Thursday, November 6, 2008

The truth about a rough day

My family has suffered for close to five years now, with sporadic relief. I work very hard to find happiness through that suffering, to remain positive and optimistic, strong and steady. I do not have a perfect record, that’s for sure, but I try. When I fail I think it catches people around me off guard, and they of course, being kind and caring individuals want to comfort me. There is a breathless moment I sometimes encounter when someone offers a very simple, well meant, already exhausted solution to whatever issue might be bobbing in our family current. I begin to explain Sara’s rare conditions, which leads to more explanations about her other rare conditions…which then leads to me speaking rapidly trying to lay out our complicated roadmap of effort before this present turmoil….and sometimes..not always…my listener begins to drift away and probably count their own blessings, or just wish that they had never asked in the first place. I can’t say that I blame them. I have learned to just plug a cork in it, and keep my complaints and explanations short and sweet. Most people around me know that I am a single mom with three kids, and that I have an unusual daughter with special needs….but I don’t really talk about it at length with anyone except my parents, my ex husband, and my boyfriend. There is simply not enough time, and honestly not enough common knowledge of those sharp particulars and confusing details. I choose not to sacrifice even more precious time that CHARGE syndrome, and Eosiniphilic Esophagitis might threaten to unnecessarily take away from me, and my precious family that needs so much more than they are getting. On a page, it is easier for me to share, because frankly that breathless social moment is a polite formality that I detest. Perhaps by now I should have learned to handle myself with more grace and strength. I pray for both grace and strength, but at the same time I hope they fall in line behind Sara’s ability to breathe and understand, or rest for Griffin and Grant’s weary little spirits. I prioritize easily, even my hopes and emotions.

I have mastered the short run. I have surprised myself time and again with my capacity to bend the path of where I thought I was going, what I thought I needed, and certainly what I wanted. I have recited the serenity prayer to accept the illness I cannot change, the healthcare policies I cannot change, and for the courage to change my outlook, so often crowded by seemingly insurmountable tasks from downright bleak to one of hope, and to never stop searching for any little part of this daily battle that I CAN change. I don’t know that praying for the wisdom to know the difference has really worked yet…. That’s all great, but I am really ready for whatever lesson it is that I am missing to master the long run. I am praying now to learn: How do I keep this pace forever? What am I doing wrong, because I am running out of steam and I sure do have a long way to go. I don’t feel as if I can’t do it. I know I can, I just don’t know how.
Having written all of that, I will wake up tomorrow morning, and after a strong cup of coffee move through the motions of my day. I will sincerely believe in my heart that there will be more happy minutes than any other kind of minutes. Just as sincerely as I hurt and obsess over my long run, I will sincerely smile and laugh with those around me. The very act of leaving the painful truths behind on a page somewhere, makes those minutes of happiness feel genuine, and they are. I surrender to this evening; this day that brought me to my knees,it is ready to pass…..
This morning I stood in the window of a public service agency and cried tears of joy that a medical expense of $1170 per month will not be squeezed from the dry rock of my family budget. The state employee that pulled up Sara’s file cried too, and so did her co workers. That is a sharp and welcomed contrast to Nancy, the intake coordinator at Apria healthcare that has been the bearer of bad news and bad attitude for the last 7 days. We have been given several months to rearrange her care plan. I must admit, my pumpkin spice latte’ tastes much sweeter this morning. Once again God has filled the void.


  1. I am speechless at this entry. It's beautiful, don't change a word. Your style is so succinct, and gets straight to the heart of the matter. I kept saying, "baby steps baby steps" as I was reading it.........I can't even know the heights to which you and Sara feel joy or the depths to which you feel pain. I can only wonder at your endless resources of strength (and yes, you have them). You should write a book. This story, your story, needs to be shared with the world.

  2. You're the best Jenee, all I could think as I hit post was how despressing and pity partyish it must sound! I dont have much funny material lately. love you!

  3. melissa i jsut came here off the facebook thing its great to mine and ull see many links to ones i read plus ull see my speach i dd for the aus charge conf id love u to c it and along with all the toehrs that i have each person u click on has all different chargers ull find ur self contented in no time laughign and giggling over the joys and crying over the sadness of all our friends in charge that we call our blogging fam glad to have u join us and they will be to love u heapsx