So apparently Steve Jobs co-founder and CEO of Apple Inc. had a transplant recently too. He made a surprise visit to Stanford last Friday along with governor Schwarzenegger to "push organ donor registry."
You can read the article about it HERE
In the past some of my close friends have told me they always knew when I was in a crowded room because of my one-and-only-distinctly-Leah cough. I was always hacking. Whether I was aware of it or not, it just came along with the territory of being me.
Coughing didn't really bother me too much, after all, I was born with a cough and coughed my whole life. I was pretty used to it. What bothered me more was how yucky it sounded and how everyone always thought I had a cold... or worse.
This past week Levi and I met up with our friends the Riggans to have a play date at the park. Levi wanted me to play hide and seek with him, and energetic person I am these days I was happy to. I ran across the playground to find a good tree to hide behind. I crouched there waiting for the two little boys to find me. They were taking forever because they are both too young to be good at the hiding part or the finding part. As I sat there I had a realization that I didn't need to cough! My whole life coughing didn't usually bother me except for the times where I was trying to hide or be sneaky. In a game like hide and seek where you run and then hide, I would get so out of breath only then to spend my whole time hiding trying to suppress my cough so as not to be found out.
This time was different.
I no longer cough! At all!
I'm happy about my new ability of being able to be sneaky. This might just come in handy...
Sleep escapes me. Coffee or espresso keeps me awake the day after.
I can see that it is a nice day out right now-- very nice in fact.
I'm kind of in a haze though.... a sleep deprivation haze.
I pulled another all-nighter. Not by choice.
I found out last night that my friend who I posted about HERE (a few posts down) passed away. I pray that she knew Jesus and that she is resting in peace. I was in tears over the loss of her. The second close CF friend I have lost in a matter of months. Oh, how I wish she had been able to get a transplant!
I am reminded at just how lucky I am.
These thoughts running around through my head didn't help my crazy brain last night.
Also, don't you hate it when you can't sleep, and you know you have to be somewhere early the next morning, so then you get all anxious that you can't sleep, which makes you even less able to sleep?
Or is that just me?
Well Levi had swimming lessons begin this morning, and by the grace of God we made it there, no sleep and all. The water was nice and peaceful and warm. I wanted to hop in and join the kids. Last summer Levi overcame the scariness of dunking his head all the way under the water. Today he was a little more hesitant but I'm thinking it was because he hasn't swam in so long. Hopefully he'll catch back up to where he left off last summer in no time. I know he will.
I'm just loving the time change! This morning I made dinner in the crock pot, set it to slow cook, and played all day! Levi and I hung out down at the beach. The weather was just gorgeous. We went on a long walk and found some tide pools with sea anemones. We always touch them to watch them shrivel up as they suck our fingers. I jogged a bit and it felt wonderful! We raced so many times. Levi wanted to climb on the jetty so we did that too.
Later after dinner the three of us went on a bike ride until after sunset. As we passed through the different neighbourhoods it smelled as if everyone was BBQing. I think summer is on it's way! It is days like today when I just love living in Santa Cruz.
Yesterday I officially completed pulmonary rehab! I'm done! I have been going twice a week ever since the transplant and yesterday I graduated! Yay!
Actually I really didn't mind going, and sometimes I rather enjoyed it. It gets me up in the morning and out exercising. So I may continue with the "maintenance program" that the hospital offers. It would still be twice a week, and if my insurance covers it it is much cheaper for me than buying than a gym membership.
If I do continue at this point it is no longer mandatory though.... just of my own free will... and I can stop at any time.
Can I just take a moment from the regularly scheduled programming to say something?
CYSTIC FIBROSIS SUCKS.
(I would use stronger language, but I don't use stronger language.)
Some of you already know this but in case you didn't -- take my word for it. I generally don't like to complain about this stupid disease I was born with. Although it has caused me much pain and suffering I fully believe that things could be much, much worse.
Tonight, though, I am fully reminded of just how heartbreaking and horrible CF is.
One of my childhood friends from CF camp is dying right now as we speak. She keeps getting turned down to be listed for transplants at different hospitals. She is not getting the "second chance" that I was able to have. The doctors have decided that she has too many complications to receive a lung transplant. Every summer we shared a cabin for a week, and I remember being closest to her than anyone else at good old Camp Pillfeather. She is a fun, bubbly person and it is just so sad to see her so sick and hurting.
Yes, CF sucks.
Tonight we were blessed to have another friend of ours drop by the house for a visit. She has always been such a blessing in my life... I love talking with her. Her walk with the Lord is so encouraging and she is not afraid to be real. She has always been nothing but gracious to me. She lost her son to Cystic Fibrosis when he was only five years old. This is particularly gut wrenching to think about as it is the exact same age my son Levi is right now. It is truly heart breaking and just plain old not fair. Knowing that that sweet little boy had to suffer, brings me to tears. She told me of how she would hook him up to his IV while he rode his tricycle around. That little guy had more to deal with than most adults ever have to. Despite her best efforts her son never got the chance to do so many things here on earth. I know how awesome of a mom she was (and is) and it just kills me that her son was taken from her and at such a young age.
Yes - CF sucks. Bigtime.
God has a plan for everything, and while I struggle to understand why He allows certain bad things to happen, I'm convinced that I won't be able to grasp that concept until I am in heaven. How can a loving God allow a child to suffer and die like that?
Honestly, I don't know.
I don't know why He has allowed me personally to be in so much physical pain. Back when I was feeling sick that is a question I would literally ponder on a daily basis.
I do know that there are reasons. I do know that we are not here by an accident. I do know that the God in heaven is a loving God who cares about us more than we even care about ourselves. I do know these things... but there are a lot of things I don't know. Why He allows suffering is one of them. I know God well enough to know to trust Him. To trust that He works out everything for good for those that love Him. I know that we live in a fallen world, and we have all sinned and deserve death. But the question remains... If God is God then couldn't He just change the way it is "set up?" Couldn't He make it so we don't deserve death? (He did actually by dying for us on the cross --- but that is a whole other blog entry in and of itself...) Anyways while this is something I struggle to wrap my mind around this scripture always comes to mind.
The Lord gave, and the Lord has taken away; Blessed be the name of the Lord. Job 1:21
I may not understand anything right now, but I choose to praise God anyway. In heaven our tears will be wiped away, and I hope we someday will understand in heaven. This is also a somewhat encouraging scripture to me:
Blessed [be] the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulation, that we may be able to comfort those who are in any trouble, with the comfort with which we ourselves are comforted by God. 2 Corinthians 1:3-4
Anyway CF sucks. It really, truly does. It is a way more intense disease than people realize. It is deceiving because people with CF look healthy even when they are not. But there is real suffering, pain and hurting beneath. CF sucks, but God is good. And although to many people that does not make sense, it is truth. For those of you that are Christians here is some scripture directed towards us regarding suffering:
Therefore we do not lose heart. Even though our outward man is perishing, yet the inward [man] is being renewed day by day. For our light affliction, which is but for a moment, is working for us a far more exceeding [and] eternal weight of glory, while we do not look at the things which are seen, but at the things which are not seen. For the things which are seen [are] temporary, but the things which are not seen [are] eternal. 2 Corintians 4:16-18
For I consider that the sufferings of this present time are not worthy [to be compared] with the glory which shall be revealed in us. Romans 8:18
And not only that, but we also glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope. Now hope does not disappoint, because the love of God has been poured out in our hearts by the Holy Spirit who was given to us. Romans 5:3-5
A topic so mind boggling and confusing as to why a loving God allows bad things to happen, it helps me to try to keep an eternal perspective.
I cannot see the big picture.
I cannot see everything at once.
I cannot see the future.
I cannot see outside of time.
Look what I found!
This is a very old photograph of Levi, but I just love it. I took this several years ago with my Holga.
We went kayaking and packed snacks and picnicked out in middle of the water. It was a beautiful way to spend a lazy Saturday afternoon.
I can't wait to do it again!
Today we met up for bagels with our friend Sue Sollee-Watkins. Back when I had my transplant Sue was reading this blog and saw the post where Seth asked for fundraising ideas. She couldn't sleep that night as she was praying and trying to brainstorm a way to help. She has made quilts in the past, and she said the Lord placed it on her heart to auction off a quilt she had designed to help us raise money for transplanted related expenses.
Sue was obedient to the Lord and began going around to different churches each week explaining my story and selling raffle tickets. She sold tickets 3 for 10 dollars to hold a raffle and the winner was to receive the beautifully crafted quilt she had put together.
Sue works at Dominican hospital as a nurse, and I had met her back when I would get my medi-port flushed in her department. Her wonderful co-workers and her held the drawing on March 4th at noon. They shook up all the tickets and had a patient who knew nothing about the raffle draw the winning ticket to make sure it wasn't rigged.
It just so happened that the winner was a pulmonologist (from the same local office I have been to) and his wife is the president of Domincan hospital! How cool is that?
Then they graciously decided to give up the quilt so Sue could give it to me!
Thank you so much to Sue and everyone over at Calvary Chapel of Santa Cruz who helped her with this. It has been such a huge and overwhelming blessing for us. Also thank you to every one who supported us by buying a raffle ticket. God used this to not only sustain us financially the months Seth had to take off work, but to teach us a lesson in trusting in Him and His provision when we are in need.
Sue told us that there are 192 verses in the bible that say rejoice, 18 say rejoiceth, 28 say rejoicing and 47 say rejoiced.
Rejoice in the Lord always. Again I will say rejoice! Philipians 4:4
My grandparents were here in town visiting for this whole week. We had a nice little time. Levi and my grandpa (his great-grandpa) spent hours playing together. Very special times. They were drawing together with chalk on the sidewalk and playing Legos for hours on end.
One of the days we attempted a walk to the park but got caught out in the rain and had to return home. Have I mentioned that I'm looking forward to warmer weather yet?
It has been one of those "normal life" kinda weeks. Busy week, and a very busy weekend ahead. I'm thankful for the energy to keep up.
Anyway, I just wanted to post something quick -- instead of nothing at all.