“it’s good for you”

these four words came from my 4-year-old. 

they have been life changing. basic words, but such an impact.

as i have previous journaled, it really hasn’t been easy — the daily struggle to get in her treatments but then there are also the multiple doctor appointments, the pharmacy refills, the phone calls for overdue medical bills, the insurance struggles, dealing with the nuances of the specialty medicine that only can be delivered via UPS since it needs refrigeration and the clearance if you won’t be home to accept the delivery, it seems the list for these CF things are growing. and of course there are the daily struggles tasks of life, as well.

one day, i was reading an article about how children feel, and the potential for them to feel left out, whose other sibling have special needs. 

i asked little c how he feels when we must do baby girl’s vest and other treatments each day. and since there is a lot of crying, from her and me, i figured he would say “sad” or even “angry” because he can’t hear the tv (the vest is so loud,) but he responded,

“i feel happy!” 

i was really surprised at him feeling happy, i was almost upset. was he happy because it’s torturous for his little sister? torturous for me??

i took a deep breath, apprehensive of his response, and i asked him why he felt happiness when we do her vest. his reply:


 

 

 

 

“because it’s good for her.”

 


and just like that, a shift happened and things started to change at vest time.
it has gotten a little less traumatic. we even sing a silly song.
we have our routine in the evening,

dinner, bath and “shakey-shake.”

and every time now, you hear one or all of us say, more than once, 

“it’s good for you.”

and she calms down. 

even if it’s just a bit, it is so helpful.

she understands. 

she knows.

the vest.

i’ve written before how this whole cf thing has been coming in layers for us.

we are okay for the most part, and then something happens.

we read an article on facts of the disease.

baby girl gets sick.

or i see a parent post the news of her child hospitalized, or worse…

 

i truly thought we were done with the realizations, though.

we hit another bump.

hurdle?

mountain.

and things have been so great, too!! i am never in a million years discounting that.

but even when things are going well, you need to be leveled out, i gather.

i have been working a lot. praise! the hours are crazie and it throws off the whole rhythm of the family — i came home two nights in a row and was greeted by baby girl at 5:30am. C had been up with her for hours during the night and then he would be off to work the next morning. yikes. the amazing part was when he said it was his honor. (i’m a lucky girl)

i haven’t been sleeping much, either, so that takes a toll on all of us because all of momma’s patience goes out the door and if anyone eats too loudly, all y’all gonna hear about it! #monstermommy

but we keep on, cause that’s what ya do.

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dear momma about to give birth,

right now, your prenatal yoga classes and learning how to breathe are important.

spending time with yourself, husband, girlfriends and other child(ren) is important.

choosing the exact shades of pink and gray for the nursery is important.

and, i’m sure, planning your ideal birthing experience is on the top of your mind. it is, after all, your first, second, or fifth child.

it could be natural, your first c-section, a repeat section or *fingers crossed* a v-bac…

you are focusing on the dilemmas: an epidural or without drugs…breastfeeding or formula, or a little bit of both…

everyone smiles at your swollen belly and asks if you want a boy or a girl…and you might have your preference, but the ultimate desire, whether spoken or not, is healthy.

“ten fingers, ten toes!” is what every mama and dadda wants to hear once the newest little makes her appearance.

if this is your first baby, you are focusing on learning how to be a new parent and taking care of this human who is totally relying on YOU —  no turning back now!

if this baby is your second or fifth, you might be concerned  about how you will manage introducing another person into the household, and are your other child(ren) really as psychotic as they are behaving? (most likely not, it’s totally a phase…)

you’ll have a hard adjustment when your spouse goes back to work.

it will be scary and overwhelming. and if the only thing you’ve done for the day is feed them and change all of your clothes, that will be an accomplishment… (so be nice to yourself!)

but in most cases, you are not worried about that phone call you’ll receive from the doctor stating that your baby has some rare genetic disease you’ve never heard of.

you aren’t planning on:

…the countless testings, and then the heart-wrenching screams during blood work with your newborn.

…the extra hours spent at appointments with specialists, and trading your light reading for learning about this disease that is challenging your precious baby and the rest of you, as a family.

…the multiple hours spent on treatments to help your little one thrive, get by, and make it through the winter months so she won’t become ill. but even with the extra help, she still keeps getting sick…

now your worries are heightened, your nerves are on edge, and it’s round-the-clock nursing, in hopes that your child won’t end up hospitalized due to her breathing that is short and crackling from being sick…

“every baby gets sick,” you hear, but what they don’t know is that not every baby can afford to get sick.

                                                                         ~~~~~~~~

i write this letter to myself one year ago, as now i hear the rhythmic sounds of my husband thumping on our baby girl, performing chest physical therapy. she cries for a few minutes, but then settles into the percussion. it’s as if she knows it will help her.

i write this letter, as my son is singing along with daniel tiger about greeting the new baby — the same song we all sang a year ago, when my only worries were in hopes of a natural, v-bac birth, easy breastfeeding, beautiful nursery colors and our not all being crazy….

p.s those breathing techniques you learned in yoga are really good to do in between your anger and your tears.

more doubt, less jaunt.

egads, it’s been quite some time since i wrote.

not for lack of trying…

there have been moments of highs and lows.

for the highs: my aspirations of becoming a model have come to life.

like for reals.

i was officially welcomed to the qvc family.

i am so happy and grateful — as i have been for my other modeling jobs but nothing has ever been this steady.

all of my determination, persistence and dusting off my knees from the countless “no’s” and letdowns, have been dignified.

1 “good ol’ american stick-to-it-ness”

lows: she got sick again.

actually, we all did, but the craigs and i don’t have the added component of this chronic, life shortening disease.

hence my blog.

and trust me, each sickness, i actually have become less of a frantic, frazzled mess — but each sickness she seems to get hit harder.

should it not be the other way? she’s getting older, which means stronger…??

when someone with cf becomes ill, it’s like, if i may quote one of my cf momma friends, “lock down mode.” you stay home, do extra treatments and do your best to keep any other sicknesses from coming in. you spend so much of your time with treatments, administering medicines and heading into the doctors and pharmacies…

we went into the pulmonologist three times in a week.

and the sounds of her tiny chest crackling with each breath — it was like hearing oil hit a hot pan in slow motion. i let her lie on me while i just stared and listened to her.

i had to be my own best friend in my head and remind myself that i am doing everything that can be done to help her get through this.

i had not a second to feel helpless and definitely not hopeless.

i had to do this all with a smile, as i have a beautiful 4 year old looking to me. asking me questions about his sister. i want to be somewhat honest with him, yet, i need to keep my attentions to my babies balanced.

what a difficult feat!

again, the bff in my head says i can only do as much as i can. i am doing my absolute best to be mindful of his feelings.

it must not be easy being a sibling to a chronically ill sister.

the one pulm visit resulted in chest x-rays and a throat and nasal swab.

maybe if i had ever had an x-ray, besides my teeth, this might have been somewhat easier, but i had no idea what was going on.

maybe if the radiology department wasn’t adjacent to the critical care unit, where just 4 years prior, my husband spent time recovering from a horrible car accident which resulted in neck surgery from a broken neck and numerous other injuries, i wouldn’t have had a flood of memories at this exact time.

and maybe if my baby, being strapped into a high chair with her arms tied above her head, wasn’t crying and confused, i would have been able to have handled this all better.

maybe.

i shudder still thinking about that day.

what doesn’t break you makes you stronger?

the beauty with technology, i was able to speak with the pulmonologist and view the x-rays right away.

i just remember seeing more white in her lungs where i should not have.

the doctor personally called us the next morning (nope, not a good sign) with the results from her throat and nasal cultures…not the best news, but a different antibiotic was prescribed.

we met him today to see how she has progressed.

her weight is back up and her lungs sounded good. she’s doing so well. we discussed her results and she had another throat swab done. yay. 

we also decided, it would do her best for us to start CPT with her each day as a preventive measure.

CPT is Chest Physical Therapy.

this manual percussive therapy helps break up mucous in the lungs.

we go back to learn this in the next week.

i’m relieved to know we will be doing something else that can help her but i’m also a little bit sad, too…

.



1 my husband

perspective-ness

after i wrote my last post and saw the words of encouragement from my fellow cf mommas.

i felt humbled. 

sentiments like, 

“you’ve got this!” and “you’re awesome!'”

from the same women, who administer numerous treatments a day for each of their multiple children living with cf — 30 min of the vest (which is a device that literally shakes the person with cf and breaks up the thick mucous) at least twice a day and then nebulizers a couple of times a day — both of these are increased more when there is sickness.

all of this in addition to the enzymes and acid reflux meds — yeah, i didn’t mention how repeatedly using enzymes causes acid reflux. 

oh, and did i ever say where these enzymes are derived from?

pig pancreas. 

yep. 

science is amazing. 

…and some would say cruel. 

i wonder how many vegans who have cf are out there?  

 *~focus bekah~*

here, they’re telling me how awesome am, whilst i’m administering a few breathing treatments and enzymes, meanwhile they are in the trenches. 

but then i see my poor sweet baby girl arch her back in pain when her belly hurts. 

her little tummy swell and bulge when she becomes constipated. 

no one wants her precious baby to hurt.

no one wants to worry for her child’s future, knowing there is a dis-ease in her little one’s body…how it could all change.

these are our daily challenges. 

and it sucks. 

this disease really messes with you. 

so, to my cf momma friends, you are amazing. 

a 5¢ tour of living with cf

only 30,000 people in the US have cystic fibrosis.


that’s like 60 cases per state. 

super rare.


this fact stopped my husband in his tracks. 

ya know, the same husband who i have proclaimed is always the positive one. 

yeah, that guy.


we are still dealing with the reality of this disease. 


…and the severity of it. 


it has certainly been coming in layers for us.


what stopped me in my tacks the other day was hearing how progressive of a disease it is. 


                                                                         *


the other night, someone asked me, “so, tell me exactly how i am to pray for you and your family?”

i was confused, what did she mean?


she was referring to the cf and everything that surrounds it.

i fought back some tears of gratitude, as well as sadness… a question that some of the closest people haven’t asked, yet here was this person, reaching out.

then i remembered a fellow “cf mama” advised me that most people just don’t know what to say, so don’t hold it against the ones who don’t ask or say anything, but to confide honestly with the ones that do.


i proceeded to go into my 30-second-in-a-nut-shell description


“well you certainly don’t make it seem as big of deal as it is! gosh!”


                                                                         *


people with CF have more mucus buildup in their membranes — their lungs, their pancreas and other organs.

in their lungs, this extra mucous traps and harbors bacteria, which, when around someone who is sick is very detrimental to someone with cf. 

if you ever wonder why a cf parent or person is being uptight about getting sick, this is why. two people with cf are not to be in the same room without each wearing a mask, as they could pass bacteria to one another and they could become very ill. 

chronic infections in someone with cf damage the lungs and eventually lead to respiratory failure. 


in the pancreas, this extra mucous hinders nutrient absorption and affects the gastrointestinal tract.  every time baby girl eats or drinks, which includes nursing, she needs to take enzymes. 

the dosage and amount of pills she takes will increase as she grows. if her dosage is too high, constipation is common and bowel blockages are a definite concern. 

watching baby girl’s stool has become the new normal around here: 

“it was the perfect little shape and consistency!” 

“hmm a little less formed and oily…”

if enzymes are not administered before she eats, she could get a belly ache. 

right now, the median life span for someone with cf is approximately 40 years old — a vast increase from when it used to be in the early ages to teens. 

in my online cf support groups, there are still young children and adults who have it severely and who are passing from this disease and it hits me. 

every. 

time. 

we are BLESSED to not yet have any lung involvement with baby girl, and BLESSED that her involvement with this disease is considered mild by the medical professionals. 

we hope and pray that this will always be the case. 

if you pray, we would love your prayers for her, too.