Not Another No

“Persist and persevere, and you will find most things that are attainable, possible.” – Philip Stanhope, 4th Earl of Chesterfield

So what do you do when your child refuses to eat or even worse…..move.  It amazes me how stubborn Tucker can be.  It is this strong will that helps him battle leukemia but it also takes it’s toll too.  Especially when he refuses the things that he needs.  A big part of me whats to let it slide, after all he has been through so much right? But a greater part knows that even when it causes him to cry, hurt and really dislike me it is necessary to push him.

After spending a week in ICU Tucker lost a lot of strength and needed to go through painful physical therapy to rebuild his leg muscles.  Marching in place and leg lifts brought him to tears.  Often treatments will cause him to loose his appetite. Chemo messes with his taste buds and causes him to be nauseated. Some medications upset his stomach and cause acid reflux. The last thing that he wants to do is chow down on anything and there I am shoving a saltine cracker in his face.  Not a good way to make friends.

This last trip to the hospital had us dealing with both. Arriving with a 103 degree fever and back pain from inflammation due to a recent spinal tap left Tucker in no mood to eat or move.  As he refused to do both his condition didn’t show a lot of improvement. In fact it seem to get worse.  Lack of movement caused his back muscle to tighten up and the pain made him fearful of moving. He spent several days refusing to even sit up in bed.  Not eating just made him weaker and made it that much harder. We were not going to be able to leave the hospital until he did both.

Dealing with a stubborn patient can be taxing on everyone.  Strategically you have to find a way to empower and push him to want to do what the doctors order with out loosing your temper or getting frustrated. Knowing when to let him take a break and when to prod him to go further is a fine line with lots of overlap. Bullying him will not get the result we need and will make him feel unsupported. Like what he says has no value or is not believed.  After all this is his medical care and he should feel heard in all of it.  But giving in to his every request to avoid that which makes him uncomfortable will cause him to grow complacent and give the disease the advantage.

There are a few things that I have learned are helpful when we run into these road blocks.  First is to acknowledge to Tucker that I understand his frustration and that I believe him.  Next is to stand firm in the reasons he is being asked to do something and I ask him to consider for himself what the possible consequences could be if he refuses to do it. If he is still being obstinate then asking the doctor or nurse to explain to him what the consequences will be helps to reiterate why it important to push himself out of his comfort zone.  And lastly turning over the task to the nurse is sometimes the best option.

Persistence pays off. Before I throw my hands in the air and give up I take a 5 minute break. Letting Tucker know that and looking at the clock together.  Then when our break is over we start again.  It might take an hour to eat a saltine cracker but with patients and persistence we get it done.

Ask Tucker to make the plan. Encouraging him to tell me what he is going to do to get the task accomplished. Then I only have to remind him that the course of action is his and that he agreed to the plan. This give him back a sense of control of the situation while still accomplishing the goal.  After several days of mouth sores that prevented Tucker from eating he had to drink Boost to help restore much needed nutrients and calories.  He couldn’t stand the taste of it.  Together with the nurse he agreed to take a sip every 5 minutes and while he hated it he got to control the rate the job go done.

Tough Love. When he is firm in his refusal it is better not to fight with him. We need longer than a 5 minute break.  At times it is ok to be honest with him and simply tell him that his refusal to participate in his care is frustrating to you. That you are disappointed because he will not get the result you both are looking for and most of all that you do not what him to give up. Then take a moment away. Either go get a cup of coffee  and leave him be for a half hour to simmer on what you have just said.  The point is not to get mad at him but to firmly address that his actions are not only bad for him but are bad for you.

Encouragement and praise. While often I want to exclaim FINALLY, GOOD GRIEF!!!  It goes so much farther if you say, Great Job! I knew you could do it!  You are so brave. Wow way to go! I know that was hard and I am so proud of you!  Praise is powerful and helps to restore the relationship and wash away the frustration and tension.

(Tucker and I get Goofy)

I try never to forget that Tucker is in the fight of his life. An exhausting, nauseating, painful and frustrating battle. It has its bad moments but has it’s good too. Through all of this he has seen first hand the power of friendship and the loyalty of family. He has pushed himself to the limits and become a stronger person for it. Each new day comes with it’s own set of challenges but none to great that together we can’t handle and with grace we can’t get through.

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