Yesterday we were driving to the playground and “The Climb” came on the radio. I am sure you’ve heard it. It’s a Miley Cyrus song and it’s on all the time. It is a “cry song” for me. No matter how many times I hear it I cry, at least a little. This song is particularly touching to me because… well you can guess what it makes me think of. My boy’s got quite a climb every day and he makes it look easy! The photo of him climbing the rock wall was taken about six weeks after surgery.
So “The Climb” (cheesy as it may sound) is my theme song for this lengthening. Nicholas asked me what “the climb” meant and we discussed obstacles and how you can get through them and still enjoy your life. Then I pointed out that having an external fixator could be considered an obstacle. “Even though it is hard to go through leg lengthening you enjoy every day and make the most of it” (now I am just about crying while driving). Nicholas’ response was “No Mommy you’re my obstacle, you’re always telling me not to run, slow down, be careful, don’t jump.” So I said “if that means I am your obstacle than I am Charlotte and Christopher’s obstacle too. It’s my job to keep you safe.”
I had a theme song for Nicholas last surgery, John Mayer’s “Bigger Than My Body”. I really felt Nicholas was bigger than his body, more than fh or the lengthening or any of it. Maybe the entire song does not fit but the chorus was enough to create a cry song for me on the drive home from Baltimore after Nicholas’ first surgery. That drive was filled with relief and absolute fear! We practically ran out of the hospital with him because he needed to leave that environment and so did we. But we were also so scared of him being in pain, of him getting an infection and just about everything else.
Now here we are filled again with both fear and relief. Nicholas has gained 11 cm in total through limb lengthening but we are still in the thick of it so to speak. Last night he woke up crying because his tootsies (toes) hurt. He actually asked for his yucky (prescription) pain medication which he has not had in I don’t know how long. Even though he asked for the pain meds, and even though he was in pain, once the medicine dropper was in front of him, he refused to take it. It took a lot of convincing and a pack of orange Pez to get it in him. Afterward he said in his sweet and tired voice “thanks for telling me it wasn’t so bad Mom, you were right.”
The tootsie pain is gone and I have no clue why it happened but it is a reminder of how much of a climb this is for Nicholas. At one clinic appointment he said “Dr. Standard I’m glad that you’re lengthening my leg.” and Dr. S said “You’re the one doing all the work buddy and you’re doing great.” This climb is most certainly his but these are the moments I will remember. I am so grateful to have such an amazing boy.
Nicholas just asked me to put on the song “Eye of The Tiger” for leg wash. Maybe he’s trying to pick a theme song too.
*** Before I could post this the cause of the tootsie pain was revealed. During Nicholas leg wash I noticed that one of the pin sites on his foot was red. Steven literally ran out the door to go to the pharmacy because it was 8:45 and it closed at 9. I called and told them he was on his way and what the Rx was for. They have had a few other quarter to nine calls from me. During pin care there was some serious goo coming out of the red site so the mystery was solved. I will be glad when the foot portion on the fixator is off because 3 out of 5 infections have been at a pin site on his foot.