My Moments to Breathe

Wednesday, September 25, 2013

What a party to plan

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 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)
            214 (but sung from the tune by thaxted and special instructions for certain verses) 
            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

Tuesday, September 17, 2013

Another round

Starting a new round of antibiotics always makes me a little blue. 

I am sure it is so many things all mixed into one, just all bottled up and ready to come out in a cry. It ranges from the fact that I will have tape on my skin for at least 2 weeks, to not being able to shower easily, to having to stay up late and wake up early, to things not being normal, to be going down hill farther without a transplant, to be getting so sick that the worst happens: death.

Now let me go back and say I am not scared to die because I know what awaits me. Heaven and my Saviors opens arms. But I am scared of all the things left undone here. How will Jeremy be? (he will have to raise a crazy girl, he will have to work and then come home and cook, clean, he will have to find a new wife...yes he already said he would.) What about Laila? (I can't even start on this one...I will just say she NEEDS a mom...HER mom!) My parents? (Now that I am a parent I couldn't imagine burying my child.) My sis? (We have gone through everything together and she would have to do things without her sister now.) My best friend? (we need each other more than normal friends need one another!) What about my aunts, uncles, cousins? (I have seen what death can do to a family and feeling people have and I never EVER want my family to have to go through that again.) 

It is the things that make me sad that I know I need to try and forget, or really even better (as Laila has re-taught me) to pray about it. The next 2 weeks are going to be crazy and I know that I am going to have to sit on 02, breathe, eat and do EVERYTHING for my health. It is OK to skip a moment of fun, or to eat leftovers, its OK to ask for help. 

I have 2 more hours til I Jeremy has to stick the needle into my Port and I am trying to just enjoy the air on my skin, and Yes, I did take one last easy shower. This stuff can easily play mental games with you. Sorry everyone, I wish I was as strong as I can seem, but tonight I just am not. I know some of you are waiting to see what I am getting crossed off my bucket list (and it isn't the most fun and I know a few people who will get upset, but its what I want to do!)

Dear Lord, please make me strong!

Monday, September 16, 2013

Her child-like faith

It is amazing what even your 4 year old can teach you, or I should say RE-teach you. I have been very humbled the last 2 days and reminded me where to turn to when I am feeling down.

Laila's faith has grown a tremendous amount lately and as a Lutheran parent this thrills me beyond belief and makes her dad very proud. She talk about Jesus a ton and will tell us all about the lessons so has learned, what they talk about in school, and for the last month or so has been having Jeremy read her her children bible before bed. But my favorite part is how she has been turning to prayer when she is thankful, wants to ask God for help, or really and truly she just wants to talk to him. Here is a prayer she had me write down for her:

Dear Jesus

I want you to come back soon and take us back to heaven with you. I want you to pick us up to go to heaven to see us there and I want you to take everyone to heaven. I want you to take everything, carrying us first and everything second. And thank you for sending us to heaven and dying on the cross. Please help Daddy feel better and make Mommy's smelling come back. And take away Mommy's Cytsic Fibrosis to feel better. Thank you for letting Jesus die on the cross.


Just read that. How can you not see her faith pouring out in every sentence. It isn't a prayer that has elegant words, or written welll, but who cares because it came from her heart and she meant every word. (She also drew a picture of her family and Jesus too...beard, robe, and all that!) I love this and it makes me realize I need to pray a little more and put my faith with this transplant and CF with my Savior. If my four year old can do it and say it proudly, I should be able to.

Oh to have that child-like faith. I love you Laila, thanks for reminding me doll face!

Thursday, September 12, 2013

Lungs I need you

Sitting on more and more oxygen and needing to do my nebs more than I have....must mean its time to think about another round of antibiotics. I am back to the point with the transplant process of thinking how I need to lungs soon because living with this health is not a way to live. 

My lungs are getting so heavy. So heavy that my posture is getting worse and I look forward to Jeremy coming home so he can lift them up for me. Sounds weird but he squeezes my chest and lift the load upwards. It takes so much weight and pressure of my chest that I can breathe for that little bit with some ease. Suffocating is very uncomfortable. 

But I am trying to not think about that and stay the fighter I know I need to be. To continue to do things I love because it helps. I am still cooking. I am still taking Laila places she enjoys. Still going out with Jeremy. Still trying to keep my house in some what order. Still do things "normal" people do. Sadly, it is getting harder and I run home from WalMart gasping for my oxygen. Maybe its time to bring it with me. But then I get the looks and it just makes me so upset. I WANT TO BE NORMAL....HEALTHY. 

I know that once I get lungs I will still have problems. I know that I will still have tons (even more) meds. I know its by far not a cure. But I also know that I want air in my lungs, I want to breathe, I want to feel semi healthy. On my worst day I want to feel 10x better than I do on my best day now.

I am ready...ring phone, ring.

Friday, September 6, 2013

Updating the Before Heaven List!!

I am finally updating my blog about my "100 list." I am so sorry to those people who have helped me and I have slacked on this. I know that none of the people are expecting a big blog so that everyone knows how wonderful they are BUT I am gonna finally write it anyways because all these people truly are wonderful and are some of my favorite people in the world.

First off, I got an outfit from JCREW! For my 30th birthday I got this awesome gift from my Aunt...with an awesome note on top! She bought me a fabulous dress (that honestly fits me like a glove, people...and thats hard to do!) and a sparkly bow belt to match. I am so in love with this outfit. I wore it for Easter, a few Sundays, I am wearing it to a wedding tomorrow, and well I plan on wearing a lot because it makes me feel sophisticated and ladylike! Thank you so much Diane. I love you to pieces and am so glad that my Uncle married you so I could have you (and your boys and Haley) as my family too! Plus my wonderful friends Jenny, Brian and Kieron have helped me be able to add to this wonderful dress...maybe some shoes or cardigan!! So thank you all for letting me cross off #16 Buy an outfit from JCrew (and rock it!)

One great thing with having a camera is taking tons of pics, the bad thing was I had no place to store or edit them. But, WOO HOO, I got a laptop and was able to do all my work on there (and not have to hog Jeremys for hours!) I still want to put a few cute little personalized touches to it, but because I am so indecisive I haven't been able to do that. But 2 sisters helped me with this purchase and I can tell you (and I know if you know these 2 girls you will agree...) you will NEVER EVER find 2 sisters that are so wonderful and giving and such amazing friends. THE GRAVES GIRLS!! Stacie (yeap, my bfff) and Stephanie (the momma to my first Godbaby and one day Laila's future Mother in law) are beyond words. Seriously I can put them into words because whatever I would say would not do it justice. Trust me! I love you both so much and miss you all the time. Thanks a million for helping me cross off #31 Own my own girlie laptop!

This is a picture my friend Rachel took. Check out her facebook
page Rachel Z. Photography
Again to go with my camera and now my computer I was given the gift of a photoraphy class with Snapshots  of a good life (link below!) online. Such a cool class!! I learned so much, and even though I was so sick I was not able to keep up with it (putting pictures up on time!) I was able to print all the material, look at everyone elses photos, and be able to have a binder full of awesome information to go back to! Thanks to Rachel (my friend for over 20 some years!) and Karen (who was the teacher of Snapshots of a good life) for making this happen! I will for sure be taking more classes or workshops because I couldn't get enough, just LOVED IT! You girls helped my passion of photography rise even more. Now I can cross off #76 Take a photography classs. And like I said, hope to be able to do it some more!

I am still in the process of a few of these wonderful #'s, and thanks to all those who have been helping!! I am working on a few and even though you volunteered your time and service, if you will, I am working on making them all perfect! My teeth are almost white, my skin still has ups and downs, I WILL start eating foods from all the states, I am calling my family tree as almost done, and I am waiting til after transplant to FINALLY get those awesome jeans tailored (hoping I will gain some weight!!!) Thanks so much everyone who is so willing to help me. I appreciate it and man is it very humbling!

Getting things done and it feels great!

Tuesday, September 3, 2013

It didnt ring...yet

I think sometimes I set myself up for disappointment. And I feel like I did that this weekend. I packed my bag to the brim including my phone charger because I convinced myself that this was going to be the weekend I got my call. I cleaned my house and painted my nails so that it would be one less thing to cry about. I convinced myself so much that I have had so many dreams about it, good and bad...even woke up in a sweat this morning. 

I am trying to tell myself exactly what Jeremy has reminded me, in a nut shell to just move on because my life is the same as it was before the weekend started. I just swore my phone was going to ring early this morning. All I got was a wake up text from my sister. Needless to say I am going to try my hardest to just breathe and get the little disappointment out of my system. 

My grandma is doing somewhat better and the medication she received has helped a ton more than anyone had thought. Thank you, Lord. I am excited to call her later today and talk to her myself. She can still make me laugh and we are still able to joke...glad I got come of that Zell sense of humor (even if other people think its not so funny...)

I am very homesick right now and hate that I have no idea the next time I am going to be able to go home. I can't plan it because I just don't know. I miss my entire family, my old room, nasty chili fries, game nights, schnister time, my parents deck, tailgating with my dad, shopping with my mom....ok the list could go on and on. And this disappointment hasn't helped with that. 


Get over it for you, your husband, your daughter and for everyone else who you are going to have to talk to. I am not going to sit here and cry anymore, I am not going to sit here and think of what COULD BE, but what WILL BE.