Mixed emotions have brewed over the past month. Coming to terms with our transplant results was gut wrenching; however, we didn’t spend too much time wallowing in our own self pity as we found ourselves fighting for survival once again on March 4th. Just when I thought we had hit rock bottom, a bacterial infection in the lungs sent us to the PICU for an exhausting journey. I’m confident that I can’t come close to painting an accurate picture of that experience nor would you want that. A tiny room without windows, no privacy, beeping on a whole new level, periodic children screaming for relief in the distance, a steady stream of new nurses and doctors busily moving in and out, only a chair to rest or sleep on, and worst of all your precious child lying there on a ventilator begging for just a sip of water for 7 days. I counted 9 contraptions or lines attached to her body at one given time. It left me depressed, frazzled, and out of commission for the past month.
Texting notes on an Ipad was our method of communication. Laborious and frustrating for both parties.
Wondering around in a daze, forgetting to eat, and skipping sleep leaves your memory a little foggy – thank goodness. I remember thinking over and over again… How did we end up here? For how long? How much more can we take? Constant panic, anxiety and nausea over what would come next. Begging for relief from the situation. Visits from child life specialists and teams of doctors ensured a constant bombardment of questions that we weren’t prepared to answer. Sleep deprivation to the point of emotional numbness – just mere existence. Despite the very poor prognosis given by many professionals, our vicious fighter, alongside her legion of angels, overcame the odds in a miraculous way once again. Not only did she come off the ventilator after one week, she got out of her bed and walked in the PICU on a ventilator with no pain meds. Quite a rare sight for many on that unit. When they rolled us back into 5207, you would have thought we were going to the Ritz Carlton – relief, joy, and even laughter. No more complaints about this room. Did I mention today is day 135?
Many days following the PICU were spent on the bipap once again. Progress at a snail’s pace.
Recently, a new friend at the hospital said to me, “you are so strong, how do you have continued faith through such a trial.” My mind immediately flashed to Corrie Ten Boom and a passage that I read in one of her books. Corrie evidently had extraordinarily faithful parents, and she wondered how she would measure up under life’s trials. One day she asked her father how he consistently remained unwavering in faith and pondered whether she would be capable of the same. Lovingly, he asked Corrie when he provided her with the necessary bus fare for her to travel to school/town. “Just before getting on the bus,” was Corrie’s response. Her father then comforted Corrie by assuring her that the same applies to our heavenly Father. At just the right moment in time, not a second before or a second too late, HE provides us with exactly the proportion of strength and faith to endure any trial that we may face. Today, I am living proof of such provision. Strength or unwavering faith are not of my own accord, but only because my heavenly Father has fulfilled his promises to me and offered me and my family exactly the perfect proportion of what we have needed. Has it been easy? Far from it!! Not a day passes without worry, anxiety or some bit of anguish.
March 17th marked the day for our latest goodbyes to Khaleda’s biological brother and mother. The night before they traveled home, my child and her two mothers spent the evening together in the hospital. We talked about the past and our hopes for the future. We painted nails and gave foot rubs. My heart was so heavy and burdened for her mother once again. I envisioned myself walking away from one of my children. Leaving him or her to another mother. The thought alone brought forth fear and anguish from the depths of my soul. I wanted more time with her. Time sipping tea and visiting Khaleda’s favorite places. More time hearing about her life and Khaleda’s childhood. What is she thinking? What torment to have to walk away from your child again? I wish I could comfort her? I hope she knows I’m never trying to replace her. How can I reassure her that I will do everything I can for her child, my child? Will we ever see her again? I want her to know how much I love her too. Have my actions spoken with enough volume? Together we cried the entire drive from the hospital to the apartment.
On Easter Sunday, another holiday away from home, we rejoiced in the gift of our first family meal together outside of this hospital since November. This year Easter has even deeper meaning for us. An assured hope which overcomes all fear of what our future holds. We were reminded to live in the day with a focus on what is most important despite the constant worldly distractions.
An overdue release to the local apartment has been our focus for the last few weeks. All major organs and systems seem to be stabilizing enough to accomplish this next step. What a blessing! It would be the understatement of the year – for us to say we are ready for release. I am constantly humbled in observing how the human body is fearfully and wonderfully made with such intentional detail and interwoven complexity. Each organ and physiologic process is individually unique yet highly dependent on the proper function of the others to sustain life. What may seem like a minor and isolated problem or defect can set off a cascade of destructive events in multiple processes or organs which can ultimately lead to complete dysfunction or even failure to thrive. Each organ is designed for a specific and vital purpose yet is ultimately useless on its own. The heart, lungs, kidneys, liver, blood, eyes, and hands to name only a few are all intricately designed with specific skills to work together to fulfill the needs and purpose of the body. This beautiful glimpse of the inner workings of our physical body has blessed me with a deeper and more meaningful understanding of my place and purpose in a body of believers. I can’t do anything alone nor am I meant to serve every purpose in every capacity. I’m not sure what part I am or exactly the purpose of my role, but I know there is a great plan and I’m a part of it. I am amazed by the design and honored to catch glimpses of His glory.
It’s taken a body of people to support us during this time. We are so grateful for every single prayer, card, meal and visit. We have been loved by so many in so many ways. Thank you and as always keep praying! Khaleda’s first visit outside about 1 week ago. We trekked to the hospital roof for a tour.