surviving one more day

so this is another looooong post! i need to do at least 4 posts so they are all going to get crammed into one. patience ....

the last 24 hours has been a whirlwind of emotions, not sure how i feel or what to think or how to express, or even how to blog the way i would like to ... but here it goes....


yesterday was also my madre's birthday! in amongst all the comotion of saylors tests, apts, procedures, etc.. we celebrated quickly at kneaders. My mom deserves more of a tribute then i have eloquence to give. she is an superb example of sacrafice and willingness to serve those she loves. she is my kiddos second mother and in more of way than any other grandma out there, she really does play mom to them for weeks and weeks at a time. her life is changing to ... (see below) and especially at this time i am grateful for my mom.


last night after we settled back in and cleaned up the first cathing catastraphe this group of youngsters showed up at our house to see saylor. most of them are nate's deacons/scouts that he serves in our ward. a few weeks ago we had a little crisis with tubing with saylor during church, i was at home nate was at church and i had to call him home to help me. when nate left class the boys started thinking about what they could do to help saylor. one of the boys (william) remembered when we had spent FHE with his family how much saylor loved becca's american dolls. Tammy, williams mom, also knew saylor wanted one but i had expressed how expensive these dolls were and how it kind of was out of the question for our family. so williams idea was that the boys all together contribute money to buy saylor an american doll. they chose the "just like you" doll and created a mini saylor, tammy organized them and ordered it and then they all showed up to give it to her. i had to really concentrate hard to not cry, lots of breathing. this struck deep into my heart the warm comforting feelings of support i often times need. these young boys love her and us that much that they would make this seemingly small but realistically large personal sacrafice and service ... it means everything, its why we are here. thank you!

one of the boys who gifted the doll, Johnny. i think he is in love!


this is my aunt shauna ... my moms only sister .... she answered her call to return home to her Heavenly Father early this morning after a very brief diagnosis and struggle with brain cancer. She was 58, she was a yellow personality! she planned, hosted, carried out all family showers, weddings, meetings, parties, etc ... she did it all selflessly. My heart aches for my family all mourning this great temporary loss.

as for how little poops is doing today ... well last night was a tough one that ultimatly ended in nate and i plugging up her pee bag and flushing a little over 100cc of mucus and urine out of her that was not successfully draining or being cathed and causing unsurmountable pain ... for all of us. this morning i was dreading what the day would bring and fearful of how saylor and i would get along with this new cathing program. as it turns out ... start out with low expectations and then your pleasantly surprised. doing better and so the roller coaster continues.