No place like home!

I have been home for two weeks now, and the feelings that I have had are completely and totally indescribable!  I mean that.  I just don’t know how to explain the thoughts and feelings that I go through daily.  It was just two weeks ago that I had a bronchoscopy done.  The bronchoscopy is a small surgical procedure where they insert some device down your throat and pull out 4 or 5 small pieces of lung tissue to check for rejection of the lungs.  This is the last step before allowing a lung transplant patient to go home.  It was a Tuesday, and Jayden and Josiah were both so excited that we were finally going to be a family together.  Well, I was so sad when that day, I got the call that I am dealing with A3 Moderate Acute Rejection.  So, I had to go BACK into the hospital for 3 days to take 3 days of heavy steroid treatments which are used to really try to trick my body into getting rid of the rejection.  And in most cases, it should take care of things.  The lung transplant team is very proactive and really on top of these things, so I trust them and the procedures they use to handle these things.  Rejection is a scary thing, but we are in the beginning stages, and I am just having faith that it will all work out.

I told Jay to go home to be with the boys during my three days b/c I could not handle the thought of disappointing the boys again.  I kept in touch with them a lot during those days, and I know they had an absolute blast with Jay being home.  Since May 5th, Jay had been in the hospital or hotel with me every single day!  So, they missed so much having their family.  Even though I wasn’t home, they had “home” again.  And I could not have been more happy.  On my third day, Jay and the boys came to pick me up.  Oh my goodness, was it a good feeling.  A scary feeling, though!  For all of those months, I had been in the care of my doctors and nurses, or right down the street at a hotel.  To go home where I didn’t have that care was pretty scary at first.  But, I was overwhelmed with excitement and just wanted to lay in my bed and see my house!!!

I remember that driving home felt like a dream!  I was looking at familiar things that I hadn’t seen in so long, and it felt weird.  When we got close to our home and drove into our edition, I remember just breaking down in tears.  I couldn’t control my emotions and could barely find the strength to get myself out of our car b/c I was just staring at my house telling my husband how much I never thought I would ever get home to our home again.  It was almost like I forgot what my house looked like and what it felt like to be home.  SUCH an indescribable feeling.  The outside of my house was decorated beautifully by my friends, and that was so awesome to see.  But…walking inside my house was like nothing I have ever experienced in my life.  I literally could not stop staring.  I was really weak and exhausted, but walked upstairs and downstairs…sat on every bed…tried out every couch…opened every drawer…stepped onto our back decks…and tried out just about everything in the house.  I was so unbelievably emotional and couldn’t hold myself together.  I just really and truly couldn’t wrap my mind around the fact that I was home, and even better than being home…I was BREATHING!!!  And I didn’t have oxygen equipment all over my entire house!!  My oxygen equipment had just about overrun my house, it seemed.  And I couldn’t believe how open and clean my house looked!!!  Not to mention that my amazing friend Tina spent the last week I was gone completely and totally turning my house upside while deep cleaning, organizing and sanitizing to make sure it was safe for me to come home.  It looked absolutely beautiful, and to say that I felt blessed isn’t even sufficient of a word to explain it!  It was 2 in the morning that night, and I was still laying in bed crying with my husband telling him how much I couldn’t believe that I wasn’t dreaming, and to please tell me that it really was happening, etc.  I kept getting up out of bed and just walking in to check on the boys.  Just being able to walk in and see them sleeping peacefully knowing that they would wake up and come into my room to get me was such a feeling of excitement.  Heck, EVERYTHING was such a feeling of excitement!!  I WASN’T ON OXYGEN!!!  I could go to areas of my house where I hadn’t been able to go in a long time!  I didn’t have to stop and rest every 3 feet.  I could just slowly walk place to place and enjoy the home and life that I built with Jay and could feel free to just breathe.

Four days later, I got a call from my Transplant Coordinator that I had to go back in to be hospitalized for a few chemotherapy infusions b/c my body was developing antibodies against the new lungs.  Again, these are things that happen b/c my body is just protecting itself against the organ that it sees as an intrusion.  I was SO sad that I had to go back to the hospital!  But, I know that these things are just protecting me and adding to the time that I will get to spend at home in the long run with my family.  So, I went and did my treatments.  I got REALLY sick from them.  Oh, it was so brutal.  I will spare you the details.  All I will tell you is that I was really sick.  Enough said. I went home the next day, though, and was back at my normal routine.  I will have these treatments for the next 6 months once a month as well, and hopefully this will take care of things.  The chemo is supposed to kill the cells in the body that create the antibodies.  So, after the 6 months, they will do another test to see if they are gone.  It not, we will continue on with the chemo and see what happens.  Just another step, but I am happy and thankful to have another step.

Since being home, I have been so blessed to be able to just feel like a mom again!  I am slow still, and my body is still so weak.  But, I am able to do things that I have not done in so long!  Just to clean up dinner with Jay or clean up the boy’s rooms feels like a miracle!  I find that I have trouble sitting still b/c I want to do everything myself!   Jay doesn’t try to stop me, either.  🙂  He has opened up to me that he used to have feelings of resentment a lot of times b/c he would have to do everything himself while I pretty much just sat in a chair and watched him.  It is completely understandable that he would have felt that way.  He worked all day, cooked and cleaned, and took care of the boys when he was home…and I did nothing.  He of course didn’t blame me, but the natural feeling would be of resentment, I would think.  Resentment towards the situation.  It has never been easy for me to see him go through this.  When we married 8 years ago, I was healthy and carefree.  I know that he didn’t bargain for all of this, and it has given me a huge feeling of guilt all these years to watch him go through this.  Especially considering I never would have known that he had ANY resentment towards the situation had he not told me now.  He always just took care of things and loved me and made me feel like I was no different then than when we met.  It is so easy for me to say that I am more in love with this man than I ever have been in our entire 12 years together.  And I know the feeling is mutual.  After going through what we have gone through together and what we will continue to go through together, there is nowhere for us to go but up together.  And I am so excited for what God has in store for our lives together.

We have been doing so many normal family things together!!!  We have gone to dinner, we have done parks, stores, etc.  I have gone to friend’s houses!!!  Things I haven’t done in over a year.  I wear my mask in public, and some people run from me like I have a contagious disease.  Ha ha.  But, that’s okay.  I have worn oxygen for so long and I am used to it.  Staring doesn’t bother me any.  And the awesome thing is that Jayden and Josiah have been noticing my new abilities!  Everything is like Christmas morning to them, too.  Just yesterday, I was slowly walking around the house “chasing” the boys, and Jayden kept saying, “Mommy, you are doing so good.  You are almost running.”  The smile on his face is just PRICELESS.  And Josiah always pulls my shirt down to look at my scars and tell me that my new lungs are good.  It is just so unbelievable to see what a joy these boys have and how much they appreciate having their mommy back.  It was getting to be really hard on them, and now they can both just go back to being kids again.  As a mother, that is the best feeling to experience.  They are so small to have had to endure all of this already, and I just want to take all of that pain and all of those memories away from them.  The reality, though, is that our lives will be different no matter what.  Twice a day I take what feels like a million pills.  When the timers go off in the house, both boys run around and yell, “Mommy!  You have to take your pills!!”  And they run and get me a drink and make sure I am taking my vital signs, etc.  And they know that I have a lot of doctor appointments and that if I ever get sick, I have to go back to the hospital.  They wash their hands about a hundred times a day, and they do it well and with no complaint!  They have adjusted so well and are the best little boys I could ever ask for.

Jayden asks a lot about things.  He brings up the day that I had my seizures in the house and was airlifted to Iowa City.  He asks, “What happens if you start shaking like that again?”  And I always just tell him that we have to take one day at a time and that God will protect our family.  He still tells me that he thought I was dead then and asks about what will happen if I die and he will miss me.  This is very hard, but he knows more than a little 5 year old should know.  I can’t change that, so I do my best to be honest with him.  My view on things is that I just take every day as a gift, and we will do as many fun family things together as we can.  We will take advantage of this amazing new gift of life that we have!  It is an extension on a death sentence that I had because of a horrible lung disease.  The truth is that LAM would have taken me out of this world by now.  By the grace of God and the generosity of my donor family, I got my new lungs and have an opportunity to enjoy more life.  How much more??  It’s not up to me.  That’s up to God and science.  Now, try explaining THAT to a 5 year old.  🙂

So, anyways…I am just enjoying life right now.  One day at a time.  Absolutely loving every minute of it.  I hate that I don’t have freedom yet b/c I still have “babysitters” 24-7.  I can’t be alone right now, and I hate that.   I do a lot of rehab and have a lot of doctors appointments, and I have lots of side effects from all of my medicine that I don’t like.  BUT…can I really complain about all of that when I am breathing and enjoying life again???  I think I would be crazy to complain.  So, I won’t.

Thanks for reading!  I have so much to be thankful for, and I just will say one more blanket “thank you” to everyone for all of the support.  I received so many cards and encouragement while I was in Iowa City.  I had friends that stayed at our house with the boys while we were gone to keep some stability with them, Tina that kept my house in order, my neighbor that mowed our lawn, people that brought the boys up to visit us, and the list just goes on and on.  How would we ever have done all of this without you all?  We just could not have.  There is not a day that goes by that I am not thankful or brought to tears over this.  I really don’t know if I ever will stop feeling like I am dreaming, and I don’t know if I want to.  I think everyone should live like they were dying.  I took so much for granted before I had LAM and before my hospitalization, and I know that in my house, every day will be treated like a gift going forward.  And I hope everyone else does, too.  It really is the best way to live!

Thank you Lord for my second chance at life!