Justin’s condition has significantly improved in the past weeks, but he is still not able to walk very well. He has also regressed to habits and behaviors consistent with a much younger child.
We are no longer in the vomit-catching-diaper-changing-sleep-deprived-survival phase of his care. However, we are now presented with new challenges as we attempt to focus on physical therapy, homeschooling and nurturing behaviors more appropriate to Justin’s age.
It is a difficult balance. Justin is still receiving chemotherapy and due for two more lumbar punctures this month as well. He is still not feeling well and must go through painful, uncomfortable, scary experiences. But we see the effects of coddling him. Naturally, he expects that kind of treatment all the time.
We get it.
But it’s really hard not to baby him when he’s having needles stuck in his chest and spine every week. It’s difficult not to spoil Justin a little when he sadly talks about not being able to run around with his brothers anymore or go to a birthday party with them. And it’s especially hard not to do so when he excitedly stands up to play Wii tennis then falls to the floor because he hasn’t the strength or balance to stand for more than a few minutes.
It is difficult to know when to use tough love and when to just let him play Lego Star Wars and eat hot dogs all day. Especially considering all Justin has been through. But, as parents, I know we must do what is best for him in the big picture even if it hurts a little. On the other hand, I think he should get French fries and a milkshake for dinner if that’s what he wants. He’s five-years-old, lost his ability to walk, lost his life as he knew it and has been through 40 days of chemotherapy for crying out loud.
So, as you see, it’s a strenuous balance. And one we have certainly not achieved just yet. But we are aware of potential consequences and working toward sorting this all out.
I’ve had a few minutes to breathe since I haven’t been scrubbing soiled carpet and washing blankets every five minutes. During the adrenaline fueled weeks at the hospital and first few at home, I didn’t really pay attention to my own physical struggles.
My body is clearly not happy with the stress and it’s reacting accordingly. I’m experiencing back pain, joint pain and muscle pain. Okay, that looks really bad when I write it out. And, yes, it is difficult, but not unbearable. I’m also still experiencing some kind of blotchy-skin-tomato-face stress reaction.
Undoubtedly, we need wisdom to make good decisions and grace to pull us through each day. Where else can I go, but to the Lord? Who else is able to grant wisdom and pour out grace on the undeserved? Not only that, but God desires to walk with us, shelter us with his presence and give us rest.
12 Moses said to the Lord, “You have been telling me, ‘Lead these people,’ but you have not let me know whom you will send with me. You have said, ‘I know you by name and you have found favor with me.’ 13 If you are pleased with me, teach me your ways so I may know you and continue to find favor with you. Remember that this nation is your people.” 14 The Lord replied, “My Presence will go with you, and I will give you rest.” Exodus 33:12-15
Amid the chaos and the pain, my heart is steadily joyful. And although my mind and body are stressed, I have a calm stillness of spirit. This can only be because I know the presence of God is with me. And I believe that, ultimately, His time of rest will prevail.
Grace be with you, my friends.