Xtra Special Heart: June 2012

Friday, June 8, 2012

Blessed are those who mourn...

"Blessed are those who mourn, for they will be comforted" Matthew 5:4

We often think of mourning as something we do when we have lost someone..someone who made a difference in our life. Someone who, when they are gone, leaves a hole in our hearts. I have mourned many people in my life. Two grandfathers, a grandmother, a few friends...Xavier. I know it sounds horrible...I mourn the loss of someone who is still the center of my life. Am I wrong for mourning for the little boy that I just rocked to sleep?? The word mourning takes on a different meaning when you get a diagnosis like HLHS.

I assumed that my child would be healthy. I think any expectant mother does. You get a little ball of nerves when you go in for the next test, or the next ultrasound, but you expect to have a healthy baby...those kind of things just don't happen to YOU!!! I will never forget the sound of the doctor clearing her throat as she took a seat to talk to us. "I just don't like the look of his heart" she said...from that moment on..I began to mourn. I mourned the loss of a normal, worry free pregnancy. I mourned the loss of a "normal" birth. I mourned the loss of my dream of showing off my week old baby to family and friends. I gave up being able to hold my baby during that important "bonding" time. I was unable to breast feed, unable to get new born pictures taken, unable to allow people to hold him, to visit him, unable to be his Mommy in the way I NEEDED to...and I HAD to mourn all of those things.

As a parent to a child with CHD I find myself morning things that may or may not happen, years from now. Will he ever know what it is like to wreck his bike, play with his friends in the pool, win the spelling bee at school, get his first kiss, go on a date, graduate high school, get drunk for the first time (NOOOOOO!!!), dance with his mother, go to the prom, get married, have a child...WILL HE EVER??? There is a very strong possibility that he will get to do all these things and more...and there is also a chance that he will not...and it is that bit of doubt that causes me to mourn...

but I think what we really end up mourning the most is the loss of "normal". We talk about it to each other so much...just when you think things are normal CHD grabs you by the shoulders, shakes you hard and reminds you that nothing is normal about having a child with half a heart. I promise you that I think about his heart once an hour...all day, every day! I mourn relaxation, sleep, the ability to completely let go...and in the same breath I can say with 100% conviction that I would not change it for the world...this path, this struggle, this mourning is mine. If I could, would I fix his heart..well of course I would..but not even in my day dreams is that possible..so what I have decided to do is give myself permission to mourn, to cry, to scream if I feel like it..but what I will not allow myself to do is give up!! I will not allow HLHS to win..I will not allow it to take any more from Xavier then it has already taken. I am going to do my best to mourn and move on. I will do my best to give X a "normal" life..because after all HLHS is his normal..he has never known anything else. I am sure I am going to be over protective..and when the time comes and he can't do something that the other kids are doing or when he starts to feel different, I will mourn with him that loss. However, I will celebrate with him his strength, his scar, his bravery..I will celebrate with him what makes him special and its not just his special heart. Our load is heavy...and it makes us strong with each passing second. I mourn the loss of those things never known...and celebrate those things I never imagined in a million years would be mine...how blessed this mourner is!!

Sunday, June 3, 2012

ONE ROCKS!!!

Well ladies and gentlemen...we made it. Xavier is ONE!! When we got his diagnosis, this was not even in the realm of possibilities. The first birthday is a huge deal for any parent..but the parents of a heart kid..it is HUGE!! And we plan on celebrating HUGE...we already had a party in PA with my family. We have a NJ party planned in June and a MA party planned in July..that's right..three months of parties!!

First, first birthday cake!!

I am not so sure about this BIG Mickey...

NOPE..I DO NOT like this BIG Mickey!

Now..WHAT is this??

YUCK!!

FOR ME??

What a great card!!!

As we celebrated Xavier's first birthday we also celebrated his heart anniversary. On June 1st is was a year since his first open heart surgery. We celebrate and morn that day. It was day that he was saved..the day his chest was scared and the day that I was forever changed. I really have no idea where the strength came from that allowed me to lay him down on the big stretcher and let a team of doctors in scrubs, hair nets and masks take him away.....but we found that strength and thank God we did because we have had to do it a few more times...and we will need to do it again.

Fresh out of surgery..one year ago

It is so easy to get lost in my self pity. I do pity myself. I get jealous and envious of other mothers who have "normal" births and health babies. Please don't get me wrong, I don't wish a sick baby on anyone..I just wish that Xavier's heart was healthy..and can you blame me. I get caught up in the why me...in the worry and anxiety. I get mad at God and question what I did or why he is punishing me. Xavier doesn't eat and I panic, he sneezes and I panic, he coughs and I panic...so I pretty much panic ALL the time. I cry to my mom that I can't do it. And then I hang up the phone and I do it. It is so easy to get lost in the sadness of HLHS...but we are so blessed and 100% stronger then we give ourselves credit for!

Xavier has always kick HLHS in the butt!! He has always responded well to surgery. He has, for the most part, had an easy recover (with the exception of that silly air/blood in his chest). He has never needed to be put back on bypass or the ecmo (heart/lung machine). He has come back from both OHS with his chest closed, got off the vent pretty quickly, only had to have the NG for three months and has always had pretty good heart function. Of course he has a leaky valve (which almost everyone that I talk to says their HLHSer is the same) but as of now it is not causing any issues and the doctors think that the final surgery will remedy that. He is still a little behind in gross motor skills, but cognitively he is way ahead...he is a smart cookie! He is struggling a little with solid foods, but I am getting a ton of encouragement from other HLHS mothers who say.."Give it time" ...so that is what I will do. I have become very patient over this past year...remind me to thank Xavier for that one too!!!

So many other little heart babies struggle so much or have lost their battle. Some are in the hospital for months at a time. We are blessed...so please ask God to be with the families of these little ones who are fighting for their lives....or those who have gone to heaven to play.

NOW..what can I tell you about one year old X..well he loves to play with his stacking cups. He is currently getting his two front teeth, so he it biting everything including my chin!!! He loves to play his bongo drums and he plays with shape blocks. He enjoys splashing in his baby pool but only when Mommy sits in there with him (so I do).

He jumps in his jumper like he is going to take off. He has started sleeping through the night and even putting himself to sleep. The last few nights he has started sleeping on him tummy and even crawling in his sleep, so I think we may have a crawler on our hands. We have noticed him putting more weight on his legs and arms. He really only likes to eat in his highchair. We take a walk almost everyday at the park. He enjoys the swings and just the other day his Daddy took him down the slide. He is now drinking whole milk. He loves yogurt, oatmeal, chicken noodle soup, all fruits and most veggies. He HATED his first birthday cake. Just yesterday he had a few bites of ice cream and seemed to like it. He is a love bug and gives Mommy a ton of hugs. He now leans in for you to kiss him. He waves, nods his head and points. He say mamma and dadda and means it. He is funny and sweet and has a little attitude...He is a beautiful combination of Nate and me. He is a warrior, a rock star and my best friend. HAPPY BIRTHDAY XAVIER...ONE ROCKS!!!!