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.
AT THE
HOSPITAL:
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.
AT HOME:
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!
FROM ANYWHERE:
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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