Sometimes hospital stays don't go as we plan, and our kid's stay is extended. Other times, the complexity of their surgery requires longer stays. Either way, it is hard on a momma's heart and a challenge for the whole family. Whitney Fowler knows the challenge well. From September 2013 to January 2014, just after bringing her home from China, she endured a 126 day, multiple surgery hospital stay with her medically fragile daughter, Lizzy.
Whitney is on the other side of that gut-wrenching experience now, but is still knee deep in the waters of medical parenting. Her days are filled with therapies, specialist appointments and extensive home health care. Somehow still, she longs to serve and desires to connect with, encourage and advise others who parent complex kids. I am grateful for her willingness to share her story and extended hospital stay tips.
.........................................................................................
The homework is done. Under the advice of the best
specialists, and after much prayer, you’ve decided on the best plan of action
for your child. The time has come, and
you prepare for your 1-2 week recovery time in the hospital. You even allow for an additional week
inpatient, because you’re a reasonable kinda' girl. You are prepared for whatever is thrown at
you. You pack your emergency chocolate
and bring your comfort items from home.
You even thought to take along flip flops for the community parent
shower. BRING IT ON! You are ready to conquer this and
get back home!
And then your child becomes that 1-5% of the population who
proves the textbooks wrong. Everything
you acknowledged on the consent form you think “will never happen to us” starts
happening. Nothing seems to go according
to plan.
Days turn to weeks, weeks turn
to months…
You begin to question if you did the right thing for your baby in
the first place. Should you have gone
somewhere else? Should you have chosen a
different procedure? Should you have
just left things alone? Would things
ever be normal? Could I have done
something different?
Doubt creeps in and
we start “shoulda, coulda, woulda-ing” ourselves into a spiritual downfall. Surely God sees you? Surely He will fix things and we’ll walk out
those doors next week? Surely???
The chocolate has run out.
You start heading to the vending machines and treating yourself to
dessert in the cafeteria. You’re in survival mode after all. Don’t do that. You will eventually get out of there and
those eating habits are really hard to break while in the trenches of figuring
out your new life at home.
You start
shutting the curtain or door to the room because you just want to be alone in
your suffering. Why bring anyone else
down? Don’t do that. Again, it’s really hard to break that
seclusion habit once home.
You stretch
yourself thin trying to do everything on your own. You cannot leave your child because they’re
still learning how to trust you. You
wear yourself out and drain your marriage dry.
Don’t do that either. People
want to help and your spouse is hurting just as much as you are. If you open yourself to the idea, you will see
there are family, friends, nurses, child life specialists, therapists, and/or
doctors willing to go the extra mile for you.
It takes a while, but your little one will develop
relationships with certain caretakers and you NEED to take advantage of this. For your own good and ultimately the good of
your child. If nothing else, step
outside for a daily walk (comfort food + comfy pants + no exercise = very bad). Wait till night shift once they’ve fallen
asleep and go catch a movie or dinner. You’ll
be up anyway and you’ve already watched all the recommended movies on
Netflix. It’s an exercise in trust, but
it is one you need to get used to.
And
as far as help at home, let people help clean, cook, and have fun with your
other kiddos. Don’t let pride (yes
pride) keep you from allowing others to bless you and your family. If you’re close enough, have your children
visit as much as possible and let them be proactive in their sibling’s care.
The length of time spent in the hospital doesn’t really
matter. I discovered on numerous occasions that day six can be way worse than
day 32. Or day 87 might not hold a candle to day 113. There will be days you lose your patience and
throw a fit worthy of a 2 year old without a nap. That’s when you need to put a blanket over
your head and try to do just that, nap! Most everyone there understands you are a broken
and exhausted momma, but a humble apology goes a long way.
There will be days when you feel like you can conquer
the world. You might even find yourself enjoying decorating the hospital room
for Christmas.
There also comes a point when
the financial burden of traveling and feeding yourself, in addition to your regular daily living
costs, becomes a burden. Do not feel ashamed to ask for free parking, meal
vouchers, or parent trays. Hospitals have programs for this sort of situation
and it is there for the asking.
And
there will be days when you need to advocate for your child and ask everyone to
just leave her alone for the day. Don’t
ever forget you are their voice.
In your darkest moments, you might feel so far from the Lord
it scares you. But then you are reminded
that He has never left. Each new day is a
miracle and you learn to rejoice in the small victories. (Yay the culture came
back negative, or yay it came back positive and we finally have an answer to
this fever. Yay she pooped today, or yay
he finally stopped pooping today. Yay
the cath showed improvement, or it didn’t, but yay we finally have a game plan on
how to fix things.)
There is a greater plan behind all of it, and you finally
begin to understand just how out of control of this life you actually are. Believe it or not, you become ok with this and
find relinquishing the control (you never actually had) is liberating. Total dependence on Him. Total. When you are out of words and strength and
hope, call out to Him. Just say His
name. That’s all it takes. He will not leave you or forsake you.
It does not seem like it now, but you will get through
this. You won’t be the same, and that’s
ok. You will be the refined you. Don’t be alarmed if you get home and you actually
miss the hospital. Kind of like Stockholm
syndrome, if you will. You’ve gotten
used to the routine, the panic, the noises, and even the food. I know it sounds crazy, but there’s something
comforting in knowing it’s not all on your shoulders. You will get over this feeling pretty quick, but
you will likely have some post traumatic stress issues. I had a hard time recognizing my feelings as
such, but it’s exactly what it is. There is no unseeing the terrible things
that go on in an ICU, whether it’s your child or not. When you live in the hospital long enough,
you will eventually witness/experience the rawest form of pain a parent can endure
as someone’s beautiful son or daughter passes away. And there is nothing more traumatic than
seeing your child crash time and time again and being completely unable to
help.
To see your baby wheeled to the
operating room and being utterly helpless and unsure if they will make it “this
time” is not something you “just get over”. Please talk to someone about it, you are not alone! As time passes the hurt dulls and you will begin to live fully again.
.........................................................................................
This is post 9 in "The Medical Momma Toolkit: A Tips, Tricks and Encouragement Series".
No comments:
Post a Comment