Graduation & New England Fall Trip

It’s hard to believe it’s been almost 2 weeks since I discovered that the symptoms I’ve been experiencing for the last few months were actually Eli’s heart getting ready to say goodbye. 

First, I want to thank all of you that have sent your well wishes, prayers, cards, love, food deliveries, gifts etc.  I’m overwhelmed by the abundance of love and generosity being poured on my family and myself.  I’m very grateful for every single one of you and feel so blessed by knowing you and having you love on us.

 And just so you all know, I too was taken by surprise with this news.  Logically I knew it was something that would happen someday, but as the years went by and I continued to experience God’s graces, and good health, I suppose I got the “I’m invincible” complex that most teens seem to have J  (Guess I’m just catching up with what I missed when I was 17). The thing is…God doesn’t make mistakes and this too has a purpose.

No “new” news yet, really.  I have a transplant clinic appointment Wednesday to get some questions answered, hopefully, about symptoms I’m experiencing, and then transplant logistics etc.   It’s been 25 years so I’m guessing there’s been some changes.   I also have an appointment Thursday for my first round of “basic” tests.  The limbo part is just the beginning of waiting…

I’m exhausted…my body feels like I’ve run a marathon and it’s only afternoon and all I’ve done is lay in bed  most of the day working on projects that I’m trying to finish in time.  In time for what?  I don’t know, but at least I can cross them off that huge to-do list that was whittled down 10 days ago because there is no way I have the energy for them. (Besides-they weren’t that important anyway)

I’m surprised by how quickly my energy levels are depleting.  Yes, I’ve seen it drop even in the last two weeks.  I’ve found that if I recline back throughout the day, or lay down, my symptoms lesson, so I pretty much am kickin’ it Roman style most of the day.  Thankfully I have a laptop and it has been relocated to my bedroom.  My mornings are spent having coffee and a light breakfast, and doing my devotions/prayer time at a café style table by our living room window.  The table was set up there in April for Chris & Rene’s 50^th Anniversary dinner and it has remained there since then.  It’s one of my favorite spots in the house.  I then go around gathering my projects for the day and return to my room. During the day, the kids come hang out with me or bring snacks or perform various other tasks for me.  For the most part, they’ve been real troopers, and I'm impressed daily how compassionate and helpful they are.

And just so you all know, the kids know that Eli’s heart is tired and that I’m getting tests done to see if I can get back on the transplant list for a new heart.  They’ve been front row spectators to my declining health the last few months.  Different tasks mom can’t do anymore.  Additional chores I’ve needed help with.  For now though, we’ve not connected the dots for them about what will happen if a new heart isn’t found or if I don’t qualify.  I think subconsciously they know, but we’re keeping this positive and taking one day at a time.  And letting them know that we are giving this all up to God to decide.

Another thing I’d like you all to know is that this time around it’s changed.  I was sickly before the last transplant, I didn’t know any different.  Now-I know.  I know the reason for the cough I’ve had since March.  I know that the somersaults in my chest don’t feel right.  I know that the waves of lightheadedness aren’t normal for me.  I know that the pressure in my chest signals it’s time to lay down.  And it sucks.  It sucks being healthy and then getting sick. 

It was so much easier the other way around. I can now relate and empathize with the majority of heart transplant survivors that were knocked off their healthy feet, as their hearts deteriorated.  And the multitude of other people who have been healthy all of their life & then all of the sudden-wham!  A brick wall called cancer, diabetes, MS, Lyme's disease, etc. overtake their body and their world and life is forced to make a 180 degree turn and plans are postponed or cancelled, lives are altered.

But the other difference this time around:  my support system-it’s HUGE!  Seriously, I’m in awe of the offers and generosity of others.  I am truly feeling blessed.  I had a lovely evening with some of my “besties” on Friday and they took superior care of me and spoiled me rotten. And on Saturday & Sunday, I had a virtual girl’s night with friends across the country.  These friendships and the many messages, cards, phone calls, visits, texts...etc. only confirms that whatever may come, Scott and the kids have an awesome support system, as do I. 

Ok, it's time to rest.  I love you all!

The following lyrics are from a song Nolan keeps going around the house singing lately.  We’ve been gearing up for some lip sync battles in our house & this is the song he chose over the 4th of July weekend off my I-pod, out of the over 500+ songs I've stored on that thing!  Listen to it on the web when you get a chance :)

Shoulders

By For King & Country 

When confusion's my companion
And despair holds me for ransom
I will feel no fear
I know that You are near

When I'm caught deep in the valley
With chaos for my company
I'll find my comfort here
Cause I know that You are near

My help comes from You
You're right here, pulling me through
You carry my weakness, my sickness, my brokenness all on Your shoulders
Your shoulders
My help comes from You
You are my rest, my rescue
I don't have to see to believe that You're lifting me up on Your shoulders
Your shoulders

You mend what once was shattered
and you turn my tears to laughter
Your forgiveness is my fortress
Oh Your mercy is relentless

My help comes from You
You're right here, pulling me through
You carry my weakness, my sickness, my brokenness all on Your shoulders
Your shoulders
My help comes from You
You are my rest, my rescue
I don't have to see to believe that You're lifting me up on Your shoulders
Your shoulders

My help is from You
Don't have to see it to believe it
My help is from you
Don't have to see it, cause I know, cause I know it's true

My help comes from You
You're right here, pulling me through
You carry my weakness, my sickness, my brokenness all on Your shoulders
Your shoulders
My help comes from You
You are my rest, my rescue
I don't have to see to believe that You're lifting me up on Your shoulders
Your shoulders

My help is from You
Don't have to see it to believe it
My help is from you
Don't have to see it, cause I know, cause I know it's true