Experience and Perspective

It is nearly noon and I am still in my pajamas. Timmie has been nauseated all morning. We had to give her some pretty strong nausea medicine so she could hold down her cyclosporine. It is so important that she gets that in her system so her body can continue to make neutrophils. Her ANC today is 3600! I just wish we knew why she is still having fevers and severe nausea. They replaced her chest tube last night. It was clogged and not draining properly. There seems to be some controversy as to how much fluid actually remains in the lung. There also seems to be a lingering ambiguity regarding the source of her fevers and acute sickness. They did do a spinal tap last night as well because cryptococcus is known to cause spinal meningitis. It came back normal, other than a slightly low glucose level. That was a relief. Timmie has a reputation around here for remaining surprisingly stoic regardless of the severity of the circumstance. Last night, however, after waiting patiently for her procedures all day until they could squeeze her into interventional radiology, just before they administered the IV sedation medication, she burst into tears. She let out four or five heavy sobs, shivered twice, gasped for breath, and then permitted streams of tears to flow down her face. One of her friends from Interventional Radiology (Specials they call it) wiped her face with tissues and assured her that everything would be alright. They injected the medicine into her IV, and her eyes slowly closed. An hour later we were standing by her side as we have countless times as she opened her eyes from sedation. Usually she smiles once she sees us and closes her eyes once again as we rub her head gently. ( I have recently been told that that this is yet another thing for which her father seems to be more qualified). This time she reached out for my hand. Once I grasped it, she looked into my eyes and sweetly inquired, "Mom, am I ok?"  I don't know why this hit me so hard. The little girl underneath all of that maturity and stoicism came bursting out. How difficult all of this must be for her not just physically but emotionally.  At the end of the day, she just wants to be ok. I told her that everything went well and that she was just fine, as I (apparently inadequately) rubbed her forehead. I was thinking, 'Oh sweety, you are so much more than ok. You are so amazing and impressive, and I am so privileged to be your mother.' Just recently, as a mother who has watched her daughter suffer for four long months, I have been blessed with a change of heart. I don't know if I should call it a change, because I have always felt faithful and comforted, so maybe it would be better termed a growth and development of heart...not as catchy I know, but more accurate.  Let me explain. Over the past three weeks especially, during this whole lung obstacle, I have begged and pleaded with the Lord to let this trial come to an end. I have told Him that this is enough....she can't handle anymore. I have negotiated with him and explained that it seems like a righteous desire to want my family to be together, to want to be near to my sweet Julian so that I can nurture and guide him and relieve some of his confusion and fear. A few nights ago, after waking up to help Timmie go to the bathroom, I crawled back into bed and looked at the clock. It was 4am and I looked around the room as if I hadn't ever really noticed before where we were and what we were doing. I looked at Timmie sleeping peacefully, and then looked at all of the equipment that was lit up in the dark room. I heard the soft sounds of various devices against the silence of the night. The bubbling chest tube machine, the inflation and deflation of the bed mattress, the gentle breeze of air from the oxygen mask, the slow drip of the IV. Were we really here? Was this really happening?  Suddenly, I was wide awake and I knew there was no chance of falling back asleep. I began to pray. But this time it was different. I prayed, and poured out my soul, just as I have done so many times before. However this time- maybe because of the thick silence illuminated by the soft background noises or maybe because of my strange mid-night alertness- I listened. There were long pauses between my expressions of fear and helplessness. More so than ever before, I communicated with God. I could feel His words permeate my heart, then I would reply to His promptings. The details of this intimate conversation are probably best left as a personal experience, but I will share with you the results of the conversation. First, I realized that it takes much more faith to entirely submit to the will of the Lord and His timing rather than to simply believe He has the power to heal her completely and immediately. I realized I needed to start praying more to endure each day and live it as best we can and to focus less on how long this trial will continue to challenge us. What little things can I do to make the world a better place while I am confined to the fourth floor of the hospital? How can I better lift Timberly's spirits? How can I find ways to serve others? Secondly, I realized that despite what seems to be a fairly tangible spell of bad luck (there isn't a doctor or nurse here who hasn't questioned why so many things have had to go wrong with this little girl), we are definitely blessed beyond measure. Sometimes it is difficult to see our blessings when we are clouded with adversity. Because of this experience with my Heavenly Father, I started to see things a little differently. Rather than being overcome with sorrow because I am not there to mother little Julian, I recognized the amazing blessing of my family who love him just as much as I do and are willing to do anything and everything for him. I realized the blessing of friends and neighbors who have gone out of their way to  help him however they can. As I started to look around, I realized I had been focusing more on the difficult nature of this challenge than on the blessings bestowed upon us to help us endure the hardship. One of the most obvious examples of the Lord preparing us for and helping us through this trial is the relationship we have built with the Wheatley family.  We continue to receive pictures and texts from them while they enjoy their time at Disneyworld. Make a Wish has an amazing program called Give Kids the World where families like Hatcher's retreat to spend happy, hopeful times together and build lasting memories. The founder of the program is a wonderful man who is a Holocaust survivor. He explains looking into the eyes of young children battling illness and disease and relating to their suffering because he spent his childhood in turmoil and fear in an internment camp. At the Give Kids the World Village, they eat ice cream for breakfast and celebrate all of the holidays in one week.  From getting on the plane to eating ice cream for breakfast; from wearing Christmas pajamas and waiting for Santa to wearing Halloween costumes and going trick-or-treating; from bathing in a huge jet tub to feeding the dolphins and seeing Shamu, they have sent Timmie inspiring messages and pictures of the whole trip. She feels like she is there with them! She has been very weak and ill the past few weeks, but despite how awful she is feeling, she lights up with each text an photo. What a blessing they are in our lives. Just got word that little Hatch didn't feel very well last night....having some lung issues. Dang those lungs! Please pray with us that he can find the energy to enjoy the rest of his trip. As I finish up my blog I hear cheering and bells ringing in the hallway. Someone has just finished their last round of chemo. Timmie and Hatcher, in my mind that cheering is for you! I can hear the cheers of hundreds, probably thousands, back in our little Southeastern Idaho communities cheering you on as you fight. You are both such impressive fighters.   I look forward to the next opportunity you have to embrace. I will be cheering so loud!