Nursing staff and families desperately try to make the hospital feel more like home during the holidays. From stockings to Christmas trees, presents to holiday socks, even reindeer antler headbands and Santa suit bibs were all seen throughout the NICU and PICU at UVA. All in hopes to just bring a wee bit of cheer to the hospital setting. They all do their best to make the best of every situation, but there is still that hint of despair that things should not be this way lingering throughout the halls...despite the smiling faces and special visits from various people trying to lightening the mood.
Nursing staff do their best to allow families "their special time" with the child they're visiting, but there is always a hustle and bustle throughout the units, as medications have to be given, settings are constantly being changed, and even just the stimulation of having visitors can be too much for these little ones to handle...here is where the perspective starts...a mother praying her newborn baby will finally open his eyes and the first person he sees wil be her, rather than a stranger. A nurse that sees this sweet child in an uncomfortable state, but also is begging for his eyes to open and see his mother for the first time as well...rather than having to give him medications that will cause him to fall back asleep and allow his body the rest it needs to heal.
I've been in this brand of shoes, just a different model...I've been the NICU mom twice waiting to know what the next day held...but here...it is minute-by-minute. I never had to stand next to their isolette staring at a piece of green plastic, praying to constantly see their little heart continue to beat on its own. The very definition of helplessness as a parent is defined by this picture...but so is the very definition of hope.
Many of these families would never ask for a dime of help from anyone, even though the out-of-pocket costs are astronomical between travel and lodging costs, in addition to just real life bills and responsibilities...they don't see these costs as a burden, they see them as a necessity. Trying to keep their family together, handling not only the complex medical care decisions for one child, the exhaustion of working full-time and raising two other children at home, and then add the stress of trying to maintain normalcy...but knowing that this is normal for us...it is a completely different dimension of life. This daily struggle, is something no one should have to go through, but families do this every day of the year...the struggle is only intensified over the holidays...and comes with all of the same emotions, but a million times stronger.
The holidays are always so full of excitement and joy...but they are also filled with those darker emotions that seem so unfair and cruel to have to feel during such a magical time. The one thing each of these families have is hope...hope that a second opinion will show there is still more that can be done, hope that tomorrow will be the day the swelling decreases enough to close a chest, hope that funding will come through to ease financial strains, hope that their child will finally be closer to home...and hope that one day their normal includes everyone under one roof together.
It is in these reflections...the true nature of what having a child born with complex medical needs is revealed, the face of these diagnoses is truly seen for what they are. Sure, there are all the happy stories of Santa visits and celebrities giving out gifts, but the other side...the family side needs to be seen as well. So while you may be like me right now, sappy and emotional over the not-so-great part of your holiday...remember there are other families in the same brand of shoes, just a different model too. They feel your emotions as well...but if they can still have hope, then so can you.