it is well with my soul.

This week has been one I won’t forget anytime soon.
In fact it might be one of those that I may talk to my grandkids about in my rocking chair in 2070…haha let’s hope not. Jesus come quickly!

Friday night it all started. We went to the park and played wiffle ball- well I watched. During the events I started coughing, my cough is no normal cough, I was coughing up blood, a lot of it. I swallowed it all like I usually do and then threw it all up. Going to bed is usually my best bet. Saturday things just got worse. Around 9pm I called my mom barely breathing. Kelsey and jenni came to my room and called an ambulance. Soon there were about 5 guys in my room- hooking me up to machines galore; thinking that I was having a heart attack. Heart attacks are normal for this kid. Well, as always; the docs found nothing but “bronchitis” at the hospital. Screw that answer. I know better. Well, Sunday afternoon brought me back to the ER, not breathing again. This doctor listened some more and talked to my mom over the phone. Eventually, what this all came down to was that they cannot help me and my best bet is going to a big university research hospital. Which at this point I’d be down for…pretty much anything. Anything but a primary care doc who will just look at me and once again say “Jordyn, you are like no one I have ever met, you have a very unique case, and…” And that’s all, all they ever have to say.

I saw my critical care pulmonologist on Tuesday. My bronchoscopy results were normal as ever. He found slight bacteria from a pneumonia infection, but nothing serious. I always pray for it to be something serious. Serious means answer. Answer means help. And help means…getting better? Either way I am somewhat at a loss. My plan is to go home this summer. I also plan on getting some referrals to go to Stanford Medical and get some help there. San Francisco is not close, but it’s all I have left. I don’t feel like giving up anytime soon. Giving up in this fight would entail living in pain and being hopeless. Hope is what I thrive on. I will not give it up for anything.

I started my new block class today, Ruth and Esther is what I’m currently studying. We are learning about our Kinsman Redeemer. I know the Lord is able to take care of me, but I have been praying more for this husband of mine, wherever he may be. I know a day is coming soon when I won’t be able to take care of myself and I cannot depend upon my parents forever. I will wait for this helpmate for as long as I have to, I know my Redeemer will bring him to me when the time is perfect. I feel like I would have nothing to offer, nothing but love. Hopefully love would be enough.
In the meantime I am perfectly in love with my Savior, He proves to me every day that He is good and I have no place to doubt Him. He holds me and quiets me and wipes away my tears. He knows me like no one else and provides for me constantly.
On Friday I have an appointment with my cardiologist at 11:30, I’ll ask him about congestive heart failure. Maybe a new heart is what I need.

So I continue to wait. Life is a waiting game I guess. This week has been rough. Noah went to be with Jesus and I don’t think I have ever in my 20 years cried so many tears; I cannot explain enough how much I longed to hold that precious baby and see him outlast me, but the Lord has such a different plan. Noah doesn’t have to suffer. He is perfect now. And I cannot wait till the day I meet him; the Lord gave me a dream a few nights ago, it was Noah, he was beautiful and healthy, smiling. But it was not me that was holding him, neither was it Jenna. Now I pray that the Lord will hold Jenna so close to Himself during this time, that she will find this love that I have found in my wilderness as she holds onto nothing now. We do indeed have to lose our lives in order to find it. For me, I trusted in my health, and that in that I could do anything, and the Lord took it away from me and replaced it with Himself. But here in the wilderness I have found everything that I need. For Jenna, all she wanted was Noah and she held onto him with all she had, now all she has is Christ, this life has been taken away so abruptly. I pray that this wilderness leads her to promise.

Well, this is a much longer update than I expected but I must inform you all what’s been going on. I appreciate you all who have been praying for Noah and Jenna and myself as well.
“The Lord will fight for you and you shall hold your peace”-Exodus 14:14
Praise the one is mighty to save, to conquer and deliver we who are so small, weak and fragile.
From this heart that now beats with a different rhythm,
Jordyn

Noah Zion Creasy- April 27th 2010

Noah came into this world yesterday morning at 11:40 via c-section and was soon taken home by our Almighty God in the afternoon. The Lord gives and He takes away...we will still bless His name, because He still is good.

Dear Noah,
Today you went to be with Jesus. You put up quite the fight little guy. I found out and I wished that you were still here; but that was selfish. I wanted to hold you. I wanted you to outlast me, but Jesus loves you so much that He wanted to hold you much more than we all did here.
I grew very attached to you over these past months. And I found this new love for your mom that I never knew before. She’s a great little lady and would have given everything for you, well she did; the only way she could, by keeping you.
It was hard for me to hear that you were not here anymore; although you’ll never feel that pain. Your mom came to visit a couple months ago…we sat in a class together and I felt you kick your foot against my hand, you were so alive Noah. I thank God that I got to experience that.
I know my tears won’t bring you back, so I’ll stop crying and start thanking my Jesus that you are healthy and perfect and living in perfect peace. I love you so much little boy.
With all my heart,
Auntie Jordyn

nothing more.

i want nothing more than Jesus.
I want to love the God of the word just as much as I love the word of God.
this is a growing time.
i know nothing right now.
i don't know what my life holds. but i know that He has given me promises and He also wants me to dwell in them.
i know that this valley is only the shadow of death, not death itself.
and i know that He is with me.
i know He longs to hold my hand. and hold onto my heart.
He desires to breathe life into my hurting lungs.
and give strength to me when there is nothing left.
these things i know because i know that He loves me.
Satan can try to lie to me. well he did.
i believed him. and i had to ask for forgiveness.
i am waiting for Him to restore my soul. I know that He is leading me, I just don't know where. i feel helpless and useless.
june will come and i will ask my doctor what research hospitals are looking for people like me.
i will not stop praying for healing. i know that it is real because I have experienced it before. I have so much on my mind I could write a book this very second, but my day is going to be packed.
the Lord's love is really what overwhelms me right now. i know that it is real. He has kept me awake for 2 nights now. i sit up and watch out my window at the lights and wait for the sun to come up while i pray. i wait for the nyquil to kick in but it never does. there is a reason for this.

something amazing is happening here.
here in the wilderness. it may be lonely and cold, then scorching hot. i may have nothing. i may be hungry, but in my heart of hearts i know that God is good and no one can take that away.

I pray that someday I will be bold, I will be strong to speak. I know I need to share this. Maybe when I go home for the summer. because everyone experiences wilderness. we just do not know how to tolerate it. we still are more than conquerors, we have just forgotten.

from this brain that won't stop thinking,
jordyn ellyse

wilderness.

i have never in my life known such wilderness.
that picture you see above this post.
this is where i feel like i am at all the time.
in the photo, i could see someone ahead of me though.
the Lord has brought me to this place to humble me.
to test me.
to see what is in my heart.
deuteronomy chapter 8.
He is allowing me to hunger.
and He is feeding me with what I do not know.
I have nothing left but Him.
I want nothing but Him.
i'm sorry if you cannot relate to me.
if you have not been in these shoes, then don't try to.
the Lord will put you in them one day.

if you have been in this wilderness. but you are no longer here. remember the Lord your God who has brought you out of it. do not forget Him who is able to save!

i trust Him to bring me just as far out of this as He has brought me into this land of messes and chaos. because He understands me perfectly. He holds me. He holds my test results; yet allows me to suffer.

2 Chronicles 20:12- we do not know what we are about to face, but our eyes are upon You, because You,are greater!

as an update of sorts- i have no plans for this summer until april 29th which is my next appoint with Dr. Lee. He is my critical care pulmonologist. He will have my results from the bronchoscopy...and pictures too(so stay tuned). This will determine where I stay for the summer. I want to go home, only because I soon will need someone to take care of me.The only way i would be able to go home for the summer is if I could see an oncologist. the other doctors don't exist in northern california. well, they do, but only in sacramento and san francisco, which means it would be quite the drive to get some help when if i stayed here, i would only have to drive minutes to see a good doctor to help me.
so keep this all in prayer. no plans til the 29th.

wishes

i wish my heart could be as fragile as my bones.
unfortunately i have grown cold to feelings.
i'm sorry that i don't mind them as i should.
doctors have forgotten me and i have picked up their horrible habits.
to all of my friends and family.
don't doubt my love for you.
i love you more than my words or facial expressions can explain.
my blank stares may hurt you.
but in my heart a lot is going on.
my dumb heart doesn't know how to handle all the situations that are going on.
i am overwhelmed.
i feel sick out of disappointment of myself.
so please forgive me.
i may never change.
i hate to blame it on the changes, but sometimes it's all i have left to do.
my diseases have unfortunately made me a monster at times.
the devil tries to play games with my mind. don't help him.
i'm sorry if i've hurt you.
please let love be enough.

because right now it's all i have to give.

letters to the unborn

Dear Noah,
I was up all last night praying for you. It is still 10 days until you are born, but I have been praying for you for a long, long time, and I won’t stop anytime soon. I am very sick and I was in a lot of pain last night, maybe you were too, I think this is where God gives me a lot of compassion for you, maybe He keeps us awake at the same times. I don’t know if I will ever get to meet you face to face, or hold you in my own arms, but I know that your beautiful mommy will read this to you, hopefully while you snuggle her. I want you to get better little boy, real fast. But if you go home to be with Jesus before I do, it’s ok, you’ve had a long tough fight. You’re quite the strong man, I’ve seen your muscles on the sonogram pictures your mom has shown me, Noah, you are fearfully and definitely wonderfully made…Trisomy 18 has nothing on you.
Although we have never met, you have become quite popular. When I found out you were coming, I was in Italy, it’s a beautiful place, and there were and still are many people there praying for you. And there is a place in California where I met your mom called Calvary Chapel Bible College; Noah, there are more than 100 people I know that are praying for you here.

I want to sing this to you in person but I know your mom knows all the words and she’ll sing it to you, so if you get tired, if the nurses and doctors get to you just have her sing you this little diddle by James Taylor, it’s my favorite…Close your eyes, you can close your eyes, it’s alright. I don’t know no love songs and I can’t sing the blues anymore. But I can sing this song. And you can sing this song when I’m gone.
I love you Noah. You hang in there, stay warm and cozy. Welcome to the world little boy!

With all my love,
Auntie Jordyn

boggy bronchoscopy

as we already went over on facebook some college students party it up in cancun this week, others get their messy hair on with their slightly crooked glasses.
none the less it was great. i am here to talk about my bronchoscopy though.
wednesday i went back to inland valley hospital, where i was born( how weird is that!!) and had this mini surgery done.
i met a lot of new people, lot of nurses and pulmonary people, they told me Dr. Lee would take pictures of my dear little lungs if need be, but wouldn't waste film on anything perfectly normal. I prayed that he would waste film.
So, I woke up not too much later, the doc had talked to my mom, who had flown down from Sacramento the day before to be with me at the hospital that day, he told her that my left lung looked "Boggy(whatever this means) and the tissue was thin" so he took pictures!!!
All these little tumors that I have had have been on my right side of my lungs but apparently there was nothing too frightening over there.
but he washed my lungs anyways. sounds great. they don't feel too clean, but for my mind, it feels nice to think that they are clean.
So, I will see these photos of my lungs and hopefully post them on here sometime soon when i get in for an appointment with Dr. Lee. Hopefully he will have some sort of news for me. He told my mom that he is not quite finished with me yet. He has blood work he wants to do. just some ideas in general, which is always good. i like when doctors use their heads.
the Lord has been good to me.
He has put so many good people around me.
like too many to count.
it's really amazing.
right when I start to doubt Him is when He reminds me that He does hear me.
it's easy to forget. because my prayers get repetitive.

but thank you all for your prayers shot up on wednesday, i'll keep you updated on here for sure, with pics and all hopefully!

love you all.