Shelter from the storm...

I've been reading a book called Shelter from the Storm that was given to me on our last admit by The Bridges team here at the hospital. It is a book for parents with children facing life threatening illnesses written by two palliative care nurses whove walked the walk with their own children...one who lived and one who passed away. Not CF specific...but about cancer, CF, and neurologic disorders...even talks about those paralyzed by car crashes etc. It is a good book that I highly recommend. I'm almost thru with it now and I feel I'll probably wind up reading it over and over again it is full with so much good information and recources. and the best part is, it's not just for kiddos who are almost ready to die, it is advice from the moment of diagnosis and then walking you thru all the hard parts and decision making processes. An invaluable asset to me, to us all I believe.

I've been elbow deep in going thru all of the faces of CF photos you've been emailing me. and i was just moved to tears today. this is going to be powerful. i get so wrapped up in conners care and his disease process that sometimes its easy to forget just how many other ones are fighting this too. and seeing all of these beautiful, smiling faces is simply overwhelming. it just can't be ignored. I've only just begun with them, I have many more to go thru and it isnt too late to email me a pic of your cf warrior to connersfightagainstcf@hotmail.com and put the name and age. i've even gotten pictures of those warriors who are now breathing easy in the sky...and that is just as important and powerful...so send those as well! and again, i'm humbeled you are allowing me a glimpse into your kiddos (or your) life...such beauty in it.

We are going home from the hospital tomorrow (friday!) on iv's. we've got them all switched up so it's time to jaunt out of here to be with my house of boys! and saturday is our GS walk for CF (wear red for conner!) and then of course mothers day...it'll be so nice to be home. i can't wait. each time i'm away from my boys i come home and i swear they've grown a foot...i hate that i miss out on so much of their lives right now. mommy guilt is so easy to creep up on me if i'm not careful to keep it in check.

Going thru this all is just so surreal. it is an everyday mourning. each day i have to wake up and remember it all and allow it to become real again. i don't spend much time dwelling in it but there are times that i'm fine...enjoying life and the day and then out of the blue i'll look at him and really remember it all. which is both painful and a great reminder of how precious time is. in that respect i do feel i'm lucky. i get to live in the day and not in the future. and many others dont....simply because they have never needed to. but it's just a different feeling. sometimes my mind blocks out the pain, i'm kinda numb to it, and i think we're just here for ivs like normal and then we'll go home and it'll all be fine....but then i have to remember our new reality is thats just not true anymore. it's all changed so quickly. and sometimes i get so jealous and so irritated that i don't get more time. that i feel like i wished so much that i did more in the 7 years he's had so far. that we've done more, loved more, lived more, laughed more, played more, prayed more, enjoyed more, smiled more, cried more, screamed more, painted more, hugged more, and kissed more. it's a very strange feeling, feeling now that i'm trying to cram 60 years of living into this very shortened existance. it's not fair. i wish that i knew years ago how to truly appreciate the healthiest years he had. i always considered them better, luckier times...but now looking back i really wished i had known then how to live. and how to be fully present in the moment. because now i feel rushed in each second to make the most of it. each and every single breath a gift, not just for those with cf but for all of us. and i simply am glad that maybe you will hear this and get to make that choice to learn how to truly live and not just go thru the motions. get out of bed, go to work, eat lunch, come home, eat dinner, kiss your kids then go to bed to start it all over again. but really live in it. those summers when conner was feeling good, heck even last summer when he didn't have to be tethered to ivs, sat monitors and o2 tanks i wished that i really lived in each day. because truth is i didn't. we don't. it's not how we're made to live. it's a learned behavior. so i guess in my small way thats my gift to you. there is no better gift then time and memories. so do what i wish each second that i could've, should've done...just live. really live. cus things change in the blink of an eye...and i'd hate for you too, to have these lessons learned a little too late...leaving you feeling like you need to play catch up...because thats no way to live. i am however so thankful that now i have learned that lesson and we're living in it each day...but don't wait til you or your child is too sick to really learn this lesson...start it today. i'm jealous that you will get to do that. to have the opportunity to do what i could only now wish i would have. so be thankful. and be joyful. and love. and really...just live