Hold On Tight - by Jonathon Rogers, from YesICan.org
The following is a talk I gave to the Junior High class at Village Seven Presbyterian Church:
It had been a long and painful hospital stay. Just two years earlier, Maggie had been diagnosed with a brain tumor. With all the surgeries, chemotherapy, and long hospital stays she had gone through, in many ways her life was no better: she still suffered with seizures, sensory integration, and was a ticking bomb just waiting to go off. A small tumor had wreaked tremendous ramifications.
This day she was facing surgery yet again. My wife, Kathi, and I sat with Maggie in the surgical waiting area, giving her a blessing while she calmly waited to be wheeled in to the operating room. This was her third brain surgery and umpteenth millionth thing the doctors were trying in an effort to help Maggie. In hopes of bringing some relief to Maggie, the surgeon was to remove a portion of her brain that was causing seizure problems.
Just prior to being taken to the operating room, Maggie, just nine years-old at this point, whispered in our ears a message to pass along to the surgeon: “Tell Dr. Grabb that it is ok if he messes up. I’ll know that he did his best.” Maggie would later tell us that she was expecting God to ultimately heal her that day by bringing her home to Him.
In our own private prayers, Kathi and I had reached a point of asking God to either heal Maggie completely or take her home to be with Him. Things had gotten that bad and it hurt us deeply to see Maggie’s hope for relief dashed time and again.
Four hours later and out of surgery, Maggie was lying in her room unresponsive. Six hours later, she was still unresponsive. Doctors would pick up her legs and drop them – nothing. They would shout at her – nothing. Had God just answered our prayers by not healing her and not taking her home – just leaving her in this coma-like state? Despair and anger had taken over – what had God just done? Privately, the doctors were telling the nurses that they didn’t think Maggie was going to wake up from this. Something had gone terribly wrong. Instead of taking home a 9 year-old girl who could walk and talk, we would be taking home a girl in a vegetative state.
You can imagine the wave of joy that came over us, then, when all of a sudden Maggie batted those beautiful long eye lashes, looked up at us, and said “Hi.” Just like that, things had changed again. Instead of crying at losing our little girl, we were crying with joy about having our little girl again. There was now hope.
It was short-lived, though, because not one month later, Maggie was back in the hospital with seizures much worse than she had had before surgery. She was to get transferred to St. Louis Children’s Hospital to undergo two more brain surgeries and removal of some more of her brain.
That’s been the journey that Maggie and our family have taken over the years – hope given, then hope taken away.
It’s now been six years since Maggie’s original diagnosis, and in many ways, things are no better than they were when it all began. In some ways, things are worse. Barring removal of the entire right side of her brain, a miracle, or some breakthrough in medicine, the doctors are not hopeful that things will change much. Maggie will continue to have good days, some really bad days, be hospitalized for days and weeks on end, and then recover / rehabilitate. Repeat cycle.
How does a person live with hope being constantly dashed, knowing that things are not likely to get any better, and could probably get worse? How does a person deal with feelings of anxiousness and despair? The emotions will come and they are quite real. What do you do with days when the laundry still has to get done, kids have to be taught, work has to be done, bills have to be paid, but your daughter is still lying in bed shaking on the verge of another hospital stay? Some days, you just have to put your head in the towels and cry. How do you deal with the constant change of emotions? What do you do when your other three children are falling apart emotionally while your other child is falling apart physically? How do you deal with watching all of your friends play while you are curled up in your daddy’s lap on the porch? You want to be out there, too, but you can barely walk. How do you live a hopeful life when there isn’t much hope of things changing?
First – there are no easy answers. Nothing is black and white. There is no magical prayer, no top-secret Bible verse that unlocks the key to successfully dealing with long term trials. God promises an abundant life in Him, while also promising that there will be pain and suffering. The thread tying those two together is that He promises to care and provide for us through both, seemingly opposite, situations.
What I have learned, and our kids are learning through traveling this journey with Maggie, is that we have to hold on to what we know to be true and unchanging. Feelings that God has abandoned us are real, but they are not rooted in fact. What is true is His promise to love and care for us. Loving and caring for us does not necessarily mean fixing a problem. It might, but it oftentimes doesn’t. His loving and caring might look like humility and service to others. His loving and caring for us might look like using His church body to help us with money to pay hotel bills, food, and caring for our children. His loving and care for us might look like rallying your friends to send you emails and cards while you are in the hospital. His loving and caring for us might involve allowing some additional pain in order to ease pain in some other area. His loving and caring might just look like allowing long term suffering so that we may grow closer to Him as a result and have a greater understanding of true joy.
That is what allows Maggie to exude joy while in the midst of severe pain. That is what makes Sarah Hammerstrom’s eyes light up with such happiness while being bound to a wheelchair. That is what will provide Waverly Weeks hope as she lives with two rods in her back for the rest of her life due to severe scoliosis. Joy and contentment have nothing to do with how good you perceive your life to be or how well your life is going. We have to hold on to what we know is true of God, His promises, His character. We may not ever know the true purpose in why we, or someone we love, was let to suffer in a certain way or why we were dealt a certain lot; but what we do know about God is that He doesn’t change, He is firm in sandy soil, He longs for us to cry in His lap, and that He has known about our suffering from before time. Therefore, nothing is a surprise to Him and nothing rattles His cage. He has given us Himself, something firm to grasp, when everything around us is falling apart.
Trials and suffering will come your way. It will look different for each of you, but they will come. What are you doing in your life right now to prepare? How are you preparing the soil in your own heart right now for what will one day come your way? Are you having heart to heart conversations with God right now so that they will become even more natural and real when a particular problem does come your way? Are you reminding yourselves about God’s unchanging ways, His goodness and His promises by reading about Him and hiding those promises in your heart? Are you spending time with others who are hurting and being there just to listen – not to solve their problem, but just to listen?
There is a verse that has come to mean a great deal to Kathi and me in the past several weeks. It speaks to God’s love and care for us, while not necessarily changing our circumstances. Remember my comment before about how joy and contentment are not necessarily tied to how well we perceive our life is going at the moment?
Psalm 139:5 You hem me in, behind and before, and lay your hand upon me.
Have any of you ever had a little puppy? Those little puppies can go wild and crazy with no boundaries. Put them in a box and they begin to calm down a little because they have some boundaries, but the anxiousness is still there. It isn’t until you put your hand across their tiny back do they begin to calm down and relax.
Even though we may not like the situation we’ve been put in, there’s an indescribable comfort in knowing where the protective boundaries are and who has built them. In addition, feeling God’s pressing hand laid upon us has a strange way of easing the anxiety we feel: He’s letting us know that He’s there and He’s placed us in this spot that we don’t like. He’s done this because He loves and cares for us.
God could have just hemmed us in from behind and in front, but it is Grace and Mercy that He also lays His hand upon us. Not only does He protect us, he calms us at the same time.
We took Maggie to the Epilepsy Foundation Camp in Estes Park on Sunday. Just from the few hours we were there, it was quite insightful to see Maggie talk with other kids like herself about doctors, medicines, etc. One of the girls bunking with her was on the ketogenic diet. Needless to say, we can’t wait to pick her up on Thursday, but we know she is just going to have an amazing time. Can’t wait to hear the stories.
