The Waiting Game Begins Again ....

Way too late for me to be posting.However,I am on this weird adrenaline rush and have decided to organize cupboards and do laundry, at a time when I should be taking full advantage of being home and being able to sleep in my own bed,uninterrupted by roommates,nurses,beeping machines and very loud hepa-filters.Instead, a post to end the day.Today went way too fast but I so enjoyed the time spent with the kids and the luxury of soaking in the comforts of home.I have missed the ability to just walk outside whenever I wish to take in the cool,brisk winter air or just feel the warmth of the sun upon my face.I managed to get a few Christmas errands done but mostly I just hung out with the kids.Taylor did work most of the day and Jess was up very early to run 10 miles with her Team in Training group.The boys and I leisurely got going and the morning evaporated before I knew it.We headed to Venture to meet Tate in the late afternoon and can I just tell you, what a doll he is?So cute and so much a McKay.Thank you to the McKay family for the gift of your friendship and the honor of being part of your amazing journey.After leaving the McKay's, we began our trek to LA to see Zoey.And what a trek it was!2hours to get there.2 hours!!! We put Christmas music on and tried to make the most of it but for a drive that should take maybe an hour,I was pushing my luck with the boys.Mostly Joe.Jake never really complained but Joe ..... If he said "OH MY GOSH" once, he said it 20 times but the line that cracked Jess and I up was "OH MERCY".We were dying laughing.Finally .... Children's Hospital and we were soon to find out that the drive was more than worth it for the boys.First,Zoey was so excited to see us.She was sitting up playing and smiling and reaching for us.So darling.We visited for a bit and we soon found out that it was Disney night there.When I say Disney night I am not talking characters I am talking actors and actresses.All young kids and young adults from all the popular Disney Channel shows."Suite Life","Cory in the House","High School Musical","Wizards of Waverly Place" ... on and on.Joe and Jake loved it and the evening was soon dubbed," pretty cool".Well worth the drive in the end wouldn't you say?.We stayed for awhile and headed out and much to our relief .... no traffic.We were home in about hour.More like it.We jammied up,read books and the boys passed out.Taylor and Brandon went to the store,bought cider and a gingerbread house and we finished the night enjoying each others company.And Zoey ... she looked great and seemed to be feeling really good.She was full of kisses and hugs.Her numbers today were a bit surprising.Her ANC has already dropped to 400 and whites are 1.1.Numbers have dropped way faster then last time.They say it is because there are no blasts, so hopefully we will see things bottoming out quicker than last time and coming up faster as well.Her g-tube site is beginning to get red and the minute infection is suspected they will bring out the big guns,Vancomycin and try and keep ahead of it going bad, like last time.I left the hospital tonight finding it unbelievable that our life has taken a turn where we have become a family of the 4th floor.A title I once feared more than fear itself but tonight I feel so honored to be one of those families.As much as I would trade this leg of the journey for Zoey, I am,in the next breath,so privileged to be walking this road in the presence of the most amazing children and their families.The faces I saw this evening,were smiles that reminded me once again of the resiliency of even and most especially, fragile lives.Their strength and their smiles give all of us reason to keep moving forward and to keep always,regardless of the seemingly insurmountable obstacles,to keep the faith.These children are my hero's and tonight as I momentarily struggled with how it is we happened to be walking the halls of 4 East,I looked at these kids,I looked at Zoey and saw all that is good and pure,raw and honest and even amongst the suffering I saw hope.Hope, although elusive in some moments, is still present ,when digging deeper and praying harder.Hope still manages to sustain us when we are most weary and broken.Thank you 4 East for your daily reminders and your constant nudging to see the good amidst the bad and the phenomenal gift of perspective.