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This was so much fun, even if I am not very creative and it looks silly. I HAD FUN!
I got to cross another item off my list last night and did it with such an awesome person! Jenni and I had so many giggles as we learned how to paint these "flowers" and even if the teacher told us we were too anal. Well, if I am gonna hang this sucker up I want it to be as perfect as I can make it.
I for sure got the painting bug and kind of want to go buy some stuff and see if I can make this painting better, now that I know all the steps and how to make colors that I love. I mean, I can't even believe that I painted this (those who know me know I have NO creative genes running through this body.) But it didn't stop me or my brave partner for just going to town and laughing when we knew we did something stupid. Maybe there is never a mistake in painting or art...just a new way too look at the same thing. (Besides that black line I didn't want there! HAHA!) It was awesome watching the painting "come to life" if you will, and become those silly flowers that you all see. And to watch how different everyone does it, or the colors that you make. It was just really fun and I am for sure going to paint again!
It was great to be able to do this with such a sweet girl who didn't care that she she felt she couldn't make a good painting (Ummm...come on people hers rocks, right?!) Jenni and I became fast friends and we help each other out emotionally as much as we can. Its good to have someone else to talk to that doesn't mind the tears that come with it. She has her own story but has always wanted to know how I am and puts that first, she is a ton braver than she thinks. Just love her to pieces!
Thanks Jenni for being with me while I crossed #57. Learn to Paint off!
I get a ton of support from a ton of people, and as my story gets out there and people learn about it and what is going on
I may seem like a strong person on the inside but, certainly as of late, I have become such a sentimental softy. And you all have touched me so much with your words, texts, messages, donations, gifts, packages, emails, calls, letters and person to person conversations. Now there are tons of them have touched me in many ways but I just want to share a few that stick out right now:
"You are going to rock out the transplant." Alyssa
Every time I see my Grandma's name attached to anything related to this.
A gift that Laila got from a wonderful family (who knows just a little bit what its like...their daughter has been in my shoes before.) so that she could have something fun to do!
The dinners that people have made. Especially the meals that a Mom of a very brave CF fighter made and drove over to my house.
The bag I got from a family with everything I will need in the hospital after my transplant.
The paracord bracelets that a 1st grader and his mom are making in order to help raise money.
The chicken dinner that all of Peace really helped with. Without you guys I am not sure what we would do!
Seeing my name in blinking neon lights at the local dentist to show their support/
The penny I have taped to a post it saying "A 2nd grader found this and wanted to make sure you got it."
My just breathe bag.
The new Team Cassie bags.
Faith and Giggles for all their support and to help get the word out through the local paper.
People helping me cross off my 100 things list.
The article Jeremy wrote.
The many letters from around the US with words of encouragement and reminders.
"You are a strong and stubborn person, you are going to do very well with this transplant."
The list could really go on so much longer, but I need to cut it off. Thank you all very much for everything you have done for me and my family. Everyone in Michigan for everything you do with the Team Cassie things and when I go back to hear how many people read my blog ITS CRAZY! To see everyone I have known since I was a little girl work hard to help raise money because they want me to outgrow them. My family for the moral support and knowing when I am blue and mostly knowing what I need to hear.
For everyone here in Hartford and at Peace. I am have said it before and will say it again. You all are amazing and have humbled us very much. We thank God for putting us in this area where people want to help as much as they can and will work hard because they know I want to live. The city and church are crazy supporters and I love when people come up just to tell me that they are thinking of me and they want to help because they are. It could be so hard and it would be another thing to stress about without you.
Please know that I cherish everything that happens and that I will always feel very blessed by what is going on, even if it doesn't always come out clearly.
I am hoping that I get the call soon (as I pause and stare at my phone trying to will it to ring.) And I hope that I can rejoice with all of you after I am transplanted and healed. Here I sit tonight, yet again, feeling blue because I am not sure when the time will be here. Yet, I can be happy to know that when it does I will still continue to get so much support from you all. This many not be beating CF, but it sure is showing it that I am not going to stop...no matter how hard I get beat up!
Thank you all again. Much love!
I got to go home yesterday! Holy smoly, it feels pretty good to be out of CF jail. But why do I always forget that when I get home, the 3 of us living in this house are exhausted!
I have fallen asleep accidentally twice now and was asked by Aunt Gwynn (who came to help yesterday and today...a true God sent!) to go take another one. Jeremy went to bed earlier than I did lastnight and now Laila put herself down for a nap. We all just need to relax, rest and get on with our normal life. My legs need to get used again, my belly needs to get good meals, and my body itself just needs to breathe. Its one of those few weeks that you schedule everything pretty tight so you can schedule in time to sit and do nothing.
I left with my lung function at about 23% and sadly that makes me pretty happy, even though I wish my baseline was higher....at least I have hit it again and hope to just remain here while continuing my ivs. I have learned a little that it is ok to ask for more help and to take away some things that I know I can't handle. I have to remember that I am in fact still that healthy girl stuck in a sick girls body. I also learned that I need to be getting more fluids, because in deed it does the body pretty good...that and some oxygen.
My life (in regards to how my body handles health) keeps changing every week. I realize I push myself too much in order to keep up with my the healthy person inside. I am not really sure how to calm her down and make her see that the unhealthy person I am needs her to see that sitting doesn't mean you are lazy. A handicap sticker is ok, oxygen in public is ok, a wheelchair doesn't mean you are weak. But that is all so much easier said than done. I want to be independent. I don't want the burn in my lungs, the blur in my eyes, the shakes from medicine. I want to be healthy. I want to clean, do laundry, cook, do dishes, give my child a bath, bathe myself, be an awesome stay at home wife and mother. Instead I skirt by and quote my Scarlett O'Hara and tell myself that "tomorrow is another day." I want to organize things, but know I don't have the strength to do the work, but don't have the mind power to sit and watch somebody else do it. So I look at my house and say it is what it is. One day (I hope in the nearer future...) I will have the lungs and the health to do all this.
For now I am just going to be grateful for the rest that my doctors demanded I get and for the fact that I felt well enough to at least leave D6/5 and head home to be with my family, my bed, my food, my couch, my everything. Maybe and hopefully the next time I come home from that joint, I will have a big incision to heal and some new lungs to exercise. Wow, the thought of taking a deep breathe is like thinking of opening a present on Christmas morning...you just get the exciting feeling!! Until then I am breathing my shallow breathes and watching my phone!!
It happened once before at the funeral home for Ma's viewing. I really thought it was because of the surroundings and because it was her first time really seeing death, let alone people trying to explain it to her. But it happened again tonight and so I now know its on her mind more often than I want it to be. It is one worry I didn't want my 4 year old to have.
Laila and I were in bed while Jeremy sat in the chair watching the Tigers game (we can get the next few games, boys) and Laila started to feel sad. I asked her what was up when she burst into tears and told me she didn't want me to die. UGH. "Laila we don't have to worry about that for a long time." What else am i suppose to say! She kept crying and talking about how much she will miss me if I die and go to heaven. That she needs her Momma and won't be able to see her again if she dies. "We will see each other in heaven, girlie." Again, what am I suppose to say? But Momma is sick and she just wants her to come home. "Momma, always comes back Laila." WHAT AM I SUPPOSE TO SAY? And then she climbs into my arms and melts into my body because she just can't get enough. Her comfort is to hold on to my arm and when she is scared about things like this all she wants is my arm to wrap around her. I didn't know what else to do but give her both arms and the rest of me and just sit there rubbing her back, fighting back the tears down my cheeks while hers where coming at full force. My poor little baby.
We finally got her settled down with a few, "Jesus doesn't want us to be sad about that" "We will all be in heaven together one day" "You will be old and a Momma yourself when Momma goes to heaven." and a bunch of things like that. Like I said about how you are never prepared to kiss and hug your daughter one last time before you say goodbye for a transplant....you are never prepared enough to talk to her about death, especially YOUR death. I am not quite sure how people do it. My heart broke a bit and the guilt started up again.
It only makes me want to fight a little harder, even when I feel I have given my all...find that little extra in there and fight harder. It makes me worried a little more about post transplant and rejection. It makes me worried that I haven't done my job as a parent. It makes me sad for my daughter. She is 4 and her biggest worry should be if the skirt on her dress spins well enough, not if her Mom is going to die, go to heaven, and leave her. I asked her where she got this from...who said anything about me dying, she told me she got it from her own head. So now its our job as parents to reverse her thought. I always thought I did by telling her all the goods about the hospital, doctors, medicine, my "boo boos", and of course getting new lungs...it all means that I get to run and play and give her under dogs on the swings again (Yes, this is very big in Laila's world...Momma is gonna be strong enough for underdogs and to carry her again.) and I promise that I will do all those one day. So what gave her this idea? I for sure have to now put a little stronger face on when I am not feeling well, and make sure I watch what I say about breathing and how I feel etc. I want her not to worry about death..
Lailie, Momma promises that you will have YOUR mom, always. And just remember, “If ever there is tomorrow when we're not together... there is something you must always remember. you are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart... I'll always be with you.”
There is no way around but to say this STINKS!
I am back in the hospital with a very bad infection. The last few days I was feeling like I was suffocating and just couldn't breathe. Heck, I couldn't even walk across the house without having to sit down on the floor or bed and just rest. So Jeremy and I decided it was time to call and see what was going on.
We came in yesterday to see how "bad off" I really was. My weight is at a steady 97lbs...yeap a whole whopping 97lbs...and my pfts are now down to 18%. What an awful number to see, there isn't much wiggle room to work with now. I can't drop much more without having to basically LIVE here in Madison. I am hooked up to a bunch of things....being pumped full of drugs, fluid, treatments and the dreaded tube feedings.
I had a good talk with my NP, Brooke, and it was nice to hear things she had to say. Like I am the highest on the list that I really can be for my size and blood type without getting so sick that I would be on life support. She said I needed to stay where I am now and from now on I will always start my IV treatments in the hospital for a few days. I am going to spare you all the things she said that I didn't like because I am trying to tell myself that NOPE I am not getting to that point. I am going to kick some butt this week and just realize that I can't do everything I want to do. Cooking, cleaning and taking care of my fam is my job and sadly that even gets put on hold sometimes.
Since winter is coming up I decided that I was going to save my little pennies from taking pictures and get some new boots I found....an incentive for getting out of here and staying out. I can rock my new boots out in public. Doesn't that cure any blues away? It is for sure time to stop being glum and face reality...live the little bit of life that I have left in this set of lungs. They have lasted a pretty long time and I am just trying to spoil them so they want to work a tad bit longer hehe!!
Enjoy life, if there is something you want to do...do it because you have to ability!! I know I am (boots hehe!)
It was a crazy week. I guess me planning my funeral service was the foreshadowing of my grandma-mas funeral. Yeap, she is now with our Savior in heaven and as much as we will all miss her we can take comfort in knowing where she is.
Laila and I flew back to Michigan on Saturday. It was a whirlwind trip full of many smiles, laughs, and of course tears. She was such a wonderful woman, full of sass, grace, love, stubbornness, and just a pretty neat woman. She was so sassy and had such a great sense of humor and it stayed pretty much until the end. One of the last things we joked about was me not being able to get her lungs!! She was the matriarch of a family. My family. As happy as I am that Ma is joining her husband, son, and parents in heaven, this one rattled me a little.
Now that the last one in that generation for this branch of the family tree is gone, it means I (and my sister and the rest of my cousins) have moved up to the generation of "kids". Growing up there was the patriarch and matriarch...the parents; then my parents generation was the "kids"; and we were all the "grandkids". Well, now my Dad is the patiarch now...the parents...the PaPop. I am grown up, just a kid. Our generation has to grow up and be smart about adult choices! Many memories ran through my head, happy and sad. I passed the old house my grandparents lived in and as I am sure would happen to anyone in the family...memories and voices became alive again. I could see me playing in the ditch with my cousins. I could watch my grandpa saying his final wave as we headed home for the night. I could feel my grandmas nails on my back as she did "itsy-bitsy spider" to scratch our backs. I could hear the clocks ding, hear the old stories (and let me tell you the Zell men can tell a good story!) I could smell the warmth of their house on Thanksgiving. I was a young "grandkid" again.
She was one of my biggest supporters when it came to CF, she was always thrilled when I could tell her I was feeling better or that new medication was coming out. She was thrilled that I accepted on the transplant list. She wanted so badly for my lungs to came that she asked me not to come see her to say goodbye, or come to her funeral (shhhh what grandma doesn't know can't hurt her....especially since she is in heaven now!) But it makes my heart a little sad that now I can't share the joy of the real deal transplant, that it really did happen this time...not just a dry run. But I am happy that she doesn't have to worry about that or other things, and that she is so beyond content!
I had a great time with family and friends. It was nice to be with my cousins laughing...we haven't laughed so hard a in awhile! They are just awesome people. My health is still OK, and just have been sitting on 02 non stop since I got home. I plan on sleeping in tomorrow and getting a good night sleep...you know either that or I get a transplant call!! I want to thank everyone for all the thoughts, prayers, for coming, the memorial, the flowers, the good memories, kind words...whatever it was, it was much appreciated!
There is the throne of David,
And there, from care released,
The shout of those who triumph,
The song of those who feast.
And they, who with their leader
Have conquered in the fight,
Forever and forever
Are clad in robes of white.
First off I want to clarify that this is not me giving up. Not even on my worst day am I going to give up. The thought of heaven and not having CF is wonderful, but at this moment I have too much to live for.
Now with that said...
I planned my funeral service. For those of you who want to get upset at that....sorry you can't because I already told you I'm not giving up. I pray that I don't have to use this for awhile. But it will make life a tad easier for those I leave behind, there really won't be too much to talk about because my wishes are written down. I have made sure to include my loved ones while planing this and making sure there is a special something that will let them know I love them...and I am sure those I did it for will know what theres is so I probably won't spell it out for the world to see because its not important for the world, but for my loved ones.
I would like 1 "full" day of viewing and the funeral the next day. I want to be buried where Laila will always be able to go back to, just in case she needs that. In lieu of flowers I would rather have money go to the CFF in honor of my family.
I will be wearing my beautiful JCrew dress that got a number off my bucket list. That dress is me, that dress represents what I did and how I beat CF as long as I could. My nails will be polished a FAB color and better be the best mani I ever had...hey if I am gonna look bad, I'm not gonna look bad...you know what I'm saying. My eye shadow will be a pretty brown shade, but please not too much because I don't want to look like I'm trying to hard (haha....come on you can laugh at that!!!) Now my hair: this one I was unsure about, but I decided I wanted curly hair because well I was told I looked pretty with curly hair! I don't want to be buried with any jewels on besides some stud earring that nobody would want (but they MUST be sparkly!) The jewels that are put on me will be taken off and given to certain members in my family.
Now for you guys: YOU WILL NOT WEAR BLACK. There will be little to no mourning you got it. I am not telling anyone how to feel, because I know I can't...but I can ask you not to wear that sad color. If you do choose to, you better wear a pop of color that screams HAPPY...think hot pink here. This is a celebration that I beat CF as long as I did. A celebration that I am now with my Savior and feeling no pain. No "sorry for your losses" but rather a "so happy she is with the Lord now." My family will most likely need you, please take care of them and help them feel and remember joy.
I have people picked out for the service and for things in the service, but would rather just kind of keep that to myself and the 2 people who helped me plan, I just feel better about doing that. Plus is depends on when I go to heaven who is still around...if you get what I am hinting at.
My sermon text: 1 Corinthians 13: 13 (which happens to also be my conformation verse and my moms. Plus I have the symbol tatooted on my body of FAITH HOPE LOVE with my schnisters.)
Lessons: Romans 6:3-10
Revelation 7: 9-17
Gospel: Luke 8:40-42, 49-56
Hymns: 219 (sung at the beginning of service by a soloist or if they would the SEM students)
http://www.breadforbeggars.com/2013/04/26/lord-when-your-glory-performed-by-wisconsin-lutheran-seminary-chorus/
214 (but sung from the tune by thaxted and special instructions for certain verses)
http://www.youtube.com/watch?v=0th-KRASl20
120 (vs 1,2,4)
498 (sung before the sermon)
599 (but from the Lutheran Hymnal...the red one that I am pretty sure only one awesome church still uses.)
So there you got it, the gist of what I have planned. Hope you all can make it (come on you can all laugh at that too!!!) #96 Help write my funeral service
