Knowing these surgeries are coming up, we sometimes discuss the surgery and doctors with Drew in hopes to minimize the shock of it all. I often find myself wincing when I say, “fix your legs.” I worry that the underlying tone of “you aren’t good enough” is heard by Drew. I try to think of alternate ways to describe the process, but he is three. I’m not sure a 1-hour lecture on human anatomy and external fixation devices are appropriate for his age.
And, aside from the politically-correct discussion about his legs, he hasn’t easily warmed up to the idea of the surgeries. Even when we ask if he wants to run and walk and play like the other kids, Drew responds, “No. I’m good.” He will occasionally get excited about running and playing, but he is at peace with himself. Which is a really good thing for him, but he’s so young and naive. While his positive outlook is a wonderful asset, I have to remind myself that this surgery is going to help him and make things easier for him, physically and emotionally. I just wish it wasn’t so painful to have to put him through this when he doesn’t understand.
People will probably say, “It’s great that he’s young and won’t remember this” and that is valuable advice, but he’s also so young that he doesn’t comprehend the positive results of this surgery and will surely see this as pain and torture for our entertainment.
On the other hand, we had a meeting about Drew’s occupational, speech, physical and educational progress at the school this morning and we discussed Drew’s reluctance to use adaptive devices. They had attempted several different styles of scissors, spoons and other devices to enhance his experiences but he likes to use normal ol’ spoons and scissors, with some difficulty, granted, but daggone it he will use the same pair of scissors that his peers use. And, that’s admirable. He just wants to be like everybody else, which I imagine is the dream that any person has who has the misfortune of having any challenges wants. For Drew to have the strength and determination he does gives me inspiration everyday and I, along with many other people, admire him immensely.
I need to keep telling myself this so I can not be so anxious about his surgeries. He’s strong. He’s determined. He’s strong. He’s determined. He’ll adjust to post-surgery life just like he adjusted to life without arms. This is going to be routine for him. But, as many times as I say it, I know that when I see him in his hospital bed with IVs, oxygen cannula, heart and vitals monitors, incisions, and bandages I’m going to a mush of emotions. I’m going to have to retrain myself not to baby him or facilitate an environment of self-pity. It was very hard to do it the first time, but I’ll be thankful for the support of Nathan and Yaya who will be with us during Drew’s first surgery. And, I look forward to his second surgery when I will know what to expect and will be less anxious about it!
I can’t believe it’s 6 months before the surgery and I’m already this big of a mess. Knowing it’s only going to get worse is not comforting!! So, please forgive these repetitive blogs of worry and venting!
(As a completely unrelated side note: I typed this entire post without a single misspelled word! Yay me and my college degree!)
i have to admit when the surgery date was set I became very ill and still do when thinking about it. Drew is the light of my life and it is so difficult to imagine him going through these surgeries. I realized how necessary they are when at the house with all the babies I started a tag game and Drew kept pace for a while but began to tire and requested YaYa’s help. We had a blast, but I realized how heavy he was getting and the reality of his being wheelchair bound the bigger he gets. It is not at all that Drew is not good enough for us, it is what is best for Drew. He could not begin to understand the benefits of the surgeries, so we have to look ahead for him and encourage him, and try to keep his thoughts positive and not let him see our worries. I could never have imagined loving a child as much as my Nathan, but have realized his child has blessed my life as much as he did. You three take my breath away!!!