Hope and Goals

 

No-Port Party

The Friday prior, Thomas's port was surgically removed from his chest! On Sunday we had a No-Port Party for Thomas which I think he felt was so fun and, at five years old, did not notice how low-key it was for me to assemble!

Decorations Thomas chose from the Family Dollar store

Making a sugar-free cake from a mix

Thomas's sloth lollipop!

We had a piñata at the party and we all wanted Thomas to be the one who ultimately busted it open, so the older kids did all kinds of antics to "miss" whacking it. It became quite humorous!

Dramatically tripping and flying through the air, such that he couldn't hit the piñata

Thomas decorated the simple cake himself with strawberries. We had homemade whipped cream for those who wanted to add a dollop!

Next step . . . when the surgeon clears Thomas's healing incision next week, we will open our pool and Thomas will get to swim!

Father-Son Retreat

Over the weekend, Chris took Joseph (8) to a younger boys' father-son retreat (with an older boys' retreat in John's future a few weeks out). Joseph had the best time and both father and son laughed out loud at me when I did things like pack my little boy a toothbrush and changes of clothing--as if he would need those!

Miscellaneous Moments

Milestone: This turned out to be the week when Thomas had no medical appointments of his own! Not one! (Next week he does have one. :) Now I'm catching up on my own health neglect for the past year, so I've scheduled numerous medical appointments for myself over the summer, the first two of which were this week.

David and "Francis"

Brothers playing with kinetic sand

Mama and the gang at John's hockey practice

We enjoyed one special morning: Two of us had annual physicals with our family practice Physician's Assistant who diagnosed Thomas's cancer nearly one year ago, so I took Thomas in to see him as a surprise. Our P.A. and his staff were thrilled and there were joyful watery eyes. Now Thomas's complexity requires he be seen by a Pediatrician at a large practice, so he won't be seeing our P.A. as a patient.

One of our medical champions!

After having to fast for blood labs, we enjoyed going out to breakfast together.

Breakfast restaurant

John finished up eighth grade attending the homeschool hybrid Regina Caeli Academy, which he enjoys tremendously and where he achieved wonderful grades. Now he is a rising high-school man!

Decent Pizza

Only my longest-time blog readers might remember my frustration over trying to make homemade pizza and how my attempts have always been flops. Fifteen years of flops! Therefore, I really couldn't fail to mention that I made decent pizza for the first time!

Experimentation shows that Thomas does seem to experience dumping syndrome when eating restaurant or frozen pizza, and he dislikes the almond crust pizzas I had been making him, so this week I made homemade whole wheat crust. Our local store used to sell balls of dough in both white and whole wheat, but have discontinued the whole wheat, just when I need to start buying it!

It was an all day project to keep doing the next steps in the dough process, but it made me grateful for being a homemaker: I may be very busy all day, but I'm at home and do have the ability to go back every hour or two for the next step in the dough.

It also made me grateful for a 12-year-old daughter who is very helpful!

Thomas was so excited that he sat in front of the oven to watch the pizzas bake.

Three cheese pizzas for Friday and one pepperoni for Saturday's lunch!

On a related note, 100% whole wheat waffles are also lacking in the market, so I'm grateful for Aunt Jemima's 100% Whole Wheat Waffle and Pancake Mix and for my waffle maker so my boy can partake more safely.

Hope

I have felt dawning realization that I have been in a position of reacting for an entire year instead of being proactive. While I made many contingency plans, I was continually pivoting and changing in reaction to Thomas's cancer journey. I could not guide the family ship in my role as homemaker and homeschooling parent.

During this last week and after a lot of thought, I felt myself setting goals again--something that requires hope for the future. For much of the last year, Chris and I felt our goals shrinking to three-week chemo cycles, then to getting through five days straight of chemo infusion, then dramatically reducing down to Thomas surviving one hour at a time, hour after hour, for months on end. Goals began slowly expanding to Thomas surviving the whole night or the whole day, to his improving in strength tiny bit by tiny bit, losing IVs and surgical drains one by one, learning how to move his limbs ever so slightly, learning how to sit, how to take bites of food. Our vision increased to whole single weeks at a time . . . and now we look at the summer ahead.

My charts and lists are coming together nicely as I plan Goals as Long as God Lets Us Have Them. I write down these goals with a much sharper understanding now that goals are nice as long as I am content with each day being my/our last, knowing that we know not the day nor the hour.

Over the summer, I have hopes for our family to:

• Enjoy John and Mary performing in Les Mis this June and John playing rec league ice hockey all summer.
• Reinstitute morning Holy Reading and Prayer Time before breakfast for all of us.
• Reinstitute Morning Basket Time (about a half hour with breakfast), mainly as a way to reconnect with the children as a group versus educating them, and continuing math throughout the summer (because they need it).
• Declutter every room in the house in a systematic way (normally I putter at this year round, so you can imagine the state of affairs after a year of not decluttering).
• Work on improving the wild back portion of our back yard during the cool mornings.
• Swim in our home pool most afternoons, including focusing on the three littlest boys learning how to swim.
• Reinstitute reading aloud classic literature to the children in the evenings. (I just finished Hans Christian Anderson's The Little Mermaid, my kids never having seen once the Disney movie, and am next reading Peter Pan.)
• Create a few special evenings per week (e.g., one hour) that are dedicated to Mama and one child doing a regular activity together.
• Travel! We are putting together what we hope will be four little trips over the summer! Feeling brave enough to take Thomas out of the safety of our home nest is such a big deal!

I pray for all of those who are in a new place to feel hope.