How old am I?

Lilypie First Birthday tickers

Tuesday, September 25, 2012

When did we get here??

I keep asking myself this question. Along with How? and Why?

To answer these questions, I must face a truth that my head and my heart are in constant battle with. Yes-our precious little boy, our sweet and silly 2 year old, in-fact, has only half of a working heart. For at least the past year, we have rested in a peace that only our GREAT GOD can deliver. We have received blessing after blessing in our day-to-day lives since Jonah's recovery from his Glenn surgery. But this "comfort zone" that we have become so familiar with and...have enjoyed so immensely seems to be crumbling underneath our feet. I don't like it. I am really scared of it.

When I think of the How's and Why's of Jonah's heart, I actually feel very content. Very confident. I know without the shadow of a doubt that Jesus has given us the most amazing gift in our son's life. When I was about 22 weeks pregnant with Jonah, Rob and I had a very discerning conversation with God. Right there- in the waiting room of the doctors office. From that moment to present day, I have felt free of the burdening thought that anything different from Jonah's life being the most joyful and successful is even possible. But as I think of WHEN we got to this point, only days away from his 3rd planned open heart surgery, I must admit that I am very scared. This fear keeps creeping in. It seems heavy. And these are moments when it is my head that wins the battle. For, surely, it is my heart that holds that sacred place of peace.

I get so sad when I think of the tease that is the time we've spent between Jonah's Glenn and Fontan. How did it go so fast? Did we make every moment count? When I really wrestle with why I feel so scared and so sad, the one thing I keep coming up with is having to watch Jonah go through this difficult procedure. It has been our privilege to guard and to protect him, to love and to nurture him. We  are totally wrecked with the idea of letting him go...into the hands of his surgeons, under the abyss of anesthesia, to experience and endure the pain of recovery. We want take to take all of that away from him and take on all that weight upon our own shoulders. But if there ever was a 2 year old who can handle all of this, it is our mighty warrior. We have said this before, but when Jonah is faced with any kind of adversity, even the slightest bit of challenge... he will flourish...he will overcome. Any parent we have ever talked to, that of a child with a CHD or not, says that these types of life events are always harder on Mom and Dad. So much harder...I am not sure I even want Jonah to know. I want him to think of us as his brave and fearless parents.

With that, it seems like I have taken all of you on a bit of the emotional roller coaster that we have been on since waking up this past Sunday morning. I can't tell you how exciting it will be to get off this ride, to get on the other side of the Fontan. The anticipation of it seems like cruel and unusual punishment but we will get to the other side. And we will be witnesses to yet another miracle in our lives!!  Of this I am absolutely sure!!! I know 5, 10, 20 years down the road we will be asking ourselves the same question..."When the heck did we get here??" And then Jonah will recount all of the memories of his triumphant life from kindergarten, to college, to marriage...and we will wonder no more. Praise God!

We love you to the moon--

and back, little buddy!!!

Wednesday, September 19, 2012

Summer Fun and, oh yeah...the FONTAN!

Well, well, well. Here we are- 3 months since our last post! After Jonah's heart cath in June we received a "courtesy call" from Hope wondering if we would like to schedule Jonah's Fontan. At this point we had discussed our thoughts for holding out until October with our cardiologist. There did not seem to be any major red flags from the cath results so we we received the green light to enjoy the summer and schedule a later date.

And that date is......Drum roll, please......October 1st. That's right- 12 days!!! Those words sound like jibberish to me right now, but there is no denying it, summer is over, fall is beginning and we are kicking it off with a bang. We couldn't run from it forever. We can't ignore it and pretend like we are the parents of a healthy child with a whole working heart. The fact is is that we have to face this. We knew this day would come. But before I tap in to the emotions that come along with this day, we want to share with you some of the fun that we had this summer. After all, we were so blessed to have enjoyed the summer as we did and make the memories we have without the threat of another surgery hanging over our heads.

At the end of June we took a vacation with my family to Holland, Michigan for a week. We rented a house right off of Lake Michigan and packed in 8 adults, 2 kids and 2 dogs just a short 3 hours away from home. Jonah experienced alot of firsts during this time...cruising in...& driving Poppa's boat, fishing, roasting marshmallows around the campfire, and building sandcastles at the beach. But the most exciting could have been going to bed and waking up in the room adjoined with his cousin, Nola, which included running the length of the house in hysterical giggles.

We were honored to celebrate this blessed little boy again on July 30th, Jonah's 2nd birthday! This year was a smaller gathering short a few close family members due to their being sick that same week. The day brought a pleasant reprieve from the scorching heat we had all summer which was perfect for a party. To say the least, Jonah really loves anything in the family of cars, trucks, buses, trains or tractors. On a road trip to MN in May we played the movie Cars for him and he has since become best friends with Mater and McQueen...and all of their car buddies too;-) Around the same time Woody and Buzz joined the group and the movie Toy Story 3 had a permant spot in Jonah's DVR list. I mention this because we had the most adorable birthday cake made for him and it was, of course, Cars-themed. It must have happened sometime this spring when Jonah's reaction to or recognition of something he loves made his eyes absolutely dance with excitement that Rob and I seemed to indulge in the moments that provoked such joy. It is absolutely impossible to resist and utterly priceless. This birthday was full of those moments.

With the blistering heat we had this summer, we became regulars at a few local pools. To be honest, Jonah's very first pool experience was not all that pleasant. It was indoors, in the spring, but it was chilllly. On a 90+ degree day at the waters edge of a comfortable zero depth pool- Jonah found a new love for swimming.

We visited the Lincoln Park Zoo for the first time too. Next to cars, animals of all varieties are favorite of his.

Most recently, we took the kids for a ride on our Metra train. We don't live far from our train station which is very nice. Seeing how much fun Jonah had taking the choo-choo a few stops heading East makes the daily morning commute for Rob a little more cheerful:)

Finally, this summer included spending lots of time with family and friends. I can't think of anything more nostalgic than letting the kids stay up late on a hot summer night, running around in the yard with all the dirt and grime from the days play on their hands. So fun!!

P.S. I finished this on my phone so the format of this post is kinda weird;)