Fear not, I am with thee, O be not dismayed,
For I am thy God and will still give thee aid;
I’ll strengthen thee, help thee, and cause thee to stand
Upheld by My righteous, omnipotent hand.
When through the deep waters I call thee to go,
The rivers of woe shall not thee overflow;
For I will be with thee, thy troubles to bless,
And sanctify to thee thy deepest distress.
There’s a fun post in the works for you, full of my favorite wedding photos set to the text of the wedding covenant Joseph and Lindsay wrote together and vowed together.
Katie had her twelfth birthday party this week! More photos and some videos to share.
Yet another fun post is in the works, made up of my older kids’ late-night responses to this friendly challenge from a long-time blog reader: “I would also love to hear some of your kids’ thoughts of their daily routine. You’ve done that a couple of times before and every time I see a pic like that from Dan shaking the bottle or Laura holding Verity I wonder how things are for them.”
All three of these posts essentially written by others. <smile>
But we have been in such unremitting distress as a family that I again feel compelled to ask the people of God to pray for us. Several friends have recently asked how Tommy is doing with his new school schedule, and I realized that it’s been a while since I [gave up a night of sleep and] wrote an update.
We are still waiting in limbo.
Tommy still has not started school due to explosive diarrhea.
I’ve thought it might be good to map out a timeline here for future reference. Probably that’s all I need to do for our prayer request to become clear.
So here it is, with key events in bold.
Overview of Pertinent Events Since Bringing Tommy Home on June 15, 2013:
-Initial assessment by Dr. Kevin A. Strauss, medical director of the Clinic for Special Children, Strasburg, PA
-We begin increased nutrition in Tommy’s diet, with supplementation targeting his needs.
-Tommy’s bowels gradually grow looser beginning a few days after bringing him home on June 15th, but become a serious problem by three weeks home, the weekend of July 6th; nothing contains his explosions.
-Tommy has major, life-altering diarrhea, BUT…
-He only takes an hour to eat each meal.
-Daniel is only working one day a week, so I have his back-up help.
-We are on a summer break from homeschooling.
-Although we do very little outside the home other than medical appointments, we have hit a stride and life is manageable.
-We initiate the process of having Tommy assessed for therapy and other needed services.
AUGUST, the Golden Month
-We drastically alter Tommy’s diet; his bowel issue begins to improve immediately and is completely cleared up within a few days.
–We follow a fabulous schedule and enjoy an idyllic month of homeschooling.
-Daniel is still only working one day a week, so I still have back-up help.
-Tommy takes about an hour to eat each meal, but I can feed him while homeschooling the other children.
-Bowel issue restarts full blast although no changes have been made to Tommy’s diet.
-We alter his diet again with no resulting improvement.
–He begins taking longer to eat.
-Between cleaning up random diarrhea, feeding Tommy, and making his food, very little time is left in the day to regroup, let alone make progress in other areas of life.
-In desperation, we begin feeding him on the toilet as an ounce of prevention.
-We hit yet another learning curve when we change Tommy’s diet again with no resulting improvement.
–He begins actively resisting eating, taking two hours to eat each meal.
-Tommy vomits for the first time since coming home.
-His overall condition begins to go downhill quickly.
-Tommy quits eating altogether; he is admitted to the hospital.
Mid-September to mid-October
-Tommy, Ben and I spend just as many days in the hospital as we do at home.
-Full GI workup reveals the reason that his overall health tanked and this is addressed. However, in the end, we are left with no clue as to the cause of the diarrhea; the two issues are apparently unconnected.
-Tommy receives his G-tube near the end of this time period and begins to make real gains in weight and energy.
-Daniel works every day that I am home during this month, so with homeschooling, I have no breathing space to recover the household from my absence between hospital stays.
Mid-October to early January
-Daniel is now working full time.
-Tommy’s diarrhea is kept under control by medication, but now he is vomiting randomly two or three times each day, adding chaos to a life already without margin.
-I’m feeding him by mouth and doing tube feedings, dealing with various random problems that attend both processes, increasing the chaos factor.
-We constantly tweak his formula and feeding schedule, as per his gastroenterologist’s suggestions.
-We fit therapy/educational assessments and more doctor visits into the schedule.
-I spend a lot of time attempting to track down formula and other necessary medical supplies.
-Mastering the learning curve seems like a distant dream, because about the time we reach a new normal, at least one variable changes and the learning curve starts all over again.
-Every day begins to feel like we’re barely winning the battle just to get the basics done; we see large areas of life start to disintegrate due to the inadequate attention we have to give them.
-Even small areas of life are impacted; with cold weather keeping the windows closed, four children in diapers and one with death breath, our little house stinks; we begin to do our part to support our friend Becky’s soy candle business with ongoing financial gifts, haha!
-Tommy seems stressed and unhappy too much of the time.
-God gifts Joe and me with the opportunity to go away and rest for a couple of days.
-Our family’s stress level is reaching critical mass with no relief in sight, we see many areas of critical need among the children that are being left unmet with no remedy in sight; we feel like we are swirling the drain.
-We attempt to add in-home therapy; after one session, we realize that with the time-consuming nature of Tommy’s current basic needs, it will be impossible to add in-home therapy and also homeschool on any given day.
-I am exhausted, weepy, not keeping up, grieving our losses, battling anxiety over the many unmet needs within our family, feeling trapped in impossible, crying out to God for help and provision and for the first time in my life, hearing silence in return; I know He CAN and don’t know why He ISN’T; my emotional state is exceedingly low; I know I am flunking the tests that He has sent me; in this state, all my sins rise up to mock me and I question whether I am really His child…
“My God, my God, why have You forsaken me?
Why are You so far from helping me,
And from the words of my groaning?”
-I see Joe rise to the occasion in unparalleled ways as his formerly capable wife is no longer able to handle the lion’s share of household and parenting responsibility without his help; God begins to work on our marriage and knit our hearts together as never before.
-We face the necessity of making some drastic changes to ensure that everyone’s needs are being met for the future long haul; we come to terms with the fact that we cannot meet Tommy’s massive needs without massive amounts of outside help but we can see that his needs are met…
… if we had brought home a child who needed ongoing hospitalization for something we could not provide for him at home, like cancer treatments or kidney dialysis, we would not be beating ourselves up as failures, we would simply be grateful that we could get him the help he needed…
-After an indescribably final-straw Sunday, we decide that I’m in an indefinite season of staying home in order to rest up for the challenges of each upcoming week; Sunday becomes a day of rest for me again.
-We begin to pursue every avenue of help and support we can access; this [still ongoing] pursuit takes up a lot of time, but now it feels hopeful; it seems that we are moving toward a glimmer of light at the end of the tunnel.
-After many months of Verity looking at me sadly from across the room, I have hope that the changes we make will enable me to help her as well as address unmet needs among the other children.
-The decision is made to move Tommy to school-based services, a decision that Joe had come to long before my German, hard-headed stubbornness would agree to consider it.
-At the same time we decide to increase Katie’s school schedule to a full week; the transitions for both children require time-consuming meetings, phone calls, emails, and paperwork. It is obvious at every new step and detail that this is the right decision, affirmed from every direction; we are unhesitatingly confident the change will be best for both children and the rest of our family.
-Somewhere during this time, God begins to show me His face again in small but tangible ways despite the fact that we have left many ideals in the dust and are making decisions we never thought we’d have to make.
-Tommy is happier and almost imperceptibly begins to relax.
-God gifts our whole family with the opportunity to go away and rest for ten days.
-Tommy’s bowels begin to grow looser.
-Upon returning from vacation, instead of having Tommy start school, we begin seeking a solution to the now full-blown diarrhea that is keeping him out of school.
-Katie begins a full school schedule with no negative effects on bonding, so we are confident her needs are being met.
-I blog that Verity doesn’t get ugly-stubborn and does respond to my teaching, and as if on cue, she begins to display ugly-stubborn and shows great resistance to my attempts to teach her.
-We embark on one learning curve after another with Tommy’s medical testings and tweakings galore; none of our efforts make the slightest difference to his diarrhea; the glimmer of light at the end of the tunnel keeps moving further away.
-The most basic necessary preparations I must make for Joseph and Lindsay’s wedding happen at the last minute by the skin of my teeth; God reassures me with tangible, unmistakable help to pull off the added responsibilities.
-God mercifully answers prayer by keeping Tommy’s diarrhea at bay for two blessed days, the wedding day and the next.
-Life continues a pattern of learning curve followed by a change requiring a new learning curve followed by a change requiring a new learning curve and so on; I hit a good stride for a few days at most before having to work on a new plan; I begin to anticipate the inevitable changes rather than making optimistic long-term plans during the few days that life seems like it may become manageable.
-One Sunday, God gives me a startlingly clear view of what is really happening in our family; someday I want to blog about it.
-Mid-month, God gifts me with the opportunity to go away with Joe and rest for one day.
-My younger sister, an approved respite care provider for us, says that she will be happy to help one Sunday a month to enable Tommy, Katie, Ben and me to be with our church fellowship–our whole family, together! This can happen after his diarrhea clears up.
–Nothing we try makes any difference to Tommy’s diarrhea but a new medication cuts way back on his vomiting.
-The glimmer of light at the end of the tunnel is almost out of sight; we face the real possibility that we will be stuck in this position indefinitely; what then?
-We hear that the three nurses who were trained and ready to care for Tommy during the day while he is at school will have to be re-assigned to other patients so that they can be earning some income.
-We begin to hear suggestions that Tommy receive in-home therapy services while waiting for his bowel issues to clear up.
-Verity is growing sadder and pushes me away when I approach her; she spends more and more time in her own world; it seems that she is shutting down and slipping away from me.
Where we are now, going into the last week of March
In spite of having taken a recent trip to DuPont to pick up a month’s worth of meds and to have some bloodwork done…
Me and two of my cuties~
Jane got some sweet shots of Ben~
Helping Tommy calm down, over and over and over again…
Susanna’s roadside G-tube feeds, at your service~
All set for the long trek back home~
…within the past couple of days, I’ve taken Tommy to DuPont again, twice, once for more lab tests and to pick up new formula and new meds to try…
The gas money is worth it–we can have all his prescriptions filled for a tiny fraction of the cost of just one of his meds through our local pharmacy, due to the 70% discount we receive from DuPont and their lower starting cost.
…and once to the emergency room to have his G-tube replaced when his tube was pulled out and his stoma began to close…and to pick up the rest of his new meds.
Tommy’s happy as a lark…
…but Ben is not.
Until a kind-hearted volunteer lady came bearing toys.
Right now we are waiting for further evidence that something may possibly be alleviating the diarrhea.
But we are braced for the reality that God may continue to say “No,” to our cry to Him for relief.
We still believe that…
He can do anything, even when He chooses not to, without explanation.
He has the right to choose for us, without explanation.
He did not make a mistake when He sent Tommy to us.
None of Tommy’s needs and none of our resultant hardships are a surprise to Him.
Hardship does not mean we are outside our Father’s will, in spite of every human feeling within us screaming to the contrary.
He has not forsaken us.
He is always faithful to give us more grace, even when we grow impatient and complain, struggle with resentment, and otherwise flunk the tests He sends us.
He can and will keep His grip on us when our strength is gone and we can’t even see where He is in the dark.
Our hope is still in Him. We will keep waiting on Him to provide for us and send us help in our time of trouble.
He is still a good God.