Home sweet home?

We've now completed our third day at home.  It's bittersweet being home.  While at the hospital, we had wonderful nurses who took care of everything for us.  We just had to be there to hold Caleb and love him.  Our wonderful family took care of Baker and Eli, bringing them up daily for visits.  We had all of our meals taken care of... All of our energy was spent focused on Caleb.  Now that we're home, we have to figure out how to feed everyone, get the kids dressed, get Caleb his medicine (without forgetting any), deal with Caleb's ravenous appetite, deal with crazy emotional swings from Caleb and us, and the thousand other things that just make up life.

I don't know what we would do without the wonderful support we've had from everyone.  People have signed up to provide us with meals almost through the end of the year, people have also signed up to help with lawn work, our family has helped by watching Baker and doing special activities with her to give her the attention she needs and deserves, friends and family have helped with shopping, people have been so generous with gas cards, gifts of money... And the list goes on.  

We're still in a fog, coming home from the hospital.  It reminds me so much of having a baby, and yet it's so very different.  We came home and we knew our life had changed forever.  With our babies, we weren't sure what to expect, but we knew there was no going back.  The difference with having a baby was we were on an emotional high.  Our adrenaline carried us through the sleepless nights, and we knew that after a short period of time, we would be back to a normal night's sleep, and we'd settle into a routine.  We'd all adjust to the new little bundle of joy in our lives, and looked forward to watching them grow, and all the new "firsts!"

With Caleb's diagnosis, there's no "adrenaline high."  We still have moments where we wake up hoping it's just a bad dream we were having.  We still question how, out of just 4,500 diagnosis' a year, this is happening to us?  We know ideally what the first 30 days will look like.  We know when our appointments are for his outpatient chemo treatments.  (We're already 2 weeks into it, yay!) What we don't know is if Caleb will catch a cold which could trigger a midnight trip to Roseville!  And that could happen at any point during the three years of treatment.  We don't know the best way to keep a sterile house (and how sterile is sterile enough).  Amy's talked to several parents that have gone through this, or something similar, and has gotten many differing pieces of advice, all of which seem nearly impossible with a 5-month who drools on everything, and is about to start crawling, increasing his reach exponentially.  We also don't know what treatment will look like after the first 30 days.  They run additional tests at day 29 which determines the rest of his treatment.  (you can pray the tests results result in the least invasive treatment.). We also have no idea what sort of financial toll this will place on our family... And for that matter, when I'll even be able to go back to work.

We have no idea what tomorrow will bring, but we're starting to realize we're going to need a lot of help. We dont know what kind of help, but we know it's going to be a long haul for the next three years.  We are blessed beyond measure with our friends, family, and church family!  We're not used to asking for help, so that will be a big learning curve for us.  God will be "stretching" us and molding us into new people. It's scary, because He is pulling us into change, and no one likes change.  I'm certainly not looking forward to this.  Our lives were quite comfortable before, and I was happy with who I was... But I guess I'm starting to see that God wasn't.  Intellectually, I know the more I fight this, the harder it will be.  So I guess the question now is, how stubborn will I be?  I can just see God looking at me saying, "we can do this the easy way, or the hard way, which will it be?"  

In the meantime, it's nice to be home, sleeping in our own bed (not that the hospital pull-out wasn't nice).  We're struggling our way into a "new normal." That's what the nurses kept telling us, and they're right.  We need to develop a new normal.  And we're getting by one day at a time.  Every day is a blessing by the Lord, our wonderful Creator.

He is an awesome God!