Only 4 weeks to go!!

I have 4 weeks left to go until I can get officially on the lung transplant list!!  I can’t wait!  All of the rest of my testing came back good, so I have nothing standing in my way.  I have been off of my medication (sirolimus) for about 3 weeks now, and everything else is in order.  Now, I am just lining up child care for months of my absence for my children, and I am trying to get so many other things in order as well for my husband to just be able to pick up where I left off.  If I am being honest, relinquishing control of things for a great period of time is difficult for me.  I am kind of a control freak.  But, I am trying to put my trust in God and in those around me who I know love me and will help us in every way they can.  Jay’s parents will be taking the primary role with the boys, and so many of my other friends will be doing weekends with them, etc.  So, I think this will all work out fine.  Now, if I could just quit having panic attacks all the time, I would really be fine!!

I have to say that in the past day or two, I have really been feeling excited about my second chance at life!  I have taken for granted my entire life my ability to get up and go!  My day is so difficult every day right now, and when I think about what it was like before, I almost can’t remember b/c I didn’t appreciate it!!!

LAM is described as running around a room for 2 minutes with a plastic bag over your head, and then stop and try to rest and catch your breath by plugging your nose and breathing out of a straw.  When I wake up every day, I take my inhalers and pray that I can get up and function soon.  My lungs hurt so much in the morning, and then I don’t even know how I will get up and start my day!  I am so out of breath.  All day.  Out of breath.  Every step and every move I make is calculated.  Sometimes, all I want is to be able to get up and go do the dishes.  Or, go play a simple game with Jayden and Josiah.  Or, walk up the steps to get something that I forgot!  Oh, the steps…The steps look like a mountain to me.  My day is spent sitting in one chair usually and getting up with HUGE difficulty to feed the boys lunch and be with them.  And all the while, I am on a 50 foot cord that leads to my oxygen machine.  I feel like a pet on a leash.  It is a horrible feeling.  And I can’t step out of my house without my leash!  It is mortifying sometimes.  When my tubing gets ripped out of my nose.  Or when I am stared at by people who don’t even try to look away when I make eye contact.  Yes, I am young.  Yes, I have kids.  Yes, I have oxygen.  Yes, I look completely normal.  I used to get upset, but now I really do have compassion and see that most of  the time, people are generally concerned and feel bad.  But, it is not any less embarrassing either way.

I can’t wait to be a normal mom again.  To get up and go with them.  I want to be able to leave the house with them and take them fun places!  I haven’t gone anywhere alone in so long!  I am home alone with the boys all day long, and I wish I could take them to fun places and allow them to play.  But, I haven’t been able to pick up Josiah since he was 8 months old, and I couldn’t even walk after him–much less run after him–if he ran away.  So, I do my best to provide fun things for the kids to do every day at home, even though all I really want to do all day long is lay down and rest my lungs.

I am 28 years old, and I just want to feel 28 again!  I hate not being able to walk across the room without feeling like I am gasping for air.  It takes me a good 2-3 minutes to catch my breath before I can walk further or have a conversation with someone!  I hate having to choose between taking a shower or cleaning a room.  I hate that I have to ask my 5 year old to do so much!  Jayden and Josiah both, actually.  They both do so much every day to help me and accommodate me!  They are so willing and so kind to me, and do anything and everything I ask of them.  But, I just wish they could be normal boys and play and make messes and I could not worry about it.

I say all of this b/c LAM has dramatically changed my life.  We all know that.  BUT, I am so thankful b/c I know that when I do receive these new lungs, I will NEVER EVER take them for granted.  And I encourage anyone reading this to see what I am saying!  Being able to breathe is something that EVERYONE, including myself, took so much for granted.  But, when it is taken away, it all changes.  I look back and wish I had never complained about anything in my life.  I was so blessed and healthy before, and I didn’t even realize it.

So, today, when you are able to just get up and go or play with your kids, or walk the mall, or walk up your steps with ease, or go to work or just go somewhere in public and be with your friends casually…remember to be thankful for it!  Cherish each day!  I know that living with a terminal lung disease has made me even appreciate the days I have now.  I am thankful for each day that I can begin with my boys and husband.  And to actually be able to breathe while I am doing it will be all the more beautiful.

Life is not measured by the number of breaths we take, but by the moments that take our breath away.

Author Unknown