Xtra Special Heart: November 2012

Jeremiah 29:11 For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.

I have a forever ache. A feeling that is hard to explain. Its a combination of anxiety, panic, fear, joy and peace wrapped up in pretty paper. I have done my best to find it a place...deep in my gut. I have become an expert at hiding it..like an actor on a stage, convincing my audience that I am this carefree, fun loving person who prances through a perfect life. I can feel my ache..in my stomach, in my throat, even in my fingertips...There are a few people who can look into my eyes and see my ache, some who can hear it in my voice. I often wonder what others would say if they heard my internal dialogue.

"Does he look blue..wait is he breathing faster today. No he isn't blue its the horrible lighting in here. Why do I continue to dress him in blue? Those purple feet are going to send me over the edge. Why is he so fussy? COME ON, EAT!!! Why isn't he eating..is he in heart failure? Was that a cough? That was a cough..oh no he has RSV. Is he gagging? I REALLY need a pulse OX machine!!! OH NO..does MY throat hurt..I can't be sick. Did the OT just SNEEZE?????? A birthday party at a little gym..I wish!? Did they really all get their flu shots? "

And that was just this morning.

Nate has learned to manage my anxiety. He says it so gently..."Xavier just threw up". Those words took my breath away. He NEVER throws up...what could be wrong. "Is he sick, is their something wrong with his heart..WAIT..did he just giggle??? WHAT IS GOING ON!!!" He just lets me go off, naming every possible thing that could have caused his vomiting...TWICE on Thanksgiving night. "Could it be the flu again? His numbers were high, could it be a heart issue? Maybe the milk was bad...I did leave it out a little long." Oh GREAT...now I can add more guilt to my aching box of emotions.

I am still coming to terms with the fact that I don't know Xavier's future. The cold slap of reality is I often lay in bed and wonder "How long will he live". I don't say it out loud. It is not a discussion I have with Nate or with my mom. I have never spoken those words out loud..not even when he was at his sickest. But that questions is what keeps me up at night, what makes me cry when I am rocking him to sleep. It is a question that I present to God in my prayers at night..begging for mercy for my child and my family.

I often wonder if he will be happy despite the pain he will live with. "Will he be resentful that his life will be harder then most. Will he cry when the other boys are playing football and he just can't keep up. Will he fall in love...is there a woman who would commit to loving someone who is living on borrowed time. Will his heart be whole again someday. Will God bless us yet again with a cure, a way to grow his left heart...Will he need a transplant..Is that the answer? Are stem cells the answer? Are we doing enough to bring awareness. Are we fighting for research that could save him and millions like him?" Why is it that everyone knows what leukemia is, but no one has heard of HLHS or TOF..or the 33 other CHD's.."what is a chd?" is a question that I hear way to often...More children die each year from CHD's then from all childhood cancers combined..yet pediatric cancer research gets 5 times the funding..does that seem right to you??????

In the end, my ache will never leave me. No matter what the outcome. Transplant, miracle treatment, post fontan heart..I will always feel this pain. Xavier will never be "fixed"..because their are always complication with how his heart was made. His entire body is compromised because of his heart..his other organs. He is on medication to help his heart, but it could hurt his kidneys, his bones...so we monitor them. Post Fontan circulation could have an adverse effect on his liver..so as he grows we will be watching that. His circulation is what makes it hard for him to eat, to go to the bathroom..his development is delayed because of the extended hospital stays, the timing of his second stage and his exposure to bypass and anesthesia at only 4 days old....so much stacked against one little person. Its almost too much for a mom to take...I feel like I might be crushed by the weight of it all,

BUT THEN......

Xavier with his cousin Jackson!

Things just don't seem so bad when he smiles..cause I have my baby boy..he is happy. His body is a beautifully flawed, perfect machine that continues to amaze us all!!! In the end that is all that matters!!!

Handsome Men at Thanksgiving! Xavier and his cousin Dan

A play date with Lily and Violet (Lily is 6 living with HLHS)

Fun and HOPE all in the same day!!

"This play room is HUGE!!"

Xavier and Violet

Some members of Team X sent in pictures of them wearing their shirts!!! SUPER CUTE!!

Xavier was hoping to finally trick or treat for the first time this year..however, Sandy had a different idea. Our trick or treat was moved to today...the day of the snow storm..so we decided to dress him up and show him off via the blog.

Xavier is in a HLHS baby costume contest. If you are on facebook, please click the link below and like his picture..and while you are there, check out the other HLHS cuties.

Other Xavier news...our little warrior has just started swimming lessons. I was so worried that he would not like it, but we decided that we needed to start exposing him to other kids and other activities in a controlled environment. So with the blessings of his cardiologist, we started Aqua Tots at the Newtown Athletic Club!! He loved it, and we are excited to go back this week. Please enjoy the pictures below!!