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


Showing posts with label home iv's. Show all posts
Showing posts with label home iv's. Show all posts

Tuesday, June 1, 2010

Verbal Vomit


Nothing good is coming in my mind today...so today I'm allowing myself to expel all of this negativity out of my brain, so that maybe it won't continue to eat me alive today. i'm going to now shut off my brain and just type whats in my heart...hope maybe it makes sense...

i'm so pissed off.

today i'm so beyond emotional. i don't think there's an emotion for the way i feel today. i want it to end. all of this crap. i want to get up tomorrow morning and not think about death. wish so much that i didn't have to walk thru this valley of the shadow of death...but that i can run thru it. that it will stop following me. everywhere i go. clouding my every single thought. i want to pick up and go to the store with my children if i so choose. i dont' want to have to find someone to sit with Conner or to pick up groceries for us. i want to not feel so overly helpless any longer. i want to recall conners childhood with fond memories, not ones now filled with bitterness because at the time i didn't understand just how blessed we used to be. we are still so very blessed now, but it's different. he used to eat. he used to run. he used to smile without pain. we used to go thru days without once thinking or talking about heaven. i used to be able to drive past a cemetary and not even think twice...didn't have to glance in to see what its like. not anymore. our blessings are different now. but they all revolve around death. i'm so angry. so angry. actually anger doesn't even sum up a fraction of my feelings. there is just no word strong enough. he used to be free to dance and play and sing and run and smile and laugh and go to school and see his friends and go to bible camp in the summer and swim in a pool and live without iv's and go to the hospital knowing we'd be going home healthier and go to clinic and gets smiles from the doctors...we used to plan for the future, take family vacations, hell even just plan family vacations knowing we'd all be there. going thru a day without thinking about or planning in my mind even just one aspect of a funeral is just not my reality anymore. thinking about finding a plot for my sons body to rest, listening to him cry because he wants his doctors to help him breathe, having to think about what size of a coffin would best fit a 7 year old boy, listening to others take all of this life so for granted. yelling at their kids cus they couldn't tie a shoe or because they'd be a moment late to something of unimportance...it's just frustrating. going to mine or my husbands doctor appointments and even our own doctor crying over what we're going thru. the simpathy. the piles of cards. the prayers. the well wishes. it's all just so discouraging to me today. because why is this for us?

why does this have to happen to us?

to our family?

to our son?

why is there money waiting in this beautiful account from beautiful people, just sitting there, mocking me...waiting for him to die so it can be spent? why? how in the hell am i supposed to run thru this valley of death....when i cant hardly find the courage or the strength to stand up in it? to find a way to really live in it. i can't imagine living past it. this anger is so deep and is directed at nothing. not a person. not god. nothing. it simply is. a new part of my daily life, or hopefully just a few days here and there of my life. i still have to function. i still have to cook. to clean. to wipe noses. to gather ivs and meds and supplies and breathing treatments and bolus feedings and grocery shop and mow the lawn and hug the kids and my husband and order everything we need...the world simply doesn't stop for death.

it pushes you right thru it.

and it's not fair.

how in the hell am i supposed to greive or be FULLY aware and living in each moment with this damn reaper on my neck...sitting at our doorstep. just mocking us. just waiting. there can never be enough time. each day flies by and blends with the next one, and the one just before it. i try so hard to make each day quality. i hope that it is. because i don't feel alive. i only know that i am because of this despair in my heart. in my brain. in my body. each and every second.

i'm tired of hearing people say that this will pass. it won't. it never will. sure the time will come and he will earn those beautiful wings and be free from pain. but it will never pass. it will never be done. it will forever alter the way i live my life. how my family lives their lives. how can we be forced to grieve publicly the most intimate loss of our lives? it's horrific. theres no words for it. no person can fully understand these feelings. unless they've lived thru the loss of a child. no aunt or grandparent or cousin or friend or great grandparent can ever come close to imagining how we as parents are feeling. i remember planning his birth. how we spent months decorating his nursery, picking out clothing, fighting for his survival then finally meeting him. the fight in me grew ten fold that second i first held him. and now we're forced to plan his death. why? all of this is crowding my brain each and every second, i'm so absolutely exhausted just from what goes thru my brain each second....its no wonder i just can't find the energy to clean the house up or even make a sandwich to eat.

living....breathing....this upcoming disaster....my heart is fully raw, and broken and angry. there really just are no words. i'm just broken. and nobody i know quite understands. i'm more overprotective now than ever over our family of 5. i refuse to let others ruin the time we have with our son. i'm very selective who gets to spend time with us. because it can be a distraction. while they are good here and there, it really is time taken away from my sweet son. and i'm not willing to do that. where does this all end......where does it all go????????????? how will i ever learn to live with this new way of my life??? when will i be ok?

answer probably, is simply....never.

Wednesday, May 26, 2010

God provides....


We've been home from the hospital for a full day now. We've settled back in, got unpacked and everything washed and sat for a few minutes before dragging it all out and repacking it again! Only we are so excited that we get to! Tomorrow we're leaving for the beach trip that was so graciously provided to our family by Living Hope Church. Thursday thru Monday in a immaculate house right on the beach in Manzanita, OR. We are so blessed and so thrilled to be going. Not only are the accomodations taken care of for us, but they gave us a HUGE tote full of beach toys and sand fun, kites and bubbles galore. Our kids are more than excited for this wonderful distraction. Life has been so difficult and mundane, just going thru the day to day motions, this couldn't come at a better time. We all need a good distraction and some very quality family time together away. I had a garage sale last weekend and managed to sell enough stuff to more than take care of our food and gas needs for this trip, so that too is a huge blessing. We're taking Conners pain meds and his IV antibiotics along with his other daily medications oh yes and plenty of oxygen to get us thru this trip very comfortably. Much like Conner mans make a wish in january to hawaii, this is giving our family something to look forward to, instead of the everyday lull of watching him struggle. I know many are reading this from Living hope church and my heart just needs to tell you thank you so much. For blessing our family in the time of the greatest need. For praying for us. For loving us. Our cameras are charged and ready to shoot a million pictures and at least 3 hours worth of dvd's...nothing matters more than family.
Last night Brad and I met with the local hospice, and we still decided its not for us. For some it's great, but their limitations don't fit with our therapies for Conner. But they are extroidinary people there, and since our home health nurse is in that same office they'll just tailor to our needs as far as the bereavement groups and counseling, and keeping his pain under control all while having the flexibility of doing home iv's or even a trip to doernbecher if we so chose. we really feel so glad to have that meeting done, and our minds made up for now. We'll reevaluate as things change, but for now we're good. and that is very comforting.
Brad has taken all of this week off so he can spend time with us as a family and to try to manage the stress and grief he's going thru at this time. like me, it comes and it goes, and some days are great and others it is a fight to even get out of bed. so please pray for him that this weekend can help him to feel refreshed. Usually I'm worried about our finances if he misses work because we're a single income family, but more than ever, and more surely than I've ever felt or said before...

God provides.
He proved that to us without a doubt. He provides.
I pray you each enjoy your families for this memorial holiday weekend, and while we take time to remember those who've served for our country and to protect our freedoms...first and foremost take time to simply enjoy being alive. for family. for friends. and most of all, for God.
Love

Sunday, May 23, 2010

a fund has been established...

well...i've been asked a few times to post this on here so as to maximize the donations. this is so very heartbreaking and morbid.
a fund has been started for Conners funeral expenses.
I did not start it.
Another cf mama did that for us, and I have to say that it has lifted an extreme amount of pressure and stress from my husbands and i's shoulders. Last week I started the agonizing process of calling funeral homes and talking costs and options etc and I hung up the phone so discouraged.
here we have been shelling out money for CF expenses for the past 7 years, and a high risk pregnancy for Conner to boot. Money is an issue for us as well from SSI limitations etc. So to know that at least part of the funeral can be covered w/o having to charge up credit cards has lifted a burden. I will post it on this post and add it to my site here as well...no pressure....only gratitude...



we are in the hospital right now, just got in a few hours ago. Conner man is having excruciating pain in his back. We are here to get a head start on pain control with morphine to transfer care home to ourselves or hospice...
we are waiting for xray now, they're going to make sure he doesn't have any stress fractures as well as run urine to rule out the possibility of the kidney stones....
i'm prayerfully hoping that we can make our beach vacation trip from the church this weekend...the goal with the doc is to get in, get his pain under control and go home. so i'll keep you updated....

Monday, May 17, 2010

a break...

Conner man decided today that he's ready for a break from his IV leash...such a big decision for such a young person...although he's wise beyond his years naturally from all of this. This decision scares the bejesus out of me. I asked him gently if he realized that the IV's help him feel good and that w/o them he may feel bad again quickly and he said "ya i know mom..."
so there you have it.
I talked to hospice today, have to schedule an appt....and tomorrow i'm calling our local funeral director here that has come highly recommended and see what he thinks if theres anything we need to do before hand....
this.
sucks.

Wednesday, May 5, 2010

we're all made for more than we can see....

Hello.
It is Wednesday, Bingo day at hotel de-Doernbecher and it's on! Word got out that Conner man the bingo champ was back and so we've been challenged by many CF'ers to a duel! The bingo card has been delivered, we requested the winning card of course, and I feel we got it, because they handed us his card and a RED marker to use...so hello...red means we'll be victorious! Then it'll be school and then Kim in child life will be in to play. A fun day for sure.
We saw Dr MacDonald today, the oncall CF doc for this week and I told him we'd like to hopefully go home on IV's Friday since it's walk weekend AND mothers day (don't forget that!) and so as long as he responds well to his IV changes we'll plan on going home Friday. Good times. It's nice that they trust us enough to care for Conner man at home. I know they don't let everyone go home with IV's because some people aren't complient...so it's a big compliment when the docs let a CF family do that. a nice boost of confidence. and we all know CF parents need nothing more than encouragment and compliments on a job well done for what we get accomplished each day. So I appreciated that today. It's the little things that count.
My heart is pretty broken today. Im feeling pretty overwhelmed and fragile...so any prayers would be greatly appreciated. It's hard not to feel defeated and unappreciated sometimes in this fight. I'd like to also ask that you keep my husband Brad in your prayers as well as he could use all the support you can muster. This is a more difficult time in our lives then what shows. Brave faces become the "norm" and almost more important than the words that we do say, are the ones we don't have the heart to say. Unspoken words, unspoken feelings easily bring us down and make each day difficult. Our prayers as well, go out to each of you, for God giving us your amazing friendship and strength, His plans are to prosper us and not to harm or hurt us and seeing our despair it's easy to overlook the amazing blessing God is giving us in you each day. So thank you once again. I can never say it enough. We inspire you and you keep us afloat. Even a person who doesn't know of the Good News can plainly see God thru all of this pain. I received an email yesterday that put it all in perspective for me...it said "I found you from a friend. Your story caused me to pray. Pray for the first time in so many years."
isn't that amazing. It's not me. It's not Brad, nor Conner, nor Hunter and Bradyn...
It's ONLY GOD...
and it's simply beautiful
happy cinco de mayo to all of you...have a margarita for me... ;)



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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.

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