We make friends in the strangest places. For instance, the friends that we recently made in the shared hotel, I mean hospital room that we inhabited during Little's last hospital stay. (It's the little bottles of shampoo and free packs of diapers that they pass out, it gets me every time...just like a Hilton I tell you! A little pricier though.) A shared room?!?! you say? Yes, that's right. Our children's hospital still has shared rooms for patients who don't require ICU level services. I won't beat around the bush, in most cases it sucks. Hearing that you're being upgraded from the ICU should be a great thing. Instead, upon being notified of your "upgrade" a feeling of dread washes over you as you begin to wonder such things as I wonder if our roommate will be loud (leading to the inevitable) I wonder if my baby will be able to sleep if our roommate is loud? Or I wonder if our roommate is contagious (its happened to us twice people...I am not just being paranoid), and I wonder if the parents of our roommate plan to have a veritable fiesta of some sort on their side of the room while we're trying to get some rest. You know, happy thoughts. Anyway, the last time we shared a room, we were pleasantly surprised to meet our roommates, the Grills, who not only made our 4 day stay that much more pleasant by being considerate, caring, responsible human beings (this is a bit much to ask for sometimes I've discovered) but also introduced us to caringbridge.org. They had set up a support site in order to keep their friends and family informed about their daughter's condition and had gotten much joy out of the experience. The day that we were both discharged from the hospital, Mrs. Grill gave me the web address to her daughter's site, and asked me to set one up for Little, so that we could both follow the other child's health and progress in the months to come. Eventually, I did. (here comes a big leap people...get ready for a big subject change...aaaaand...leap! Excellent.)
A few weeks ago, I logged on to the Grills' caring bridge page to read their latest journal entry and see how their precious little girl was doing. Instead of news on their daughter, I discovered an entry that pleaded with followers of their page to go to another child's page, in order to offer encouragement and strength to the parents of a little boy (who they had met during another one of their hospital stays) who "wasn't doing so well". So along I went, to this other child's site, in order to do what I could for these people who were, I assumed, facing some tough times with their child as he was recovering from an illness or medical condition...something that I felt I was fairly familiar with. Instead, I was found myself completely unprepared for what I found. It seems that just days earlier, the parents of a beautiful baby boy, whose handsome face adorned the welcome page of his care site, had been told that their little guy was most likely not going to make it. My heart about stopped upon reading just the first journal entry. Because I felt like I needed more information on what affliction he was facing and how this could possibly be, I decided that I needed to do a little more digging into past journal entries. I then quickly wished that I hadn't. Reading the loving, heartbroken, fearful words of this mother was nearly more than I could handle. I offered my love and encouragement to them, and then promptly called in to work and took a vacation day so that I could spend the rest of the day hugging and loving my daughters. I found myself a bit sheepish, unable to explain just why the struggle of complete strangers would turn my world upside down so easily, until that evening when I was discussing things with Hubby. "I can't explain it," I told him, "I feel strange about how much this is bothering me. I don't even know these people and I hurt so much for them." His reply? "Or maybe we know them all too well." Indeed. Because this is the exact situation that we work valiantly against everyday, watching Little like a hawk, calling her doctors and nurses at every slight sign of negative heart function, to make sure that this is somewhere that we never find ourselves, on the writing end of journal entries such as these. It all began to make sense.
No matter how hard I tried, or how much I was encouraged not to do so, I found myself unable to not check up on this family over the next few weeks. Hoping for a miraculous recovery, I would log on to their site, first being met with the handsome picture of the sleeping baby boy, so sweet and innocent...and then, inevitably, a disturbing, heart breaking journal update. Slowly, day by day, the little guy was passing away. I remember reading one particular journal entry in which the boy's mother wrote the doctors had told them that they believed that he would be passing soon, and that she and the boys father were as ready as ever for him to go, and hoped that it would be soon. I sobbed. I couldn't help but wonder what kind of emotional torture one must be subjected to in order to be ready for your child to pass away. Was it possible to know this kind of pain without going absolutely mad? I then quickly prayed that I would never find out the answer to that question.
Within a day of the previous entry, came another journal entry...one that I had been praying that I would never see...saying that the little guy had, indeed, passed away. Again, I felt a bit sheepish about how deeply affected I was by this news, but found myself completely unable to check my heart at the door, and I wept for them. I wept for the handsome baby whose face I had only seen in pictures. I wept for the parents who had gotten the kind of news that I don't even allow myself to contemplate as a mother. I wept for the grandparents and aunts and uncles who had seen this precious gift enter the world with so much hope, only to have to let him go so soon. I wept for all of them and, to be honest, more than two weeks later I am still unable to shake the heartache that began the day that I first wandered over to their web page. I wonder if I will ever stop thinking about them, and seeing that little guy's picture in my mind. I wonder if I will ever forget.
How does one go through something like that and survive? How does a parent get up everyday and face the sunrise after losing a child? Is it possible to ever be truly happy, to experience joy again after living through something like that? I don't even know them, and even I feel as if my world has been rocked by what they've been through. I wish I had some insight to offer on this, but must also admit that I am ever so thankful that I have absolutely none, and that I desperately hope that I never do. More than anything on this planet, and beyond...I hope that I never have the answers to these questions.
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The internet is such a powerfull tool, allowing us to make connections with those that we would not in our day to day lives.
I 'met' another mom who at the time was pregnant with a child with the same condition as Itty-Bitty. I followed her pregnancy closely. And when her son passed a few days after being born, I cried. And cried. Our pregnancies were very similar, same birth defect. My child lived. Hers did not.
My heart still aches for the family and I think of them often. And every May I send a Birthday card in rememberance of his too short life. I dont think I could forget about that little boy if I tried.
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