"How do you guys do it?

"How do you guys do it?"

We have heard this question more than once in the past few months from a variety of people in a variety of settings.  Our responses depend on our mood on that particular day, or that particular moment of that particular day..

Sometime days it is simply "We don't."

Other days it's "I don't know."

Still others, it's "Because sleep is over-rated."

But on further reflection, I think we have a few answers.

First, we are doing this because we have a lot of great support, through our faith community, through the medical community and through our other support networks.  We couldn't do this without them.

Second, we are doing this because our priorities have changed.  For a few months, our priorities were mainly medical in nature.  We had to let a lot of things go.  (Sorry to the grandparents, aunts, uncles, cousins, and friends whose birthdays, anniversaries, etc. we have missed.  One day those events will again become a priority in our lives.)  When Anna came home, survival for all of us was the main priority.  Medical needs, food, relatively clean clothes, and those basic needs were still the priority, but we also added in a big family healing piece.

Now that we have those things mainly under control (most days), we are able to bring more pieces into the picture, especially for Anna.  Making up for missed educational opportunities, lost social opportunities, and rehab, rehab, rehab, are on our minds.  In addition, we are aware of the toll this whole journey has the potential of taking on each one of us emotionally.  So ... things like a clean house are way, way down on the priority list.  Lots of other things have been dropped from the to do lists as well.

Thirdly, we don't go anywhere, literally.  Anna's life (and mine) revolves around the hospital, church, and our home.  Kate, thankfully, has been able to go to Camp Kindergarten so she's not stuck here all the time ... yet.  Kate, Ethan, and I also manage a trip to the grocery store every once in awhile.  Other than that, people come to us.  Not only is it pretty tough logistically to do anything away from our home right now with Anna in her current state, the time it takes to load everything up in the van and then to actually drive somewhere else doesn't seem worth it.  So many other things can be accomplished with the resources we have in our home.  Plus, so far people are willing to come to us.  Therapist visits in the mornings and afternoon playdates, plus Leah around, make our days go by pretty quickly.

Another reason we seem to be making this work is that we have worked on a set of skills in the last several weeks that has helped ... multitasking and differentiating.  Not your normal run-of-the-mill multitasking and differentiating, but more like "how can we meet more than one social/emotional/physical/developmental goal for more than one child at any given time with one particular activity, sometimes with that activity even accomplishing something that mommy wanted to get done anyway?" kind of multitasking and differentiating.  For example, playdo at the dining room table.  One adult can sit at the table with all three kids and play with them.  They can interact with all three of them at age appropriate levels, help them gain strength and mobility (for the rehab patient), teach them appropriate language (for the toddler), and play creatively (for the kindergartener).  Viola.  Coloring on a large piece of paper at the dining room table is another great activity.  Last year snapping green beans was a great activity that worked well for both girls; I'm not sure how well it will this year.  Especially with Anna, though, we're always trying to think of how we can maximize whatever activity she is doing.

But back to the original question, what other choice to we have?  It's not like we're going to throw in the towel and give up.  This is not just our life, but our kids' lives ... Anna's life.  We want to do whatever we can to help them all through the challenges that come their way.

And in reality, life in general is not easy.  Our kids are just learning that lesson a whole lot earlier than Matt and I ever did.  I, personally, was struggling a few weeks back with the rough reality of life.  In the past few years, we've known several people our age who have experienced tragedy, trauma, hard times, call it what you will.  Life is hard.  It's not fair.  But, in the wise words of Mr.  Fred Rogers, "Isn't it great that we have control over how we react to the things around us?"  I'd rather choose to keep going and do the best that we can that give up.  Maybe we'll even have some fun along the way.

**And how could I forget the biggest reason that we can do this?  The gospel lesson this morning at church, along with our pastor's children's message and sermon were good reminders.  We do not carry this burden alone; we are yoked with Jesus on this journey and always.  He carries the lion's share of whatever struggles we face.  Thanks, Pastor, for the refresher.**

Right now Anna is doing well.  We finally made it to the hospital for her second round of chemotherapy on Wednesday morning and made it home Thursday evening for dinner.  Wednesday was a good mommy-daughter day at the hospital with minimal visitors in Anna's room.  We did some math work, played some games, did some reading, played in the playroom, and I did some work trying to figure out the bills while Anna took a nap.  I managed a visit back to the PICU while Anna was sleeping and visited with Lynne, the critical care nurse practictioner who watched over Anna back in February, and March, and then again in April.  She was glad to hear how well Anna is doing, specifically that Anna is "Anna".

Thursday brought more visitors to Anna's room ... doctors, therapists, residents, etc.  Poor Anna doesn't sleep much for overnight hospital stays anymore, but at least they are short stays now, and I know how to keep people away when she is napping.  She managed a bit more math and reading in the morning, got in another nap, and then checked in with her physical and occupational therapists in the afternoon, before having a game date with the child life specialist on P4.  We have enough of a relationship with the P4 staff that they make sure we get out of there before dinner, so we did.

Anna seems to be doing okay so far with this round of chemo, but she won't have her blood drawn until Monday so we won't know how her blood counts will react until the numbers come back, and then her numbers will continue to drop through this coming week and probably into the following week.  We're anticipating some kind of transfusions ahead, but we'll just have to wait and see exactly what the coming weeks hold.

Time for prayers

Thanksgiving
Please give thanks that everything finally fell into place for Anna to safely receive her chemotherapy.
Please thank God for the continued wonderful care that Anna receives at American Family Children's Hospital.
Please give thanks for a quiet weekend at home for our family.
Please thank God for the continued prayers and support we are receiving.
Please give thanks for the strength, peace, patience, wisdom, and rest that we have all had.

Requests
Please pray that Anna's treatments are 100% effective.
Please continue to pray for all of Anna's care staff, both within the hospital and without.
Please continue to pray for our whole family.

Thank you, as always, for everything.