dark days

The first day post-op. He was pretty spaced out. Really, the television was the only thing that would hold his attention for very long.

Day three: the clowns visit and Jay actually smiles. I think they are really angels in disguise. Here, they are giving him a bubble bath.

Day four: I knew Jay was feeling better when he asked to play his DS.

The dreaded walks. He hated them. I eventually had to start paying him. I think 7-up and those white styrofoam cups will always remind me of the hospital.

          

The epidural, which I have always refered to as Woman’s Best Friend, remained so as it kept my “baby” comfortable for three days. The other shot is his breathing exercise thingy. I eventually had to pay him to do those as well.

 

My viewpoint from the chair beside his bed…where I wrote the majority of this post.

Day five: Last day, tubes have been removed as well as the gown. I think just putting on his own pajamas made Jay feel so much better!

 

Before and after. Amazing! Just two small incisions.

 

I am starting this blog post as I sit in a dark hospital room, the sound of clicking is in the background as one machine pumps anesthesia, and another pumps vitamins and electrolytes into my little boy, who is laying, staring blankly at the television, as his attention is being diverted to Cartoon Network. Various tubes protrude from his body. The knowledge of another walk looms in the back of both our minds. He doesn’t want to do it. It hurts. It’s uncomfortable. It’s needed. I don’t want to make him do it but trust the doctors and nurses advice that it is crucial to his recovery.

Trust. That is a concept that has been used a lot lately. I had only met Dr. Curnow twice before surgery. I really know nothing about this man…only that he is a surgeon, one who is widely respected. That’s it. Those two letters behind his name is all I really have to go on. I had to trust that his diagnoses was correct, trust the timing of the surgery and most importantly trust in his abilities to perform the operation. The anesthesiologist, we met only moments before surgery. It took all of my trust to watch as he placed the epidural into my son’s back. The only cues I had to his abilities were looking into his very blue eyes as they focused intently on Jay. The nurses, many I never even met, but I had to trust they were well rested, alert, proficient, and able and were watching carefully everything that was going on in that operating room. My son’s life was literally placed in the hands of complete strangers, while Nick and I sat, helplessly in the waiting room, wondering what was going on behind closed doors, with nothing to go on but pure trust. The only thing that got us through those three hours of waiting was prayer; our own personal prayers to Heaven and those of so many who were praying with us.

Prayer. I have always been a prayerful person. This whole experience, however, has led me down a new road in my prayer life. This time, we are on the receiving end of  countless loving and  faithful people who have been praying for Jay and our family. Many we know personally but I also know there are many people we have never met who have been praying for us. The thought brings me to tears. I never would have been able to sit in that waiting room, trusting all of those doctors and nurses, had I not been given that trust and strength from God, through all of those prayers. More tears. The notes that poured in and the phone calls, emails and text of so many with words of encouragement and promises of prayers gave me evidence the Holy Spirit was at work. “Trust in the Lord with all your heart and lean not on your own understanding, in all your ways acknowledge him and he will make your paths straight.” ~Proverbs 3:5-6.

Transition. Well, we are now on day five. Nick and I have been taking 24 hour shifts. Transition is hard. Time in the hospital slows way down. The room is dark, no natural light. It is quiet, except for the occasional alarms and the television. Jay speaks very little. The first few days he hardly said anything at all. All communication was through body language, facial expressions and hand gestures. As the days go by he seems more alert and talkative and more like my boy. Thank God! Whichever one of us is in the hospital, we slow down too and take on the mannerisms of those around us, speaking low and slow. At the same time we are constantly on alert…ready to put out any fire or tend to any need. Then nine or ten in the morning, we switch. Nick takes hospital duty and I, unknowingly tired and hungry head out into the ordinary world. It takes my eyes a long time to adjust to the sunshine and my whole body feels dizzy and out of sorts. Luke, doesn’t know this though, and expects me to be Mommy. And although guilt of leaving follows me out those revolving doors, normalcy feels good. The more I settle into my accustomed role of motherhood to a vibrant, energetic little boy, the more I feel alive and at home. Still, something is missing. Jay’s drawers are full of clean clothes, his bed is made, is absence is palpable. Nick’s too. It wasn’t until last night that I realized I hadn’t really seen him since waiting in that surgical waiting room together. Just brief transitions and delivery of food. By nine the next morning it is my turn to return to the hospital. Thankfully, the 24 hours at home is just enough time to fuel the body with good food and vitamins, relax and get a good night’s sleep. I couldn’t do this without the help and support of my mom. She is Heaven sent! Emotions are filled with hope and optimism as I return to the hospital. So far, each time I have walked through those doors in the morning, Jay has looked better than the day before. However, looming in the back of my mind is, “what if things have turned for the worse.” My mind reflects back to the one visit Wednesday afternoon when the pain started setting in as the anesthesia wore off. It got out of control and all I could do is look into my son’s eyes as he cried begging for help. It was the worst moment here and still nothing compared to the nightmares and imaginings I had in the weeks leading up to this surgery. As each day passes, it gets easier and thankfully, with all praise going to God, this experience has not been nearly as bad as I was expecting it to be. The doctors and nurses have done everything they can to make sure Jay is comfortable and getting everything he needs for recovery, morning, noon & night…responding at all hours to our every need.

Anticipation: Hind sight is 20/20. Anticipation, on the other hand, is foggy, scary and unclear…downright disconcerting. In the months and weeks leading up to this surgery every night that I laid in bed, instead of absorbing myself in prayer, my thoughts were occupied with the most vivid and detailed images of what was coming. A stainless steel bar going into this little body. During the day, I would look at his little sunk in chest and think, “how?” Thoughts of the worst possible scenarios would wake me up in the middle of the night. I would sit straight up in bed breathless with fear. Why didn’t I immediately get down on my hands and knees and pray? Instead, I would seek diversion through silly shows on late night television. As the time creeped nearer, I got less and less sleep. Still doing everything I need to do during the day with the added pressure of making sure Jay and Luke were having the best summer possible left me exhausted. Tired, moody and downright depressed, I sought comfort in fatty and sugary food and wine. I literally drank a glass of chardonnay with a red vine straw while watching reality tv late a night. The viscious cycle of depression ensued. Seeking immediate comfort in transiet things such as food and alchohol only leaves one feeling drained, bloated, tired and more depressed. The less sleep I got the more haunting my thoughts and instead of being full of optimism and hope, fear and dread would take over and leave me in tears on a moments notice. I didn’t feel like exercising. Thankfully, I kept it together enough to have fun, each day, with the boys. Logically, I knew a healthy diet, exercise and worship were the healthy ways of coping, however, emotionally, instant gratification felt better. I experienced a transient depression with the thought of an upcoming trial. My heart goes out to those who suffer from depression for no known cause…but live their days in darkness and ambiguity.

Perspective: Our second day in the hospital, when I was still off the charts with anxiety and worry, I took Luke to the hospital playroom. There sat a sweet, little girl coloring with her mom. Her precious hairless head told me she has cancer. My heart dropped. Jay’s surgery, while exceedingly painful, was very low risk. It was performed to give him a healthier cardio-vascular life…not save his life, or given him more time while doctor’s work to find a cure. Which is the heart-breaking situation for so many children. My problems suddenly dimished. Blessed beyond reason or merit, I am a mom to two very healthy and vibrant boys. I have a husband who loves us unconditionally. A great family. A mom who will drop everything to come help me. Friends who bring me lunch. Prayers and concern of many, which I now dedicate to this treasured little girl…and her mom. I hope that I will always remember her.

Home: I sit closing this dis-jointed post of the key thoughts I had during this past week. We are home now and it feels so good! Jay is doing better than I ever expected. And I am ashamed for doubting how resilient he is. I look back on the past week I acknowledge that it was one tough week, full of highs and lows. But at the end of the day, these trials  in life define us. They give us character. Jay is going to have one great story to tell his friends some day! And I, have a lot of new grey hairs and wrinkles. Neither of us would have it any other way.