I have been living in denial, in 6 short days Ezzy will be leaving us and embarking on a new adventure…school. To help ease my mind, I decided to write a letter to her new teacher along with printing some pics of her. I have NO idea what this new chapter will mean for Ezzy, for our family, for our faith as it is tested. All that I know is that God is calling us, well, mainly me, to a really big test, a test that requires complete and utter faith and trust in him as we accept the unknown, even if we fight it the entire way. So as I am going to him, I believe he wants me to let the teacher know a little bit about her before her first day, as well as know a little about the struggle her parents are going through. I pray the letter is well received and that Ezrah isn’t seen as a burden, but instead a blessing. Because lets face it, how can you not evaluate your own personal life, witness the unexplained, or better yet smile as you spend time in her presence, Ezrah is different in so many ways. I pray that her presence in the classroom will bring joy to her new teacher and classmates.

Dear Ms. XXXX,

I am blessed, scared, ready, and utterly torn about our Ezrah attending preschool this year. As her enrollment paperwork states, she has Cystic Fibrosis (CF). This fatal lung and digestive disease doesn’t define her as a person, but unfortunately is a massive part of her daily life. I hope to share a little with you about who she is, as I am coming to grips with the fact she will be out of the safe little bubble we created for her. If you set aside the lists of accommodations she will need and look into her big brown eyes and start to get to know her, you will find that she is really good at wedging herself into your heart. She is loved by so many people who have watched her overcome things that most adults would struggle with and still manage to have more determination and tenacity to keep trucking along.

Ezrah’s personality:
-lives in the black and white, the gray is hard to understand, can’t help but think its because of her life in the hospital, constant travel to see specialists, having IV scars on her arms, a big scar across her tummy from emergency life saving surgery at 2 days old, or the fact that many days she has to suck it up and cope with her disease

-incredibly compassionate to those who are different, most likely because she is all to aware that she is different
-craves stability and control, she has meltdowns and can’t transition well, her regimen of therapies, meds, and life with CF has made her live with a list she has to check off each day. She is aware so little of her life lets her have a say, so sometimes she will fight and fight for control

-loves to laugh, ALOT, she doesn’t like to be silly, to stand out more then she does, but will find the humor in most things
-lives to dance and sing, she can memorize a song so fast!

Ezrah’s health:
-she knows the importance of good weight, she asks to eat ALL the time, her disease doesn’t allow her to digest or absorb nutrients like you and me, so she eats and eats, which will be shocking when you see how skinny she is
-because of the digestive disease her normal bowel movements many times look like diarrhea. She is on meds that make her have explosive bowel movements, which has led to embarrassment. If she says she has to go, she means it
-she has a base line cough, but when she gets sick, you will notice her wheeze and hack, its because her lungs are full of thick mucous. It would be similar to you and me breathing through a straw
-when she has to take the dreaded antibiotics and steroids, I watch my sweet little 4 yr old have “roid rage” or worse a decrease in appetite because the meds hurt her tummy
-she gets run down fast, her inability to absorb and utilize “fuel” definitely affects her activity level, if she is fighting a cold, her whole body aches from struggling to breathe normally and because of the antibiotics she is on

I have been encouraged to know parents who have entrusted their little ones with you and have shared that Ezzy couldn’t ask for a better teacher. I am excited to watch her grow and flourish outside our 4 walls, make friends, soak up all the new experiences and live life to the fullest. I know that sick kids come to school, many times very sick kids, unavoidable, but this is the scariest part for us. We were told when she was 3 wks old that we would be lucky to see her make her early 30s, that we would need to strive for optimum health in hopes she could make it to adulthood. We sadly out of fear and grief made her life dependent on the list of things she couldn’t do because of CF and didn’t focus on what she could do.

I worry she won’t advocate for herself, either because she doesn’t want to stand out or because she is finally away from her drill sergeant mom and can’t wait to try things, especially things she knows aren’t good for her.

So as the days are rapidly approaching to her new freedom, I hope that by sharing a little about who she is will help as you do what you love to do and teach little minds. Thank you for taking the time to read this. Thank you for caring for her during the upcoming school year. My husband and I are holding onto the fact that this new chapter in her life is one that she needs and we need to let go and watch her amaze us more then she has in the last 4 yrs.

Any questions or concerns please don’t hesitate to let us know!
richard 254-2535 dickharney@gmail.com
sarah 821-0204 sarahmayharney@gmail.com

Sincerely,
Sarah Harney

We recently went to the beach with some friends to let the kids play and take advantage of the gorgeous weather we have been having. As we were setting up all the things you need when going ANYWHERE with little ones I soon stepped into my now normal rhythm and started to attend to the endless needs a family of 6 has. Hey mom I need…mom help…sarah….waa…mom…sarah…well after that went on for about 20 mins I heard a chuckle taking place behind me. I realized I had been the entertainment of one of the families and couldn’t help but find myself smiling as well.

I know that if I were to flip the coin, I would miss this utter chaos that I call my rhythm, I would actually crave the dynamic hum that my family puts off just living, I would miss that a kiss on the forehead, an encouraging word after life beats up your 6 yr old heart, a need met before mine, or yet another meal created as a baby nurses from my chest, could never be replaced by my occasional “the grass is greener” thoughts that slip in when I haven’t even addressed the basic needs a mother/wife has when caring for 5 other people.

So for amusement for myself, I decided to create a log of a typical 24 hr period for me…

1:08 – wake up to a sweet little baby sucking her thumb looking for momma’s milk

3:24 – wake up to a hungry baby, didn’t I just get back to sleep?

4:50 – arm is asleep, must roll over and pray the sleeping baby in my arms will stay asleep

6:08 – wake up to a baby sucking on my arm, she swears she is hungry, but only wants to eat from one side, how dare I suggest she switch to other side?

6:20 – hear a stampede coming from the girls’ room, so much for sleeping in, oh well, I’ll just close my eyes and wait till they come and find me, they always do…they ALWAYS do

7:30 – baby wakes up, hey, so do I, yay!!!

7:35 – change 2 diapers in a row, apparently the baby prefers clean diapers to poop in

7:50 – unclog the toilette, figured out what the girls were doing at 6:20

8:05 – spend 5 mins bribing the 4 yr old with homemade waffles, blueberries and whipcream IF she promises to NOT throw a fit about therapy…bring IT ON kid, I know that you won’t be able to hold it together, it will be cereal like it is every morning

8:11 – beg for my phone that is being held for ransom by the 2 yr old who is a technology protégée…i needed my phone to be reformatted anyways

8:27 – realize my waffle recipe calls for 1/4 tsp of salt NOT 1 tsp….oh well, at-least the CFer won’t complain

8:34 – inform the 2 yr old for the 5th time if she doesn’t take her diaper off she will not get bfast, followed by “you’re the worst mom E.V.E.R.” look…yeah I know, I get that award without even trying, you can hate me later

8:45 – froth my creamer, run my Keurig just to find out I never put coffee in it

9:05 – eat bfast one handed while nursing and rocking baby to sleep…story of MY LIFE

10:08 – vacuum the thousandth lego piece…my husband is going to kill me…sarah haven’t you done the math?!? those little buggers are EXPENSIVE!! come on Sarah, you should have gotten on your hands and knees and scanned the floor before vacuuming

10:15 – braid 2 yr olds hair while baby cries on the floor during tummy time, can’t let the 2 yr old down again just because the baby is crying

10:23 – told “agoo” by the sweetest baby EVER mid nursing session…what’s that baby? did you just tell me that was the BEST meal of your life?!?

10:25 – impromptu ballet recital by 2 yr old who will not be dethroned by cooing baby

10:46 – found missing neb cup & mask in the lego bin, duh, why didn’t I look there in the first place 2 wks ago?

11:20 – nurse starving baby, wait, wasn’t I just here and hour ago?

11:21 – “mom!!!!” (being yelled from the bathroom by the 4 yr old)… “Ez, you are going to have to wait”

11:28 – 6 yr old informs me that the 2 yr old is in the shower with the 4 yr old, clothes and all

11:35 – dry off and dress 2 yr old again

11:40 – check on 4 yr old after her shower, find her dressed and playing with her dolls with soap still in her hair

11:41 – take 4 yr old to the bathroom to rinse hair out just to find out the shower curtain wasn’t tucked in during the showers…oh well, I needed to clean the floors anyways

11:58 – finally finish 4 yr old’s hair, yes my child you were right it did take FOREVER. 6 yr old sees it and says she looks like Elsa, did you hear that Ezzy?!? Worth asking her to sit still every 30 secs with a smile like that as a reward

12:15 – let kids pick out one toy from the naughty box after they earned it back due to cleaning their rooms

12:27 – finish making lunch just to find the 2 yr old with a pen and new stripes on her arms…apparently she is a tiger, she roars btw the way too

12:35 – talk to the hubs on the phone while he drives home since he is letting me go running during his lunch break

1 pm – rain soaked run finished, followed by a quick shower with the door closed!!!! just to be joined by the hubs and the 2 yr old

1:25 – kiss the hubs goodbye while eating the sandwhich he made for me #husbandisasaint

1:29 – help the 6 yr old locate his favorite lego guy after he informs me “mom, I have a short memory”. Found it near the snack box, go figure

2:15 – neighbor kid barges in my room while I am nursing baby to hide during their hide and go seek game

2:30 – call neighbor kid’s mom and explain I didn’t just whip my boob out infront of her son, that he just walked into my room, she apologizes profusely, I apologize profusely, situation taken care of hopefully

3 pm – go through old photos to send to my aunt for her bday, find a photo of me that looks just like Ya’el

3:45 – nurse tired fussy baby

3:55 – find myself singing 5 little monkeys while rocking the baby, thanks to the dance party going on in Cayden’s room

4:14 – ask neighbor kid if he washed his hands after going potty, his reply “how did you know?”…I’m that good kid, really

5 pm – 2 yr old finds new dress up clothes from a friend and messes with the piles of clothes I just sorted

5:15 – give up trying to make dinner until daddy comes home and holds the baby that thinks the Ergo is the worst creation at the moment

5:25 – try to help the melting down 2 yr old who can’t stand the way the straps of the dress is falling on her shoulders…I hear you kid, how dare they sit a quarter of an inch farther then you want

5:45 – enlist cayden to help with dinner and teach him how to follow a recipe

6:30 – nurse baby after scarfing my dinner while hubby held her off so I could eat it while it was hot…#husbandisasaint

7:35 – show daddy Ya’el’s new trick= giggling when tickled…could life get ANY better?!?

8:05 – nurse baby while daddy chases children around the house and telling them they are making his hands sweat…they have been warned…spankings are about to commence

8:15 – lay sleeping baby down so she can join her siblings and give us some much needed alone time

8:20 – decompress with the hubs while watching our show

8:30 – compromise with the 4 yr old if she promises to not get out of bed again…whatever it takes, if it means we can be alone for atleast an hour before our bodies force us to bed

8:45 – tell Cayden to go back to bed, no son, you didn’t just develop a fever in the last 30 mins you have been in your room

9:10 – baby wakes and hubs rushes to be the first to hold and snuggle her

9:40 – nurse baby after she tells dad she has had enough of his snuggles

10:30 – crawl into bed after the hubs rubs my sore back

12:35 – nurse baby..oh wait…its a new day…

The two youngest are sleeping right, the two oldest are playing with the neighbor kid. My floors have been swept, dishes put away, and I just realized the tv is quietly playing in the background, because honestly I forgot to turn it off since I am so use to drowning out noise.

I was stopped by strangers today all throughout my grocery shopping trip. I was asked the ages of the kids, asked if they were all mine, told I had my hands full, saw someone chuckle as I disciplined the 4 yr old who stomped her foot and rebutted my decision. I was asked if I was okay, if I needed help, and told they we were just the cutest. A friend with multiple children all in tow was there too and when she saw me she said “i thought I was the only one desperate today”. But my favorite conversation was with an elderly gentleman who asked all their ages and then told me I was doing “something right”. I half laughed, because to be honest, that is NOT the response I usually get when people find out how many kids I have. He told me I was blessed, I told him thanks, he then said it again with a nod. How did he know that I needed to hear that the chaos, my chaos is a blessing, how did he know it took an hour just to get everyone on board to take a 6 min drive to the grocery store and I wanted to just give up this morning?

I AM blessed, thankfully I ran into someone who looked at my chaos and only saw something beautiful, something that is worth more than anything this world tries to offer, something God has entrusted to me. Thankful for my kind stranger today, who spoke to my heart, not once, but twice, to make sure I saw the gems that I get to call mine.