stop the world — i wanna get off!

okay, well, maybe for just a pause?

we all have busy lives, with highs and lows.

from no kids to 11 kids, to grown up kids, to teeny-tiny baby kids — its hectic, it’s crazy and we love it. (for the most part)

but with M’s added health stresses and her intense maintenance routine that is required to help her stay healthy, it’s become a larger juggling act that i just can’t seem to master.
i drop a ball and pick it up, but all the while i’ve dropped another one and another and another.

rinse, repeat.


we got some disturbing news regarding her latest x-ray.

she’s showing progression of the disease. her airways in her lungs are becoming somewhat thicker with mucus.

see, all of our bodies produce mucus, it’s a good thing, but her body produces too much so then it’s difficult for her to remove it; in turn, all of this extra mucus in her lungs becomes a breeding ground for bacteria; hence the many different nebulized medicines and her use of the vest. (this compresses and shakes her to loosen up the mucus.)

her digestive system, primarily the pancreas, also gets clogged with mucus so she must swallow pills before she eats to help her body digest food.

this is why her airway clearance, or as we like to call it, “shakey-shake” is so incredibly important.

this is why we get so upset when she fights us on her treatments.

needless to say, C and i were devastated.
feelings of helplessness sank down deep into our hearts, and our stomachs were sick with angst.

we have this beautiful bright little child but yet there is this silent disease taking over from the inside.


a while back i had written about a program called Casey Cares which helps families with medically fragile children and in our case, children with critical and/or life threatening diseases.
it took us months to fill out the paperwork because we didn’t want to face the reality that she is considered eligible, but when we finally did, we received a wonderful gift: tickets for our whole family to enjoy the day and meals at Hershey Park.

we were ecstatic. little C’s birthday was coming up, what better way to reward him for being an integral part to M’s treatments?? he urges us to do them, he helps with connecting the tubing, the hoses and turning on entertainment, of course.

this is why you donate.

i promise people are grateful for others’ generosity, as we are.

thank you Casey Cares for giving our family a pause from our everyday reality.

thank you for letting me stop the world, my world, even if it was for a day.

rewards — part one

most days i wonder if i’m really cut out for motherhood…

’cause it’s hard.

and anyone who tells you it isn’t hard, is totally lying.

but the rewards of parenting are priceless, and they make up for those awful moments of intense anger and extreme frustration, combined with overwhelming chaos.

there are moments when your son brings you a perfectly picked, carefully selected handful of sweaty dandelions, and your heart just sings.

or when a butterfly dances above your daughters head full of curls and she giggles in the utmost delight — it’s pure bliss.

and when your little boy cups his baby sister’s face in between his hands to explain to her the importance of being safe, you are rewarded with the confidence that you’ve guided them into being strong, independent empathetic little know-ers.

you are rewarded that you’re doing it right.

but then life happens and you forget about those special moments and you lose your temper and yell, or get sad over a silly argument with a loved one and cry, and it takes a chubby hand to caress your check and say, “don’t be sad mommy, i’m here for you” to bring you right back.

but what about the rewards for a parent of a special medical needs child?

 


 

we spent the month of april watching M get sicker and sicker. her appetite lessened and her usual perky ways became more irksome and spiritless. her persistent cough quickly turned deep, rattling, and ominous.

when she’s not sick, she needs to do her airway clearance treatments twice a day — each time taking about 30 minutes. that’s not including the cleaning and sterilization of the nebulizer cups and having a power struggle with a 2 year old.

at this point, now that she had a cold, these treatments were increased to four times a day.

darn near impossible.

have you ever tried putting a straight jacket on a 2 year old?

putting the vest on her is exactly like this. and she must keep it on and have it shake her with compression for 20 minutes.

it was all we could do to barely get in two a day…

i felt like i was a complete loser as a mother. failing my daughter what her little body desperately needed. i tried so hard to show i had it all together — working crazy hours, taking care of the kids, the house, my husband, myself…i fell short everywhere.  and all i could see was everything that i did wrong.

a wise aquintence said it’s easy to see what you’ve failed at in the day so to change the view. focus on what you have achieved.

so this was my driving force to keep going. it became my mantra.

but then she spiked a fever.

i woke up on a thursday morning to a phone call from her doctor.

“i think we need to take a step back here and re-evaluate M’s sickness and get started on IV antibiotics and vigorous airway clearance right away.”

“okay,” i respond, “how long do the IV antibiotics take? a few hours?”

oh, momma.

“no, this is a cystic fibrosis exacerbation, so she would most likely need to be in there for 10-14 days.  come in as soon as you can.

oooof!

it was as if he punched me in the stomach so hard that i couldn’t breathe. i lost all ability to make any words for a response to him

this moment ranks right up there with diagnosis day.

more intense, actually.

and i never thought that could be possible.

holi-daze

it’s the most wonderful time of the year!

it’s magical.

the lights. the music. the wonder.

…some say, anyway.

i’ve never done exceptionally well this time of year, for many reasons.

one: i am a fantastic procrastinator, so there goes having anything actually completed so i may enjoy the time.

two, i want to do it all and make everyone happy, but, see above ^^^

thus, i spin and spin not making any sense of progress.

plus when your family lives in all sorts of places, the dinner table gets smaller, not larger.

though being surrounded by many people isn’t the cure for loneliness, either…

don’t let me fool you, if you see me on facebook, or at wegman’s chatting over the bananas, i might seem fine and dandy. but it’s easy to play that role.

honestly, i’ve always been pretty happy, that being nothappy is just weird to me.

i’ve been writing for over a year now, and i thought that by doing so, it would help me with the isolation a caregiver feels. all that a mother feels.

but it hasn’t.

i thought by writing, i would have a better handle on my emotions.

these days, i am so angry with the day to day necessities of this stupid disease, i find myself loathing the very things that make her well.

for instance, between dropping little c off at school and senior c at work, it would have been great to grab a coffee and stop somewhere to let M play around.

but, instead, i needed to circle the airport, i mean the hospital’s overflowing parking garage to fight a losing battle for one measly space.

instead, i parked farther away, and then started the 10 minute (yes) debate in my brain on which would be best for M:
do we walk bundled up, outside in the cold air or in the warm but germ-y hospital.

i chose the former.

this was all for a trip to the hospital pharmacy since wegman’s doesn’t carry the latest prescription ordered by her team.

they added another medicine to our regimen. another 15 precious minutes.

i am angry at that!!
any time we have as a family, any time i have as a momma, most is spent doing something to take care of this disease.

i am angry at that.

as someone close to me has said a couple of times, “it’s just a way of life for you now.”

yes, indeed, so very true. but i’m not able to grasp onto that statement, yet, and say, “yes, let’s move on. okay! boot straps up, heave ho. emotions: off! quit yer b*tchin’, bek!”

nope. not there…
i am quite the contrary.

i am angry that my 20 month old baby girl knows to say “enzymes!” before she wants to eat.

i am angry that she knows how to swallow them.
amazed at the same time.
but angry she has been put into this situation at all and will be for the rest of her life.

i am angry our cf clinic knows us by our voices when we call.

i am angry little M still fights me something fierce doing her vest and nebs daily.

i am angry that once she starts a cold the incessant fears and worries creep sink deep into my heart and brain.

i am angry that her little dry cough she has had the last week has made her throw up more times than it should, due to her gagging on the extra mucous that’s in her little body.

i am angry that i need to be mindful we are not excluding little C from anything, as M’s ‘way of life’ progresses.

i am angry that even though shes doing really well, if i say i am angry to others, sometimes i am met with responses of “look on the bright side” or “there are kids much worse!”

i am angry this has made me so selfish.

but isn’t any mother when it comes to her child’s health?

i don’t want this for her. any of it.


but, i will put on lip gloss and fluff my curly hair.
i will go through the motions required for this time of year, because i have children.
and they need me.
happy.
and hopefully i will actually feel the magic.