Perhaps the most talked about issue after Justin’s heart surgery is the prominence of his scar left by the long chest incision from close to his neck to the middle of his abdomen. As various nurses and doctors continued to check his chest regularly after the surgery, they commented on how “well” his scar has healed, and assured me that as he gets older, it will become so faint that I won’t even notice it. “Kids recover so well, you’d be surprised,” one nurse had told me. His pediatrician, at another visit, confirmed that while the scar looks to consume his entire body now, it’ll seem so much smaller as his body gets bigger. I am often given this information without even having to ask for it, as if every medical professional assumed that this is one of my greatest concerns…how close to flawless my son’s skin will look as he gets older. And, seeing how we live in this superficial world where physical perfection equates success and acceptance, I have to admit that it WAS one of my greatest concerns…that is, BEFORE I gave birth to my dear Justin. I can say that when hardship presents itself, perspectives on life can truly change.
Everlasting
As you all have followed us through this past 2 months have come to see, Justin’s life and existence has become the forefront of our lives. To find a balance in our family with his coming has been quite a challenge for not only us, as parents, but also for our firstborn, Nathan, great-grandparents, grandparents, aunts and uncles, cousins and friends. We’ve all put a hold in our lives at some point where all we could do was hope and pray that he’d make another moment or another day. We’ve all tried to make some sense in all that is happening to this little one…we’ve tried to make sense of our own lives with Justin in it. Although the physical changes we made are not much different than any other family welcoming a new child to the world, with Loi and me leaving our independence and newfound home to move back in with family for more help, or with Nathan having to sacrifice his time with Mommy and Daddy so that Justin could get the attention he needs, the emotional distress that we’ve all undergone is the most scarring. I say this with mostly Nathan on my mind. We left him for almost an entire month, returned to him with a new little person in our lives, and basically since then have not more than 30 minutes at a time with him. Sometimes, Loi and I are so tired from sleep deprivation and the stress from the rest of our lives that we cannot even think clearly enough on how to deal with him when he screams at the top of his lungs in the middle of the night, obviously as a cry for attention, and out of frustration for the immense change in his world, yet not fully understanding why. As a result, I get angry at myself for letting it get to this point where he doesn’t feel loved. At the same time, I feel like such a failure and great sadness for having “abandoned” my firstborn, my first love, in so many ways. They both need me now, but I am lost on how to split my time and energy. I can see how all the events that have taken place can create some damage on his vulnerable developing ego. And, we’ve tried so hard in the last 2 years to develop strong self esteem, respect, and independence. At this point, I don’t know to blame the terrible twos, or our actions for the little monster that he’s become. Either way, we’re working to create some sort of normal for him among all this chaos in his world. So, you see, Nathan has some wounds also. And, the healing must soon begin. But, as a result, he will also be left with a lifelong scar. Though not visible to the skin, it exists nonetheless.
As for Justin, for all those who are wondering if his scar will ever “disappear”, his scar is everlasting. Although Loi hopes that one day there will be some medical technology that can erase the appearance of the scar, the truth of the matter is, what is done can never be erased, only forgotten. Whether or not Justin’s scar is visible does not deny the fact that he has a heart condition, that he’s been through surgery, and that his life is defined by his anatomy. So, in some ways, I want him to always have his scar to constantly remind him of who he is, and what he’s to become. I want him to look in the mirror, see that long line and acknowledge that yes, he has a weakness, and yes he will have many obstacles to overcome because of it. But, as I will constantly remind him, he WILL overcome, and he WILL succeed. I believe that it is not until one can fully see his or her weakness that he or she can become stronger from it by challenging it. I don’t want Justin to forget that he has a heart condition because it is this that makes him so unique, and beautiful, and inspiring. It is his heart condition that will make him appreciate each day of his waking life. I want him to look at his line and remember to take good care of himself through good eating and exercise, and to remind him to take his medications and keep his doctor’s appointments. I don’t want him to pretend the problem will just go away. At the same time, his scar will remind the rest of us the preciousness of his life. Whenever I see it, it invokes feelings of fear inside me. I am reminded if he’ll qualify for a heart transplant if and when he needs one later in life, that one day I may wake up and not see his beautiful eyes, that the medications may have some adverse effects on him, that my mortal life is not eternal and I won’t be able to take care of him forever. Believe me, there are days that I want to play pretend too so that I don’t have to realize the fears deep inside of me that could very well come true. But, the scar puts everything back into perspective that life is sacred, and I must remember to cherish each moment of it.
The other issue that comes to surface about Justin’s scar is whether he’ll ever find a mate who will be accepting of it. My belief is yes. And, through stories that we’ve read, one where a man with Hypoplastic Left Heart Syndrome has gotten married, shows that the world is not as superficial as we may perceive it to be. While hearing someone question whether a girl will like him because of his scar leaves me with a tinge of resentment, it also invokes feelings of hope. I am hopeful because I hear talk of the future, that one day my son will be a grown man, and finding a mate for him will be of issue.
So, my sons will be proof that what doesn’t kill us can only make us stronger. As I once read from the writings of a wise soul who has a child with special needs, what would we be teaching our children about compassion if we chose the “easy” way out. Though trying times may be for Nathan at this time in his life, I have hope that he will rise above and become the man we’ve always dreamed he would be. In the meanwhile, any suggestion from those parents out there would be helpful 
I close this with saying that this is a lifelong battle for us, and all we can do is take it one day at a time…
