It’s dangerous to write a post when you are at one of your lowest moments, but I just feel like I’m losing it. How much more can a single person take? I hear people offer words of comfort about how God only gives a person as much as one can handle, but lately, I’ve been feeling pretty beat up…a scapegoat. I don’t want to be that girl anymore who is so strong. If being strong means that life and its challenges are harder, then I’d rather be weak. Shouldn’t those of us who have had to be strong for so long get a break? I suppose it’s somewhere in my future, but that means I have to get to it. And, sometimes, like now, I just don’t know how much I have left.
Drew got a new shoe today. It’s not a shoe like you and I wear. It’s a blue piece of plastic that molds around his toes on his fixator leg and supports his toes with velcro that attach around the rings of his fixator kind of like a sling. This prevents the toes from curling under, which will happen as we make adjustments to straighten his leg. The “shoe” is supposed to keep his toes in neutral position to avoid the deformation throughout the adjustments. The toes on his left side are far more tight and sensitive than the toes on his right were when he had that fixator and physical therapy spends a lot of time stretching his toes to combat the tightness. Drew doesn’t react to this well. You so much as breathe on his toes and he goes nuts. His therapist thought that his “shoe” wasn’t doing enough to keep his toes up as they were starting to slant downwards so he sent us over to occupational therapy to have his shoe adjusted.
They glued some memory-foam type foam to the shoe for his toes to rest on and lengthened the straps so they wrap around the ring around his knee instead of the ring around his ankle. They also placed an elastic strap around the top of his toes to flatten them against his shoe (I’ll take a picture tomorrow or soon, I thought today it might be a little heartless to snap pictures while he suffers) This shoe offers much more support, but it’s extremely painful. Extremely. Basically, he now has the same stretch infinitely as he experiences in physical therapy in which he reacts so strongly. All day today, it’s not been, “My leg hurts!” For once, he hasn’t complained about his leg. Now, he whines non-stop about his toes. And, I don’t say whine as in that annoying just-get-over-it-already type of whine, I mean whine as in sympathetic, pitiful, desperate type of whine that goes deep to your heart and makes you ache for him. He isn’t just annoyed with it, he’s in true and unbearable pain.
Pain medicine is doing little to help him. I find myself more often in the last few days having to give him his dose of pain medicine 15-20 minutes early or a very small dosage halfway to hold him over. By this time during his right leg fixator, his pain started to wane, but Drew is still heavily reliant on pain medicine. His leg hurts nearly 100% of the time. There are times during the day when he’s content and focused on other things, but I don’t think a 30-minute interval has gone by where he hasn’t complained about his leg hurting. Sometimes it’s not so tragic or unbearable, but he does hurt. Frequently, he’s in such unbearable pain that he is inconsolable.
He spends so much time crying and in pain, I’ve found that my tolerance level for crying is greatly increased. The other day, I was taking a nap and in my conscious mind I was aware that Drew was crying and calling to me, but I was so sleepy that it took several minutes before I woke up. I always try to offer Drew comfort, but nothing helps so I just sit there and hold his hand while he cries. I can concentrate on the TV, read a book, his crying doesn’t affect me physically most of the time. I’m almost immune to it. You can only take so much before it becomes normal and overlooked. But, sometimes, like tonight, the feelings come rushing back to me.
I just can’t bear looking into his eyes, desperately appealing to me to make the pain stop. Tears streaming down his face. Face reddened and he looks so defeated. He begs, and I mean begs like one begs for their life when faced with a gunman, to make it stop. To stop doing whatever it is I’m doing at the time. He cries, “I can’t take it anymore! Just, please, stop!” Can you imagine what it’s like to be the one worsening or causing pain? If you had a broken finger and someone was twisting it around, how would you feel towards that person? Kids whose mothers or fathers run out on them have tons of issues and social problems simply because a parent disappeared (I don’t mean to diminish how awful that is because it is awful, but I’m trying to think of this as a scale that goes from bad to worse and wouldn’t you agree that a parent who stays and purposefully causes physical pain is worse?) I wonder what kind of emotional consequences of watching the two people you trust the most be oblivious to your pain and make it worse? He’s four years old. These are critical years. And, he’s spending it under anesthesia, being poked and prodded by dozens of strangers in hospitals, restrained, inactive, left out of playground fun and backyard horseplay. What must this being doing to him emotionally. After all of this is said and done, he’ll have spent nearly 20% of his life in dire pain and misery.
How much more pain can I cause Drew? It kills me to not make him feel better, but make him feel worse. When he’s in pain, I must wash his pins. When he’s in pain, I must lock his knee in his brace. When he’s in pain, I must stretch his muscles and with another person, force him to do things that cause him great pain. When can I finally hold him and tell him it’s all over with? When can I finally tell him that all the pain is going to stop? When will this all be in the past and start having fun again? When can he be a normal kid and us a normal family again? Sigh…
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Janel, I can’t begin to tell you how amazing you, Nathan & Drew are. You are doing this so your son can walk, and won’t have to spend his entire life in a wheelchair. I saw the look on Drew’s face as he walked on the treadmill, he was seeing for the first time what it as like to walk, and he liked it. It is hard, I know, it kills me to know he is hurting so much, but at the same time I am so excited for him. We will have a huge celebration when this is over! GOD bless Drew and his Momma and Daddy, in JESUS NAME. Amen