Reality

Sometime back at the end of April one of Anna's doctors made the comment on a day during which had obviously been a difficult day for me, "This is hard."  I don't know how, but I somehow managed to get the nerve to look him in the eye and respond with, "That's the understatement of the year."

Another doctor told me once in March, "Go home and enjoy your other kids."  Yeah, right.

One more of those classic phrases that Matt and I joke about on hard days is, "This is as hard as it gets."  We were told that more than once during Anna's hospital stay.

I have struggled with this blog in terms of how much to share of our moment-to-moment, day-to-day struggles.  We do not want pity from those around us, but we want others to have more of an awareness of how our rough moments during a day can be extra stressful.  However, we also want to be clear that for the most part, we have adjusted to our new normal and Anna's medical status is stable for the time being.

Sunday morning was a good example.  Kate woke up at 5:15 to go to the bathroom, and didn't go back to sleep.  Anna woke up a little before 6 to have her diaper changed.  When Anna has her overnight hydration, that morning diaper change also includes changing most of her bedding and clothes; 1 liter of fluids overnight makes a lot of urine.  Kate got up and got dressed of her own accord.  Anna was carried to our bed to have her clothes put on and her morning formula started with the feeding pump.  Ethan got up around 6:30, and we brought him out to breakfast.  If breakfast is not waiting for him when he gets out of his crib, he whines and cries until he gets to eat.

Because of the extra early rising of Kate, we were feeling somewhat confident that we would make it to church on time.  Anna had all of her morning medicine and most of her formula, but as she finished her feed, she started complaining of an upset stomach.  Ethan and Kate had shoes on and their teeth were brushed when, at about 7:30, Anna threw up.  We know the warning signs now and can catch it all in a bucket, which makes the overall clean up much easier.  Anna usually handles the rest of her formula just fine; something about that morning feed is tricky, we have been told this is not uncommon.

So we ended up being late to church.  As we were unloading the kids, Anna told us that her lip had started bleeding on the way there and there were blood spots all over her handkerchief.  Matt took the kids in to the sanctuary while I took Anna into the bathroom to clean her up and get her some paper towels to use instead of her handkerchief.  Once Anna and I got in to church, it wasn't long before Kate needed to go to the bathroom.  The fever she had on Friday afternoon and Saturday morning must have been caused by some tummy troubles brewing; she went to the bathroom a lot today.

After Kate and I got back in, Ethan took his turn at being the challenging child.  "No, Mamma, no!" came out of his mouth quite often.  Matt took him from me about the same time that Anna needed to have her diaper changed; changing the diaper of a 50+ lb. child who can't sit or stand independently requires some creative thinking when we're not at home.

At that point, we decided that it just wasn't working today and left the service even earlier than we usually do.

But that was just the morning.  Over the course of the day, everyone perked up and we ended up having some pretty happy moments.  (Even though I was pulled over on my way home from picking up dinner at Culver's; all of the kids were with me.  Turns out our van registration expired back in February.  Oops.  The officer was understanding and only gave me a written warning.  We got the registration taken care of within the hour.)

Last week Matt took off the whole week.  He managed to get a handful of household things done in the midst of Anna's chemo stay, the prep for school, the tomatoes, and the general busyness of Anna's nursing and therapy visits.

Anna's chemo stay was relatively uneventful.  We ended up not getting to the hospital until after lunch on Tuesday because they didn't have any rooms available until then.  We played a lot of games, finished up her math book from 1st grade, did some reading, and visited with the Pet Pals who come every Tuesday evening.  On Wednesday afternoon we had a few surprise visits from Dr. Iskandar, as well as from Anna's primary oncologist, and Lynne, the PICU nurse practitioner.  All were impressed and pleased with Anna's mood and progress, even though she is getting more and more wiped out with the cyclophosphamide each time she gets it.  I also spoke with a handful of people at the hospital who are helping with some of the details of Anna's transition to school.

Speaking of school, our family was able to meet quite a few of the teachers and therapists who will be working with Anna this year at school, as well as go to the back-to-school ice cream socials for the Kindergarteners, and then the 1st and 2nd graders.  We cannot express enough how impressed we are with the preparation everyone is making for the start of Anna's school year.  I'm sure we will all be surprised by things we haven't though of, but it looks and sounds like as much is in place as can be.

We (mostly me) are stressed and anxious about the start of the school year.  If we were a "normal" family, this would be a big year simply because Kate is starting kindergarten.  Unfortunately, I think having Anna start 2nd grade may be even harder for me than having Kate begin her first full days of school.  I know Anna will be in good hands, but I'm more worried about how our mornings are going to work, and how all of the different pick-ups are going to go, and how we are going to fit something else in to our life when some days this summer it was a blessing to just make it through.

Change is hard.

Uncertainty is hard.

There's a lot of both this coming week, which also happens to be low-blood-count week for Anna.

Please thank God that we have all made it this far.
Please ask God to be with us all tomorrow, and in the days and weeks to come.