May 27, 2017

How the Impossible . . . Becomes Possible

Somehow, a single day can seem like a lifetime when a child is in the hospital.  When one day of admission turns into several days, and then into several weeks, it’s more like an eternity.  What day is it again?  Time seems to stop and the tears seem to never stop.  It is utterly exhausting, both physically and emotionally. 

After many years of caring for medically-fragile children, children who spend thousands upon thousands of hours in the hospital, you would think I would get used to it.  Nope!  It never gets easier.  There are days – and usually interminable nights – when I cry into the darkness, I can’t do this!  This is impossible! 

Indeed, it is impossible, at least for one person.  There is no way I could continue caring for these precious children with their complicated medical needs if I had to do it alone.  I depend on my community, my “village,” those invaluable friends and neighbors and church family who are ready and willing to step in and offer support when things invariably get overwhelming and difficult.

During these seasons of long hospitalizations, the most common offer I am likely to hear is, If you need anything, please let me know.  I love the openness of that!  The generosity and kind-hearted intent.  The love that those words communicate! 

But honestly, when I am focused on the child in front of me - on the medical complications and the doctor’s prognosis and the long-term implications of this current health concern – and when I am completely drowning trying to balance the time at the hospital with the ongoing responsibilities at home, it becomes almost impossible to articulate what I need.  I search my over-burdened brains for the right words to ask, and come up empty.  All I can think to cry is, Help me!

What I need more than anything, what has encouraged me the most during these stressful days and weeks in the hospital, is a specific offer of help.  When someone is willing to take the initiative, and give or serve or love from the abundance of their heart.

I am so grateful and humbled to be the recipient of so much love!  I can barely begin to count the ways that thoughtfulness has inspired me to not give up on these frail children.  Ways that generosity has encouraged me to press on with this hard calling.  Ways that kindness has made the impossible . . . become possible.

1.            They donate.  The cost of gas, hospital parking, and cafeteria meals can quickly add up.  Not to mention hospital bills or insurance co-pays. Every little bit of financial assistance helps.  Some hospitals sell discounted parking passes at their gift shop or transportation office, which can also be very helpful for extended stays.
2.            They nourish.  The cafeteria has lots of options like hamburgers, pizza, fried chicken, and donuts – not necessarily an abundance of nutrition, which is ironic for a hospital.  So healthful snacks are especially welcome.  At my little one's recent stay in the hospital, a friend gave me a baggie of cut veggies; the fresh cucumbers, crisp and green and perfectly sliced were so beautiful that I almost cried.  Another friend brought me a container of homemade lentil soup; my fatigued body craved it so much that I actually licked the bowl to get every drop.  Chocolate chip cookies may be tempting, but what I need most during these seasons is sustenance.  As the saying goes, It’s good to treat yourself, but it’s even better to treat yourself well.
3.            They give to me.  When the hospitalization is sudden and unexpected, I don’t always have time to pack or think through what I might need.  These items in a care package are perfect . . .
A notebook or journal and pen for taking notes of conversations with medical professionals and medication dosages, and for writing down questions for the next time doctors make their rounds or the nurse comes in.  There are so many different people involved, and information changes so frequently, that it’s impossible to remember everything.  Having a place to write things down ensures that no detail of my child’s care is overlooked.
A refillable water bottle to prevent dehydration.  There is usually a water fountain down the hall, but it’s much easier and more convenient to have water within reach.
Soap, lotion, shampoo, chap stick and other toiletries.  The hospital may provide little sample size items, but hypoallergenic, fresh-smelling items are infinitely more pleasant in the harsh, sterile hospital environment.
Tissues.  Have I mentioned that the tears never seem to stop?  Recently when my foster child was in the hospital, I was the picture of courage and strength.  But several weeks into his illness, I received a call from the library, letting me know that a book was overdue, I suddenly burst into tears.  Perhaps I wasn’t as courageous and strong as I had imagined.  I was so thankful to have tissues nearby.
Mints or gum.  Phlebotomists and nursing assistants start walking through the doors before the sun comes up, and usually before I have a chance to brush my teeth.  I (and they) are thankful when I have a mint or piece of gum to instantly freshen my breath.
Non-skid socks.  When sleeping at my little one's bedside, I want to be comfortable, but there are many times when I need to attend to him quickly during the night.  Thick, comfortable, non-skid socks are just what I need.
4.            They give to my child.  I can describe how difficult it is when child is in the hospital, but just imagine how difficult it is for my child!  Any gifts that can help comfort him and make the stay more tolerable are wonderfully welcomed.
Toys and games.  Anything that is age-appropriate, that will help pass the endless hours in bed.  Hand-held games with not a lot of pieces are ideal.
A soft blanket or teddy bear, something to provide extra comfort during painful procedures, and that will help ease the anxiety of sleeping in a strange place.
DVD’s.  Kids are in the hospital for a reason, and they spend days, sometimes weeks, in bed, with very little strength or stamina, and usually hooked up to monitors and tubes and wires.  Even playing with toys can zap their energy.  Kid-friendly movies can help alleviate the boredom that comes with confinement.
Books.  Illnesses don’t always come during summer break, and chances are, a school-age child is missing school.  Books help him keep those little brain cells alive and active!  Even if he is too sick or young to read by himself, I can read to him, as can visitors and volunteers.
Balloons.  A fun, visible way to bring cheer to that sterile white room!
5.            They remember.  When I send updates or prayer requests, my friends remember the details.  They write down the dates of upcoming tests or procedures, and remember to ask how it went.  They make a mental note of the diagnoses and specific concerns.   They consciously, intentionally try to understand the challenges we are facing.
6.            They visit.  Nothing says I care quite like personal, face-to-face interaction.  I can send updates and pictures, but when they enter my world, somehow the burdens are shared and lightened.  When one close friend came to visit my little guy in the hospital, she sat down on the bed with him to watch movies, which gave me an opportunity to take a walk outside, getting some much-needed breaths of fresh air and sunshine on my face.  It was exactly what I needed.
When the pastor at our church visited the hospital – twice! -  he arrived with hope and a boost to my faith.  I may not remember one word he said, but I will never forget his presence.  When he bowed his head and prayed over my child, it communicated in so many ways that we had not been forgotten.
Note here:  I love visits only when the visitors are in perfect health. When my friend, who had planned to come to the hospital, texted me that morning to let me know she wouldn’t be able to come because she wasn’t feeling too well, I was so grateful!  Her little sniffles or sore throat that are a minor inconvenience to her could have been detrimental, or even fatal, to my medically-fragile child!
7.            They energize me.  Frankly, hospital coffee isn’t that great.  The coffee from the pot on the pediatrics floor is bitter and flavorless (you know it’s been there too long when you add creamer and it doesn’t lighten).  But unfortunately, the coffee from the specialty shop downstairs is outrageously expensive.  Plus, the moment I leave my child’s room will invariably be the exact moment the doctors come for their rounds or the technician comes to take him for a scan in another part of hospital.  I can’t risk missing it!  When my friends show up at the door bringing me a fresh cup of coffee in the morning, it is a vision of loveliness.
8.            They listen!  They validate the seriousness of the situation and my fears.  I don’t necessarily need unsolicited advice or personal stories of tragedies.  No parent wants to hear, You know, a chiropractor should be able to help your child recover from that traumatic brain injury.  Or worse, A child in my daughter’s third grade class had that same diagnosis, and she died six months later.  On the other hand, when they have a first-hand recommendation of excellent specialists or physical therapists, or if their own child has had a successful journey through this medical minefield, I love it when they share!  It’s wonderful to know I am not alone!  More than anything, though, I really love it when they listen, even if I repeat the same thoughts and concerns and stories.  Talking helps me process the confusing and traumatic things that are happening to my child, trying to make sense of a situation that may not make sense.

9.            They provide.  Frozen or ready-to-cook meals are especially good, since my schedule and my family’s schedule can be so unpredictable. A few friends are quick to use their organizational skills, offering to coordinate an online meal schedule.  So, so helpful!
When they come to drop off a meal, sometimes they might need to assess the situation at home:  would it be less stressful for the family if they just dropped it off quickly and then left with as little intrusion as possible?  Or do they need to stay and listen?
10.        They babysit.  Finding reliable child care for the siblings at home can sometimes add to this very stressful time when I am trying to focus on my child at the hospital.  I’m so thankful for my friends who offer to babysit – sometimes multiple times during long hospital stays.  It’s an ongoing, daily need. 
Even if the siblings don’t need a babysitter, it’s great when someone offers to do something fun with them.  Unfortunately, the siblings at home often get overlooked and may feel stuck at home, and they will be missing their mom.  It is such a treat for them to visit a local children’s museum, go to the playground or out for ice cream, or play with other children for an afternoon.
11.        They drive.  While one child is in the hospital, my other children still have school, sports, music lessons, and youth group activities at church.  Offers to help with transportation are such a relief.
12.        They serve inside.  With so much going on, and with me being pulled in so many different directions, the first thing to be neglected to the bottom of the to-do list is the house work.  Individuals, small groups, and ladies Bible studies have all helped throughout the years in this much-needed area.  One friend texts me periodically and asks, Do you need me to mop the kitchen or clean the bathrooms?  Another friend hired a one-time cleaning service after a particularly long hospitalization.  One time I came home from the hospital for a quick shower and nap; imagine my surprise to find one of our pastor’s wives vacuuming my house!  Such a sweet, selfless act of service!
13.        They serve outside.  My husband is often doing double and triple duty, caring for the siblings at home, supporting me and our child at the hospital, and on top of everything else, somehow holding down a full-time job.  He so appreciates offers to help with yard work, watering the plants, weeding the garden, repairing things that may need to be fixed.  He most likely won’t ask for help, so it’s great when friends offer!
14.        They shop.  Just because a child is in the hospital, daily needs continue.  Toilet paper still runs out.  Milk still goes sour.  The baby still uses diapers.  And when it comes time for the child to be discharged from the hospital, there are additional trips to the pharmacy, as well as specialty products that might be needed - like waterproof pads for the bed or oversize t-shirts to accommodate tubes or soft foods during recovery from surgery.  One time I needed a bean bag to help position a child who came home from the hospital in a body cast.  Sometimes a child needs warm pajamas with no zippers because of a feeding tube, or winter shirts without high necklines because of a trach.  Over the years, I have been so thankful for my friends who have the Gift of Shopping!
15.        They acknowledge.  In our family, one of my teenage daughters has recently been a huge support, volunteering for most of the childcare duties and keeping things running smoothly at home while I am at the hospital with a little one.  These seasons of hospitalizations are every bit as taxing for her as they are for me and my husband.  A few months ago during a particularly difficult time of medical care, one dear friend specifically wrote my daughter a thank you note and bought her a pint of her favorite ice cream.  It was such a sweet (literally!) acknowledgement of the sacrificial giving of my daughter’s time and energy.
16.        They pet sit.  It is very difficult to take time to walk the dogs and give them the attention they need when I am gone for days or even weeks at a time.  My friend’s offer to temporarily care for our dog has been such a God-send!

17.        They encourage.  Even if they live far away, work full time, are busy caring for their own foster children, or unable to be present, there are still many ways our friends communicate love:  words of encouragement, a quote, a Bible verse, or well-wishes.  When I am feeling alone and exhausted, or during the middle of an endless night in a child’s hospital room when the rest of the world is asleep, those texts, e-mails, messages on social media and actual cards and notes are my lifeline to the land of the living.
18.        They communicate.  If I send an email or update or text, they let me know they received it.  They volunteer to pass along e-mails and prayer requests.  They offer to set up an online care site to make it easier to update friends and relatives without missing anyone.
19.        They connect.  We love FaceTime or Skype calls or video chats on social media.  Most recently, my foster child was in the hospital for several weeks in very critical condition.  Even as he started to recover, he was mostly unresponsive.  But when I showed him a video of our family friends saying hello to him and expressing their love, it prompted the first smile we had seen in weeks!  That video, I believe, was one of the turning points in his recovery!
20.        They pray!  More than anything, I so appreciate prayers for my child’s restoration to health, as well as for my strength and courage during these dark days.  And I love when my friends let me know that they are praying!  Especially when they are specific.  When the heart is discouraged and weary, hearing, A quick note to let you know that I am praying that . . . are the very words that bring hope and strength and courage.

I am eternally grateful for the people who have surrounded me and my family with their love and support during our numerous seasons of hospitalizations.  Every act of kindness, every word of encouragement, every small gift has helped sustain me during the darkest of days.  Has inspired me to keep saying yes to the next foster child in need.  Has enabled me to persevere in this hard calling.  Their love and support has made the impossible . . . become possible.

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