“What can these anxious cares avail thee,
These never-ending groans and sighs?
What can it help, if thou bewail thee
O’er each dark moment as it flies?
Our cross and trials do but press
The heavier for our bitterness.”
So after Monday’s triumphant success…
…after pulling Katie’s tube at the supper table on Monday evening, and after all the (silent) whoopings and hollerings had died away…
A day that will surely live in infamy in my memory.
There is a cost to love. And it doesn’t come cheap.
Katie took three hours to drink her eight ounces at breakfast time on Tuesday. This is the eight ounces we formerly would have put through her tube. You understand that the tube feedings did not take three hours! And there were seven of us who could manage that task easily.
At the end of the three hours, she still needed to be fed her solid food.
By the end of this feeding marathon, both she and I were a sight to be seen. Or preferably left unseen.
She needed to be cleaned up, taken to the toilet, dressed for the day.
See me have fun, get clean, and build my upper arm and body strength all at once!
All cleaned up so that we could start the process over again, this time with lunch.
Her lunch drink took two hours.
Are you picturing the scene?
The mom of a big, noisy, busy bunch sitting at the kitchen table for many hours. Picture her with sticky hands, focusing intently on the even stickier girl on her lap.
Normally, sitting in the hub of our home like this, I would be fully able to direct operations.
But this was my third day without any voice at all. Nothing more than a whisper would come out of my mouth. The little ones were greatly amused at the result if I forgot I had no voice and tried to use it anyway. “Croak, croak,” says Mama.
We had started out the week behind on cleaning and laundry, since we had just spent two days enjoying the company of friends, and not doing laundry or cleaning the house. Since our laundry machines are slow, it took three days to do twenty-two small loads of laundry.
We’d strategically planned the Get-Katie-Off-The-Feeding-Tube campaign for a relatively clear week, but somehow ended up with a full schedule anyway, every day but Thursday.
And here I sat, immobilized and voiceless, with slimy hands to boot.
I’m learning that I can bring my hands to my mouth and get something yummy in my tummy. That doesn’t happen if I put my hands into my hair like I’ve been doing for years.
When I got too excited and flapped my arms and couldn’t calm myself, my mama helped me settle down…
…so I could finish my meal. I have a lot of trouble with hand-eye coordination, and my mama is thrilled when I look down at my food instead of off into space like I am doing here~
All that endless day, the hymn at the beginning of this post kept running through my mind.
“Our cross and trials do but press the heavier for our bitterness…”
And I couldn’t sing it out loud.
When Joe came home that evening, I tried to wipe the strained look from my face. But he asked about the day. “We cannot live like this,” I whispered, “This is an unsupportable plan!”
Supper was late that night.
After spending too much time trying unsuccessfully to fool Katie into thinking her eight ounces of Pediasure with purple smoothie was a tasty and desirable treat…
…and rather than capitulating and putting the tube back down, which I’m sorry to admit I was strongly tempted to do…
I thickened her drink to pudding consistency and added chocolate.
And fed it to her with a spoon.
That’s proof of desperation right there, but it worked.
She still took nearly an hour to eat it.
It was past nine pm by the time Katie was washed and in her clean jammies and snuggled into bed for the night. Past nine pm by the time Joe and I sat down to eat our supper together. It was date night, you see.
The next morning, as I conversed with the Lord while getting ready for the marathon ahead, He impressed on my mind that this was a test.
“Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.”
Would I stand the test? Would I groan bitterly under the pressure God had laid on me? Or bear it with patience? What would He see when He looked at my heart? What would my children see when they looked at my face? Would they see that God’s grace in the present was enough?
Is it enough?
Yes. Yes, it is.
O Lord, give me what I need to bear this day cheerfully!
That morning, Katie drank her eight ounces in half an hour. And has done so every mealtime since.
By Wednesday night, the house was clean and tidy and we were caught up with the laundry. We were finally ready to begin our week.
“Only be still, and wait His leisure
In cheerful hope, with heart content
To take whate’er thy Father’s pleasure
And all-deserving love hath sent;
Nor doubt our inmost wants are known
To Him who chose us for His own.”
[Note: All the photos above were taken prior to the Day of Infamy!
I have Katie sit up on my lap with proper posture in a supported position. Katie thrusts her tongue forward as the cup approaches her mouth. I use her maroon spoon to exert downward pressure on her tongue, which causes her to use her muscles to retract it, then I quickly replace the spoon with the lower rim of her cup. This encourages her to tilt her head downward toward the cup and use the proper muscles while drinking. All this muscle work should help her to grow stronger and more skilled as time goes by.
Also, I make up the girls’ six daily bottles the night before, adding the appropriate supplements to the appropriate bottles. The bottles are marked on the bottoms with either “V” or “K,” and the lids with “B,” “L,” or “S,” for breakfast, lunch and supper. Monday night, I added a purple smoothie to Katie’s Pediasure, hoping she’d approve of the flavor variation. Unfortunately, she didn’t. Tuesday night, at Joe’s urging, I went back to what had worked the day before–hazelnut creme decaf coffee. A T21 mama told me decaf coffee had solved her daughter’s constipation issues. Katie guzzles that hazelnut creme coffee-flavored Pediasure right down and no longer needs the Colace. Thank you, G!
P. S. Thank you to every understanding soul who prayed for me. My voice is mostly back!]