked from the word go. Ethan has always been protective of his little brother. As an infant, Eli would fuss as babies do, and Ethan would sing him the Spanish lullaby. He knew the words by heart.  When Eli started talking and no one could understand him, Ethan would ask him to repeat it, and Ethan would serve as a little translator. It was precious. The two of them remind of Tom Sawyer and Huck Finn. They are everything to me.

Last year, I missed Ethan's birthday because I was still so sick from my surgeries. I was dealing with some horrible side effects, so there was no way I could go. That's why I was SO excited to go to his birthday yesterday. I was having so much trouble breathing and wheezing that my doctor said to go to the ER. I was so heartbroken to miss it.

He talks to me a lot about me being sick, and he just doesn't understand why YaYa isn't fixed already. I give him the best positive answer that I can when I tell him I am slowly but surely getting better. I hope it works for him. I say it to myself, too. Sometimes I believe it, sometimes not. But I have so much to live for. Not everyone is blessed with love like this.

So actually, being in the ER was were I was meant to be. I got the help I needed. He was so busy with his gifts that I doubt he even noticed that I wasn't there. From my gurney in the ER, where the frustrations of my health issues were overwhelming me, I had a thought. I am meant to get better. I hear that two year old banging on my door, asking me to come out to play. I have to be well enough to be on the other side of that door going forward. I have to be there when my now 7 year old nephew comes knocking, because I'm his YaYa. I can't imagine a greater purpose than that, and I could not be more grateful.
Te quiero, mi sobrino, Te quiero, mi amor! Te quiro, mi sobrino, Te quiero, mi amor. Nunca sera un tiempo cuando que no te quiera!
Happy Birthday, Ethan! I love you more than moon and stars!

Tuesday, November 25, 2014

The Tightrope

As many of my readers know, I had major abdominal surgery in September. It was my fourth surgery in thirteen months, and needless to say, I was a wee bit nervous. Third only to my love and faith in the Divine, and the unconditional love of my family and friends was my trust in my amazing surgeon, Dr. Steven Steinberg.  He operated on me in 2010, and my surgery was very complicated, but he did an amazing job repairing a huge hernia; one that no other doctor wanted to touch.

After a dangerous bowel obstruction this summer, Dr. Steinberg went into my abdomen to see what was causing my issues. I went into surgery shaking, but I came out feeling at peace with the world. My mom even commented on it. I looked serene, even with over 40 staples in my abdomen. I could feel divine love and healing flowing through my body, healing all of the parts of me that had broken for so long. I had faith and I had hope, and God did the rest.

As I've continued to heal from my September surgery, I've noticed that not only is the surgical pain healing, but the pain that the surgery was meant to correct is healing, too. It's not gone, and in truth, I've been told I'll likely never be completely out of pain. I prayed and prayed to get through surgery without any crazy complications like last summer's surgical debacle, and I made it through. So I have been praying and praying for my pain to ease, and it has healed enough to go significantly down on my pain medications. It's precious to be in less pain! What a gift!

The process of reducing pain meds can be a long and arduous process, and it can make even the most chipper person feel gloomy. This week was a very dark one as I've started feeling the negative effects of a process that I'm ecstatic to be in a position to go through. If surgery hadn't helped, I would have needed more of these medicines that are a great help, but huge hindrance at the same time. They may free you from some of the pain, but you pay a price. It's a prison, in truth, making many things impossible.  So I suppose you could say I'm breaking out of prison with the guidance of my doctor. It's time for my version of "The Shawshank Redemption".

Withdrawal can be demoralizing. Some of the side-effects are depression, anxiety, insomnia, and those are some of the tolerable ones. This week I took a big step down on my dose of one of my pain medications, and I took a big emotional step into a ditch of depression. I was too nauseous to do much of anything. In my mind, I was walking a tightrope. If I fell to either side, it was a drop back into the day to day numbness that kept my world in a haze. The alternative is to focus on walking the line on this gradual healing. Life changes from one day to the next, and all I can do is put one foot in front of another. I'm on a voyage to clarity and liberation.

I feel like my capacity for joy has been infinitely increased by my capacity for hurt. I find radiance in simple things that others might find insignificant. Love is even better on this side of illness. I feel so much more of myself to share now that I don't have to focus everything into coping with pain. It isn't gone, but it is SO much better. That's worth a celebration. Hell, it's worth a parade! When I feel frustrated, I remember that feeling of peace I experienced right after surgery, and I know THIS TOO SHALL PASS!

Sunday, November 23, 2014

You Are My Sunshine

I've always been surrounded with love. I don't have any sisters, but I've been blessed with the most remarkable, sweet, ornery and loving brother. When I was around 5 years old, my mom's best friend since middle school and a friend from high school got married. When I was 7-ish, they had their first daughter, and a little sister was born. Angie was an angel in personality and appearance.

I still remember my first baby-sitting job was to sit and hold the bottle in Angie's mouth who was sitting in her little baby seat while her mom mowed the front lawn. I remember how it felt, what an honor it was to be trusted to hold the bottle in her perfectly pursed lips. I loved her so much (and still do!) Watching her here or there (under supervision) taught me to do what I always wanted to be someday. I was like a little mother, as my Nana would call me.

Not too many years later, her precious and spunky sister was born. Becky was feisty from the word go. By the time she was born, I was old enough to baby-sit (at least in those days.) In her early years, she couldn't say my name, and "Jessica" became "Gah-kah" (phonetically speaking.) As they grew up,  we would have "giggle parties", and "dance parties". I haven't had the occasion to see either of them dance, but if they suck at it, then it is ENTIRELY my fault. For whatever reason, back then they saw me as some sort of dance messiah, and I am riddled with the occasional worry that I may have stunted their dance growth. God willing, they've both had interventions and don't move like I did. We almost always had fun. They were a joy to watch!

When I went off to college (and it's still a mystery why their parents allowed this), their mom, Kathy, drove them to Oxford for Miami's little sibs' weekend. My brother was in high school and wasn't into it, so I had my two "sisters" and one of their friends come in for the weekend. God bless my roommate, because all five of us stayed in our dorm room. Becky was still young enough to give piggy-back rides, and there were always fun activities going on.  It was a precious experience filled with laughter and chatter, and they were all still in one piece when they were picked up. I think they came back my sophomore year (I'm too old to remember for sure.)

Our families have grown up together. They've seen me at about every stage of this fifteen year old illness, and I even missed Angie's wedding because of it. But I was there with her, even though in person, I wasn't. I've seen Angie's little boy over the years, and I see qualities of her at that age. I saw Becky get married, and she was a lovely bride. She and her husband moved to California for several years, and I loved hearing about what she was doing. I remembered when I moved to D.C. at about the same age, and how great it felt to get out of Ohio.

They are family.

It's been a rough week. Surgery helped my pain quite a bit, and I'm gratefully going down on some of my pain meds. The side effects are less than fun. To name just a few symptoms, there's the suck-your-soul-out depression, the infuriating insomnia coupled with atrotious anxiety. It's not quite a good time.

Yesterday, I just needed to get out of the house. My mom and I were just starting our voyage through the fruit and vegetable area at the grocery, when I see this glowing face and two big brown eyes that used to look right through to my soul when I would hold her bottle. It was Angie, all coordinated with a cute scarf and purse and coat.... all grown up. She came over and gave me a huge hug, which gave my soul one, too. We talked about her job, her little boy, which brought tears of joys to her eyes. She was a dynamic, beaming ray of light that lifted me right out of my funk. My little sister.

Who knew I could find so much sunshine in Kroger...

Saturday, November 8, 2014

The Times I've Wished Away

There is a pattern I have begun to realize in myself that needs some work. Year after year of dealing with condition after condition, I have developed a habit to get me through whatever has plagued me at any given time. Each time I've been knocked down, I've prayed for the strength to get to a better place, physically, emotionally or spiritually (or all three.) I have found myself wishing away time, hoping that somewhere in the future, I would find myself feeling better. Then that time would come, and something else would happen. And once again, I would find myself wishing away time, hoping that sometime in the not so far future, I would find myself with less stress, less illness, less hopelessness; less whatever challenge was standing before me. 

While I realize that such thoughts are, in truth, very human, I have begun to look back at the overall fifteen years of illness and pain and wonder how many precious moments I have missed along the way, because I've been too busy wishing away time for something better. Perhaps if my health were more predictable, I wouldn't find myself doing this so often. I wouldn't be plagued by SO many episodes that hurt SO much. I wouldn't feel tortured by a pain that has had me on my knees, praying for it to pass.

However, my health issues have consistently put me in these situations, from hospitalizations, surgeries or long periods of pain. And whether it is normal or not, I've tossed many pennies into the proverbial wishing well with hope for the pain to stop, for healing to start and for time to pass so that I can start my life anew. I've spent so much of my life waiting for that moment when all the planets are perfectly aligned that I've missed more than my share of shooting stars on a long walk awaiting a perfect life that will never be.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                               
There are no perfect moments awaiting our arrival, but rather there are many moments awaiting our minds' and hearts' desire and ability to make them as perfect and precious as we can.  Moments don't have to be perfect to be precious. I can't beat myself up for all the times I've wished away, but I can go forward and learn to see the positive things that surround me even if I am in the hospital or in pain.  I can be grateful that the past year of 4 surgeries, a colostomy, and a lot of pain is behind me. And when I flip that coin, it is only after going through this past year that has made even the most simple moments feel magical.

Whether we notice it or not, time races by. It certainly doesn't need any help to do that. So I will keep those wishes to myself, and allow it to pass by on its own. I'm just so grateful to be along for the ride!