We have officially been in every room on the right side of the Tripler pediatric Ward. This time it's the Jungle room -conveniently located next to the ice machine and right across the hall from the playroom. It is complete with an elephant, frogs, lizards, and yes a monkey. Apparently another frog jumped off the wall and into Lily's belly- so now there are 2. I see many years of therapy in all of our futures. I also noticed a big Stargazer Lily on the wall. One of my favorites and the one I chose to carry on my wedding day. There are so many varieties of lilies and their meanings range from purity to abundance to wealth to a new beginning. There are also new signs on the ward. All watermarked with lily pads and their purple flowers. Coincidence?
Today we started cycle 8 of chemotherapy. This will be the final inpatient round of chemotherapy. We are cautiously optimistic. Some days dragged on forever, yet I can hardly believe that 6 months ago we were a regular family with average problems. Now I guess we are the regular family with the above average problems. From June on, we try to get back our life. Life that has alternately rushed on past us and held deathly still. You go through the motions, waiting, hoping for an end in sight. And now we can see it. We're not quite there, but we can see it. We will try to potty train, again. We will try to instill in our children the values and ethics that will serve them well in life. A life that we will always secretly pray they get to live to the fullest. We will try not to take anything for granted, but we will. And I will celebrate being able to take things for granted, again. Showering daily, sleeping nightly, and exercising on more than one occasion a month. I will worry immensely when any of my children is sick, forever. As any mother does. But part of me deep down will be relieved as common illnesses pass , proving nothing else is wrong. I will put away the binders logging the shots, and the transfusions, the blood counts and procedures. I will only pull it out for major appointments, instead of filing papers away weekly. I will start using the word survivor and leave the word patient to be used as an adjective, not a noun. I want this to be the battle that won the war, but realize there may be battles yet to be fought. So for now, we will celebrate. We will celebrate finishing this battle. We will celebrate an amazing 4 year old who has endured so much. And then we will go back to the jungle that we call life and cherish the day to day stuff that won't seem so mundane after all.
I love the Lily variety in the bed the best! I do like stargazers too.
ReplyDeleteOur prayers will always be with you, all of you survivors. Love - Mom Deb
Yeah, here's to the last cycle! We are all celebrating with you and pray that life gets back to "normal" real soon. You are truly an amazing person Jen. We are all so lucky to know you!
ReplyDeleteErinn
Jen,
ReplyDeleteI do not think there is anything else you can say or feel. You are so in tune with second of your lives. Your words are perfect.
Every day you and your family are survivors.
It IS a new beginning,,
My deepest hugs to you all,
Tracy
Can I just say that Lily is one amazing kid in a family of amazing people. I really wish we were there to celebrate with you all. I miss those b-day parties. And if we had been together, I never would have let you out do me with cakes! Ha! I do not do too well with fondant. I will post some pictures soon...
ReplyDeleteLove you ALL!!!!!!!!!!