Ads 468x60px

Friday, June 3, 2011

rolling along with love in my heart

I never really know which words to capitalize in the title of a blog post.. i'm much more ee cummings-like and would prefer to write in all lowercase letters, but once in a while that auto-correct throws a capital letter and I just don't feel like going back to fix it. additionally, sometimes and i stress sometimes, the catholic school grammar teachers squeal in my head.

and i digress.

(image courtesy of

on the health front, things are progressing nicely. my lungs are taking in the air, and loving it. the new steroid we've added to my mix has really made a huge difference. unlike some cf patients, i respond incredibly to bronchio-dialators-- this is my asthmatic component. i am grateful for this. my liver enzymes continue to trend downward, and we have identified that it was a toxic reaction to the accumulation of six months of iv antibiotics (with some breaks here and there.) it will take a while to normalize completely, but this whole liver, acute health situation has really opened my eyes... about a lot of things, but at this moment i'm referring to my body.
i'm pretty health conscious. i don't drink. i don't smoke. i don't ingest any product that would harm me, except coffee but that's a whole other post, and even now i'm down to 2 cups a day.  i was taking 16 pills every morning, many every 4-6 hours and then another handful at night. with the help of my doctor, we've cut it down to 4 in the am and 2 in the pm... and i feel good as gold right now. this is my vehicle, my way through life and i really need to push back sometimes and draw the line. some meds are necessary at some points, but heck not always all of them.
i am also back on my every three week ivig infusion cycle that i had gotten off of due to health insurance issues. this is really helping my immune system and energy. i am thankful to god for where i sit right now.

on the family front, life is beautiful... and beautiful doesn't seem to cut it, you know? i adore my family. i am in love with them... and it's not the big things... i can do without the big things... it's the little things. two nights ago i was cleaning up the kitchen and preparing dinner for nitza and myself (ale had already eaten) and he had his 475 thomas and friends engines out. he has been a die hard thomas lover since he received his first engine from a family friend at the age of one. he is five and a half and those engines, though they get put away sometimes, are a dear confidant of this young boy... so, in the middle of moving around the kitchen at seven pm (when bath time should be commencing), he wanted to draw faces on tiny squares of paper and tape them to the front of the engines so that every face would look like the troublesome trucks

(image courtesy of

(why the troublesome trucks and not my personal favorite Percy i'll never know), and i looked down at his serious little face, scrutinizing the line of engines and i stopped what i was doing, went to the craft bin and got white paper, a gray marker scissors and tape. (dinner was starting to burn). I cut teeny tiny squares (scissor anxiety) while he drew the faces and then upon request i taped them... (and dinner turned out terrible) and these were the most rewarding, happy moments of my day because i am alive and have this beautiful boy and have the time to cut tiny squares... a thousand times over i would cut tiny squares because Sarah Jones cannot cut tiny squares with Conner and so while I was cutting tiny squares with ale, i was also cutting tiny squares for sarah... for conner... and later on, after ale was many moments into sleep, i cried... in sadness for those who have lost and for true gratitude for what i have.

(image courtesy of

i have always been a feeler. it has worked against me at times. it is hard to be in this world when sometimes you don't feel like you have skin. as kids we went to a public swimming pool just over the bridge from home. they had 45 minutes for child swim and 15 minutes for adult swim every hour. one day during adult swim there was a young girl in the water splashing around with her mother. i asked my mother (out of curiosity, not envy) why this little girl was in the water (i was always afraid of breaking rules), and my mother told me it was because she was blind and needed to be in the water when it was safest for her.  i was quiet. i sat back and watched. the fifteen minutes of adult swim passed and the girl got out of the water, but i couldn't go on laughing and playing like i did before i understood what i perceived to be this girl missing out (whatever that really means in hindsight). the rest of my day i just wanted to play with the girl and i was sick about this for a few days. i have pain when others have pain. i don't love it and i have learned to deal with it, but at times its really really hard. and that's why i am awake. something wakes me in the evening and my mind starts on a movie reel of what ive taken in from the day... just life and sometimes there is just enough sadness that i cannot go back to sleep, but you know that's ok. i like the person i am and if it means some sleepless nights, so be it. i am able to truly connect with people and i believe that its a part of me (and so many others) that god has put in my heart... and there is a whole lot of strawberry eating beauty in this world for me to take in

and did you know my favorite color is orange... i love everything orange and i mean everything, and it makes my heart so happy to see this orange gerbera daisy blooming in our garden after nitza replanted it from when my mom brought it to me in the hospital.

wow this is getting long and babbling.  today is friday and i am looking forward to today and the upcoming weekend.  we are making the trip to see my family for my sister's graduation party...
DID I MENTION THAT ERIN IS A NURSE?? (i love you my dear baby sister). hopefully there will be pictures to follow.
Beautiful Erin the the processional to the stage.


let the madness ensue with a endless face squeezing hugs from my blondie nephew to my gorgeous grandmother, his great-grandmother.

ive been having trouble uploading pics, hence the last number of posts with a whole lot of words, but ill get it figured out.

for today, this is how i am going to take on life.

 thanks for reading my very long windy monologue about troublesome trucks and a whole lot of feeling.


Post a Comment