Tonight’s Lilee news is short but sweet. We were told earlier this afternoon that Lilee would not be able to have her procedure done today and that she was placed on the list for hopefully Sunday. We were glad that we found out early enough that she was able to stay pretty close to her feeding schedule.
I have spent much time on this blog sharing with you about Lilee’s story, her progress, how her family is doing, her doctors, nurses, schedules etc. Tonight as Erin and the grandparents are off to their hotels for some much needed rest and “the bean” sleeps peacefully beside me, I can’t help but to reflect on the week that has past and what we’ve been able to see while we’ve been here. I wanted to turn the attention to some of the other patients that Lilee has shared her room with these past 6 days. They are just 3 stories that represent the hundreds maybe thousands of individual stories that could be told by families who have shared these quarters.
Lilee has had 3 roommates since we first checked in on Sunday afternoon. Her first, Tasha is a 16 month old blondie that had already had a long day before we even checked in. She was rushed to the ER the previous day with a very serious infection that resulted from a ruptured cist in her abdomen. By the time we were admitted, she had already undergone her first surgery and was very heavily medicated. We will not easily be able to forget Tasha’s woeful cries of “Mamma, maaammaaa, mamma” that we heard day and night during our first 48 hours here. Her parents later told us of the 6 hours of hell they endured in the Emergency Room and how the nurses tried over a dozen times to find a vein in her little dehydrated body by which start an IV. First her arms, followed by her hands and then her feet, even her scalp but were not successful. Just as doctors considered a vein in her neck as the next option, nurses were finally able to start an IV in her wrist. Although Tasha’s road to complete recovery is still long, she was moved to a different room earlier in the week. We can still hear her low and loud voice down the hall, as she continues to cry her “Mamma, maaammaaa, mamma.”
After about 6 hours after Tasha’s departure, our next roommate Lucia arrived. Although they had just checked in, this was not their first visit to this hospital. For the past several months, they have been in and out of the LPCH with unexplained seizures. Lucia is 4 or “cuatro” as she says when the doctors ask her “cuantos anos tienes?” What a painful age to watch in such a place. She’s old enough to know something is wrong but still to young to understand the process. All she knows is that there is a steady stream of “big people” that come to see her throughout the day; some come just to talk (usually the doctors) but the majority she knows arrive to stab her with needles. One day, it seemed like every few hours a new team arrived. Some were quick and the cries were brief but the others… oh the others. The cries of helplessness and pain would shred the thin curtain that divided our world from theirs like jagged steel claws at your heart. Why? Why? Why Lord? Why does it have to be the babies? I cannot understand. You can imagine the joy we shared with her family when they where told that the doctors were satisfied that with this new cocktail of medicines, her seizures would be reduced and she would be allowed to go home that night. As she rode out in the hospital’s little red wagon, with her big brother by her side, I prayed it would be a long time before that precious little one would have to come back to this place.
Little more than two after Lucia and her family received their pass to freedom, our third roommate moved in for the night. She was Hispanic like Lucia and her family and yet that is where the similarities ended between Esperanza and our previous little roommates. Esperanza is 15 and she arrived to our room alone as her father had not gotten off work yet. At first it was odd to me that that would be allowed but I quickly observed that of late, visits here had become commonplace for her and her family. Esperanza is battling leukemia and is undergoing chemotherapy in efforts of fighting her attackers. This visit however was to receive surgery on her leg. For the past few weeks, maybe months, she has had a sore that now has become infected to due her depressed immune system and now it must be operated on. Her demeanor surprises me although she is not unfriendly or unpleasant. Esperanza exudes a very business like disposition as though she is here for a job and there is work that needs to be done. I come to realize that she has become more than a child but a seasoned veteran of the war on children known as disease. Just as battled hardened soldiers who no longer wince at the sight of death and destruction, she faces her reality with a bravery and courage not seen in grown men twice her age and experience. So contrary to my own little daughter and her two previous roommates, Esperanza has come to understand the futility of tears or excess emotion in a place like this. She speaks directly and deliberately to her doctors and nurses as she remains focused to the task at hand. From my side of the curtain I witness this teenager (though still very much a child) spending the hours following her surgery painfully vomiting from the nausea caused by the anesthesia with all the dignity and strength she can muster… all without a tear. She only pauses long enough to rinse her mouth and ask the nurses, “Can you get some shampoo for my dad? He wants to take a shower.” Her single dad, who speaks no English was here last night by her bedside, arose at 6:00am to go to work and is now back to spend the weekend with his daughter as she recovers. As they say their prayers in Spanish at their bedside tonight, the realization sets in with me that this is but another night spend in a hospital like so may before it and so many yet to come for Esperanza, her family and so many like her.
Until this week, I’d never seen first hand the strength that can emerge in a child and the devotion that can exist in a family who are tried to the limits. I tell you the stories of these 3 little girls not that you would be saddened or that you would extend them your pity. I feel I must share what I’ve witnessed this week with you in hopes that you might be able to draw on just a bit of the strength that these children and their families possess. So that next time you are faced with one of life’s hurdles, when you happen on challenge that seems to tough to endure, you might be able to recall this mental snapshot of courage that these little ones hold on to so that they may get to see tomorrow. Hug your family today, make that call to say “I love you” to that someone that you just haven’t had time to connect with and most of all, would you take just a moment to thank the Lord for the countless blessings he has bestowed upon you and yours? I suppose if we can all do that, then little Lilee’s trials this week will have a bit more purpose, meaning and victory. Thanks for reading the tired ramblings of this daddy’s late night diary. We love you all, and look forward to sharing and hearing good news soon. Have a great weekend, we’ll talk soon.