My arms are empty and acheing...

I can’t believe I’m a mother without…

Life has been twisted and turned upside down. As a mother, I had both the wonderful privilege of holding my sweet son as I brought him into this world…and the horrible chore of holding him as he took his last breaths and left this world, at only 7 years old. June 24, 2010 he earned his angel wings, passing away after an inspiring but brief fight against Cystic Fibrosis. Now I live, solely focusing on living a life to get to be with him again in heaven, and to raise awareness for Cystic Fibrosis research. I am dedicated to a cure, not only for my sweet sons legacy but so that other CF families never experience the greatest loss of their lives that we are now facing. My mother’s arms are missing Connerman, yet he still inspires me daily to leave a mark of LOVE on this world…so for you my sweet prince, mommy will try!



Love Love Love

Always Always Always


Thursday, December 31, 2009

I take it back, Thank you 2009...

After posting what I learned in 2009, and re-reading it many times...I realized something. I really don't hate 2009 at all. While it was a very hard, and stressful year filled with 10 hospitilizations and lots of home IV's, oral antibiotics, xrays, and clinic visits, it also was the year where I learned the most about myself. Learned who I really am and what I stand for.
Sure my son's PFT scores are low and that's not where I'd obviously want him to be...but it gave me much needed perspective.
Sure I spent alot of the year crying or worried over Conner, but from that I learned just how much family means to me.
Sure we spent more days in the hospital or home doing IV's then not this year, but you know what? Those meds gave me another year with my son. Thank God for them.
Sure we're now always waiting for his next lung infection once he ends IV's, but because we know it may only be a week or even a few days, we spend each and every second FULLY alive and present in those days.
Of course it kills me to see my son struggle to breathe, but it has motivated me to dig deeper. Find my own answers. Research more. To realize there is ALWAYS someone worse off then you are, so be thankful.
Sure I had a horrible sit down talk with Conner's CF doc in Sept or Oct that devestated my world, gosh from that I've learned just how precious each day is....
So i'd like to officially take back the first sentence in my "what i learned in 2009" post. 2009 was not the worst year of my life thus far. In a way, it was the greatest. This year I learned what it means to really be a mom. to really love. to fight. to serve. to give. to cry. to trust God. i really did learn that what doesn't kill you can only make you stronger. this year brought me great support, community strength, my best friends, and probably the most quality time I've ever spent in my life with my family. With each person I see. I learned you learn your greatest lessons when you are completely broken. Life is no longer random. I found my strength. I found my weakness. I found me.
Happy New year...I just can't wait to see what I learn this year!

Tuesday, December 29, 2009

What I learned in 2009...

I'm no good at resolutions, nobody I know is really...so instead of doing that I will write what I've learned this past year....and what a year it has been.
I've learned that this year has been the WORST year of my life thus far. I've learned that things truly are easier said than done. I've learned who my real friends are, and weeded out who are not. I've learned that when you feel out of control and angry, that if you put on just a little bit of makeup or pretty earrings that it makes you feel a tiny bit better (try it!). This year I learned that I really am my sons' greatest advocate. I've learned the power of random acts of kindness. This year I've learned how much I am blessed to have 3 beautiful sons and a loving husband. This year I learned what a bipap machine is. This year i've learned who is there to support me. I've learned it's truly better to give then to receive. I've learned, truly learned, that God is there for me and my family. I've learned just how much pain I would be willing to endure for the sake of my children. This year I learned that kids can "outgrow" their PORTS and have to get it replaced. This year I learned, or finally truly understood just how lethal CF can be when it attacks full force. This year I met my best friends. This year i've learned how hard it is to watch my son struggle to breathe. This year I learned how to read and understand chest xrays. I've learned more about CF this year by my almost daily research than in any year before. This year I've learned just how easy it is to let your fear take over your entire life. I've learned that you can manage to fit in 10 hospitlizations and 10 rounds of home IVs into one calander year. I've learned how great it feels to give 100% of yourself to others, whether it's by buying the stranger behind you in the drivethru their coffee, or by giving even a dollar to a homeless man. I've learned just how amazing it is to have quiet time. This year I've learned how important it is to cry. and scream. and laugh. This year i've allowed myself full honesty when dealing with family or friends. This year I've learned how important it is to me to not make Conner live in a bubble. EVER. This year i've learned to put my family before extended family. I learned not to look differently at people who go out in public in sweats or pj's, it may just be the only way they can make it thru that day emotionally. This year i learned it really takes a village to raise a child. This year I've learned just how hard being a mom to a special needs child is. This year I've learned how to let things go. I've learned to say no and mean it. This year I learned there are books at the bookstore to read to your kids to teach them about a sibling dyeing. I learned I love the chaos of Christmas traveling even though I swore I hated it. I learned that sometimes silence can be deadly. I learned the importance of surrounding yourself with positive people. This year I learned that going to a midnight showing of a movie is actually not as crazy as I had originally thought. This year I learned how music can drastically influence your moood and behavior. This year I learned alot about our CF docs (one LOVES to roast his thanksgiving turkey in an oven bag! another plays guitar in a band and can't figure out how to play boulevard of broken dreams by green day!) I learned this year that having oxygen and a pulse oximeter in my home will cause me to overpanic. I've learned how to calm down my OCD. This year I've learned that if a doc wants a sit down talk with you it's generally not going to be a good discussion. have backup. I learned not to judge others because you never really know exactly what they're dealing with. I learned this year that I guess Tequila and I can be friends again in the form of a frozen margarita....This year I've learned just how much i despise people who CHOOSE to smoke and kill their perfectly healthy, beautiful lungs when there are thousands who did not chose to have horrible lung disease from CF. This year I learned that you can get a tutor to come to your house for your 1st grader, and that he would still make it to 2nd grade. This year I learned the dangers of CF and hottubs, but refused to limit them from my son because he loves them. This year I learned about the Twilight series. and fell in love with it. This year I learned who my greatest enemy was and learned to accept that it is a very strong opponent. Ive learned that you can't put your faith 100% in your Dr's, that nobody truly knows everything. I've learned that spending quality time with your family is the most important thing you can do. I've learned that the dishes and cleaning will wait for you. This year I've learned how to see thru people's smiles. I've learned that I am on Team Edward. This year I learned that when people say they are ok, they really aren't. This year I learned that clinical trials will not accept my son because his lungs are too sick, even though he could benefit the most from those therapies. This year I've learned that a child can decide to no longer eat because it's too hard to eat and breathe at the same time. This year I learned all there is to know about MRSA. I've learned that sometimes Doctors guess! They get stumped. They don't know...This year I've learned that you get to a point where you have to take your health into your own hands when dr's say there's nothing more for they can do. This year I learned how to not let someone telling me NO stop me. This year I learned how much my heart can break by the smallest of children. This year I learned you can get an Xbox 360 and a Wii in the same month. This year I learned how to keep families connected with us by caringbridge. This year Ive learned how lucky we used to be to only have to go to CF clinic once every 3 months. I've learned that I cannot, and will not take on anyone elses stress for my own, because I've learned I have enough already thank you very much. I learned that I really do love to run, even though i spent years saying I hated to. I've learned to accept help when it is offered. I learned homemade chicken noodle soup really is good for the soul. and a cold. This year I learned how to let Conner Make A Wish. This year I've learned that watching my son's health deteriorate in front of my eyes is truly the hardest thing I could ever imagine watching. I've learned to never say never.This year I've finally learned that sometimes a cure doesn't come soon enough. Sometimes prayers aren't enough to heal. I've learned that sometimes people aren't meant to be healed, it's not their plan. I've learned that sometimes you will outlive your children. it does happen. yes, it really does happen. I've learned that the previous lesson takes a LONG time to truly sink in and become real. I've learned that sometimes it is perfectly healthy to be numb to your circumstances. This year I've learned that at the first sign of a lung infection, i start to worry. I've learned I suffer from anxiety and panic attacks. I've learned to always have a bag packed when I head to CF clinic. I've learned to make small, realistic, and acheivable goals for Conner's health, so I don't always feel so helpless. This year I've learned that anytime not spent loving someone is just time very much wasted. I've learned how silly kids look when they lose their teeth and only one or two big teeth come in those gaps. This year I've learned that when you go to Starbucks too often, they memorize your drink down to the temperature. I've learned I've never been so excited for a year to be done with. Yet, I've learned that next year may not be sunshine and roses as well. This year I learned that my son's health is too poor, and he is too fragile to qualify for a lung transplant. I then in turn learned that I would lay down and give him my lungs this second if I could. I've learned there are no guarentees. There is not always a tomorrow. I've learned to be present in each second of every day. I've learned that the smallest moments make the most precious of all memories. I've learned that sometimes medicine just isn't enough. This year I've learned that my children know who God is and they believe in Jesus. I've learned that if we start eating dinner and forget to say "blessings" my son Hunter will always remind us. I've learned that life really can be as carefree as it is for a child. you just have to make that choice. I've learned that thru all I've learned and how much our lives have changed this past year that I'd still rather be fighting the good fight, for my son's life, then to have already lost that fight. and I've learned that all i can do is fight, so all I will ever do is fight.

God bless you and Happy New year to you!

Tuesday, December 22, 2009

Trying to catch my breath...


Today was just kind of a wierd day for me. Full of ups and downs, and stress and happiness. Which is kinda funny, because it really has NOTHING to do with christmas in 3 days...I've had my presents purchased, wrapped and under the tree since black friday...yep Im one of them...I've learned I have to be. We got out of the hospital the day before thanksgiving, and so even though i was sick i got up at 3am and stayed out feeling crummy until i had everyone taken care of, because my son's health has been so up and down this year i knew i had better get it done. We also bought our xmas tree that day and got the house decorated that day, because last year we were in the hospital for the first half of december so we didn't get any decor out. So this year i was proactive, and good thing because we wound up in the hospital again two weeks ago and stayed a little over a week before going home on IV's. So this year we do get Christmas, I made sure of it....

Conner's IV's ended today, and while this should make me happy (and in a little way it does of course!) now the worry begins...i hope he can stay well thru Christmas, until we can restart IV's next monday...for his make a wish trip jan 11-16th...

today i got conner's itenerary for his make a wish trip to hawaii emailed to me, and it tore me apart....LITERALLY. i cried reading it, I am so thrilled for him to FINALLY get his one heart felt wish to come true. honestly, i always knew he could do make a wish, but i thought i'd wait til he was older and could really find the ONE thing he wanted more than anything...but since the docs urged me to do it when i met with them a few months ago...(another story for another time!) i knew i had better get on it! many kids want these extravigant fun filled trips, and we will have a great trip in a great location but get this, his wish was to "relax on the black sand beaches of hawaii" that tears me up. he is 6. he should want to visit disneyworld, or sixflags or legoland, you name it, but his wish is to relax. that is so precious...and heartwrenching. while in hawaii he gets to fly on a helicopter to tour the island and to see the volcano and lava...and he gets to go on a whale watching cruise. i am so thrilled for him. there is also 3 days where we get to do whatever we want to, well 3.5...so i've found hawaii's BEST black sand beach...he deserves the world. and while i am excited for this, i wish more than ANYTHING that he didn't qualify for make a wish, that he had a greater prognosis...that CF was a disease we simply have heard somewhere before. unreal...pinch me....i MUST be dreaming that this is infact OUR life...

today home health company came and delivered his new bipap machine.

ouch.

let me preface it by saying that I am thrilled that after 2 months of fighting his insurance gave us the ok to try it out for 3 months...and I am thrilled at the possibility of it breathing for my son in a way so he can get a more restful nights sleep, hopefully helping him to have more reserves to fight off his frequent infections. Conner's ok with it, he is not wearing it tonight, he picked his favorite of the 3 masks and we're cleaning it and all the tubing tonight and maybe tomorrow he and daddy will have "star wars jet fighter" night...to help him feel comfortable wearing it. i pray it will work. i am hopeful. If anyone's had any bipap experience i'd love any advice you have to help him accept this. this kiddo has put up with so much and he is so brave, and i want to make this the easiest transistion possible. but it still hurts me because it's yet another step in the wrong way of his disease progression...first i cried when we had to do home oxygen at night, i never wanted to have oxygen in my home, i never wanted it to get that far...and then it not only become an everynight thing it has slowly crept into more and more days as well, and now the bipap is coming into the mix at night with his oxygen...and my heart is just heavy.

i can't remember the last day i made it 24 hours w/o crying. he is so strong. he is strong for me. i can put my brave mommy face on...but not 24/7...the pain and the worry is making me very impatient and irritable. Pray for a deep breath of fresh air for me....a renewed energy. a renewed focus. a new drive...a new sense of purpose...a new fight in me!

tomorrow night we are taking the boys to the portland international raceway to see the big christmas light show. they are very excited and i am very excited to take them. and gosh then it is christmas eve!!!! who can believe that?! already!!!

do you know that this time last year, since we had no real xmas at our house from being in the hospital, i actually thought "gosh, i know next year will be better!".....how could i have known the heaviness that would consume my entire soul only one short year later. the worst year of my life. the worst year of conner's life. the way i have distanced myself from people i know and love. the overwhelming sadness in everyday, yet at the same time the absolute HOPE in each second i spend with my son, healthy or sick. How could i have known that just one year later i would be consumed with the thought of losing my son on a daily basis. i have to say this mom gig is the absolute hardest job i could imagine. and since none of my friends and family can TRULY relate to this grief i'm feeling (and i PRAY none of them EVER will!) i feel like i have 10 foot walls surrounding my heart, my pain. and i refuse to let anyone in fully. i can give snippets into my pain and life, but the darkest parts i save for myself alone. It is so hard not to get upset when i hear the dearest of friends or strangers say things like "gosh today was so horrible, my kids were fighting, on and on and on..." cus REALLY?! you wanna hear about a HORRIBLE day?! i could sit you down and make you SPIN in the heaviness of each day in our lives. And i know all families with CF can do the same as well. and whats more, all those cliche sayings i used to hear all the time and not think twice about are my heartsong these days.

Live each day to the fullest

tomorrow is no guarentee

all that matters is family

it's the little things that mean the most

the most important things in life aren't things...

on and on. i honeslty feel a bit fortunate though to have had this epiphany. a glimpse. a fast forward to the day when Conner earns his angel wings and is no longer suffering here. as horrible as that makes me feel to even think it...i feel so blessed that my perspective has been so radically shaken and changed...i live and breathe my sons. my husband. the five of us. my real family. my heart. my life.

someone show me the way to the OR, I'd lay my life down this SECOND to save my sons life...give him my lungs so he can take ONE breath w/o lungs clogged with mucus and inflamation and infection.

but...i know i can't. i know he can't. so i will keep my brave mommy face on today and into tomorrow and we'll see what kind of fun we can have!!! cus thats what mommies do... ;)


just another day in paradise...

Saturday, December 19, 2009

Today was a shitty day...pardon my french...


One of those days for sure........ggggggggggrrrrrrrrrrrrrrr! So glad it is almost over! I have a person in my life who swears up and down they want to "help" me with the stress and everything from the horrible turn in health my son has taken this past year. "I will do whatever you need me to do...I want to help you..." against my better judgement I said ok...and once again I wind up getting burned. I am so upset I can't hardly put it into appropriate words...for the sake of those who may have talked to me today and know what/who I'm referring to I will leave specifics out...but here I think are some good rules to live by..

1. if you say you wanna help...HELP.

2. if you say you're going to do something for someone out of kindness, DO IT.

3. if it's truly out of kindness and not out of some wierd need to feel needed, then GIVE IT A FLIPPING REST..."i did this, i did that..." I think the bible says it best when it talks about not boasting about your works...store up your true gifts in heaven...

4. if you are not interested in helping for the right reason please do us both a favor, just don't offer.

i truly feel that some people just do things for recognition from other people..."oh how wonderful you're there to help..." blah blah blah...those people are not a part of my life. PERIOD.


but then...I received a quilt....my aunt in law makes the most beautiful quilts...she sent me one with a card inside and it just made me cry. She made me this quilt to take to the hospital when Conner and I have to go...and for the first time someone thanked me. get that. she thanked ME for taking such good care of Conner and for loving him so dearly. wow...it's amazing how something can get to you so much...


and just when i thought the day was going to end well...Conner's having more dreams about death. he first started having dreams a few months ago, and would run into our room and wake me up crying...and tonight...again. dreams about death, nightmares more like. he won't tell me more than that, says he's too afraid to discuss it, but that the scariest part to him is that once you die, you never come back, and he'll miss grover (his bestest pal in the world!) why oh why at 6 years old is my son having to deal with the thoughts of death.

I'm pissed at CF today, for taking away my baby's innocence.

I'm pissed at CF today for robbing him of the joy a 6 year old boy should have and replacing it with great fear.

I'm pissed at CF today for causing my family so much grief that I can hardly make it ONE day without crying from the grief in my heart....

If CF had a face, a body...i'd knock the shit out of it.

period.

the end.

Friday, December 18, 2009

When the docs say there's nothing else we can do, I go on my own...

So Conner's on every medicine and therapy available for a CF patient...and the Docs have said there is nothing else they can do, and they have even admitted to me, that sometimes they just guess at what to do for him...because they're out of ideas. My son is not a transplant candidate due to having another disease (prune belly syndrome...meaning lack of abdominal muscles) because with PB he can not cough up his CF secretions...making intubation and ventilation too much of a risk for him....fine i'm at peace with that....
but....
that doesn't mean i've stopped when the doctors have given me a red light. they are NOT god, they DON'T know everything, and it is MY son....like my dear friend has said...my son does NOT have a choice to have CF, so I do NOT have a choice but to fight for him...anyway i can. I've been looking ALOT into alternative therapies and natural medicine for him, into chiropractors, supplements you name it...i've googled it all! And I think I've found a winner...
NAC...click here for NAC info because i am NO expert in it all....and just FYI, the article refers to glutithione...and NAC increases the levels of glutithione in the body...so now it should make sense...
so my plan is to try it out when Conner is off Iv's for awhile and get a good sense of what it does. I have found NAC in the "fizzy" form is most effective and can be purchased thru Canada where the supplement is regulated and is pure and guarenteed to contain what the label says it contains, whereas here in the US supplements and herbs are not regulated and they can say one thing on the bottle, and you are NOT at all guarenteed to be getting what the bottle says....

we shall see...but for today I am hopeful....

Tuesday, December 15, 2009

Another admit BITES THE DUST!


"You're going home tomorrow!"

Those are words that I never tire from hearing.

Finally..............


This is Conner's 9th or 10th admit this year ALONE. The MRSA that has taken residence in his lungs have led to this horrific year...that thankfully...is ALMOST OVER! You know I have never really cared what year we're in, or about New years...never made a difference to me one ioda! but this year...THANK GOD IT'S ALMOST OVER!!! I've gone back thru Conner's mychart account here at the hospital and he has spent OVER 200 days of his life here in the childrens hospital. he has in turn spent another exactly 202 days at home doing home iv's...and has spent another 159 days doing home oral antibiotics all to fight this horrible disease! For those who are math savvy that is almost 2 years of his life....and he is only 6!!!!

But let me put it into perspective.


HE FIGHTS EVERYDAY OF HIS LIFE!


To do the things we take for granted... he fights to breathe, he fights to have enough oxygen to breathe AND eat at the same time, he fights to have the energy and strength to walk thru a grocery store w/o getting winded, he fights to keep his supplemental oxygen needs to only night time and not daytime as well, he fights to digest his food, he fights to gain even half a pound, he fights with the constant desire to be "normal" with his friends and not be tied down to his over 15 daily therapies, he fights he fights he FIGHTS...

And as a mom, i watch him fight.

i ache.

i suffer.

i feel soo overwhelmingly helpless.

It is by the grace of God that I can put a brave smile on my face each day.

That when people ask me how Conner or I are doing, that I can somehow say "ok." Because we are FAR from ok...

It kills me to see him out of breath, gasping...I've seen the inside of his lungs, he is fighting for each breath he gulps in. I bravely hold his hand when they put that push pin sized needle in to access his port for Iv's as they have since he was only 3. 3 people! Most people with CF dont need ports until their teen years or beyond...he is 6 and is on his 2nd port because his veins are SHOT from all the PICC's and Iv's they've had in them from birth. Hell he was stuck with needles when he was in my belly. You wanna talk about perspective...my son truly believes he is LUCKY to have a port. That kid is amazing beyond his years. AMAZING.


So we are getting discharged tomorrow probably early afternoon after his 2 iv's at noon. He will be on iv's until next monday or so. Christmas week. already. The week where we were planning on doing preventative iv's for his upcoming make a wish in early january. heartbreaking that these iv's in fact are not preventative in any extent of the word. they are to help fight the mrsa that is taking over his lungs. So he will be done with his almost 2 months of iv's on monday. he will get exactly 7 days off from iv's, then will restart them the monday after Christmas for Hawaii. We are looking at possibly doing oral antibiotics while he's in hawaii to make sure that he stays well so far from home.

Each night I pray for a cure, i spend hours of my day praying for a cure, or crying on the inside, putting my brave mommy face on for my son...he is much stronger than I am, there is no doubt about that. He is a CF Warrior...he takes this battle head on with a strength I will never know or fully understand. I cry when I have to get blood drawn...BOO FREAKING HOO...seriously! He inspires me to be stronger, to be better, to live in each moment, to be more patient and more understanding, to fight alongside him for a CURE. He so deserves it. All those with CF and their families deserve it. In the grand scheme of things in my life...truly...nothing else matters, not what year it is, not one little thing.


only a cure...

Monday, December 14, 2009

Blog numero uno...the introduction


So here we are a new beginning. I have decided to cross over to the dark side so to speak...to blog. To have a space in my unraveling world where I am free to just be me, say what I wanna say, and at the same time be free to be honest. No holds barred...
I am a mother.
I am a wife.
a daughter, a sister, an auntie, a cousin, a granddaughter, a friend, a confidant, an organized OCD freak, who sometimes gets lost in the shuffle of life in the Jones house of boys! I have real honest emotions that attack me every chance they get. On any given day I am happy, fearful, sad, pissed off, hopefully optimistic, frightened, worried, ok maybe overly worried, but I somehow manage to hold it all in. Along with all of the above, I am also a full time nurse, full time stay home mom, full time respiratory therapist, full time medicine and appointment scheduler, full time boo-boo kisser and bandaid applier, full time researcher...phew...

I am a mother of a child with Cystic Fibrosis...

you can get caught up with my son's medical history at his caring bridge site at www.caringbridge.org/visit/connerreedjones for background on his story and our journey, but this site is my site of freedom. With this site I am allowing myself honesty. To cry when I need to cry. To scream when I need to scream. To vent when I need to vent. My son is very sick...and I need this for my sanity, not so much for people to read as it is for me a great way to journal my frustrations....get it out of my head so that maybe i can catch a few z's at night (HA!)

I am doing the best that I can juggeling all of this, but it has become apparent that in CF (cystic fibrosis) there is a lack of the big, dark, horrible TRUTH. Cf is a DEVASTATING, horrific disease with no cure. NO CURE. Life with it isnt always as "Bright and Shiny" as the CF foundation wants you to believe. I am on a quest for more information. Better, more honest answers. I will never give up hope that CF will one day be cured, and I will always fundraise towards a cure, but I pray that it will be soon enough for my son. Uhg. There it is...the very un-bright and un-shiny Cf that I live with everyday.

Related Posts with Thumbnails

Did You Know....

There are over 100,000 people, the size of a small city, on the transplant list in the US.

There were less than 10,000 deceased organ donors in the US last year. (that's a ratio of 1 organ donor to every 10 transplant patients).

In the time it takes you to shower today, 1 new name is added to the US transplant waiting list.

From the time you woke up this morning to the time you wake up tomorrow morning, 18 people will die waiting for their transplant in the US.

click here to join the organ donation registry

BECOME AN ORGAN DONOR, SAVE A LIFE!